Daily life of persons with dementia and their spouses supported by a passive positioning alarm

Daily life of persons with dementia and their spouses supported by a passive positioning alarm

To my beloved Niklas and our children Sebastian and Christoffer

Örebro Studies in Care Sciences 44

ANNAKARIN OLSSON

Daily life of persons with dementia and their spouses supported by a passive positioning alarm

© Annakarin Olsson, 2013

Title: Daily life of persons with dementia and their spouses supported by a passive positioning alarm.

Publisher: Örebro University 2013

www.publications.oru.se [email protected]

Print: Ineko, Kållered 04/2013

ISSN 1652-1153 ISBN 978-91-7668-925-7

http://www.publications.oru.se/

mailto:[email protected]

Abstract Olsson, A. (2013): Daily life of persons with dementia and their spouses supported by a passive positioning alarm. Örebro Studies in Care Sciences 44, 81 pp. The overall aim was to describe how persons with dementia (PwDs) reflect on being outdoors and to investigate the support provided by a passive positioning alarm (PPA) in making daily life safer for PwDs and their spouses. Repeated conversations were held with 11 PwDs living in their own homes regarding their reflections on being outdoors (Study I). Interview study with 14 spouses to a person with dementia (PwD) with their reflections on dif-ferent kinds of information and communication technology (ICT) devices that were used or can be used in the daily care of PwDs (Study II). An eth-nographic approach with participant observations and conversations with five couples, a PwD and his/her spouse, describing and exploring their use and experiences of using a PPA, over time, in daily life (Study III). An ex-perimental single-case ABAB-design with three cases, a PwD and his spouse, investigating the effects of using tracking technology on independ-ent outdoor activities and psychological well-being (Study IV). In summary, the results of the thesis show that being outdoors was de-scribed by the PwDs as a confirmation of their identity, the `Self´. The use of ICT in daily care of PwDs was described by the spouses as shifting be-tween their own needs for safety and security and the perceived need for safety and security from the perspective of the PwD. The use of a PPA in daily life among PwDs living in their own homes can give a sense of free-dom, support and strengthen the feeling of independence for both PwDs and their spouses as well as give a feeling of safety and security for them both. Use of the PPA may also increase PwDs’ independent outdoor activi-ties and decrease spouses’ worries.

Keywords: Information and communication technology (ICT), person with dementia (PwD), spouses, outdoor activities, experimental single-case, interviews, participant observation, qualitative research, passive positioning alarm (PPA). Annakarin Olsson, School of Health and Medical Sciences, Örebro University, SE-701 82 Örebro, Sweden, [email protected]

CONTENTS

ORIGINAL PAPERS .................................................................................. 9

ABBREVIATION ..................................................................................... 10

INTRODUCTION ................................................................................... 11

BACKGROUND ...................................................................................... 12 Living with dementia................................................................................ 12

Social Construction Theory.................................................................. 13 Dementia diseases ................................................................................ 14

Being a relative to a person with dementia ............................................... 15 Information and communication technology in healthcare ...................... 17

Ethical aspects of using tracking technology in dementia care ............. 18

RATIONALE ........................................................................................... 20

AIMS ....................................................................................................... 21

METHODS .............................................................................................. 22 Design ...................................................................................................... 22 Sample and setting ................................................................................... 23 The intervention ....................................................................................... 25 Data collection and procedure ................................................................. 28 Data analysis ............................................................................................ 32 Ethical considerations .............................................................................. 34

SUMMARY OF RESULTS ...................................................................... 35 Study I ................................................................................................. 35 Study II ................................................................................................ 38 Study III............................................................................................... 41 Study IV ............................................................................................... 42

DISCUSSION ........................................................................................... 45 Summary of main findings ................................................................... 45 The value of being outdoors for persons with dementia ....................... 46 Problems and strategies related to being outdoors: perspective of person with dementia and spouses................................. 47 Value and ethical aspects of the passive positioning alarm (PPA) ......... 49 Development of the PPAP .................................................................... 50

Research ethics ......................................................................................... 52 Methodological considerations ................................................................ 53

Trustworthiness ................................................................................... 56

Internal and external validity ............................................................... 57 Implication for practice ............................................................................ 58 Future research ......................................................................................... 58

CONCLUSIONS ...................................................................................... 59

SAMMANFATTNING PÅ SVENSKA ..................................................... 60

ACKNOWLEDGEMENT ........................................................................ 62

REFERENCES ......................................................................................... 64

ANNAKARIN OLSSON Daily life of PwDs and their spouses supported by a PPA 9

ORIGINAL PAPERS This thesis is based on the following original papers, which will be re-ferred to in the text by Roman numerals.

I. Olsson, A., Lampic, C., Skovdahl, K., Engström, M. Persons with early-stage dementia reflect on being outdoors: a repeat-ed interview study. Resubmitted.

II. Olsson, A., Engström, M., Skovdahl, K., Lampic, C. My, your and our needs for safety and security: relatives’ reflec-tions on using information and communication technology in dementia care. Scand J Caring Sci 2012; 26:104-112.

III. Olsson, A., Engström, M., Lampic, C., Skovdahl, K. A pas-

sive positioning alarm used by persons with dementia and their spouses – a qualitative intervention study. BMC Geriatr 2013; 13:11.

IV. Olsson, A., Engström, M., Åsenlöf, P., Skovdahl, K., Lampic, C. Effects of tracking technology on daily life with dementia-three experimental single case studies. Submitted.

Reprints have been made with the permission of the publisher.

10 ANNAKARIN OLSSON Daily life of PwDs and their spouses supported by a PPA

ABBREVIATION AD Alzheimer’s Disease

GPS Global Positioning System

ICT Information and Communication Technology MMSE Mini Mental State Examination

PwD Person with Dementia PwDs Persons with Dementia

PPA Passive Positioning Alarm

PPAP Passive Positioning Alarm Package


INTRODUCTION The point of departure of the present thesis is a collaborative project be-tween the University of Gävle, the municipality and a small business manu-facturer. The aim of the project was to develop a passive positioning alarm (PPA) to support daily life for persons with dementia (PwDs) living in their own homes and their spouses.

For some PwDs, the value of being outdoors has been shown to lead to increased well-being and enhanced quality of life. However, for a PwD, spending time outdoors independently may demand some support, due to symptoms accompanying the disease, e.g., memory loss. Use of infor-mation and communication technology (ICT) could be a way to support both PwDs and their spouses in terms of their feelings of safety and securi-ty. The use of ICT could also enable PwDs to remain in their own homes longer. It is predominately the perspectives of relatives and health care staff that have been described in previous research on experiences of using ICT. Therefore, the PwD’s perspective has been important to include in the present thesis.

My experience, in both Sweden and Norway, of working as a nurse with older people and PwDs and my experience of working as an engineer with Geographic Information Systems are what piqued by interest in do-ing this research.

Èither write something worth reading or

do something worth writing.´

Benjamin Franklin 1706-1790


BACKGROUND

Living with dementia Dementia results in some or several losses of a person’s abilities, and the inevitable progression of the disease will increase these losses. However, the progression of the disease follows a unique course for each person. Eventually it is fatal (1).

PwDs’ own experiences of living with the disease involve descriptions of being forgetful, feeling lost in a `strange and unfamiliar world´, less personal dignity and value, experiencing regret and sadness as a conse-quence of the disease (2-6) and of limited value to society (7). In an inter-view study by Steeman et al. (8) PwDs reported that their activities slowed down, meaning that simple everyday tasks were experienced as very de-manding and as hovering between being of value and being worthless. A meta-synthesis of qualitative studies (9) revealed that memory loss as a consequence of the dementia disease threatened PwDs’ perceptions of security, autonomy and being a meaningful member of society. Memory impairments resulting from the disease were difficult to deal with and caused frustration, uncertainty and fear (9-12). Problems with memory and decline in cognitive abilities have also been shown to lead to wayfind-ing difficulties, such as not finding one’s way back home while outdoors (13).

Several negative aspects of living with dementia have been revealed, however factors that have a positive influence on quality of life and well-being among PwDs include, e.g., being outdoors (14,15) and having social contacts (10,16-18). Being outdoors in a natural environment has been shown to have a direct and positive impact on humans’ well-being (19-21). In their theory, Kaplan and Kaplan (22) emphasize that natural envi-ronments are particularly rich in the characteristics necessary for restora-tive experiences. The benefits and experiences of being outdoors for PwDs have mainly been described from the perspective of staff at residential homes for PwDs, where being outdoors was reported to be valuable in, e.g., decreasing aggression and improving socialization (20,23,24). How-ever, some interview studies with persons living in their own homes (14,15) have revealed that being outdoors was seen as valuable for emo-tional well-being, interacting with other people and maintaining quality of life. In their interview study with PwDs and their spouses, Cedervall and Åberg (25) found that physical activity, e.g., walking, seemed to be an important routine in everyday life, and one driving force behind taking walks was enjoyment of nature and physical exercise. The benefit of phys-


ical activity has also been shown to be valuable in delaying or preventing the onset of common chronic diseases, such as dementia (26-29). Research has also shown that keeping up social contacts is beneficial and that it is perceived by PwDs as valuable (16-18). Moreover, Cahill et al. (30) found that contact with other people was seen as a major source of well-being for PwDs. Despite the impact of dementia and the experiences of loss resulting in multiple “destructive” emotions (31-33), PwDs do not ap-proach the disease passively (34), but use both emotion-oriented and problem-oriented coping strategies to deal with its challenges (5,6,31,35-37). However, loss of some abilities – e.g., difficulties in communicating and engaging in meaningful social activities (16-18) – may result in loss of independence (38) and thus affect the person’s identity.

Social Construction Theory According to Rom Harré’s Social Construction Theory (39), a person’s selfhood can be expressed in terms of three selves: Self 1, 2 and 3. Self 1 refers to one’s experiences of psychological continuity and is manifested in the use of personal pronouns; I, Me, My and Mine. These pronouns are used to locate for others the sources of our attitudes, beliefs and experi-ences (cf. 40). Self 2 refers to one’s past and present attributes, beliefs and one’s beliefs about one’s attributes. These attributes might include abili-ties, physical and psychological characteristics that one is particular proud of, e.g., being a happy, positive person, or does not like, e.g., having a dementia disease (39). Finally, Self 3 is the public personae manifested with the help of others in our social world (40,41). Through narratives, we tell our life stories, what we believe, think and what we are (I am). In a recently published interview study by Hedman et al. (42), aimed at de-scribing how persons with AD express their sense of self, the persons with AD described Self 1 as being intact (cf. 43), that Self 2 had undergone changes (cf. 44) and Self 3 as being supported by others, but sometimes exposed to malignant positioning (cf. 41,43,45,46). Kitwood (47) also considers that PwDs do not lose their personhood, and maintain it through their relationships with other people. Within the concept of per-son-centred care, the personal and social identity of a PwD is partly formed by what is said and done to them (cf. 40). Findings from MacRae (48) indicated that persons with AD revealed no concerns for the potential loss of their self. A systematic review by Cadell and Clare (44), however, showed variation in conclusions regarding whether or not PwDs had a sustained self during the progression of the disease. Qualitative interview studies with PwDs included in the review revealed that they perceived a sustained self, but this was not confirmed in some quantitative studies


(44). However, in their interview study with 10 persons with early-stage dementia, Caddell and Clare (49) found that the PwDs’ self was marked by a tension between a prior sense of self and perceived changes to it.

Dementia diseases Dementia is not a disease itself, but an umbrella term for a group of dis-eases (1). At present, approximately 36 million people are suffering from different kinds of dementia diseases worldwide (50), and the most com-mon form is Alzheimer’s disease (AD) (51,52). Dementia is a mental dete-rioration that affects the brain, with typical symptoms including impair-ment of memory, thought, perception, speech, spatial ability and reason-ing, and it usually involves having more than one of these symptoms (53). Dementia diseases are progressive and chronic (54), but can be treated with medication to slow down their effects (55,56). All PwDs are not helped by pharmacological treatments, which stress the need for non-pharmacological treatments in the context of care (57-60). Memory prob-lems are very common in all dementia diseases, but are the hallmark of AD (61), resulting in the person forgetting recent conversations, repeating themselves and/or having difficulty making decisions.

Dementia diseases do not only affect older persons, but also younger people (aged > 65 years), in which case daily life might still involve living with the family, having younger children, employment and economical responsibilities for a family (62). Thus, younger PwDs have other needs, in addition to struggling with the same challenges as older PwDs (63-65).

There are various stages of dementia, each of which can be classified as mild, moderate and severe (66). Mild dementia, sometimes mentioned as early stage dementia, usually means that the person is able to manage most of his/her daily life, with support from relatives. As the condition progresses to the moderate stage, the person will need more help in man-aging daily activities such as eating, washing, dressing and using the toilet (67). During the severe stage, the person becomes extremely dependent on others around them for support in managing daily life (68,69) and, during this stage, many are forced to change their living situation (70,71).

The Swedish healthcare system for the living situation of PwDs is orga-nized in units for short-time care or in residential homes for PwDs (72). The municipalities offer daytime activities, which vary in organization and extent, for older and/or disabled people in need of stimulation and reha-bilitation, regardless of their living situation (73). Older persons with disabilities living at home can, after needs assessment, receive assistance around the clock (home-help service), which means that many can remain at home their entire life (74).


Given the decreased number of places in units for short-time care and in residential homes for PwDs (73), the trend in Sweden is that most PwDs remain living in their own homes for a long time, alone and/or to-gether with a relative. Therefore, becoming dependent on others to man-age daily life is a reality for many PwDs.

Being a relative to a person with dementia Living with a chronic disease like dementia can be devastating for those affected and for their relatives (75). Many PwDs wish to, and do continue to, live in their own home, which requires varying degrees of help from their relatives. Research has shown that informal carers are the largest group of people involved in the daily care of PwDs (76), and being a relative of a PwD often means becoming an informal caregiver. The majority of the PwDs living at home are provided with daily care, primarily from a spouse (cf. 75,77). In the present thesis, the concept of spouse will henceforth be used and seen as equivalent to partners (unmarried couples living together).

Daily care for a family member, especially one with dementia, exposes the caregiver to considerable risk of experiencing stress, feelings of bur-den, poor health, grief and lower quality of life (77-84). The burden expe-rienced by spouses tends to increase as the dementia disease progresses (85), and their life satisfaction becomes increasingly related to the PwD’s state of mind and dependency (86). The amount of time spent on caring for one PwD has been shown to be approximately 10 hours a day for relatives (76). Relatives also tend to sacrifice their own hobbies in favour of taking care of their PwD (87,88). Keeping up with one’s own activities outside the home may also be difficult for spouses, due to, e.g., the risk that the PwD might leave the home unaccompanied. This particular diffi-culty is often part of the reason for relatives’ feelings of fear and insecurity (89). Being more independent from the person with dementia was shown to improve the relative’s quality of life (90).

The negative aspects of caregiving for persons with dementia (88,91,92) tend to receive most attention, but caring has also been shown to be associated with positive feelings and outcomes (75,93,94). Sanders (95) reported that between 55% and 90% of caregivers had positive expe-riences of caregiving, i.e., enjoying togetherness, sharing activities, feeling a reciprocal bond, spiritual and personal growth, increased faith, and feelings of accomplishments and mastery.

A quantitative study by Andrén and Elmståhl (96) revealed that a large proportion of caregivers expressed satisfaction, as caregiving provided a new purpose in their lives and they experienced pleasure from seeing that the person being cared for was happy.


As the symptoms of dementia develop, however, many relatives fear that the person they care for will get lost (10,13) and/or become dis-tressed, vulnerable and/or exposed to danger (97-99). According to Swe-dish regulations (100), it is not legal to deprive PwDs living in residential homes and in units for short-time care of their liberty by using, e.g., locked doors, alarms, etc. Studies have shown, however, that different kinds of physical restraints are commonly used in the care of PwDs (101,102). For PwDs still living in their own homes, locking doors may be a necessary action for relatives to perform, due to the problem of the PwD wandering away from home and/or getting lost (13,103). Concerns that the PwDs may get lost and/or wander away from home may cause infor-mal carers to decide that they can no longer manage to look after the person at home (104). In a study by Wimo et al. (76) relatives reported that a great deal of time is spent on supervision of their PwD, which might mean that the informal carer locks the person in the house, thus restricting his/her freedom (105). The possibility of a PwD getting lost was cited as a major reason why relatives seek residential placement (70,106). Different kinds of support are needed, and one way to meet the needs of PwDs and relatives in daily life might be to use information and communication technology (ICT).


Information and communication technology in healthcare In the present thesis, some technical expressions will be used and these must be defined. Information and communication technology (ICT) is a `broad concept´ of technologies enabling people to communicate, gather information and interact with distant services, faster, easier and without the limit of space. ICT is also an umbrella term that includes communica-tion devices or applications encompassing: radio, television, cellular phones, computer and network hardware and software, satellite systems and so on, as well as the various services and applications associated with them, such as videoconferencing and distance learning (107). Assistive Technology (AT) was cited by the US Assistive Technology Act of 1998 as “technology used by individuals with disabilities in order to perform func-tions that might otherwise be difficult or impossible” (108). The UK King’s Fund consultation meeting proposed the following definition: “As-sistive Technology is any product or service designed to enable independ-ence for disabled and older people” (109). Several million people are esti-mated to use AT devices for mobility, communication, and assistance with performing activities of daily living (ADL). AT is often promoted as a means of retaining autonomy and quality of life for older people (110), including PwDs (111), as AT might help them continue to be independent and live safely in their own home (112-118). ATs are diverse and could be used for supporting relatives or as a potential solution in professional care for PwDs (119-121).

Tracking and tagging technology are examples of two different kinds of AT, also subsumed under the heading ‘surveillance technology’ (114-116,122,123). Surveillance technologies commonly used in the care of PwDs are safety, bed, door and passage alarms (e.g., 124,125). Tagging technology detects when a person leaves a predefined area (122,126). Tracking technology, e.g., passive positioning alarms (PPA), on the other hand, is based on a global positioning system (GPS) and is able to show the exact position of the tracking device (and the person wearing the de-vice) on a digital map. The difference between more typical tracking tech-nology and the PPA is that the PPA involves a hidden zone, that is, the person is not visible until he/she leaves a predefined area. Another differ-ence between the PPA and other kinds of tracking technology is that the PPA constantly sends a position. Furthermore, the PPA sends an alarm to a mobile phone (thus, not to a stationary receiver), which allows the re-ceiving party to see the alarm signal regardless of where he/she is physical-ly located (thus, not just while at home). Starting from the definition used in the present thesis in the methods, results and discussion sections, the term that will be used is passive positioning alarm (PPA).


Previously, researchers focused on tagging technology, but nowadays tracking via GPS is widely used in the care of PwDs because of the possi-bility of real-time navigation.

The main motivation behind the use of tracking technologies in the care of PwDs has been to create secure environments for the PwDs (127,128) and reduce the problems of relatives for those PwDs still living at home (129,130). In addition, tracking technologies might be helpful in delaying the move to a nursing home and provide relatively cheap solutions for remote monitoring of PwDs. Studies have also shown a tendency for tracking technologies to enhance feelings of safety, less fear and anxiety (116,131) and sense of independence (127) among PwDs and relatives. Studies have shown that relatives have more interest in tracking technolo-gies and perceive them to be more useful, both for their own peace of mind and for the safety of the PwD, than do health care staff (131,132). These kinds of technologies may be used to reduce the very real risk of PwDs getting lost, thereby providing peace of mind for relatives (116,131). However, both relatives and health care staff agreed on the point that caring for PwDs with the support of tracking technologies is an internal family matter (131). Increased use of tracking technologies in daily care of PwDs may give rise to significant challenges that need to be discussed e.g., ethical and decision-making issues (126,133,134).

Ethical aspects of using tracking technology in dementia care A tracking system may allow PwDs to walk more freely and reduce the need for more restrictive methods, such as locked doors or restraint (105). However, tracking technology may have the potential to decrease auton-omy and restrict movement (131). The right to personal health and safety, versus the right to privacy (133,135) and dignity (126,136), also stand out as conflicting values in using tracking technologies in dementia care (115). Some see the GPS location of a person and transmission of this infor-mation to a central computer as an inherent invasion of privacy that threatens personal integrity, autonomy and liberty (126,134,137). At the same time as tracking technologies may have great potential, it appears to be important to consider who will gain by using them: is it the person being tracked (135,136), the relatives who feel more secure (137,138), or perhaps both? Using tracking technology also raises the question of who will decide whether and how it can be used, as well as whether it can be forced on people (139). Studies describing the opinions and experiences of using tracking technologies, from the perspective of healthcare staff and relatives, have revealed that both negative and positive attitudes exist. Positive attitudes expressed by both healthcare staff and relatives were


related to an enhanced feeling of safety and security as well as reduced fear and anxiety (116,127). Healthcare staff, however, pointed out that there may be a risk that the use of tracking technologies will lead to in-human care (132,140). The underlying assumption of many tracking technologies is that they can act as a safety precaution by allowing rela-tives to monitor the PwDs when they are alone outdoors (131,132). How-ever, more awareness of the limitations of the tracking technology is need-ed (e.g., 123,133).


RATIONALE The value of being outdoors for PwDs has been described (14,15) and at the same time fear has been expressed by both PwDs and spouses that the PwD might get lost and/or not find his/her way back home while alone outdoors (13,25). If the wish is to be able to live in one’s own home and maintain independent living throughout their lives, both PwDs and spous-es need to be supported in the best way possible. From the perspective of PwDs and their spouses, it is therefore important to investigate whether and how tracking technologies could be supportive in daily care.

In several studies (114,123,127,132,141) and project (142-144), collec-tive efforts have been made to develop different kinds of ICT for PwDs and their relatives living at home. The aims have been to investigate whether it is possible, with the support of ICT, to facilitate an independ-ent life for PwDs living at home and to promote well-being, safety and security for both PwDs and relatives. Studies in which tracking technolo-gies for PwDs have been tested and evaluated have mostly included the perspective of relatives and health care staff (127,129-131). However, some quantitative studies exist that have examined the use of tracking technologies from the perspective of PwDs living at home (128,145). A limited number of qualitative studies have also been conducted in which experiences of tracking technology have been explored and/or described from the perspective of PwDs living in their own homes (115,116,123). Other studies on the use of tracking technologies do exist. However, they have either included cognitively intact older persons (e.g., 133,146,147) or PwDs living in residential homes (e.g., 148,149).


AIMS The overall aim was to describe how PwDs reflect on being outdoors and to investigate the support provided by a passive positioning alarm in mak-ing daily life safer for PwDs and their spouses.

Specific aims of the studies were:

I. To describe how persons with early-stage dementia reflect on being outdoors.

II. To describe relatives’ reflections on different kinds of infor-mation and communication technology (ICT) devices that are used or can be used in the daily care of PwDs.

III. To describe and explore the use and experiences of using a

passive positioning alarm, over time, in the daily life of PwDs and their spouses.

IV. To investigate the effects of using tracking technology on in-

dependent outdoor activities and psychological well-being in three individual cases, i.e. PwDs and their spouses.


METHODS The present research has used both qualitative and quantitative approaches. The research questions have guided the choice of methods. The qualitative approach has been given greater weight, as it is useful when investigating the reflections and experiences of individuals (150).

Design In Study I and II, a descriptive design was used, and in Study III a descrip-tive and explorative design with an ethnographic approach was used. In Study IV an experimental single-case design was used. In experimental single-case designs, the selected outcomes are measured daily both during a non-intervention period (Phase A) and during an intervention period (Phase B) (151). An overview of the studies is shown in Table 1.

In Study I, the PwD’s reflections and experiences of being outdoors were sought, and Study II focused on the spouse’s experiences and/or perceptions of a PPA, but also other kinds of ICT to support daily care of a PwD. PwDs’ and spouses’ expressions of value and acceptance of the PPA were the foundation of Study III and IV, where the PPA was used by PwDs and their spouses and the effects of the PPA were measured.

Table 1. Overview of the study design, sample, data collection and analysis methods used in the thesis Study Design Sample Data collection Data analysis I Descriptive PwDs n=11 Repeated

individual inter-views (n=22)

Manifest and latent content analysis

II Descriptive Spouses to

PwDs n=14

Individual interviews

Manifest and latent content analysis

III Descriptive and

explorative with an ethnographic approach

Couples (a PwD and his/her spouse) n=5

Repeated observations and interviews (n=27)

Manifest content analysis

IV Experimental

single-subject Couples (a PwD and his spouse) n=3

Interviews, structured instruments and diaries

Visual Inspection and statistical analysis


Sample and setting The setting for Study I, III and IV was the participants’ own homes. For Study II, all spouses of PwDs lived in their own homes. However, some of their PwDs lived in either their own homes, units for short-time care or in residential homes for PwDs. Variation in age and sex was the goal in se-lecting participants for all studies. Furthermore, variation in mobility (Study I) and living situation (Study II) were aimed at. The Relative Care-givers Support Centre in a municipality in central Sweden (Study I-III) and healthcare staff at the memory unit within the county council (Study IV) helped recruit participants for the studies. Participants in all studies were able to communicate verbally in Swedish. In Study III, two couples includ-ed a PwD who had also participated in Study I. Additional characteristics of the participants are presented in Table 2.

In Study IV, the PwDs needed help/support with Instrumental Activities of Daily living (IADL) and Activities of Daily living (ADL). The spouses estimated that they carried out a few hours of daily supervision of their PwD. The PwDs’ neuropsychiatric symptoms were scored by the spouses. The spouses also felt they were somewhat burdened.


Table 2. Characteristics of the PwDs and spouses (Study I-IV)

Study I Study II Study III Study IV PwD (total n) 11 5 3 Male 6 8 3 3 Female 5 6 2 Age (range) 52-81 62-90 55-73 72-76

- ≤ 65 years 3 3 1 - 66-70 years 4 1 2 - 71-75 years 2 3 2 3 - 76- 80 years 1 2 - 81- years 1 5

Diagnosis - Alzheimer´s disease 11 11 5 3 - Vascular dementia 3

MMSE* (range) 21-28 19-28** - Mild dementia [≥20] 11 4** - Moderate dementia [19-10] 1** - Severe dementia [≤9]

Mobility - Without help 7 5 3 - Cain 2 - Walker 2

Daytime activity program 2 3 1 Living condition - Own home, together with spouse 9 10 5 3 - Own home, alone 2 - Unit for short-time care 2 - Residential home for PwD 2 Spouses (total n) 14 5 3 Male 5 6 2 Female 6 8 3 3 Age (range) 61-80 62-89 62-68 72-74

- ≤ 65 years 3 4 2 - 66-70 years 1 3 3 - 71-75 years 3 2 3 - 76- 80 years 2 1 - 81- years 4

PwD and/or spouses Housing area

- Urban area 2 7 2 - Rural area 9 7 5 1

Type of housing - terrace house 4 2 3 - detached house 3 3 1 1 - apartment 4 9 1 2 - access to summer cottage 5 2

(n) if nothing else is reported MMSE, Mini Mental State Examination (max value 30 points),* (152) **Values received from spouse


The intervention The intervention comprised a “package” with a passive positioning alarm (PPA) (transmitter and a receiver/cell phone), manuals for the PPA and cell phone and a support person involved in the project (Figure 1 - PPAP). The support person was a healthcare professional from the municipality with experience of working with PwDs and their relatives. The support person visited the participants (in some cases twice) in their own home, delivered the PPA, cell phone and manuals and provided a two-hour ver-bal instruction session. The support person was responsible for providing technical support throughout the study periods (III and IV). In Study I and II, the researcher showed and talked about the PPAP during the inter-views/conversations. The PPA is based on a global positioning system (GPS). The transmitter, about 10 cm in height, 5 cm in width, 3 cm in thickness and about 150 g in weight, was worn by the PwD when he/she was alone outdoors. The transmitter could be worn on a belt, in a pocket or purse, etc. The receiver (a cell phone) was used and carried by the spouse, regardless of whether he/she was at home or somewhere else. Before the PwD left the home (or other place), the transmitter was activat-ed by the spouse by pushing the big red button marked with a cross; this created a virtual fence with a radius of 500 meters (a predefined area). The virtual fence was changeable and could be individually adjusted. The PwD could also get into contact with the spouse with one push of a but-ton after programming in the spouse’s phone number. The transmitter also has a loudspeaker function. The spouse can get into direct contact with the PwD, who does not need to push any button to hear and talk to the spouse.

Figure 1. PPAP

manuals + + +


A passive alarm means that as long as the PwD stays inside the predefined area, no alarm is sent. The minute the PwD leaves the area, an alarm, in the form of a Short Message Service (SMS) containing a map, is sent to the spouse’s cell phone. Red dots representing the position of the transmit-ter are visible on the cell phone screen. The position of the transmitter is monitored every minute and sent to the receiver. If the PwD leaves the predefined area and then returns to it, the red dots remain visible on the screen, even inside the circle. Furthermore, an arrow is also seen on the cell phone screen, pointing out the direction of the transmitter, in case the spouse needs to find the PwD outdoors. The system also has built-in safe-ty features, so that when the transmitter battery is low, an SMS “Low Battery” is sent. The battery power was tested in the project group and was calculated to last about 36 hours. The location of a transmitter was monitored online through a service provided by the device manufacturer. Figure 2 presents a description of the system.

Figure 2. System description

Person with dementia with transmitter

Spouse with cell phone

Web server


The research project started in 2007 as collaborative effort of the munici-pality (the initiator), the University of Gävle and a business manufacturer. In the project group were the developers of the hard- and software, per-sons representing dementia care in the municipality and researchers from the University. Regular meetings were held approximately once every third month in the project group during the evaluation periods and less often between periods. The PPAP has undergone changes during the study period, and the changes proposed by the PwDs and spouses were used to improve and develop the PPAP. All the changes have been tested by the members in the project group and by healthy elderly couples without de-mentia; see Figure 3. The healthy elderly without dementia were recruited from a local district of the National Pensioners’ Organisation (PRO). PRO was contacted for volunteers that were willing to use and evaluate the PPAP. The healthy couples tested the PPAP after each improvement to the system, weekly notes were made and questionnaires were filled in (un-published data). Afterwards, group discussions were held (tape-recorded) to evaluate the changes, and finally the PPAP was introduced to and used by the PwDs and their spouses.

Figure 3. Test periods of the PPAP Figure 3. Test periods of the PPAP

Project group tested for 4 weeks

Healthy elderly: 6 couples tested for 6 weeks and 1 couple for 10

Project group tested-for 2 weeks

Healthy elderly: 4 couples tested for 4 weeks

Study IV

Study II

Study I

Study III

Evaluation and change of the PPAP

StudyII

Conclusion and prepara-tion for evaluation period

StudyIV

Evaluation and change of the PPAP


Data collection and procedure In Study I, repeated interviews were held twice with the PwDs in their own homes. The interviews were carried out in the form of a conversation (150). To get a picture of the outdoor environment in the informants’ neighbourhood in terms of its nature elements and to get a sense of the context in order to better understand when the PwDs described their re-flections on and experiences of being outdoors, the researcher walked around each informant’s neighbourhood prior to the conversations. To support the PwDs’ memory, conversations were performed partly or total-ly outdoors or near a window with a view of the outdoor area. All con-versations were tape-recorded and transcribed verbatim. Field notes were made by the researcher during and immediately after each conversation (150). The first conversation was conducted between June and October 2009 and the second between two weeks and three months later.

In Study II, data were collected through individual interviews with spouses, using open-ended questions (153,154). An interview guide was used (154) and questions were asked about: what kind of ICT devices the spouses used or had heard of, whether they could describe the devices’ functionality, what they thought about the ICT, how they had received information about ICT, their perception and experience of using ICT, decisions concerning use of ICT, and reflections on integrity and self-determination when using ICT in the care of PwDs. A computer presenta-tion with still pictures of and commentaries on the most common types of ICT used for older persons (i.e., door alarm, safety alarm, passage sensor and bed alarm) were shown during the interviews. The presentation was intended to create a common understanding of what ICT could look like and be used for. The PPA was also shown and supplemented with verbal information about other tracking technologies used in the care of PwDs. Data were collected during October 2007 – March 2008.

In Study III, data were collected through repeated participant observa-tions and informal conversations (150) with the PwDs and the spouses, at five to seven occasions per couple. The main focus of the observations and conversations was on how the PwDs and spouses experienced using the PPAP. A co-observer participated in 17 of the 27 data collection occa-sions, the aim being to allow one observer to accompany and observe the PwD on his/her outdoor walk, while the other observer observed and had an informal conversation with the spouse. Two weeks before the start of data collection, the participating couples received their transmitter, manu-als for the transmitter and cell phone along with a two-hour verbal in-struction session provide by the support person involved in the project.


During the instruction session, the couples were able to test the PPA, ask questions and read the manuals.

The first two data collections (test observation, also included in the analysis) were carried out with the same couple, where two researchers were present and independently made notes. The notes were transcribed and compared. Data collection was then carried out according to the fol-lowing plan: together with the PwD and the spouse, appropriate observa-tion times were identified – times when the PwD usually wants to go or went out on his/her own. When the PwD left the home for the independ-ent outdoor walk, the co-observer or the researcher followed along (data collected but not analysed). All subsequent data collection occasions fol-lowed a specific pattern. First a joint informal conversation with the PwD and his/her spouse took place, where the couple summarized what had happen in their daily life, in relation to use of the PPAP, since the previous data collection occasion. Then the PwD went for an outdoor walk, during which time an informal conversation was conducted with the spouse in the home. The outdoor observation focused on how the PwD behaved in the physical environment, and a conversation was also held with him/her during the walk. Finally, when the PwD returned home, a joint informal conversation was held with the PwD and his/her spouse, focusing on the former’s experiences of the outdoor walk, in relation to use of the PPAP. The researcher made continuous notes after the data collection occasions. The observations and conversations were tape-recorded and transcribed verbatim. Data collection was done during October 2010 – March 2011.

In Study IV, data were collected during May 2011 – October 2011 us-ing an experimental single-case A1B1A2B2 design (151) involving daily measures of three couples. Phases A1 and A2 were the non-intervention phases, and B1 and B2 were the intervention phases (Table 3).

Table 3. Description of length of phases in Study IV

Couple (C) A1 (weeks) B1 (weeks) A2 (weeks) B2 (weeks) C 1 3 7 4 5 C 2 3 7 5 4* C 3 2 5 4 5

*Phase B2 was four weeks and 2 days long


Primary outcome variables were independent outdoor activities for the PwD (frequency and duration), individual specific outcome (proxy) irrita-bility (PwD 1) and depressive mood (PwD 2 and 3) as well as spouse wor-ry concerning PwD independent outdoor activities (Spouse 1 and 3) and spouse worry that her husband will get lost while engaging in independent outdoor activities (Spouse 2).

Secondary outcomes measured were PwD well-being, PwD well-being (proxy) and spouse well-being, PwD worry about getting lost when doing outdoor activities on his own (PwD 3), accompanied outdoor activities (frequency and duration), time for independent and accompanied outdoor activities and the number of generated alarms when PwDs were alone outdoors.

The ratings were scored on numerical rating scales (0-10) with end-point alternatives ‘no well-being at all’ to ‘extremely good’, ‘not worried at all’ to ‘extremely worried’, ‘no irritability at all’ to ‘extremely irritable’, and ‘no depressive mood at all’ to ‘extremely depressed mood’, respectively.

Furthermore, descriptive measures were collected and used for describ-ing the couples: the Caregiver Burden Scale (CB scale) (155,156), the Re-source of Utilization in Dementia (RUD) (157), and the Neuropsychiatric Inventory (NPI) (158,159).

The CB scale is a tool for assessment of informal caregiver burden; it reflects the feelings experienced by the informal carer in relation to the PwD. The spouses rate statements as to how true they were for them as a caregiver. There are 22 items scored from 1 to 4 (not at all, seldom, some-times and often). The total burden index comprised the mean of all 22 items and was divided into three groups: low burden (1.00–1.99), medium burden (2.00–2.99) and high burden (3.00–4.00) (160). The higher the score are, the greater the burden. A study has shown good inter-rater reliability. The validity and internal consistency were tested showing good agreement with Cronbach alpha values of about 0.70–0.87. The CB Scale has been used for several patient groups, e.g., PwDs, stroke and Parkin-son’s disease as well as in different kinds of settings, e.g., living at home, sheltered housing and day-time care (155).

The RUD scale is completed by caregivers and compiles data on the use of social services, frequency and duration of hospitalizations, unscheduled contacts with health care professionals, amount of time they spend caring and missing work, and the medication used by the PwD. The instrument is divided into three different categories: Instrumental Activities of Daily Living (IADL), Activities of Daily Living (ADL) and Supervision. The spouses were asked whether the PwD needed help in the respective catego-ries. If they did provide help, the interviewer first asked how many days


during the last four weeks they provided assistance for each category. Second, the spouses were asked to state how many hours they assisted the PwD on these days on average for each of the three categories. High test–retest reliability for the RUD questions was found, with intra-class corre-lation coefficients larger than 0.9 in each of the three categories (157).

The NPI scale is a validated informant-based interview that is widely used in clinical research studies. The NPI evaluates the frequency and severi-ty of 12 neuropsychiatric disturbances that occur frequently in dementia: agitation, irritability, anxiety, dysphoria, hallucinations, delusions, apathy, euphoria, disinhibition, aberrant motor behaviour, appetite and eating dis-orders and sleep. Each item on the NPI is scored on a 4-point frequency scale (1= Sometimes, 2= Often, 3=Frequently, 4=Very frequently) and on a 3-point severity scale (1= Mild, 2= Moderate, 3=Severe). The severity score is then multiplied by the frequency score. The total score varies between 0-144. Content validity, concurrent validity, inter-rater reliability, and test-retest reliability of the NPI are established (161).

An initial interview with each couple was performed to identify indi-vidual main outcome variables for both the PwD and the spouse and to identify perceived problems concerning the PwD’s independent outdoor activities. During the interview, detailed information was given describing the study procedure, including the daily rating of the PwD and the spouse, and showing an example diary. The week prior to the baseline period (A1), the author collected descriptive measures and left diaries covering the first 2 weeks of the period. At the end of Phase A1, the couples received the PPA, cell phone and an instruction session, provided by the support person. During the session, the couples were able to test the PPA and cell phone, ask questions and together with the support person read the man-uals. The predicted time for the spouses to learn to use the alarm was estimated to be 2 weeks. The couples were instructed to use the PPA as frequently as possible. At the end of Phase B1 the support person fetched the PPA and returned it at the end of Phase A2. The researcher had weekly telephone contact with the spouses during all phases. These contacts were made to remind them to complete the dairies daily and to allow the re-searcher to answer potential questions from the couples. The diaries were returned by mail weekly. New diaries and stamped reply envelopes were sent by mail every second week to the couples. The graphs for one phase, for each couple, were visually inspected by three authors, and the criterion for entering the next phase was stability in the data.


Data analysis The transcribed data in Study I, II and III were analysed using manifest (III) and latent (I, II) content analyses, (150,162,163). The analysis pro-cess began with listening to and reading through all interviews repeatedly to gain an overview and general impression. In Study I, the data were divided into content areas, covering the outdoors and the PPA. Content areas are seen as “parts of a text dealing with a specific issue” (164). The analysis was continued by identifying meaning units related to the study aim. Each meaning unit was then condensed and labelled with a code. The different codes were grouped into subcategories. Subcategories expressing related meanings were then sorted into categories. Analysis in which the data are sorted into categories is regarded as manifest, and as answering the question “What?”. The underlying meaning of the findings resulted in sub-themes (Study II) and themes (Study I, II). These themes vary in depth and level of abstraction, and reflect the interpretation of the data. A latent analysis helps in answering the question “How?”. The field notes made in Study I and III were analysed along with the transcribed conversations and observations. The field notes were also used in the interpretation and presentation of the data in Study I. The analysis was carried out using a dynamic process of alternating between the whole and the parts. Collected data concerning the PPA in Study I were not analysed, however the PwDs’ reflections and experiences concerning the PPA were summarized and presented in the project group, and this informed the development of the PPAP. The findings will be presented elsewhere.

In Study IV, daily scores of primary and secondary outcomes were dis-played graphically for visual inspection, and median values for primary and secondary outcomes were calculated for every week. Furthermore, level, trend, latency and celeration lines were drawn and non-overlapping values were calculated (151,165).

A change in level is seen when a sudden rise or fall in the subject’s per-formance across two or more phases results in changes in the ‘magnitude’ of the values between phases on the y-axis (0-10 on the rating scales). Changes in trend occur when there are differences in the direction in which the data pattern is moving. A slope change is reflected by the steep-ness of a data path across phases (165). Latency of change refers to the period between the onset of one condition (intervention, B phase) and changes in performance (151). Latency of change can be rapid, happening quickly after onset of the intervention (B phase) or returning to baseline (A phase), or delayed. A rapid change signals a clearer effect of the inter-vention. Non-overlapping data are datapoint values during baseline (A1A2) that do not approach any of the datapoint values during the inter-


vention phase (B1B2) (151,166). Calculations (percentages) were made of the non-overlapping scores between phases B1 and A1 and B2 and A2. The celeration line is used to demonstrate a subject’s performance pattern. The line drawn for the baseline data (A phase) is extrapolated into the inter-vention phase (B phase) to ‘predict’ the subject’s performance (165).


Ethical considerations The Advisory Board at the local university granted permission for Study II (52-507/07) and the Regional Ethical Review Board in Uppsala granted permission for Study I, III-IV (2009/078). Written permission to perform the studies was also received from the head of the Relative Caregiver Sup-port Centre in the municipality, the county council division of medi-cine/geriatrics and primary care. In Study I, III-IV, both the PwDs and the spouses received verbal and written information. The spouses received verbal and written information in Study II. The PwDs and spouses were informed that their participation was voluntary and of their right to end their participation for any reason and that invoking this right would be respected and have no consequences for them. The information was re-peated at all interview and/or observation occasions. The collected data were treated confidentially, which means that all recorded data were keep locked in.


SUMMARY OF RESULTS

Study I The aim of Study I was to describe how persons with early-stage dementia reflect on being outdoors. Being outdoors was described by the PwDs as a confirmation of the self. Confirmation of their ability to maintain desired activities, despite the dementia disease, was important to the PwDs. How-ever, some confirmations were not positive; the realization that one could no longer perform certain activities could be devastating. Two subthemes emerged: Shifting between “still being part of it all” and a sense of grief and loss and Striving to keep on despite perceived barriers. Past but no longer possible outdoor activities were greatly missed, and the PwDs longed to be able to perform these activities again. To resolve possible difficulties associated with being outdoors, the PwDs used various adapta-tion strategies. Despite the described barriers, being outdoors was of great value to them. Figure 4 presents an overview of categories, subthemes and theme.


Figure 4. Overview of categories, subthemes and theme revealed in the analysis

Theme

Subtheme

Category

Outdoor activities as a confirmation of self through being and doing

Shifting between “still being part of it all” and a sense of grief and loss

Striving to keep on despite perceived barriers

Sensory experiences

Problems with orientation

Social interactions

Freedom and independence

Self-confidence

Physical impairment

Mental aspects of living with dementia

Adaptation strategies


In the subtheme shifting between “still being part of it all” and a sense of grief and loss, the PwDs reflected on the outdoors and shifted between being a person “of consequence” and being a person suffering from differ-ent kinds of losses. The subtheme was based on the categories sensory experiences, social interaction, freedom and independence and self-confidence. “Being part of it all” was related to external input (sensory stimulation in the form of smells, sounds, etc.), internal feelings (a sense of freedom and independence) and relations to others (social interactions). The social interaction involved in being outdoors was described by the PwDs as, e.g., meeting and talking to people passing by or just sharing something with others. Reflections on social interactions did not neces-sarily involve interaction with other people: just seeing, hearing and being with others were described as valuable as well. The PwDs associated being outdoors with a sense of freedom and independence they got from just being able to go out. The outdoor environment was also described by the PwDs as a contrast to the indoor environment. Freedom was described by the PwDs as, e.g., the need for a garden to go to. The PwDs described the outdoors as undemanding – as just being. Maintenance of self-confidence meant, e.g., being able to do what they had done before, and this was a confirmation of the self. Having an opportunity to perform outdoor activ-ities they longed for meant a great deal to them, and they reflected on it as a source of confidence in oneself and one’s own abilities. Being restrict-ed from going outdoors was described às a loss of self-confidence and dignity´. Not being able to perform activities was described by several PwDs with a sense of grief, loss and resulted in poor self-confidence.

In the subtheme striving to keep on despite perceived barriers, the PwDs described different kinds of perceived barriers and how they dealt with them. Barriers were mentioned in relation to their own abilities (now and in the future), but also in relation to the environment. Primarily phys-ical impairment was described, and the PwDs varied in their descriptions of having no, some or several impairments. The PwDs described concrete physical impacts as limitations on maintaining past and current activities. The PwDs said that they had problems with orientation in time and space. They also described the “mental aspects of living with dementia”. This was unlike their descriptions of physical impairment and problems with orientation, descriptions of what it is like to live with a dementia disease and how it affects their possibilities to be outdoors.

To maintain daily and desired activities, the PwDs used different kinds of adaptation strategies, mostly taking an active approach. Active ap-proaches were described in terms of problem-solving and preventive strat-egies. Problem-solving strategies used by the PwDs to handle an insecure


situation were e.g., to stop and think for a while, asking someone and/or use different kinds of landmarks. Being able to reconnect to these objects made it easier to navigate and find their way back home. Preventive strat-egies, e.g., future orientation problems, were more carefully planned by the PwDs.

Study II The aim of Study II was to describe relatives’ reflections on information and communication technology devices that are used or can be used in the daily care of PwDs. The findings revealed a theme `Shifting between dif-ferent perspectives: my, your and our needs of safety and security´, inter-preted as shifting between the spouse’s own needs for safety and security and those of the PwD. The theme was based on three categories, ÌCT - a support in daily life´, ÌCT - internal and external conditions´ and ÌCT– the decision to use or not use´. Figure 5 presents an overview of subcate-gories, categories and theme.


Figure 5. Overview of subcategories, categories and theme

Shifting between different perspectives: my, your and our needs for safety and security

ICT – a support in daily life

ICT – internal and external conditions

ICT – the decision to use or not use

Maintaining independence

Financial aspects

Getting help in an emergency

Knowledge, skills and abilities

Preventing harm

Finding the person with dementia

Getting help in an emergency

Preventing harm

Finding the person with dementia

Knowledge, skills and abilities

Financial aspects


Theme

Category

Subcategory




The category ICT - a support in daily life contained the subcategories maintaining independence, getting help in an emergency, preventing harm and finding the PwD. In the subcategories, the spouses shifted between their own perspectives and the perceived perspective of the PwD. The spouses described using different kinds of ICTs to, e.g., remind the PwD about activities, and supported the PwD in maintaining contact with fami-ly and friends. Spouses, both those with and without experiences of using tracking technologies, said that it gave the PwD an opportunity to remain physically active, despite the progressive disease, and to maintain freedom of movement and thereby experience better quality of life. They referred to the ICT as a support when they needed help in varyingly urgent situa-tions, both for themselves and for the PwD. The most commonly men-tioned situation associated with a need or desire for ICT in order to pre-vent harm was when the PwD made attempts to leave the home unaccom-panied, during daytime or at night. The spouses also reported being con-stantly worried that the PwD would get lost when and if he/she were left home alone, and they feared that he/she would be found too late or never. The spouses that previously had used a tracking technology had positive experiences, saying that it gave them a feeling of security and a perceived feeling of security for the PwD. Non-users of tracking technologies had heard from others that they worked well, and were interested in testing such technology.

In the category ICT - internal and external conditions the spouses re-ported that the PwDs and themselves had varying levels of knowledge, skills, abilities and interest in relation to using ICT, which affected use of the ICT. Female spouses expressed that the husband (the PwD) had previ-ously taken care of the ICT. Financial aspects were also highlighted, e.g., the possibility of being offered a less expensive alternative ICT. The spouses also said that the sex and age, and the severity of the disease of the PwD, influenced what kind of ICT they could use.

ICT – the decision to use or not use was described by the spouses as shifting between describing their own perspective and the perceived per-spective of the PwD, ethical concerns and conditions for including the PwD in the decision about whether or not to use the ICT. The spouses meant that having lived a long life together made it difficult to make deci-sions for the PwD, despite the dementia disease. Despite difficulties in communicating with the PwD, the spouses reported that they found it important to involve the PwD in decisions about what ICT to use in daily life.


The value of the PPAP - Safety and security

Prerequisites for and barriers to PPAP usability - Abilities, knowledge and

skills - Physical and functional

design of the PPAP

Trust in the PPAP and one´s own ability to

use it - Testing and checking the PPAP - Testing and checking one´s own ability

Study III The aim of Study III was to describe and explore the use and experiences of using a passive positioning alarm, over time, in the daily life of the PwDs and their spouses. The main findings show a change over time, in which testing and checking the PPA successively led to trust in the alarm and in one´s own ability to use and handle it. These conditions along with prerequisites for and barriers to a usable PPA were required for the cou-ples to perceive the alarm as valuable. Figure 6 presents an overview of subcategories and categories.

Figure 6. Overview of subcategories and categories revealed in the analysis


The PwDs appreciated the PPA as a daily support in compensating for potential physical limitations, e.g., fear of falling while alone outdoors, but indicated that they could not see the PPA as providing support for their dementia disease today. Some PwDs described perceptual impair-ment as a consequence of disease progression, while others reported hav-ing no or little effect and/or limitations related to the dementia. The PwDs were aware that they would one day, due to the progression of the dis-ease, be much worse and in greater need of the PPA, not just for their own safety and security but also for their spouse’s feelings of safety and securi-ty. The value of the PPA was also confirmed by the fact that all couples wished to keep it after the study was completed. The couples also said that the PPA would be an important safety and security aid for them both when spending time in unfamiliar environments. The PwDs and the spouses expressed the value of being locatable and saw no problem with the PwDs being monitored; they had not even considered that aspect. Concerning possible feelings of being monitored, both the PwDs and the spouses said that being seen outweighs the risk of having their privacy violated. However, the PwDs and the spouses, independent of one anoth-er, mentioned prerequisites for and barriers to the PPAP’s usability. The person’s own abilities, knowledge and skills and suggested changes to the physical and functional design of the PPAP were mentioned, i.e. maps lacks details [cell phone] – too few objects (e.g., roads) to let you orient yourself, a possibility to communicate with each other [transmitter – cell phone], reduce the number of steps in the manuals and step-wise instruc-tions [cell phone].

Study IV The aim here was to investigate the effects of using tracking technology on independent outdoor activities and psychological well-being in three indi-vidual cases, i.e. PwDs and their spouses. Using tracking technology con-sistently increased the independent outdoor activities of two persons with dementia; for one person with dementia these activities increased only during B2. One spouse consistently reported decreased worry during B phases, another’s worry decreased only in B2 and the third showed little variability in worrying across all phases. The results of primary and sec-ondary outcomes are presented in Table 4.


Couple 1. For PwD 1, the days with independent outdoor activities de-creased from 52% in Phase A1 to 24% in Phase B1, remained stable during Phase A2 (25%) and increased during Phase B2 (49%). For Spouse 1, the celeration line indicated a decrease in worries from A1 to B1. All data-points in Phase B1 fell below the celeration line, indicating either an inter-vention effect or the fact that the PwD had fewer independent outdoor activities. The median for Spouse 1’s worries increased from the first in-tervention phase (B1) to the second baseline (A2), and then decreased dur-ing the last intervention phase (B2). PwD 1’s irritability (proxy rating) showed little variability during all phases but increased during Phase B1.

Couple 2. From A1 to B1, PwD 2’s independent outdoor activities in-creased from 0% to 55%. During Phase A2 the couple used a cell phone to locate the PwD, which made the independent outdoor frequency stable (54%), and then in Phase B2 it increased to 70 %. During Phase A1, Spouse 2 reported no worries at all when the PwD performed no inde-pendent outdoor activities. In Phase B1 PwD 2 started engaging in inde-pendent outdoor activities in the third week and at the same time the spouse’s worry that her husband would get lost while alone outdoors increased. When PwD 2’s independent outdoor activities were monitored by cell phone in Phase A2, the spouse’s worries increased further, and then decreased in Phase B2 when 70% of days contained independent outdoor activities for the PwD. Seen over the whole study period, PwD 2’s depres-sive mood (proxy) decreased. From Phase A1 to Phase B1 the celeration line indicates a decreasing trend of depressive mood for the PwD (proxy). Variability in depressive mood during Phase A1 was shown for the PwD, however no changes in median were observed.

Couple 3. PwD 3 increased his independent outdoor activities during Phase B1 from 43 % to 88%. The decreased days with independent out-door activities in Phase A2 (54 %) demonstrated an effect when the inter-vention was withdrawn. Independent outdoor activities then increased to 77 % during Phase B2. During the whole study period, little variability was shown in spouse worry. Variability of the PwD’s depressive mood (proxy) was shown during the whole study period but there were no ob-servable changes in median. PwD 3‘s own ratings of well-being, depres-sion, irritability and worry showed very little variability.

During the first baseline phase (A1), none of the three PwDs engaged in independent outdoor activities more than once a day. However, the PwDs in Couple 2 and 3 increased this behaviour during the first intervention phase (B1) to include two or even three independent outdoor activities a day.


Table 4. Results of primary and secondary outcomes Study IV Phase A1 B1 A2 B2 Couple1

Primary outcomes - PwD independent

outdoor activities (%) 11*/21 (52) 12*/49 (24) 7*/28 (25) 17*/35 (49)

- Spouse worry (Md, quartile)

5, 4.5-5.5 5, 3.5-5 7, 6-7 5, 5-5

- PwD irritability (Md, quartile)

4, 3.5-5 5, 4-5 5, 4.5-6 5, 5-6

Secondary outcomes - PwD well-being

(proxy) (Md, quartile) 5, 5-6 5, 5-5 5, 5-5 5, 5-5

- PwD well-being (Md, quartile)

5, 4-6 5, 5-5 5, 4-5 5, 4-5

- Spouse well-being (Md, quartile)

5, 5-6 4, 4-5 5, 4-5 4, 4-5

Couple 2


outdoor activities (%) 0*/21 (0) 27*/49 (55) 19*/35 (54) 21*/30** (70)


0, 0-0 1, 0-0 0, 0-1 0, 0-0

- PwD depressed mood (Md, quartile)

0, 0-2.5 0, 0-0 0, 0-0 0, 0-0


(proxy) (Md, quartile) 10, 8-10 10, 10-10 10, 10-10 10, 10-10


10, 10-10 10, 10-10 10, 10-10 10, 10-10


8, 6-10 10, 8-10 10, 10-10 10, 10-10

Couple 3


outdoor activities (%) 6*/14 (43) 31*/35 (88) 15*/28 (54) 27*/35 (77)


0, 0-0 0, 0-0 0, 0-0 0, 0-0

- PwD depressed mood (Md, quartile)

0, 0-1.5 0, 0-0.5 0, 0-0 0, 0-0


(proxy) (Md, quartile) 10, 9-10 9, 8.5-9 8, 8-9 9, 9-9


10, 10-10 9, 8-9 8, 8-9 9, 9-9

- PwD own worry (Md, quartile)

0, 0-0 0, 0-0 0, 0-0 0, 0-0


9.5, 9-10 9, 9-9 9, 8-9 9, 9-9

* Refers to the proportion of days with independent outdoor activities of the number of days on which estimations were made in the diary. ** The phase were 4 weeks and 2 days long


DISCUSSION

Summary of main findings The overall aim was to describe how PwDs reflect on being outdoors and to investigate the support provided by a passive positioning alarm (PPA) in making daily life safer and more secure for PwDs and their spouses. The main findings showed that being outdoors was described by the PwDs as a confirmation of their identity, the `Self´. Confirmation of their ability to maintain desired activities, despite the dementia disease, was important to the PwDs. However, some confirmations were not positive; the realiza-tion that one could no longer perform certain activities could be painful. The use of ICT in daily care of PwDs was described by the spouses as shifting between their own needs for safety and security and the perceived need for safety and security from the perspective of the PwD. ICTs were described by the spouses as a support in daily life for both themselves and their PwDs, however internal (knowledge, skills and abilities) and external (financial aspects) conditions affected choice of an appropriate ICT. Fur-thermore, the spouses expressed the need to include the PwD in the deci-sion to use or not use an ICT in their daily life. Both the PwDs and their spouses expressed, at different points in time, the value of the PPA in their life. Testing and checking the PPA successively led to trust in the PPA and one’s own ability to use it. Those conditions along with prerequisites for and barriers to a usable PPA were a prerequisite for the couples to per-ceive the PPA as valuable. Using the PPA consistently increased the inde-pendent outdoor activities for two PwDs, for one PwD the independent outdoor activities increased only during B2. For the spouses, one consist-ently reported decreased worry during B phases, one spouse’s worries decreased only in B2 and one spouse showed little variability in worry across all phases.

In summary, the results of the thesis show that use of a PPA in daily life among PwDs living in their own homes can give a sense of freedom, sup-port and strengthen the feeling of independence for both PwDs and their spouses as well as give a feeling of safety and security for them both. Use of the PPA may also increase PwDs’ independent outdoor activities and decrease spouses’ worries.


The value of being outdoors for persons with dementia Result from our studies showed that the PwDs kept on and wanted to be alone outdoors (Study I, III, IV), which was interpreted as a confirmation of the Self (39) (Study I). This confirmation, however, was described as both positive and negative, depending on whether or not they still could perform desired activities (Study I). Through their outdoor activities the PwDs also described who they had been, and many times, still were (Study I). This is in line with Harré’s descriptions of Self 2 (personal attributes) as presented in social construction theory (39).

Being alone outdoors seemed to have contributed to the PwDs’ well-being (Study I, III-IV), and our results support an earlier interview study by Duggan et al. (15), where PwDs described the importance of being outdoors as promoting emotional well-being. Being outdoors has also been shown to positively affect PwDs’ self/identity (167,168). Engaging in outdoor activities was described by the PwDs as a sense of freedom (Study I). However, freedom did not necessarily have to involve particular activi-ty, e.g., running, walking, skiing etc. Just being able to go out and stay outdoors was described as resulting in a sense of freedom (Study I). Fur-thermore, a possibility to spend time outdoors was described in the pre-sent thesis by the PwDs as an opportunity to `see a future despite living with a dementia disease’ (cf. 34). Being outdoors was not just a preference (Study I, III) but also a necessity if the PwDs were not to become irritable or experience a depressive mood (Study IV).

The PwDs described how being outdoors involved social interaction, which was perceived as important (Study I). In a study by Duggan et al. (15) being outdoors and interacting with familiar people was a source of social inclusion and identity. According to Harrés, Self 3 (the public per-sonae) is manifested by the people around us, but also threatened by them (5,18,169). Studies have revealed that there is a risk that Self 2 attributes, which the PwD is proud of, might be marginalized when interacting with others (41,46) thus turning the person into “the demented”. While out-doors, the PwDs (Study I) reflected on sensory experiences, sights, smells and sounds, as a medicine and a reminder that there is still a lot of life left to be lived. Being outdoors, where one can experience and share these sensorium without having to remember details (i.e. names, places, things), may be a way of supporting the PwD’s Self 3, as being outdoors is a non-demanding way to meet, interact and having a social relations with others, despite living with a dementia disease (Study I). In accordance with the inclusion criteria for the present work, all PwDs in the studies wanted and/or needed to be outdoors (Study I, III, IV). We cannot assume, how-ever, that all PwDs want to be alone outdoors or outdoors at all. One


might be a person who rarely or never engaged in outdoor activities earli-er in life, and/or who prefers accompanied outdoor activities (together with spouse or others) as a form of social interaction (Study I). The out-door activities were also described by the PwDs as an opportunity to re-main physically active (Study I, III). Whether or not you have been active earlier in life, research has shown that physical activity among older per-sons might delay and/or prevent dementia diseases (26-28). Physical activ-ity does not necessary need to be performed outdoors. However, being outdoors in a “restorative” environment, as described by Kaplan and Kaplan (22), has been shown to be beneficial for humans’ well-being (19), something also highlighted by the PwDs in the present work (Study I). Furthermore, positive effects of being outdoors have also been shown in PwDs with behavioural and psychological symptoms of dementia (23,24,170).

Problems and strategies related to being outdoors: perspective of person with dementia and spouses Both PwDs and spouses in the present thesis had identified problems in daily life for PwDs associated with being alone outdoors (Study I, III), e.g., getting lost or not finding one’s way back home (cf. 13). Some prob-lems were also described by the PwDs as physical impairments, not neces-sarily associated with living with dementia.

Despite negative experienced and expressed consequences of the de-mentia disease, the PwDs strived to deal with these challenges (cf. 35,37). The PwDs who were still able, and allowed, to be alone outdoors (Study I, III) and their spouses (Study IV) used different kinds of strategies to en-hance independent outdoor activities. The PwDs in the present work mostly used an active approach, taking responsibility for their own ac-tions, e.g., by walking in areas known to them (cf. 10,37), seeking walk-ways that naturally (by forming a loop) lead them back to the starting point and by using a cell phone (cf. 25,171). Cell phones were also used by the spouses in the present work (Study III, IV) to call the PwD when he/she was alone outdoors. Some PwDs used a passive approach, thereby relaying on others in their surroundings to take care of them (cf. 5,16). These results are in line with findings from other qualitative studies (e.g., (18,37,171) aimed at describing how PwDs adjust to and cope with the losses following a dementia disease. The strategies used by the PwDs might also be seen as attributes of Self 2 (cf. 42).

The PwDs reflected on the identified difficulties as things that have been, are today and/or will or might be a problem in the future (Study I, III) (cf. 16). Some PwDs felt they had no problems with orientation today,


only physical impairments (Study I, III), thus the spouses experienced that it was wayfinding problems that made them very worried (Study III, IV) (cf. 9,172). Studies have shown that there may be discrepancies between the PwDs’ and their spouses’ experiences of the PwDs’ ability to manage certain tasks of daily life, i.e. being alone outdoors (cf. 15,172). This was described by the spouses in the present work as, e.g., the fear of the PwD getting lost while alone outdoors or of leaving the home unattended (Study II-IV) (cf. 13,25).

The results from Study IV showed that the spouses’ worries increased when the PwD was alone outdoors (without the intervention). Spouses also reported that they reduced the PwDs’ ability to leave the home unat-tended by locking the exterior door (Study II, IV) or using other devices, i.e. bells, chairs propped up against the door, etc. (Study II). According to Swedish regulations, locking PwDs in, or using other restrictions to pre-vent them from leaving units for short-time care and residential homes, is not acceptable (100). For PwDs living in their own homes, these dilemmas must be handled by the co-habiting spouses. Being compelled to restrict the PwD from going outdoors was seen by the spouses as a measure that has negative consequences (Study II, IV). This might constitute a conflict-ing situation for the spouses, on the one hand, restricting the PwD’s free-dom of movement and, on the other, preventing him/her from getting hurt. The locked door, which results in restricted freedom, might also affect the PwD’s Self (Study I), in that valuable outdoor activities, e.g., social interaction (Study I), become difficult. Studies have shown that the use of physical restrictions in geriatric long-term care is common (101,102) and related to decreased mobility and decreased psychological well-being among older persons and PwDs (173,174). The spouses in the present work justified the locked exterior door as a method to prevent the PwDs from getting harmed (Study II, IV). However, spouses shifted be-tween their own perspective of safety and security and the perceived per-spective of the PwD (Study II).

PwDs might also choose to deliberately stay indoors, which they should be able to. However, this may have consequences for their spouses. One possible consequence is that the spouses too will be confined to the home, in some respects, as leaving the PwD at home alone might entail a risk that he/she will leave the home unattended (13,98). Harris and Keady´s (63) interview study with younger carers of younger PwDs revealed that caring was seen a form of social isolation (Study IV). Therefore, helping PwDs spend time alone outdoors with the use of a PPA may lead to in-creased freedom for spouses to engage in their own activities, resulting in a win-win situation.


Value and ethical aspects of the passive positioning alarm (PPA) In the present thesis, a passive positioning alarm was used by the PwDs and spouses when the PwDs were alone outdoors. The PwDs and spouses testing and checking of the PPAP led to trust in it and in their own abili-ties to use it, and successively over time they found the PPAP valuable (Study III). According to Rogers’ Diffusion of Innovation theory (DOI) (175), the value of the PPAP expressed by the PwDs and spouses might be seen as reflecting its relative advantage. By this, Rogers means that there should be some form of benefit for using the technology. Rogers (175) also considers that there is a need for users to identify òbservable results´ to perceive the value of new technology. The PwDs (Study III) and spouses (Study II, III, IV) described the PPAP as providing valuable support for safety and security in their daily life. This is in line with studies in which tracking technologies have been used for PwDs living at home (e.g., 116,127,128,130). The PwDs who felt they had no need for the PPA to-day, as a support for the dementia disease, reported that it might be used in case they fell while alone outdoors or for some other reason needed to come into contact with their spouses (Study III). However, use of the PPA was primary a support in case the PwD got lost or did not find his/her way back home while alone outdoors.

The value of the PPAP for the PwD might be seen in terms of increased independence, i.e. being able to spend time outdoors independently with the support of the PPA (Study III, IV). This was also found in a study by Pot et al. (128), where PwDs reported being outside alone more when using tracking technology. An interview study with family carers of PwDs (127) also revealed that using tracking technology enhanced the sense of independence for both themselves and their PwD. For the spouses, their own feelings of safety and security as well as the perceived feeling of safe-ty and security for their PwD may be the main reason for using the PPA (Study III, IV) and may also make it possible for spouses to engage in their own activities (Study IV).

Several studies have stressed the importance of discussing and consider-ing ethical aspects, i.e. decreased autonomy, restricted movement, privacy and dignity (115,126,133,135,136), when using tracking technologies in the care of PwDs. However, in Study II and III, both the PwDs and the spouses expressed that the opportunity to create a safe and secure envi-ronment, for both of them, overshadowed potential ethical problems. The tracking technology used in the present thesis, as previously mentioned, was passive, meaning that the position of the transmitter carried by the PwD when he/she was alone outdoors was only visible to the spouse after the initial alarm (Study III, IV). This approach is different from that of the


tracking technology used in studies by, e.g., Pot et al. (128) and Werner et al. (176) where the spouse could constantly follow the PwD’s positioning via a website. However, findings from Study III revealed that neither the PwDs nor their spouses wanted the function that allowed the PwD to “be invisible inside the circle”. Of primary concern to both the PwD and spouse was that the PwD be found immediately if and when he/she got lost while alone outdoors. Without marginalizing any ethical aspects, let us think beyond views that see the PPA as something that violates individ-ual integrity, and instead see use of the PPA as an expression of the spous-es’ care for their PwD. For couples that have lived together for a long time and know each other very well, use of the PPA can be seen as the spouses’ way of protecting their PwD, instead of violating them in some way (cf. (177). Use of the PPA can also be seen as the spouses’ way of helping the PwD avoid feelings of anxiety while alone outdoors. This too is an exam-ple of ethical reasoning and action. According to Lögstrup (178), respond-ing to another person’s needs is an ethical requirement. The use of a PPA may also involve people other than a spouse, e.g., relatives and/or healthcare staff. The primary concern here is that the PwD’s autonomy be respected as well as his/her wishes concerning who should be able to “see” him/her on the device.

Something highlighted by the PwDs in Study III and the spouses in Study II as an advantage of the PPA was its flexibility, that the technique is not tied to a single geographic location. In contrast to the tracking tech-nologies used in other studies (128,131,132,176) where the receiver was a computer, in the present work the receiver of the alarm was the spouse’s cell phone (Study III, IV). Thanks to the portable alarm receiver, it was possible to use it at, e.g., the summer cottage or when visiting friends/family (Study III, IV). This was perceived by the PwDs as increas-ing their freedom to, e.g., take a walk and pick berries and mushrooms in places where memory problems related to the dementia disease might make such activities difficult (Study III). The spouse, on the other hand, might see the PPA’s flexibility as increasing his/her own freedom to do things outside the home. In Study II, the spouses who had not used a PPA had heard from others that it functioned well and they were interested in using it too. According to Rogers (175), the visible effects an innovation has for others are described using the concept of compatibility.

Development of the PPAP The value of the PPA was discussed by both the PwDs and spouses inde-pendently, as was the need for changes of the physical and functional design to make the PPA more useful (Study III). According to Rogers


(175) this might be seen as related to compatibility, meaning that the in-novation should fit the user’s life and practices. Some functional design elements of the PPA, e.g., the “hidden zone”, were intended to give the PwD privacy while alone outdoors, but neither the PwDs nor the spouses appreciated these features (Study III). The possibility to get help directly was considered more valuable than being able to walk around “unseen”. The PwDs’ and the spouses’ testing and checking also revealed prerequi-sites for and barriers to the PPA’s usability (Study III). Rogers (175) re-lates this to the concept of trialability, i.e., the opportunity for a potential user to test the innovation. Difficulties in using the PPA were also de-scribed by the spouses in connection with their abilities, knowledge and skills (Study III), and this might support the importance of running usabil-ity tests before implementing a PPA. As described by Scandurra (179), the design of the system (i.e. PPA) affects usability, meaning “it depends on who will be using the system, in which environment, and for what kind of work”. Usability tests could be used as the basis for creating an individu-al-specific “service” to support users (Study III, IV). Studies by Alexander (180) and Alexander and Wakefield (181) have also shown that continu-ous evaluation is central to improving the design and efficiency of clinical information systems in nursing homes (Study I-IV). According to the Technology Acceptance Model (TAM) (182), perceived usefulness and ease of use will lead to actual use of the technology (183).

Notable was that the males (both PwDs and spouses) showed more “in-terest” in the PPA (Study III). The male spouses were also somewhat quicker to learn to use the PPA, while the female spouses expressed and needed more support, e.g., more hands-on instruction by the support per-son (Study III). The complexity of the innovation (175) refers to the inher-ent difficulty of using the technology. It might also have been that the husband (now the PwD) was the one who had use and handled all the technologies in that home (Study II), and now the spouse had to learn to use them (Study II-IV). In their interview study with a single couple, Fau-counau et al. (123) found that the spouse perceived difficulties in using the tracking, which meant that the device was not suited to her needs. Chang-es in roles within the couple might also occur due to progression of the dementia disease, entailing that the spouse now has to take over the roles previously fulfilled by the PwD (cf. 88,184).


Research ethics Including PwDs in the research is important and necessary, but has to be discussed in relation to the ethical issues raised (185,186). There may be some doubt as to whether the PwDs always are aware of what they have consented to, and this can never be guaranteed (186,187). The researcher who performed the observations and/or conversations was experienced in talking with PwDs and used this knowledge to approach the individuals in as sensitive and respectful a manner as possible, so as to avoid making the PwD feel exposed (cf. 188,189). The observations and/or conversations might also have been emotionally stressful and raised feelings of discom-fort among both the PwDs and spouses. It was therefore important for the researcher to have a sensitive approach and look for signs of distress, and to end the session if such signs appeared. During two interviews in Study I the informants showed signs of discomfort and began crying. However, they strongly expressed that they did not want to stop the interviews, just to take a short break. With the exception of these incidents, no signs of discomfort were observed in either the PwDs or the spouses in any of the studies. Despite the emotional upheaval of describing and reflecting on their current situation, all of the participants (both the PwDs and their spouses) expressed being delighted to have an opportunity to talk to someone who showed an interest in hearing their stories. The interviewer also set aside plenty of time for meeting informants’ potential needs for reflection and discussion in connection with the observations and inter-views/conversations.

In Study IV, ethical concerns might be raised in connection with with-drawing the PPA during the second baseline phase (A2). Kazdin (151) means that the “return-to-baseline condition is unacceptable if this means making the client worse”. During all phases, the researcher made weekly contact with all couples and had the couples’ best interest in mind at all times.

All couples in Study IV and one couple in Study III kept the PPA after the study was concluded.


Methodological considerations In the present thesis, there are strengths as well as limitations that might have influenced the results and the conclusions that can be drawn. The quality of the research must be addressed. Regarding the qualitative stud-ies (I, II, III) issues of trustworthiness (163,190) are discussed and for the quantitative study (IV) threats to validity are considered (151).

This thesis is based on four small-sample studies. However, the variations in design, different kinds of data collection methods and analysis methods have hopefully increased the quality of the thesis.

Study I and II, included in the thesis, had descriptive designs and this choice seemed appropriate given the aim to capture the PwDs’ reflections on and experiences of being outdoors and the spouses’ experiences of the ICT. In Study III, a descriptive and explorative design with an ethno-graphical approach was used to capture experiences of PwDs and spouses using the PPAP. In Study IV, an experimental single-case design was used to investigate the effect of the PPA on the PwDs’ independent outdoor activities and spouses’ worries when the PwDs were alone outdoors. We found the experimental single-case design suitable because it offers a care-fully controlled investigation on a small scale for investigating the effects of the PPA. Using an A1B1A2B2 design further strengthens the study, be-cause the intervention is withdrawn in A2 (return to baseline condition) and reintroduced in B2.

Purposive sampling (150,191) was used for all four studies. According to Patton (150), “the purpose of purposeful sampling is to select infor-mation-rich cases whose study will illuminate the questions under study”. To capture variation in the PwDs’ reflections on being outdoors, variation in age, gender (cf. 163) and mobility were aimed at in Study I. The last two PwDs were recruited because we wished to include younger females in Study I. In Study II, we aimed to achieve variation in the spouses’ age, sex and the living situation for their PwD. In Study II, the finale three spouses were recruited based on the need to include PwDs living in units for short-time care and residential homes for PwDs. Variation in living situation also reflected how far the PwD had come in the progression of the dementia disease and thereby the variation in the experience of various needs. Variation in age and gender were also aimed at in Study III. Re-cruitment of PwDs and spouses for the studies was performed with the help of healthcare staff at the memory unit within the county council and the Relative Caregivers Support Centre. Selection bias might have oc-curred and a potential risk could be that only persons in favour of using the PPAP were included, which could have resulted in less nuanced find-


ings. The sample size in the studies was determined based on the poten-tially detailed data that can be generated from each participant. Patton (150) also states that the sample size should be determined in context and on the basis of the study purpose and rationale. No informant declined to participate in Study I-III. In Study IV, one couple declined participation after the initial interview and one couple was excluded due to a relative’s (son) inability to perform daily measures of the PwD. Schneider et al. (192) suggest that the common range in number of participants in qualita-tive research is usually between eight and fifteen, but this may vary. For Study I-III, the intended variation, described above, guided the sample size and was carefully considered. In Study IV, the recruitment of additional couples was discussed, however because these “new” couples would have other prerequisites, i.e. the study would have to continue through the winter when it might be more difficult for the PwDs to be outside, we decided to limit the study to three couples. All of the couples in Study IV had male PwDs, which might have had an effect on the results.

A variety of data collection methods has been used in the thesis. In Study I repeated interviews were held twice with the PwDs, though the purpose was not to study changes in PwDs over time. To achieve depth in the PwDs’ description of being outdoors, the repeated interviews enabled the interviewer to develop, deepen, and clarify any questions from the first interview and to build a valuable relationship. A warm, empathic and sensitive attitude towards both the PwD and his/her spouse is needed to generate rich data and to establish a trustful relationship between the interviewer/researcher and the informant (2,186). To enable the researcher to better understand the PwD’s descriptions of and reflections on being outdoors, the researcher took a 10-minute walk around the informant´s neighbourhood prior to each interview in Study I, to get a picture of the area. The interviews were performed near a window with a view of the outdoor area or partly or totally outdoors to support the PwDs’ memory, owing to problems that accompany the disease (189). During some of the first interviews, the spouse was present at the same time. This might have limited the PwD’s ability to speak freely, therefore at the repeated inter-views the spouses were asked to not be present (if still in the house to be in another room) (cf. 2). On the other hand, Pesonen et al. (193) have highlighted the value of having a significant other present during inter-views as a way to provide a safe atmosphere (cf. (186). All interviews with the PwDs (Study I, III) were carried out as conversations, which we be-lieved would make it easier for and encourage them to express their reflec-tions and experiences (cf. 185,188). Study III was an intervention study in which repeated participant observations and informal conversational in-


terviews (150) were used to describe and explore the couples’ experiences and to describe how they used the PPA. The use of observations and in-terviews was valuable for capturing both visual and verbal information. Hubbard et al. (188) highlighted the value of using both methods in re-search with PwDs, as remembering or recalling events might be difficult. Given the researcher’s knowledge of the PPA and membership of the pro-ject group, several aspects need to be considered. There is a risk that this might have affected the findings, and the researcher was therefore extra cautious during data collection. The use of a support person (a healthcare professional with long experience of working with PwDs and spouses) for teaching the couples about the intervention (Study III, IV) was important in that it established the roll of the researcher as being just “a researcher”. However, the researcher’s knowledge might also have been valuable dur-ing the participant observations to identify and understand the expressed and observed difficulties when using the PPA. Furthermore, in Study III a co-observer was present during approximately 2/3 of the data collection occasions. The reason for having two observers present was to be able to accompany the PwD in his/her independent outdoor activities and study the interaction between the PwD and the outdoor environment (data not analysed). It would also have been preferable if the co-observer could have been present during all data collection occasions; however this was not practicable. In all of the studies, the researcher made field notes (150), during or immediately after the data collection. These field notes detailed, e.g., the facial expressions and body language of the PwDs and spouses, where the interview and/or observation took place, etc. The notes have been valuable in recalling and supporting the researcher’s memory during data analysis and in interpretation of the data.

Given the aims of Study I-III, qualitative content analysis (QCA) was found to be a useful method, because it focuses to a great extent on the subject and the context. Unlike some other qualitative methods, in QCA the researcher keeps sight of the context during the whole process (data collec-tion, analysis and presentation). The “units of analysis” (163) in the present study constituted and were interpreted in relation to the whole interview. Due to the nature of the research question, we found other qualitative methods - e.g., phenomenology, which aims to seek the essence of a phe-nomenon – less suitable. In Study III, an ethnographic inspired approach was used (185). However, our study differs from ethnography in that the data were not collected and analysed in parallel (150,194). Reflections from the observations and the interviews were summarized after each data collec-tion occasion and discussed by the first and last authors, and constituted the point of departure for the next data collection occasion.


Finally, using the Mini Mental Score Examination (MMSE) (152) was discussed, but decided against for Study IV due to the perceived risk of violating the PwD’s integrity and creating a negative “interview atmos-phere” (cf. 186,193,195).

Trustworthiness In the present research, the concepts credibility, dependability and trans-ferability have been used (cf. 163,190). Quotations from the interviews and informal conversations in Study I, II and III helped strengthen the credibility of the studies. Increased credibility in the studies has also been ensured by having discussions throughout the analysis process in both the research team and at research seminars. All authors read the condensed material and discussed the abstraction to categories, sub-themes and theme to reduce the possibility of a researcher biased interpretation of the data. Credibility was also achieved by choosing participants of varying age and sex and by prolonged engagement (190) across two different time points (Study I). According to Patton (150), the credibility of the research-er is also important, as he/she is the major “instrument” of data collection and analysis. The researcher’s detailed knowledge of the passive position-ing alarm might have initiated questions during the interviews and conver-sations, thereby enriching the data. Triangulation, with the use of inter-views and observations in Study III, also helped strengthen the credibility (150). To address dependability, careful and thick descriptions have been made of the selection process, sample and setting, data collection proce-dure and analysis process, all in an attempt to enable future replication of the studies. To further strengthen the dependability, an interview guide was used in Study II. By providing sufficient contextual information, the transferability of the findings to other contexts has hopefully been en-hanced. However, this must be judged by the reader, based on his/her experience, and determined through further research (150,163,190).


Internal and external validity Threats to validity in the present work might be seen in terms of internal, construct and external validity (151). Threats to construct validity might include increased attention from and contact with the support person during intervention phases (B1B2). The design of the study using structured daily measures of variables during baseline phases (A1A2) and treatment phases (B1B2) mean that threats to internal validity are minimized.

Another methodological consideration concerns the fact that the study was based on three single cases, thus the data need to be interpreted with caution (165). However, the experimental single-case design does not claim to generate generalizable findings, but instead it is admitted that this is a limitation of the design. Nevertheless, the findings may serve as the scientific basis for designing a clinical randomized controlled trial or be used to conduct a replication study.

The Inter-rater reliability of the data was also estimated by letting the authors (not those included in the primary decision as to when to enter the next phase) visually inspect the data.


Implication for practice The PwDs’ and their spouses’ needs and the benefit of a passive position-ing alarm in their daily life should guide if and when the PPA is intro-duced. Providing early information, in the dementia disease trajectory, about the PPA to PwDs and their spouses could facilitate joint decision-making regarding the use of such a device later on. Testing and using the PPA early on in the course of the disease might also facilitate future use when the PwD’s cognitive impairments might be more severe (cf. 196). The barriers and facilitators expressed by PwDs and spouses as necessary to address to ensure successful use need to be discussed and considered before implementing the PPA in their daily life. The value and importance of letting PwDs express their experiences and reflections on using the PPA must be given greater priority in clinical practice. Cooperation between the nurses, district nurses, occupational therapists, physicians, etc., in-volved in supporting PwDs and relatives in managing daily life is im-portant to meeting and being aware of the different needs addressed and being able to adapt the support to individual prerequisites. Such support must include detailed instructions, both verbal and written, as well as hands-on demonstration and a 24-hour service support package.

Future research The findings from the present studies contribute to our understanding of reflections on and experiences and effects of using a passive positioning alarm in daily life for PwDs and their spouses, but also give rise to new questions that need to be investigated. A randomized controlled trial comparing use and non-use of the PPA would be valuable and important to further see the effects of using a PPA. Of interest would also be to measure cost effectiveness taking into account the costs of searching for PwDs who have gone missing outdoors. Further, there is a need for stud-ies investigating at which stage of dementia the PPA is most appropriate to introduce, can be used and would be optimal to use. Longitudinal stud-ies are also needed to reveal the effects of PPA, changes over time and into the later stages of the disease.


CONCLUSIONS The present thesis describe how PwDs reflected on being outdoors and to investigated the support provided by a PPA in making daily life safer for PwDs and their spouses. The main conclusions of the thesis are:

• Helping PwDs spend time alone outdoors, based on their own pre-requisites, through use of a PPA may help them maintain an inde-pendent life for a longer period of time.

• Helping PwDs spend time alone outdoors, where they might have opportunities to strengthen their Self, may have a positive impact on their quality of life.

• Being outdoors supports the PwDs’ self – Self 1 by helping them tell their life stories through outdoor activities, Self 2 by helping them describe their strategies and Self 3 by providing a non-demanding way to interact with others.

• Mutual acceptance, on the part of both PwDs and spouses, of us-ing a PPA in daily life is needed.

• Use of a PPA in daily life could increase the sense of freedom and independence for both PwDs and spouses.

• A PPA for PwDs and their spouses needs to be packaged as a “ser-vice” with flexibility for each user and based on their needs, knowledge, skills and abilities.


SAMMANFATTNING PÅ SVENSKA 2007 startades ett samarbetsprojekt mellan kommunen (initiativtagare), Högskolan i Gävle och näringslivet med syftet att utveckla ett tekniskt stöd för personer med demens och deras närstående i det dagliga livet. Personer med demens är i större utsträckning idag än tidigare, kvarboende i det egna hemmet och vårdad av närstående, vanligtvis en make/maka, vilket kräver stöd i olika utformning och omfattning. Ett sätt att stödja och stärka både personer med demens och närstående som bor i det egna hemmet kan vara att använda informations- och kommunikations tek-nologiska (IKT) stöd.

Det övergripande syftet med föreliggande avhandling var att beskriva hur personer med demens reflekterar kring utevistelse och att undersöka om ett passivt positioneringslarm kan stödja personer med demens och deras närstående i det dagliga livet.

Delstudie I syftade till att beskriva hur personer med tidig demens re-flekterar kring utevistelse. Elva personer med tidig demens intervjuades vid två tillfällen i det egna hemmet. Data analyserades med kvalitativ in-nehållsanalys. Resultatet visade att utomhusvistelse var ett sätt att be-kräfta personer med demens identitet. Det upplevdes värdefullt att få en bekräftelse på förmågan att utföra önskade aktiviteter, däremot var be-kräftelsen inte alltid positiv. Insikten att vissa aktiviteter inte längre var möjliga att utföra kunde vara förkrossande.

Delstudie II syftade till att beskriva närstående till personer med demens reflektioner kring olika typer av IKT stöd som används eller kan användas i den dagliga vården av personer med demens. Fjorton män och kvinnor, som alla är make/maka till en person med demens (boende i det egna hemmet, på korttidsboende eller i särskilt boende) intervjuades. Under intervjuerna visades en kort datorpresentation av olika typer av IKT stöd samt ett passivt positioneringslarm. Data analyserades med kvalitativ innehållsanalys. Re-sultatet visade att närstående pendlade mellan att uttrycka behovet av egen trygghet och säkerhet och upplevelsen av trygghet och säkerhet utifrån per-soner med demens perspektiv. Egna kunskaper, färdigheter och förmågor att kunna använda och hantera IKT lyftes som viktiga delar. Närstående beskrev även etiska aspekter, så som att exempelvis vikten av att involvera personen med demens i besluten om vilket/vilka IKT som skall användas och när dessa bör börja eller skall användas.

Delstudie III var en interventionsstudie som syftade till att, över tid, be-skriva och utforska användningen och erfarenheten av att använda ett passivt positioneringslarm i det dagliga livet för personer med demens och deras make/maka. Med en etnografiskt inspirerad ansats observerades och


intervjuades fem par, en person med demens och dennes make/maka, i det egna hemmet vid fem till sju tillfällen/par. En medobservatör deltog vid ca 2/3 av datainsamlingstillfällena för att möjliggöra insamling av data vid person med demens självständiga utevistelser (insamlad data ej analyse-rad). Resultatet visade att paren över tid testade det passiva positioner-ingslarmet och successivt utvecklade en tillit till larmet och den egna för-mågan att använda det, detta var en förutsättning för att paren skulle uppleva ett värde av larmet. Vidare uttryckte både person med demens och närstående, oberoende av varandra, förslag till förändringar i den fysiska och funktionella designen av larmet, ex. detaljrikare kartbild i mobiltelefonen, möjlighet att ringa till sändaren, lättare sändare och färre ”steg” i instruktionsmanualerna.

Delstudie IV var en experimentell fallstudie som syftade till att under-söka effekten av ett passivt positioneringslarm på personer med demens självständiga utevistelser samt psykologiskt välbefinnande hos personer med demens och deras närstående. Tre par, bestående av en person med demens och dennes maka, boende i det egna hemmet, fick under fyra faser (A1B1A2B2) i dagliga strukturerade mätningar (dagböcker) skatta ut-fallsmått. I A-faserna användes ingen intervention (passivt positionerings-larm) till skillnad från B-faserna. Individspecifika utfallsmått för person med demens (irritation och nedstämdhet) identifierades via intervjuer innan studies påbörjande. Beskrivande data om paren samlades även in via strukturerade frågeformulär. Resultatet redovisades som förändringar inom paren i de olika faserna. För två av paren framkom att antalet själv-ständiga utevistelser för person med demens ökade under B-faserna. När-ståendes oro vid person med demens självständiga utevistelse minskade för två par, men var oförändrat hos ett par.

Sammanfattning av avhandlingen resultat visar att användningen av ett passivt positioneringslarm i det dagliga livet för personer med demens boende i det egna hemmet kan ge en frihet, stödja och stärka känslan av oberoende hos person med demens och deras närstående samt ge en känsla av trygghet och säkerhet för dem båda. Användningen av larmet kan öka de självständiga utevistelserna för personer med demens samt minska oron hos närstående.

Slutsatsen är att personer med demens och deras närstående som öns-kar använda ett passivt positioneringslarm i det dagliga livet bör få ett 24-timmarsstöd utifrån ett individanpassat ”paket”. Individernas förutsätt-ningar, beroende på behov, kunskap, färdigheter och förmåga, att an-vända och hantera larmet bör vara vägledande i när stödet utformas. Det skall inkludera så väl muntliga som skriftliga stöd och instruktioner.


ACKNOWLEDGEMENT First and foremost I would like to thank all of the wonderful people I have met during this work, for sharing your lives so openly and letting me into your homes and your lives. Without your help there would not have been any thesis.

Without three people this work had been impossible to do. First, Asso-ciate Professor Claudia Lampic, my main supervisor. I am deeply grateful for being able to share your great scientific knowledge and experience, English translations (like a dictionary) and for all “time schedules” you have made (what would I have done without them).

Associate Professor Maria Engström, my co-supervisor, you are the “main reason” that I am were I am today. I am ever so grateful for your enthusiastic way of introducing me to doing research – especially today!

Professor Kirsti Skovdahl, my other co-supervisor, for being my safe haven and “anchor” at Örebro University, for your knowledge in the field of dementia care and always valuable comments on my work.

I also would like to thank Professor Marianne Carlsson, Professor Inger Holmström, Professor Mona Kihlgren, Associate Professor Annica Kihlgren, Marja-Leena Kristofferzon, Magnus Lindberg, Maja Lindberg, Anna-Greta Mamhidir, Bernice Skytt, and Maria Hedman for your critical readings and valuable comments on my final work.

I would also like to thank all my colleagues at the University of Gävle for good and instructive discussions we’ve had during seminars.

The “ISAK” project group with Birgitta Svensk, Lena Furubacke, To-mas Castor and Martin Snygg.

My “assistants” Marie Bengtsson and Elisabeth Hörne at the Relative Caregiver Support Centre.

Thanks to the healthcare staff at the memory unit within the county council and the Relative Caregivers Support Centre with the help of re-cruitments of participants to the studies.

Nina Nilsson, the administrative “rock” at the School of Health and Medical Sciences, Örebro University.

My dear friends, Annica Ernesäter, Heidi Hagerman and Ann-Sofi Östlund, for being their when I “ventilate”.

A special thanks to the Faculty of Health and Occupational Studies, University of Gävle, for supporting me financially during my years as a doctoral student.

Suzanne Röhstö for all her “diversion tactics”, walks, coffee, book dis-cussions or just cheering me up.


My mother Mailis Olsson and my late father Hans Olsson for teaching me that hard work pays off.

My brother, Per-Erik (Pelle) Olsson and his family, Annica, Olivia and Alva.

My mother-in-law, Kerstin Ulin and late father-in-law, Rolf Ulin for tak-ing care of our children and help us with all sorts of “boring” housework.

Last but not least, I am most grateful to my family, Niklas, Sebastian and Christoffer (Bille), for having put up with me during these years. I love you all so very much ∞.

The studies in the present thesis were supported by grants from the Fac-

ulty of Health and Occupational Studies, University of Gävle, the Anna-Lisa Detlow Bergs Foundation, The Dementia Association, Örebro University, the Swedish Society of Nursing and the Knowledge Foundation.

Dear Past, thank you for all the lessons.

Dear Future, I´m now ready…


REFERENCES (1) SBU – Swedish Council on Health Technology Assessment. Dementia – Etiology and Epidemiology - A systematic review. 2006. [cited 2013 March 28]. Available from: http://www.sbu.se/upload/Publikationer/Content1/1/Dementia_vol1.pdf (2) Holst G, Hallberg IR. Exploring the meaning of everyday life, for those suffering from dementia. Am J Alzheimers Dis Other Demen 2003;18:359-365. (3) Phinney A. Living with the Symptoms of Alzheimer’s Disease. In: Har-ris BH, editor. The Person with Alzheimer’s Disease - Pathways to under-standing the experience. Baltimore, Maryland: The John Hopkins Univer-sity Press; 2002. p. 49-74. (4) Phinney A, Chesla C. The lived body in dementia. J Aging Stud 2003;17(3):283-299. (5) Harman G, Clare L. Illness representations and lived experience in early-stage dementia. Qual Health Res 2006 Apr;16(4):484-502. (6) Sorensen S, Waldorff FB, Waldemar G. Coping with mild Alzheimer’s disease. Dementia 2008;7(3):287-299. (7) Moyle W, Venturto L, Griffiths S, Grimbeek P, McAllister M, Oxlade D, et al. Factors influencing quality of life for people with dementia: A qualitative perspective. Aging Ment Health 2011 Nov;15(8):970-977. (8) Steeman E, Godderis J, Grypdonck M, De Bal N, Dierckx de Casterle B. Living with dementia from the perspective of older people: is it a posi-tive story? Aging Ment Health 2007 Mar;11(2):119-130. (9) Steeman E, de Casterle BD, Godderis J, Grypdonck M. Living with early-stage dementia: a review of qualitative studies. J Adv Nurs 2006 Jun;54(6):722-738. (10) Brittain K, Corner L, Robinson L, Bond J. Ageing in place and tech-nologies of place: the lived experience of people with dementia in chang-ing social, physical and technological environments. Sociol Health Illn 2010 Feb 1;32(2):272-287. (11) Parsons-Suhl K, Johnson ME, McCann JJ, Solberg S. Losing one’s memory in early Alzheimer's disease. Qual Health Res 2008 Jan;18(1):31-42.


(12) Gilmour JA, Huntington AD. Finding the balance: living with memory loss. Int J Nurs Pract 2005 Jun;11(3):118-124. (13) McShane R, Gedling K, Keene J, Fairburn C, Jacoby R, Hope T. Getting lost in dementia: a longitudinal study of a behavioral symptom. Int Psychogeriatr 1998 Sep;10(3):253-260. (14) Gibson G, Chalfont GE, Clarke PD, Torrington JM, Sixsmith AJ. Housing and Connection to Nature for People with Dementia. J Hous Elderly 2007;21(3):55-72. (15) Duggan S, Blackman T, Martyr A, Van Schaik P. The impact of early dementia on outdoor life. Dementia 2008;7(2):191-204. (16) Clare L. We’ll fight it as long as we can: coping with the onset of Alzheimer’s disease. Aging Ment Health 2002 May;6(2):139-148. (17) Clare L. Managing threats to self: awareness in early stage Alz-heimer’s disease. Soc Sci Med 2003 Sep;57(6):1017-1029. (18) Pearce A, Clare L, Pistrang N. Managing sense of self - Coping in the early stages of Alzheimer’s disease. Dementia 2002;1(2):173-192. (19) Bowler DE, Buyung-Ali LM, Knight TM, Pullin AS. A systematic review of evidence for the added benefits to health of exposure to natural environments. BMC Public Health 2010 Aug 4;10:456. (20) Rappe E, Topo P. Contact with outdoor greenery can support com-petence among people with dementia. J Hous Elderly 2007;21(3):229-248. (21) Sugiyama T, Thompson Ward C. Environmental support for outdoor activities and older people’s quality of life. J Hous Elderly 2006;19(3-4):167-185. (22) Kaplan S. The restorative benefits of nature: Toward an integrative framework. J Environ Psychol 1995;15:169-182. (23) Namazi KH, Johnson BD. Pertinent autonomy for residents with dementias: Modification of the physical environment to enhance inde-pendence. Am J Alzheimers Dis Other Demen 1992;7:16-21. (24) Detweiler MB, Murphy PF, Myers LC, Kim KY. Does a wander gar-den influence inappropriate behaviors in dementia residents? Am J Alz-heimers Dis Other Demen 2008 Feb-Mar;23(1):31-45.


(25) Cedervall Y, Aberg AC. Physical activity and implications on well-being in mild Alzheimer’s disease: A qualitative case study on two men with dementia and their spouses. Physiother Theory Pract 2010 May;26(4):226-239. (26) Fratiglioni L, Paillard-Borg S, Winblad B. An active and socially inte-grated lifestyle in late life might protect against dementia. Lancet Neurol 2004 Jun;3(6):343-353. (27) Hamer M, Chida Y. Physical activity and risk of neurodegenerative disease: a systematic review of prospective evidence. Psychol Med 2009 Jan;39(1):3-11. (28) Scarmeas N, Luchsinger JA, Brickman AM, Cosentino S, Schupf N, Xin-Tang M, et al. Physical activity and Alzheimer disease course. Am J Geriatr Psychiatry 2011 May;19(5):471-481. (29) Wang HX, Karp A, Winblad B, Fratiglioni L. Late-life engagement in social and leisure activities is associated with a decreased risk of dementia: a longitudinal study from the Kungsholmen project. Am J Epidemiol 2002 Jun 15;155(12):1081-1087. (30) Cahill S, Begley E, Topo P, Saarikalle K, Macijauskiene J, Budraitiene A, et al. Ì know where this is going and I know it won’t go back´. Demen-tia 2004;3(3):313-330. (31) de Boer ME, Hertogh CM, Droes RM, II R, Jonker C, Eefsting JA. Suffering from dementia - the patient’s perspective: a review of the litera-ture. Int Psychogeriatr 2007 Dec;19(6):1021-1039. (32) van der Roest HG, Meiland FJ, Maroccini R, Comijs HC, Jonker C, Droes RM. Subjective needs of people with dementia: a review of the literature. Int Psychogeriatr 2007 Jun;19(3):559-592. (33) von Kutzleben M, Schmid W, Halek M, Holle B, Bartholomeyczik S. Community-dwelling persons with dementia: what do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging Ment Health 2012;16(3):378-390. (34) Phinney A, Chaudhury H, O'Connor DL. Doing as much as I can do: The meaning of activity for people with dementia. Aging Ment Health 2007 Jul;11(4):384-393.


(35) Macrae H. 'Making the best you can of it': living with early-stage Alzheimer's disease. Sociol Health Illn 2008 Apr;30(3):396-412. (36) Wolverson Radbourne EL, Clarke C, Moniz-Cook E. Remaining hopeful in early-stage dementia: a qualitative study. Aging Ment Health 2010 May;14(4):450-460. (37) Nygard L. Responses of persons with dementia to challenges in daily activities: a synthesis of findings from empirical studies. Am J Occup Ther 2004 Jul-Aug;58(4):435-445. (38) Aggarwal N, Vass AA, Minardi HA, Ward R, Garfield C, Cybyk B. People with dementia and their relatives: personal experiences of Alz-heimer’s and of the provision of care. J Psychiatr Ment Health Nurs 2003 Apr;10(2):187-197. (39) Harré R. The Singular Self - An introduction to the Psychology of Personhood. London: SAGE Publications Ltd.; 1998. (40) Sabat SR, Collins M. Intact Social, cognitive ability, and selfhood: A case study of Alzheimer’s disease. Am J Alzheimers Dis Other Demen 1999;14:11-19. (41) Sabat SR, Harré R. The Construction and Deconstruction of Self in Alzheimer’s Disease. Ageing Soc 1992;12:443-461. (42) Hedman R, Hansebo G, Ternestedt BM, Hellstrom I, Norberg A. How peoples with Alzheimer’s disease express their sense of self: Analys-ing using Rom Harré’s theory of selfhood. Dementia 2012 Apr:1-21. (43) Sabat SR. Surviving manifestations of selfhood in Alzheimer’s dis-ease: A case study. Dementia 2002;1(1):25-36. (44) Caddell LS, Clare L. The impact of dementia on self and identity: a systematic review. Clin Psychol Rev 2010 Feb;30(1):113-126. (45) Sabat SR. Malignant Positioning and the Predicament of Peoples with Alzheimer’s Disease. In: Harré R, Moghaddam FM, editors. The Self and Others - Positioning individuals and groups in Personal, Political, and Cultural Contexts. 1 st ed. Westport, USA: Praeger Publishers; 2003. p. 85-98. (46) Sabat SR, Napolitano L, Fath H. Barriers to the construction of a valued social identity: a case study of Alzheimer’s disease. Am J Alz-heimers Dis Other Demen 2004 May-Jun;19(3):177-185.


(47) Kitwood T. Dementia reconsidered - the person comes first. Berk-shire, UK: Open University Press; 1997. (48) Macrae H. Managing identity while living with Alzheimer’s disease. Qual Health Res 2010 Mar;20(3):293-305. (49) Caddell LS, Clare L. I’m still the same person: the impact of early-stage dementia on identity. Dementia 2011;10(3):379-398. (50) Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri CP. The global prevalence of dementia: a systematic review and metaanalysis. Alz-heimers Dement 2013 Jan;9(1):63-75. (51) Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, et al. Global prevalence of dementia: a Delphi consensus study. Lancet 2005;366(9503):2112-2117. (52) Blennow K, de Leon MJ, Zetterberg H. Alzheimer’s disease. Lancet 2006 Jul 29;368(9533):387-403. (53) World Health Organization. Chapter V, Categories F00-99. Mental, behavioural and developmental disorders: Clinical description and diag-nostic guidelines. International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10). Geneva World Health Organization, 1992. (54) Qiu C, De Ronchi D, Fratiglioni L. The epidemiology of the demen-tias: an update. Curr Opin Psychiatry 2007 Jul;20(4):380-385. (55) Birks J. Cholinesterase inhibitors for Alzheimer’s disease. Cochrane Database Syst Rev 2006 Jan 25;1:CD005593. (56) Birks J, Harvey RJ. Donepezil for dementia due to Alzheimer’s dis-ease. Cochrane Database Syst Rev 2006 Jan 25;1:CD001190. (57) Ballard C, Khan Z, Clack H, Corbett A. Nonpharmacological treat-ment of Alzheimer disease. Can J Psychiatry 2011 Oct;56(10):589-595. (58) Yu F, Rose KM, Burgener SC, Cunningham C, Buettner LL, Beattie E, et al. Cognitive training for early-stage Alzheimer’s disease and demen-tia. J Gerontol Nurs 2009 Mar;35(3):23-29. (59) SBU – Swedish Council on Health Technology Assessment. Dementia - Caring, Ethics, Ethnical and Economic aspects: A Systematic Review.


2006 [cited 2013 March 28]. Available from: http://www.sbu.se/upload/Publikationer/Content1/1/Dementia_vol3.pdf (60) Woods B, Aguirre E, Spector AE, Orrell M. Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Data-base Syst Rev 2012 Feb 15;2:CD005562. (61) Karantzoulis S, Galvin JE. Distinguishing Alzheimer’s disease from other major forms of dementia. Expert Rev Neurother 2011 Nov;11(11):1579-1591. (62) Svanberg E, Spector A, Stott J. The impact of young onset dementia on the family: a literature review. Int Psychogeriatr 2011 Apr;23(3):356-371. (63) Harris PB, Keady J. Selfhood in younger onset dementia: transitions and testimonies. Aging Ment Health 2009 May;13(3):437-444. (64) Beattie A, Daker-White G, Gilliard J, Means R. 'How can they tell?' A qualitative study of the views of younger people about their dementia and dementia care services. Health Soc Care Community 2004 Jul;12(4):359-368. (65) Jefferies K, Agrawal N. Early-onset dementia. Adv Psycho Treat 2009;15:380-388. (66) The National Board of Health and Welfare. Nationella riktlinjer för vård och omsorg vid demenssjukdom 2010 - stöd för styrning och led-ning. 2010 [cited 2013 March 28]. Available from: http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/18012/2010-5-1.pdf (67) Gitlin LN, Winter L, Corcoran M, Dennis MP, Schinfeld S, Hauck WW. Effects of the home environmental skill-building program on the caregiver-care recipient dyad: 6-month outcomes from the Philadelphia REACH Initiative. Gerontologist 2003 Aug;43(4):532-546. (68) Cohen-Mansfield J, Werner P, Reisberg B. Temporal order of cogni-tive and functional loss in a nursing home population. J Am Geriatr Soc 1995 Sep;43(9):974-978. (69) SBU – Swedish Council on Health Technology Assessment. Demens-sjukdommar. En systematisk litteraturöversikt [Dementia Diseases. A Systematic Review] 2006. [cited 2013 March 28]. Available from:


http://www.sbu.se/upload/Publikationer/Content0/1/Demens_sammanfattning.pdf (70) Luppa M, Luck T, Weyerer S, Konig HH, Brahler E, Riedel-Heller SG. Prediction of institutionalization in the elderly. A systematic review. Age Ageing 2010 Jan;39(1):31-38. (71) Canadian Study of Health and Aging Working Group. Patterns and health effects of caring for people with dementia: the impact of changing cognitive and residential status. Gerontologist 2002 Oct;42(5):643-652. (72) The National Board of Health and Welfare. Boende och vårdinsatser för personer med demenssjukdom 2005. [cited 2013 March 28]. Available from: http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/10107/2005-123-5_20051235.pdf (73) The National Board of Health and Welfare. Äldre – vård och omsorg den 1 april 2012 – Kommunala insatser enligt socialtjänstlagen samt hälso- och sjukvårdslagen 2012. [cited 2013 March 28]. Available from: http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/18670/2012-4-3.pdf (74) The National Board of Health and Welfare. Vård och omsorg om äldre, lägesrapport 2008. [cited 2013 March 28]. Available from: http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/8465/2009-126-44_200912644.pdf (75) Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci 2009;11(2):217-228. (76) Wimo A, von Strauss E, Nordberg G, Sassi F, Johansson L. Time spent on informal and formal care giving for persons with dementia in Sweden. Health policy 2002 Sep;61(3):255-268. (77) Papastavrou E, Kalokerinou A, Papacostas SS, Tsangari H, Sourtzi P. Caring for a relative with dementia: family caregiver burden. J Adv Nurs 2007 Jun;58(5):446-457. (78) Sanders S, Ott CH, Kelber ST, Noonan P. The experience of high levels of grief in caregivers of persons with Alzheimer’s disease and related dementia. Death stud 2008;32(6):495-523.


(79) Sanders S, Corley CS. Are they grieving? A qualitative analysis exam-ining grief in caregivers of individuals with Alzheimer’s disease. Soc Work Health Care 2003;37(3):35-53. (80) Black W, Almeida OP. A systematic review of the association be-tween the Behavioral and Psychological Symptoms of Dementia and bur-den of care. Int Psychogeriatr 2004 Sep;16(3):295-315. (81) M. TF,Jr, Gwyther LP, Reed SD, Friedman JY, Schulman KA. A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis Assoc Disord 2004 Apr-Jun;18(2):99-109. (82) Kim H, Chang M, Rose K, Kim S. Predictors of caregiver burden in caregivers of individuals with dementia. J Adv Nurs 2012 Apr;68(4):846-855. (83) Pinquart M, Sorensen S. Differences between caregivers and noncare-givers in psychological health and physical health: a meta-analysis. Psy-chol Aging 2003 Jun;18(2):250-267. (84) Sorensen S, Duberstein P, Gill D, Pinquart M. Dementia care: mental health effects, intervention strategies, and clinical implications. Lancet Neurol 2006 Nov;5(11):961-973. (85) Langa KM, Chernew ME, Kabeto MU, Herzog AR, Ofstedal MB, Willis RJ, et al. National estimates of the quantity and cost of informal caregiving for the elderly with dementia. J Gen Intern Med 2001 Nov;16(11):770-778. (86) Holst G, Edberg AK. Wellbeing among people with dementia and their next of kin over a period of 3 years. Scand J Caring Sci 2011 Sep;25(3):549-557. (87) Leong J, Madjar I, Fiveash B. Needs of Family Carer of Elderly Peo-ples with Dementia living in the Community. Austral J Ageing 2001;20(3):133-138. (88) Quinn C, Clare L, Pearce A, van Dijkhuizen M. The experience of providing care in the early stages of dementia: an interpretative phenome-nological analysis. Aging Ment Health 2008 Nov;12(6):769-778. (89) Rowe MA, Feinglass NG, Wiss ME. Persons with dementia who become lost in the community: a case study, current research, and recom-mendations. Mayo Clin Proc 2004 Nov;79(11):1417-1422.


(90) Vellone E, Piras G, Talucci C, Cohen MZ. Quality of life for caregiv-ers of people with Alzheimer’s disease. J Adv Nurs 2008 Jan;61(2):222-231. (91) Davis LL, Gilliss CL, Deshefy-Longhi T, Chestnutt DH, Molloy M. The Nature and Scope of Stressful Spousal Caregiving Relationships. J Fam Nurs 2011;17(2):224-240. (92) Madsen R, Birkelund R. 'The path through the unknown': the expe-rience of being a relative of a dementia-suffering spouse or parent. J Clin Nurs 2013 Mar 13 doi: 10.1111/jocn.12131. [Epub ahead of print]. (93) Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract 2008 Aug;20(8):423-428. (94) Shim B, Barroso J, Davis LL. A comparative qualitative analysis of stories of spousal caregivers of people with dementia: negative, ambiva-lent, and positive experiences. Int J Nurs Stud 2012 Feb;49(2):220-229. (95) Sanders S. Is the glass half empty or full? Reflections on strain and gain in cargivers of individuals with Alzheimer’s disease. Soc Work Health Care 2005;40(3):57-73. (96) Andren S, Elmstahl S. Family caregivers’ subjective experiences of satisfaction in dementia care: aspects of burden, subjective health and sense of coherence. Scand J Caring Sci 2005 Jun;19(2):157-168. (97) Rowe MA, Vandeveer SS, Greenblum CA, List CN, Fernandez RM, Mixson NE, et al. Persons with dementia missing in the community: is it wandering or something unique? BMC Geriatr 2011 Jun 5;11:28. (98) Rowe MA, Ahn H, Benito AP, Stone H, Wilson A, Kairalla J. Injuries and unattended home exits in persons with dementia: a 12-month pro-spective study. Am J Alzheimers Dis Other Demen 2010 Feb;25(1):27-31. (99) Toot S, Hoe J, Ledgerd R, Burnell K, Devine M, Orrell M. Causes of crises and appropriate interventions: The views of people with dementia, carers and healthcare professionals. Aging Ment Health 2013 Apr;17(3):328-335. (100) SOSFS. Socialstyrelsens föreskrifter och allmänna råd. Föreskrifter om tvångs- och skyddsåtgärder upphävda (SOSFS 1980:87 och SOSFS 1992:17) [cited 2013 March 10].


Available from: http://www.socialstyrelsen.se/fragorochsvar/foreskrifteromtvangs-ochskydds (101) Feng Z, Hirdes JP, Smith TF, Finne-Soveri H, Chi I, Du Pasquier JN, et al. Use of physical restraints and antipsychotic medications in nurs-ing homes: a cross-national study. Int J Geriatr Psychiatry 2009 Oct;24(10):1110-1118. (102) Meyer G, Kopke S, Haastert B, Muhlhauser I. Restraint use among nursing home residents: cross-sectional study and prospective cohort study. J Clin Nurs 2009 Apr;18(7):981-990. (103) Bowen ME, McKenzie B, Steis M, Rowe M. Prevalence of and ante-cedents to dementia-related missing incidents in the community. Dement Geriatr Cogn Disord 2011;31(6):406-412. (104) Scarmeas N, Brandt J, Blacker D, Albert M, Hadjigeorgiou G, Du-bois B, et al. Disruptive behavior as a predictor in Alzheimer disease. Arch Neurol 2007 Dec;64(12):1755-1761. (105) Wigg JM. Liberating the wanderers: using technology to unlock doors for those living with dementia. Sociol Health Illn 2010 Feb 1;32(2):288-303. (106) von Bonsdorff M, Rantanen T, Laukkanen P, Suutama T, Heik-kinen E. Mobility limitations and cognitive deficits as predictors of institu-tionalization among community-dwelling older people. Gerontology 2006;52(6):359-365. (107) Wikipedia. Information and communication technology (ICT). [cited 2013 March 28]. Available from: http://en.wikipedia.org/wiki/Information_and_Communication_Technology (108) AccessIT: What is assistive technology? [cited 2013 March 28]. Available from: http://www.washington.edu/accessit/articles?109 (109) FAST: Definition of the term ‘Assistive Technology’. [cited 2013 March 28]. Available from: http://www.fastuk.org/about/definitionofat.php


(110) Harrefors C, Axelsson K, Savenstedt S. Using assistive technology services at differing levels of care: healthy older couples’ perceptions. J Adv Nurs 2010 Jul;66(7):1523-1532. (111) Swedish Institute of Assistive Technology - SIAT, Rosenberg L, Nygard L. Teknik som stöd för personer med demens och deras anhöriga 2010 [cited 2013 April 2]. Available from: http://www.hi.se/Global/pdf/2010/10331-tekniksomstd.pdf (112) Mokhtari M, Aloulou H, Tiberghien T, Biswas J, Racoceanu D, Yap P. New trends to support independence in persons with mild demen-tia: a mini-review. Gerontology 2012;58(6):554-563. (113) Nygard L, Starkhammar S, Lilja M. The provision of stove timers to individuals with cognitive impairment. Scand J Occup Ther 2008 Mar;15(1):4-12. (114) Robinson L, Brittain K, Lindsay S, Jackson D, Olivier P. Keeping In Touch Everyday (KITE) project: developing assistive technologies with people with dementia and their carers to promote independence. Int Psy-chogeriatr 2009 Feb 5:1-9. (115) Robinson L, Hutchings D, Corner L, Beyer F, Dickinson H, Vanoli A, et al. A systematic literature review of the effectiveness of non-pharmacological interventions to prevent wandering in dementia and evaluation of the ethical implications and acceptability of their use. Health Technol Assess 2006 Aug;10(26):iii, ix-108. (116) Lauriks S, Reinersmann A, Van der Roest HG, Meiland FJ, Davies RJ, Moelaert F, et al. Review of ICT-based services for identified unmet needs in people with dementia. Ageing Res Rev 2007 Oct;6(3):223-246. (117) Cahill S, Begley E, Faulkner JP, Hagen I. "It gives me a sense of independence" - Findings from Ireland on the use and usefulness of assis-tive technology for people with dementia. Disabil Rehabil 2007;19:133-142. (118) Lindqvist E, Nygard L, Borell L. Significant junctures on the way towards becoming a user of assistive technology in Alzheimer’s disease. Scand J Occup Ther 2013 Feb 11 [Epub ahead of print]. (119) Alwin J, Persson J, Krevers B. Perception and significance of an assistive technology intervention - the perspectives of relatives of persons with dementia. Disabil Rehabil 2013 Jan 11 [Epub ahead of print].


(120) Gitlin LN, Winter L, Dennis MP. Assistive devices caregivers use and find helpful to manage problem behaviors of dementia. Gerontech-nology 2010;9(3):408-414. (121) Bharucha AJ, Anand V, Forlizzi J, Dew MA, Reynolds CF,3rd, Ste-vens S, et al. Intelligent assistive technology applications to dementia care: current capabilities, limitations, and future challenges. Am J Geriatr Psy-chiatry 2009 Feb;17(2):88-104. (122) Miskelly F. A novel system of electronic tagging in patients with dementia and wandering. Age Ageing 2004 May;33(3):304-306. (123) Faucounau V, Riguet M, Orvoen G, Lacombe A, Rialle V, Extra J, et al. Electronic tracking system and wandering in Alzheimer's disease: a case study. Ann Phys Rehabil Med 2009 Sep-Oct;52(7-8):579-587. (124) Miskelly FG. Assistive technology in elderly care. Age Ageing 2001 Nov;30(6):455-458. (125) Adlam T, Faulkner R, Orpwood R, Jones K, Macijauskiene J, Bu-draitiene A. The installation and support of internationally distributed equipment for people with dementia. IEEE Trans Inf Technol Biomed 2004 Sep;8(3):253-257. (126) Welsh S, Hassiotis A, O'Mahoney G, Deahl M. Big brother is watching you--the ethical implications of electronic surveillance measures in the elderly with dementia and in adults with learning difficulties. Aging Ment Health 2003 Sep;7(5):372-375. (127) Bantry White E, Montgomery P, McShane R. Electronic tracking for people with dementia who get lost outside the home: a study of the expe-rience of familial carers. Br J Occup Ther 2010;73:152-159. (128) Pot AM, Willemse BM, Horjus S. A pilot study on the use of track-ing technology: Feasibility, acceptability, and benefits for people in early stages of dementia and their informal caregivers. Aging Ment Health. 2012;16(1):127-134. (129) Rasquin SMC, Willems C, de Vliger S, Geers RPJ, Soede M. The use of a technical devices to support outdoor mobility of dementia patients. Technol Disabil 2007;19(2/3):113-120. (130) Rialle V, Ollivet C, Guigui C, Herve C. What do family caregivers of Alzheimer’s disease patients’ desire in smart home technologies? Con-trasted results of a wide survey. Methods Inf Med 2008;47(1):63-69.


(131) Landau R, Werner S, Auslander GK, Shoval N, Heinik J. Attitudes of Family and Professional Care-Givers towards the Use of GPS for Track-ing Patients with Dementia: An Exploratory Study. Br J Soc Work 2009;39(4):670-692. (132) Landau R, Auslander GK, Werner S, Shoval N, Heinik J. Families’ and professional caregivers’ views of using advanced technology to track people with dementia. Qual Health Res 2010 Mar;20(3):409-419. (133) Landau R, Werner S. Ethical aspects of using GPS for tracking peo-ple with dementia: recommendations for practice. Int Psychogeriatr 2012 Mar;24(3):358-366. (134) Landau R, Auslander GK, Werner S, Shoval N, Heinik J. Who should make the decision on the use of GPS for people with dementia? Aging Ment Health 2011 Jan;15(1):78-84. (135) Robinson L, Hutchings D, Corner L, Finch T, Hughes J, Brittain K, et al. Balancing rights and risks: Conflicting perspectives in the manage-ment of wandering in dementia. Health Risk Soc 2007;9(4):389-406. (136) Hughes R. Electronic surveillance and tagging people with demen-tia. Int J Palliat Nurs 2008 Feb;14(2):74-76. (137) Cahill S. Electronic tagging of people with dementia. Technologies may be enabling. BMJ 2003 Feb 1;326:281. (138) Bail KD. Electronic tagging of people with dementia. Devices may be preferable to locked doors. BMJ 2003 Feb 1;326:281. (139) Foster KR, Jaeger J. Ethical implications of implantable radiofre-quency identification (RFID) tags in humans. Am J Bioeth 2008 Aug;8(8):44-48. (140) Savenstedt S, Sandman PO, Zingmark K. The duality in using in-formation and communication technology in elder care. J Adv Nurs 2006 Oct;56(1):17-25. (141) Shoval N, Auslander GK, Freytag T, Landau R, Oswald F, Seidl U, et al. The use of advanced tracking technologies for the analysis of mobili-ty in Alzheimer’s disease and related cognitive diseases. BMC geriatrics 2008;8:7.


(142) ENABLE. Enabling Technologies for Peoples with Dementia - Cross-national analysis report; 2004 [cited 2013 February 20]. Available from: http://www.enableproject.org/download/Enable%20-%20Report%20-%20PG%20hybrid10.5.pdf (143) COGKNOW. Finale Evaluation Report; 2009 [cited 2013 February 20]. Available from: http://www.cogknow.eu (144) Meiland FJ, Reinersmann A, Bergvall-Kareborn B, Craig D, Moe-laert F, Mulvenna MD, et al. COGKNOW development and evaluation of an ICT-device for people with mild dementia. Stud Health Technol Inform 2007;127:166-177. (145) Oswald F, Wahl HW, Voss E, Schilling O, Freytag T, Auslander GK, et al. The Use of Tracking Technologies for the Analysis of Outdoor Mobility in the Face of Dementia: First Steps into a Project and Some Illustrative Findings from Germany. J Hous Elderly 2010;24(1):55-73. (146) Landau R, Werner S, Auslander GK, Shoval N, Heinik J. What do cognitively intact older people think about the use of electronic tracking devices for people with dementia? A preliminary analysis. Int Psychogeri-atr 2010 Dec;22(8):1301-1309. (147) Essen A. The two facets of electronic care surveillance: an explora-tion of the views of older people who live with monitoring devices. Soc Sci Med 2008 Jul;67(1):128-136. (148) Niemeijer AR, Frederiks BJ, Depla MF, Legemaate J, Eefsting JA, Hertogh CM. The ideal application of surveillance technology in residen-tial care for people with dementia. J Med Ethics 2011 May;37(5):303-310. (149) Zwijsen SA, Depla MF, Niemeijer AR, Francke AL, Hertogh CM. Surveillance technology: An alternative to physical restraints? A qualita-tive study among professionals working in nursing homes for people with dementia. Int J Nurs Stud 2012 Feb;49(2):212-219. (150) Patton MQ. Qualitative research & evaluation methods. 3 ed. Lon-don: SAGE; 2002. (151) Kazdin AE. Single-Case Research Designs - Methods for Clinical and Applied Settings. 2 nd ed. New York: Oxford University Press, Inc.; 2011.


(152) Folstein MF, Folstein SE, McHugh PR. "Mini-mental state". A practical method for grading the cognitive state of patients for the clini-cian. J Psychiatr Res 1975 Nov;12(3):189-198. (153) Kvale S. Den kvalitativa forskningsintervjun [The Qualitative Re-search Interview]. Lund: Studentlitteratur; 1997. (154) Kvale S, Brinkmann S. Den kvalitativa forskningsintervjun [The qualitative research interview 2 nd ed.]. Lund: Studentlitteratur; 2009. (155) Elmstahl S, Malmberg B, Annerstedt L. Caregiver’s burden of pa-tients 3 years after stroke assessed by a novel caregiver burden scale. Arch Phys Med Rehabil 1996 Feb;77(2):177-182. (156) Signe A, Elmstahl S. Psychosocial intervention for family caregivers of people with dementia reduces caregiver’s burden: development and effect after 6 and 12 months. Scand J Caring Sci 2008 Mar;22(1):98-109. (157) Wimo A, Nordberg G. Validity and reliability of assessments of time. Comparisons of direct observations and estimates of time by the use of the resource utilization in dementia (RUD)-instrument. Arch Gerontol Geriatr 2007 Jan-Feb;44(1):71-81. (158) Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The Neuropsychiatric Inventory: comprehensive assess-ment of psychopathology in dementia. Neurology 1994 Dec;44(12):2308-2314. (159) Kaufer DI, Cummings JL, Ketchel P, Smith V, MacMillan A, Shelley T, et al. Validation of the NPI-Q, a brief clinical form of the Neuropsy-chiatric Inventory. J Neuropsychiatry Clin Neurosci 2000;12(2):233-239. (160) Andren S, Elmstahl S. The relationship between caregiver burden, caregivers’ perceived health and their sense of coherence in caring for elders with dementia. J Clin Nurs 2008 Mar;17(6):790-799. (161) Cummings JL. The Neuropsychiatric Inventory: assessing psycho-pathology in dementia patients. Neurology 1997 May;48(5 Suppl 6):S10-6. (162) Krippendorff K. Content Analysis - An Introduction to Its Method-ology. 2 nd ed. Thousands Oaks, California: Sage Publications Inc.; 2004. (163) Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004 Feb;24(2):105-112.


(164) Baxter LA. Studying interpersonal interaction. In: Montgomery BM, Ducks S, editors. Content analysis. London: The Guilford Press; 1991. p. 239-254. (165) Zhan S, Ottenbacher KJ. Single subject research designs for disabil-ity research. Disabil Rehabil 2001 Jan 15;23(1):1-8. (166) Parker RI, Vannest K. An improved effect size for single-case re-search: nonoverlap of all pairs. Behav Ther 2009 Dec;40(4):357-367. (167) Cohen-Mansfield J, Golander H, Arnheim G. Self-identity in older persons suffering from dementia: preliminary results. Soc Sci Med 2000 Aug;51(3):381-394. (168) Edvardsson D, Fetherstonhaugh D, Nay R. Promoting a continua-tion of self and normality: person-centred care as described by people with dementia, their family members and aged care staff. J Clin Nurs 2010 Sep;19(17-18):2611-2618. (169) Langdon SA, Eagle A, Warner J. Making sense of dementia in the social world: a qualitative study. Soc Sci Med 2007 Feb;64(4):989-1000. (170) Mather A, Nemececk D, Olivier K. The effect of walled garden on behavior of individuals with Alzheimer’s. Am J Alzheimers Dis Other Demen 1997;12:252-257. (171) Nygard L, Starkhammar S. Telephone use among noninstitutional-ized persons with dementia living alone: mapping out difficulties and re-sponse strategies. Scand J Caring Sci 2003 Sep;17(3):239-249. (172) Reamy AM, Kim K, Zarit SH, Whitlatch CJ. Understanding dis-crepancy in perceptions of values: individuals with mild to moderate de-mentia and their family caregivers. Gerontologist 2011 Aug;51(4):473-483. (173) Castle NG, Engberg J. The health consequences of using physical restraints in nursing homes. Med Care 2009 Nov;47(11):1164-1173. (174) Engberg J, Castle NG, McCaffrey D. Physical restraint initiation in nursing homes and subsequent resident health. Gerontologist 2008 Aug;48(4):442-452. (175) Rogers EM. Diffusion of Innovation. 5 th ed. New York: The Free Press; 2003.


(176) Werner S, Auslander GK, Shoval N, Gitlitz T, Landau R, Heinik J. Caregiving burden and out-of-home mobility of cognitively impaired care-recipients based on GPS tracking. Int Psychogeriatr 2012 Nov;24(11):1836-1845. (177) Hellstrom I, Nolan M, Lundh U. Sustaining `couplehood´: Spouses’ strategies for living positively with dementia. Dementia 2007;6(3):383-409. (178) Lögstrup K. Det etiska kravet [The Ethical Demand]. Göteborg: Bokförlaget Daidalos AB; 1992. (179) Scandurra I. Building Usability into Health Informatics: develop-ment and evaluation of information systems for shared homecare. Uppsa-la: Acta Universitatis Upsaliensis; 2007. (180) Alexander GL. A descriptive analysis of a nursing home clinical information system with decision support. Perspect Health Inf Manag 2008 Sep 2;5:12. (181) Alexander GL, Wakefield DS. Information technology sophistica-tion in nursing homes. J Am Med Dir Assoc 2009 Jul;10(6):398-407. (182) Dishaw MT, Strong DM. Extending the technology acceptance model with task-technology fit construct. Information & Management 1999;36(1):9-21. (183) Davis FD. Perceived Usefulness, Perceived Ease of Use, and User Acceptance of Information Technology. MIS Quarterly 1989;13(3):319-340. (184) Vikstrom S, Josephsson S, Stigsdotter-Neely A, Nygard L. Engage-ment in activities: Experiences of persons with dementia and their caregiv-ing spouses. Dementia 2008;7(2):251-270. (185) Nygard L. How can we get access to the experiences of people with dementia? Suggestions and reflections. Scand J Occup Ther 2006 Jun;13(2):101-112. (186) Hellstrom I, Nolan M, Nordenfelt L, Lundh U. Ethical and meth-odological issues in interviewing persons with dementia. Nurs Ethics 2007 Sep;14(5):608-619.


(187) McKeown J, Clarke A, Ingleton C, Repper J. Actively involving people with dementia in qualitative research. J Clin Nurs 2010 Jul;19(13-14):1935-1943. (188) Hubbard G, Downs MG, Tester S. Including older peoples with dementia in research: challenges and strategies. Aging Ment Health 2003;7(5):351-362. (189) Moore TF, Hollett J. Giving voice to persons living with dementia: the researcher’s opportunities and challenges. Nurs Sci Q 2003;16(2):163-167. (190) Lincoln YS, Guba EG. Naturalistic Inquiry. Newbury Park, Califor-nia: SAGE Publications Inc.; 1985. (191) Polit DF, Beck CT editors. Nursing research: generating and as-sessing evidence for nursing practice. 9 th ed. Philadelphia: Lippincott Williams & Wilkins; 2012. (192) Schneider Z, Whitehead D, Elliott D, Lobindo-Wood G, Haber J. Nursing & Midwifery Research: methods and appraisal for evidence-based practice. 3 rd ed. Chatswood, Australia: Libby Houston; 2007. (193) Pesonen HM, Remes AM, Isola A. Ethical aspects of researching subjective experiences in early-stage dementia. Nurs Ethics 2011 Sep;18(5):651-661. (194) Munhall PL. Nursing Research: A Qualitative Perspective. 5 th ed. USA: Malloy Inc; 2012. (195) Bergland A, Kirkevold M. Thriving in nursing homes in Norway: contributing aspects described by residents. Int J Nurs Stud 2006 Aug;43(6):681-691. (196) Boman IL, Rosenberg L, Lundberg S, Nygard L. First steps in de-signing a videophone for people with dementia: identification of users’ potentials and the requirements of communication technology. Disabil Rehabil Assist Technol 2012 Sep;7(5):356-363.

STUDY I

“Persons with early-stage dementia reflect on being outdoors: a repeated

interview study”

Annakarin Olsson, RN, PhD student. 1, 2), Claudia Lampic, PhD, Associate professor 3), Kirsti Skovdahl, RN, PhD 2), Maria Engström, RN, PhD, Associate professor 1,4) 1) Faculty of Health and Occupational Studies, University of Gävle, Sweden. 2) School of Health and Medical Sciences, Örebro University, Sweden. 3) Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Sweden. 4) Department of Public Health and Caring Sciences, Uppsala University, Sweden

Correspondence to: Annakarin Olsson Faculty of Health and Occupational Studies, University of Gävle 80176 Gävle Sweden Tel: +46 26 64 88 12 Fax: +46 26 64 82 35 E-mail: [email protected]

1

STUDY I

Persons with early-stage dementia reflect on being outdoors: a repeated

interview study

Abstract

Objectives: The aim of this study was to describe how persons with early-stage dementia

reflect on being outdoors.

Methods: Data were collected through repeated interviews with a purposive sample of 11

persons with early-stage dementia in Sweden during the period 2009-2010 and were analysed

using qualitative content analysis.

Results: Informants described being outdoors as a confirmation of the self. Confirmation of

their ability to maintain desired activities, despite the dementia disease, was important to the

informants. However, some confirmations were not positive; the realization that one could no

longer perform certain activities could be devastating. Two sub-themes emerged: Shifting

between “still being part of it all” and a sense of grief and loss and Striving to keep on

despite perceived barriers. Past but no longer possible outdoor activities were greatly missed,

and the informants longed to be able to perform these activities once again. To resolve

possible difficulties associated with being outdoors, the informants used various adaptation

strategies. Despite the described barriers, being outdoors was of great value to them.

Conclusion: Independent outdoor activities seem to contribute to well-being and feelings of

self-worth among persons with early-stage dementia who want to be and are able to be

outdoors. If a person with dementia, despite cognitive limitations, wants and is able to engage

in outdoor activities, it is important for relatives and healthcare staff to encourage and

facilitate this, e.g., by discussing adaptation strategies to deal with orientation problems.

Keywords: Activities, early-stage dementia, nursing, outdoors, social construction theory

2

Introduction

Being outdoors in a natural environment is thought to be restorative and relaxing. The built

environment, consisting of e.g., buildings and roads, requires direct attention. For persons

with dementia, understanding a built environment may be problematic and lead to frustration,

whereas nature can be restorative (Kaplan & Kaplan, 1989). Opportunities to enjoy outdoor

activities are not always a reality for individuals affected by dementia. As the dementia

progresses, problems with orientation in time and space may lead to troublesome situations,

such as not finding one’s way home (McShane et al., 1998). These problems may create

barriers to involvement in outdoor activities (Brawley, 2007). Yet persons with dementia can

remain physically able for quite a long time while gradually losing their memory and

cognitive ability (SBU, 2008). Outdoor activities may be enjoyable, important and positively

affect their wellbeing (Duggan et al., 2008; Gibson et al., 2007) and identity/self (Cohen-

Mansfield et al., 2000; Edvardsson et al., 2010). However, most of the research on outdoor

activities has focused on persons with dementia living in residential homes, exploring their

ability to engage in outdoor activities (e.g., Hernandez, 2007; Rappe & Topo, 2007), and on

the effects of access to outdoor areas (Bossen, 2010; Detweiler et al., 2008; Mather et al.,

1997; Namazi & Johnson, 1992). Few studies have investigated the outdoor activities of

persons with dementia who are still living at home (Cedervall & Åberg, 2010; Duggan et al.,

2008; Gibson et al., 2007). In research by Gibson et al. (2007), persons with dementia

described how outdoor activities, e.g., walking and/or sitting in a garden, improved their well-

being. Duggan et al. (2008) conducted interviews with persons with dementia and found that

the outdoor environment enhanced their quality of life and that not being able to go out

brought on feelings of depression. The persons with dementia valued various aspects of being

3

STUDY I

outdoors: the fresh air, opportunity for exercise and opportunities to meet and interact with

friends and neighbours.

Previous research on persons with dementia has shown that social relationships play a

significant role in their life and their self-perception (Surr et al., 2006). However, due to the

memory problems accompanying the disease, social relationships and participating in social

activities may be difficult. Difficulties may be manifested as a tension between how persons

with dementia wish to be positioned in society, the family and the social network and how

others perceive their current position (Pearce et al., 2002, Langdon et al., 2007). Such

differences in perspective may result in a sense of exclusion, stigmatization and even betrayal

(Harman & Clare, 2006) as well as a sense of loss of the social self in one´s social circles

(Pearce et al., 2002). According to “social construction theory” (Sabat & Collins, 1999; Sabat

& Harré, 1992), three types of self exists within every person. Through Self 1, indexical I or

Me, we take responsibility for our actions, describe for others our experiences and feelings

and tell stories about ourselves. Self 2 describes present and past attributes attached to us. As

the disease progresses, the attentions of others are shifted to attributes perceived as shameful

and embarrassing, as opposed to attributes of which they can be proud (Sabat, 2006). Sabat

and Harré (1992) illustrated how persons with dementia struggle to maintain their social

selves, but their attempted constructions of self were not always confirmed by others. Self 3 is

manifested in interaction with the people around us (Sabat, 2005). Being in “undemanding

nature” (as described by Kaplan & Kaplan, 1995) has been shown to be beneficial to humans.

Cohen-Mansfield et al. (2000) showed that, in persons with dementia, outdoors activities were

most likely to support the self.

4

In recent years, several aspects of the experience of living with dementia, from the

perspective of persons with dementia, have been reported, e.g., living alone, receiving a

diagnosis, and using medication (Langdon et al., 2007; Moyle et al., 2011). Other studies have

explored the self (Sabat, 2005; Cadell & Clare, 2011). Studies have also been conducted to

describe strategies persons with dementia use to maintain and adjust to daily life (Clare, 2002,

2003; Pearce, 2002). Studies of outdoor activities have mostly involved persons with

dementia living in residential homes, despite that the majority still live at home. In addition,

how persons with dementia experience being outdoors has often been assessed by staff (e.g.,

Bengtsson & Carlsson, 2006; Hernandez, 2007), and not by the persons with dementia

themselves. Instead of focusing problems associated with the disease, it may be beneficial to

support the personal attributes (Self 2) of persons with dementia who have enjoyed being

outdoors. Also, the undemanding nature and social contacts experienced outdoors may

promote a sense of self-worth and social standing, i.e. support Self 3 (Langdon et al., 2007).

The aim of the present study was to describe how persons with early-stage dementia reflect on

being outdoors.

Method

Given the aim of the study, using interviews and qualitative content analysis (Graneheim &

Lundman, 2004; Krippendorff, 2004) was considered an appropriate approach. Content

analysis focuses on the subject and context and has been described as particularly relevant for

understanding individual´s experiences and reflections. To understand how persons with

dementia reflect on being outdoors, we used an interview technique that allowed them to tell

their own stories. The present study is part of a project on information and communication

technology in the daily life of persons with dementia. The study concerned two topics: 1) how

5

STUDY I

persons with dementia reflect on being outdoors (presented here) and 2) their opinions about a

passive positioning alarm demonstrated during the second part of the interview.

Participants

A purposive sample of persons with dementia, varying in age, gender and mobility, was

recruited. The inclusion criteria were having early-stage dementia, having a need and desire to

be alone outdoors, being able to speak Swedish and give informed consent. Eleven persons,

between 52-81 years of age, in the early stage of dementia (MMSE= 21–28) and living in

their own homes participated (Table 1). After the informants had given their consent, their

diagnosis was obtained from relatives (for those who were cohabiting) or from the memory

unit (for those living alone).

-//Insert Table 1 about here //-

Context

All interviews were performed in the informant´s home, mostly indoors but also outdoors.

During the first data collection session, seven relatives were present to some extent. Before

the second session, the researcher asked the relative if it would be possible to conduct the

interview alone, to ensure that the informant would be affected as little as possible by the

relative´s presence. At the second session, the relatives were present only for some minutes

and then went outdoors (n=6), to another room (n=2) or were not at home at all (n=3).

Data collection

Individual interviews were conducted twice with each informant, in the form of a

conversation. Prior to each interview, the researcher first took a 10-minute walk around the

informant´s neighbourhood to get a picture of the area. This enabled the researcher to better

6

understand the informants´ descriptions of and reflections on being outdoors (Moore &

Hollett, 2003). Owing to the memory problems that accompany the disease, the interviews

were performed near a window with view of the outdoor area; some interviews were even

performed partly or totally outdoors to support the informant´s memory. The interviewer

started by pointing out of the window and/or in the garden and asking: Ì see you live in a

house/apartment, do you usually go outdoors, e.g. in the garden?´ Later, the informants were

encouraged to describe their experiences of being outdoors, what they did while outdoors,

either together with relatives or independently, etc. The first interview lasted between 35 and

87 minutes and the second between 36 and 94 minutes. The first interview was conducted

June to October 2009 and the second between two weeks and three months later. The

variation in time was due to some informants taking holidays. All interviews were tape-

recorded and transcribed verbatim. Repeated interviews were performed to achieve depth in

the informants’ descriptions and to enable the interviewer to develop, deepen and clarify any

questions from the first interviews. Furthermore, repeated interviews were considered

valuable for building a relationship.

During and immediately after each interview, field notes were made about informants’ non-

verbal behaviours (facial expressions, e.g., joy, sadness, etc., and body language, e.g., whether

they used their hands to clarify their descriptions) (Patton, 2002), where the interview took

place (indoors and/or outdoors, which room) and where the relative was. These notes were

used to augment the data collection and as a support in interpretation of the data.

7

STUDY I

Ethical considerations

The Regional Ethical Review Board granted permission for the study. Staff at a memory unit

and Relative Caregivers Support Centre, who met both persons with dementia and their

relatives, identified eligible informants. The researcher (AO) provided a more detailed

description of the study aim, procedure and ethical considerations during the initial phone

contact (either speaking with the person with dementia or the relative, based on the wishes of

the person with dementia). Informed consent, written and verbal, was obtained from all

persons with dementia. The information was repeated at each interview session. Participation

was voluntary and the informants were informed that they could end participation at any

point. None declined to participate in the study. Plenty of time was set aside for reflection and

discussion in connection with the interviews (Hellström et al., 2007), and the researcher used

a sensitive approach so as to earn the informant´s trust (cf. Sabat, 2005).

Data analysis

The data were inductively analysed using qualitative content analysis (Graneheim &

Lundman, 2004). Qualitative content analysis deals with the manifest content, by describing

the categories clearly visible in the interview text, and the latent content, by interpreting the

underlying meaning, themes, and answering the “how” questions. The interviews were

transcribed verbatim and thereafter listened to and read through repeatedly to get an overview

of the data. In this process, the field notes were used to support and elucidate the first naïve

reading of the texts. Next, the text concerning the topic of being outdoors was extracted and

brought together into a single text (approximately two-thirds of the data). Meaning units

related to the aim were identified, condensed and labeled with codes. The whole interview

was the unit of analysis and the findings were interpreted accordingly. The different codes

were compared and grouped into categories based on similarities and differences, thus

8

describing what the informants talked about. Finally, sub-themes and a main theme were

identified, describing the underlying meaning.

Trustworthiness

To achieve trustworthiness, we used the concepts credibility, dependability and transferability

(Lincoln & Guba, 1985; Graneheim & Lundman, 2004; Krippendorff , 2004). To strengthen

credibility, the first and last author engaged in a critical discussion of each step in the process

of analysing five interviews. All authors read the condensed material and discussed the

abstraction to categories, sub-themes and theme to reduce the possibility of a researcher

biased interpretation of the data. Furthermore, prolonged engagement (Lincoln & Guba, 1985)

across two different time-points and quotations from the interviews were used to establish

credibility. Dependability refers to, e.g., the risk of inconsistency during data collection and

analysis. The informants were all asked the same main questions, and data collection and the

analysis process were continually discussed in the research team. All informants had early-

stage Alzheimer’s disease, thus our findings should not be generalized to all dementia types

and stages. The transferability of the findings to other contexts must be judged by the reader,

and determined through further research (Graneheim & Lundman, 2004).

Results

Analysis of the data revealed one main theme: Óutdoor activities as a confirmation of self

through being and doing´. The informants described being outdoors as a confirmation of the

self. Confirmation of the fact that one was able to maintain desired activities, despite the

disease, was essential. A confirmation of the self was not always positive, e.g. when

discovering that some activities were no longer possible to perform. Because the informants

9

STUDY I

reflected on the fact that they could no longer perform certain activities, the opportunity to be

outdoors and perform activities they had been engaged in earlier in life was highly valued: Ì

need to know (confirmation) that I can do the things I did before (the dementia disease)´

(informant 8:1 [interview 1], male) and às long as I can be outside and do things (activities)

I´ll have an identity´ (informant 9:1, female). Thus, the informants described being outdoors

as something positive, but also as something that reminded them of their losses: both were a

sort of confirmation. Themes and categories are presented in Table 2.

-//Insert Table 2 about here //-

Shifting between “still being part of it all” and a sense of grief and loss

Being outdoors was reflected on by the informants as shifting between “still being part of it

all” and a sense of grief and loss. The sub-theme was based on the categories sensory

experiences, social interaction, freedom and independence and self-confidence. “Being part of

it all” was related to external input (sensory stimulation in the form of smells, sounds, etc.),

internal feelings (a sense of freedom and independence) and relations to others (social

interactions). The feelings and experiences expressed were related to different activities, e.g. ,

biking, skiing, walking the dog, gardening or just sitting outdoors drinking coffee.

The sensory experiences described by the informants involved sight, smell and hearing:

hearing children play in the streets, hearing the birds singing in the woods, lying on the beach

and listening to the sound of the sea, seeing a green and well-maintained golf course, smelling

the scents of spring and tasting the first wild strawberries or just enjoying the quietness and

peacefulness of the outdoors. Just being able to sit outdoors, breathe fresh air, feel the heat of

the sun, and get a tan was associated with a sense of well-being. One informant reflected on

10

sensory experiences of being outdoors saying Ìt´s like medicine´ (informant 2:1, male), or as

another informant said Ìt (being outdoors) reminds me that there is still a lot of life left to be

lived´ (informant 8:1, male), even though he experienced grief and loss in relation to other

things.

The social interaction involved in being outdoors was described by informants as meeting

and talking to people passing by, watching children play, walking with others, drinking

coffee, or just sharing something with others. One informant said, Ìf you know that at 10 or

11 I can go to the store and buy a newspaper, then that´s something to look forward to and

then I meet a bunch of people, I´m friends with almost everyone at the store and I think

that´s… and I hear many people say they´ve met me at the store and exchanged thoughts.

They appreciated it and I do too´ (informant 5:1, male). Many informants also said that

engaging in group activities improved social contacts, and this was perceived as important.

Yet reflections on social interactions did not necessarily involve interaction with other people:

just seeing, hearing and being with others were described as valuable as well.

Several of the informants associated being outdoors with a sense of freedom and

independence, with just being able to go out. One female informant described being restricted

or not having an opportunity to go out gave her the feeling of being trapped: Ì´d feel like a

prisoner if I wasn´t able to go out… it would be horrible, it would be terrible, I don´t want to

be trapped inside, never´. [The informant depicted this feeling by tracing the outline of a little

box with her hands] (informant 3:1, female). She described life spent outdoors as an

opportunity to move, go wherever you want to and can go. The outdoor environment was also

described by informants as a contrast to the indoor environment. Freedom was described by

the informants as the need for a garden to go to `to escape everything that has to be done at

11

STUDY I

home´ (informant 1:1, male). Informants described the outdoors as undemanding – as just

being (informant 8:1, male) - Ìt makes you happy, it´s a relief to get out and feel that the

weather is okay, or if I feel like it I can take a walk - moving around is a relief´ (informant

5:2, male). `Life quality is being able to move around and go where you want and where

you´re allowed to go´ (informant 8:2, male). Being able to spend time outdoors was also

reflected on by the informants as an opportunity to look ahead – `to see a future despite living

with a dementia disease´ (informant 2:1, male).

Maintenance of self-confidence versus poor self-confidence was discussed in relation to

outdoor activities. Maintenance of self-confidence meant being able to do what they had done

before and was a confirmation of the self. Having an opportunity to perform outdoor activities

they longed for meant a great deal, and they reflected on it as a source of confidence in

oneself and one’s own abilities, including `what I have been doing, who I am/ have been, and

what I do today´ (informant 8:1, male). They described and identified themselves through

current and former activities, such as being a farmer, lumberjack or golfer Ì mostly want to

be outside, I haven´t done anything else in my life, I’m… have been a farmer …´ (informant

5:1, male). Self-confidence was thus described in terms of the importance of doing what one

had done previously. In addition, self-confidence was described as being satisfied with what

one can do and never giving up; `then there are funny things that really aren´t meaningful but

that I do now because I can manage them´ (informant 8:2, male). Having the opportunity to

resume a former activity was seen by informants as valuable and described by one informant

as à life elixir´ (informant 2:1, male). Furthermore, self-confidence was strengthened when

the informant was trusted and allowed to, e.g., be outdoors alone, have a key to the exterior

door or take care of the grandchildren outdoors. [Tears of joy and happiness and a smile on an

12

informant’s lips clearly revealed the value and importance of being trusted to take care of the

grandchildren] (informant 11:1, female, living alone).

Being restricted from going outdoors was described by one informant às a loss of self-

confidence and dignity´ (informant 2:2, male), as were restrictions associated with the

dementia disease, e.g., not being able to drive a car. Some male informants described this as a

great loss. Not being able to perform activities was described by several informants with a

sense of grief and, loss, resulting in poor self-confidence: `The whole disease is about

insecurity, poor self-esteem and that affects your sense of direction´ (informant 8:1, male).

Striving to keep on despite perceived barriers

The sub-theme `striving to keep on despite perceived barriers´ was based on the categories

physical impairment, problems with orientation, mental aspects of living with dementia and

adaptation strategies. In the three first categories, the informants identified and described

barriers at different levels concerning their physical and cognitive functions. However, though

barriers were perceived, it was clear from the descriptions that they did not stop the

informants from being outdoors. When reflecting on being outdoors, the informants described

different kinds of barriers and how they dealt with them. Barriers were mentioned in relation

to their own abilities (now and in the future), but also in relation to the environment. The

value of being outdoors outweighed barriers, and the informants used different strategies to

deal with these.

Primarily physical impairment was described, and the informants varied in their descriptions

of having no, some or several impairments. The informants described concrete physical

impacts, e.g. heart failure and eye problems, as limitations on maintaining past and current

13

STUDY I

activities. Winter was associated with a fear of falling, and the informants reported missing

being able to go outdoors during this season. Some informants, however, braved the fear of

falling because they did not want to be limited and forced to stay indoors. The informants also

reflected on the physical capacity of their relative; sometimes the relative was not able to

engage in the same activities as the informants owing to his/her own physical impairment.

Informants described having problems with orientation in time and space. Concrete

descriptions included getting confused when the neighbourhood environment was changed.

One informant described it as; ` I can´t find it… you think you might find your way, but the

fear of not being able to becomes a mental block´ (informant 8:2, male). Some informants,

however, reported having no problem finding their way home in familiar environments.

Others said that orientation was not a problem today, but that it might be in the future and

some described a fear of such problems: ` when that happens and I don´t know where I am,

I´ll be extremely unhappy´ and `there´s no saying when that day will come´ (informant 9:2,

female). One informant reflected on and worried about future opportunities to be outdoors:

`the day I can´t find my way home or am incapable of doing things I enjoy, I probably won´t

be able to be outside´ (informant 2:1, male).

Furthermore, when the informants reflected on the difficulties of being outdoors, they

described “mental aspects of living with dementia”. This category included their descriptions

of what it is like to live with a dementia disease and how it affects their possibilities to be

outdoors. The informants described it as `being in another world´, `losing my footing´ and àn

emptiness in my head´. [One informant described it visually by using her hands to form a

“globe” around her head] (informant 3:1, female). Another informant described it saying,

`When you go outside and you´re out there, it’s like walking in your sleep´ (informant 9:1,

14

female). Yet another informant described the “mental aspect of living with dementia” as

involving feelings of panic and a sense of exhaustion, but despite these feelings she felt she

still had rational thought; ` that´s what´s so fantastic that I can function rationally and be

completely clear, but still I´m not really in the real world´ (informant 3:2, female).

To maintain their daily and desired activities, the informants used different kinds of

adaptation strategies, mostly taking an active approach. Active approaches were described in

terms of problem-solving and preventive strategies. In order to handle problems with

orientation, the informants used different kinds of landmarks, road signs, a crossroad, familiar

houses etc. Being able to reconnect to these objects made it easier to navigate. An additional

problem-solving strategy used to handle an insecure situation was to stop and think for a

while, and then make a decision about which way to go, or ask someone for directions; ` I

usually stop, stand there and think… look around, relax… ´ (informant 8:1, male). A further

problem-solving strategy for dealing with an insecure situation was to systematically work

your way through the neighbourhood, going from one house to another. One informant said:

Ì do what I want today, but maybe I have to do it differently than I did before I got this

(dementia)´ (informant 3:2, female).

Another way for informants to get help when they felt lost was to use a mobile phone. Just

knowing they could call their relative gave them a sense of security. When the informants had

problems finding their way, they described using several senses: `you use your sight, smell

and hearing to locate wherever you are´ (informant 8:1, male). The informants described

listening for railways, the motor highway, etc.

15

STUDY I

Other strategies used to handle orientation problems were more carefully planned by the

informants. One preventive strategy was to walk in areas that were known to the informants.

One informant reported that she had trained her dog to find the way back home, the dog

ensured her safety. Several informants mentioned that by walking on a path that loops through

the forest, they were sure to return where they started. One informant had already searched for

such forest loops to prepare her for possible future problems. The passive approach used was

described as “letting someone else take care of you”. One informant said that because of her

previous involvement in the condominium association, she trusted that people in her

neighbourhood would recognize her, and help her home.

Discussion

Persons with dementia reflected on and described outdoor activities as a confirmation of the

self (cf. Edvardsson et al., 2010; Cohen-Mansfield et al., 2000). Mainly positive

confirmations were described, although confirmation could also be negative. A confirmation

that you are no longer capable of engaging in desired activities, a change in your daily

independent life, could be negative and lead to feelings of inadequacy and reduced well-

being. The informants described confirmation of the self through outdoor activities as

primarily a confirmation coming from themselves. The informants dealt with the difficulties

they encountered (cf. Pearce et al., 2002; Clare, 2002, 2003), and while outdoors they used

different kinds of adaptation strategies.

In the present study, and as described by, e.g., Clare (2002, 2003), Pearce et al. (2002) and

Surr (2002), persons with dementia tried to maintain their activities and/or to adjust daily life

to the difficulties associated with living with a dementia disease. “Striving to keep going”, as

16

described by the present informants, could be seen as shifting between maintenance and

adaption, as revealed in Clare (2003), and as a continuum from self-maintaining to self-

adjusting, as reported in Cadell and Clare (2011). The present findings on how persons with

dementia described being outdoors as a “confirmation of self” could be discussed in relation

to social construction theory (Sabat & Collins, 1999; Sabat & Harré, 1992). Informants´

descriptions of past and current outdoor activities involved attributes attached to themselves

(Self 2); they saw themselves through their activities in a parallel process of seeing the person

they were before and the person they still are today (cf. Pearce et al., 2002). They expressed a

sense of loss and longing with regard to activities they could no longer perform (cf. Clare,

2003). Furthermore, the informants perceived values in relation to being outdoors: feelings of

increased self-confidence, freedom and independence and sensory experiences. The present

findings also revealed the importance for a person with dementia of continuing to be a person

of value, despite the disease (Moyle et al., 2011; Steeman et al., 2006; Clare, 2002; Pearce et

al., 2002). Informants´ depiction of being outdoors as something uncomplicated,

undemanding – `just being´ – is in accordance with the ”Attention Restoration Theory”

(Kaplan & Kaplan, 1989). The theory is based on the notion that nature requires little energy

and is thought to be unlimited and that it gives humans an opportunity to rest and recover. The

uncomplicated aspect of being in nature was described by the informants in terms of sensory

experiences, feelings of freedom, independence and just being with others. The fact that

natural environments are non-demanding, in contrast to the built environment and indoor life,

could be what allowed the informants to feel free. While in nature, they could experience

being with others “in quiet” by sharing sensory impressions without verbal/ intellectual

demands, which might strengthen the self.

17

STUDY I

The dementia disease itself is a Self 2 attribute, and some informants had accepted the

disease, while others had not (cf. Sabat, 2006). In the present findings, physical impairments

and problems with orientation were described in detail by the informants as problems and

difficulties in accessing the outdoors. Several of the informants were aware they had lost

certain physical and mental abilities, but also that other abilities were intact, and they worked

hard to balance these two aspects of themselves (cf. Clare, 2003). The informants´ problems

with walking and mobility seemed to have a greater impact on their access to outdoor

activities than the dementia itself did (cf. Gibson et al., 2007). Through their portrayals of past

and current activities, the informants described their identity (cf. Sabat & Collins, 1999).

Having the opportunity and still being able to perform activities, even when physical and

cognitive abilities are limited, could be a way to reinforce and maintain Self 2. The present

findings suggest that persons with dementia struggle to maintain their identity, on the one

hand, and to adjust to the changes caused by the dementia, on the other (cf. Clare, 2002,

2003). Although the disease can result in a variety of cognitive and behavioural problems and

limit the person´s ability to carry out sequences of skilled actions, the condition does not seem

to result in the loss of Self 1, though it does contribute indirectly to possible losses of Self 2

(Sabat & Harré, 1992). The informants expressed the importance of social contacts: talking,

walking, meeting, or just being with others was perceived as socially stimulating (cf. Clare,

2002, 2003; Duggan et al., 2008; van der Röest et al., 2007). But this did not necessarily mean

interacting with others; just sitting outdoors by oneself, merely observing others, was

perceived as beneficial. Self 3 is also manifested by the fact that one has been affiliated with a

group, e.g., that one was once a member of a hunting team. Furthermore, being trusted to take

care of the grandchildren might be seen as a way of confirming the self, and as described by

Clare (2003), as something that is greatly missed when one is no longer able to do it. This is

18

also connected to the role of others in affirming the self, in the act of permitting the person

with dementia to go outside.

Our findings show that the informants used both problem-solving and preventive strategies

when trying to manage potential problems in everyday outdoor life. Although most of them

used such strategies, some had a more passive approach and let, e.g., relatives, friends and

neighbours deal with any problems that occurred. Letting other people assume responsibility

may be a relief (cf. Clare, 2002). The present study also reveals the creativity and

imaginativeness of the informants´ strategies, traits that relatives may not have realized they

had. Clare (2002, 2003) described the maintaining and adjustment that persons with dementia

do to manage daily life as “holding on”, “compensating”, “fighting” and “coming to terms”.

Several other studies have also described similar strategies used by persons with dementia to

handle possible problems associated with the disease (Pearce et al., 2002; Clare, 2003; de

Boer et al., 2007; Nygård, 2004; Øyebode et al., 2009; Preston et al., 2007; Beard et al.,

2009). Previous work by Nygård and Starkhammar (2003), describing how persons with

dementia use the telephone, demonstrated strategies similar to those of the present informants,

e.g., seeking help from others, and repeating, stopping and reflecting to handle problems that

emerged (also cf. Clare, 2002; Preston et al., 2007).

One limitation of the present study is the small sample. It is also important to bear in mind

that the informants were persons with dementia who were still able to be and wanted to be

outdoors. Strengths were the prolonged engagement with repeated interviews and the

variation in age, gender and mobility.

19

STUDY I

In summary, the study indicates the importance of outdoor activities as a confirmation of the

self for persons with early-stage dementia who want to be and are able to be outdoors. It is

important that relatives and staff understand the strategies persons with dementia use to

engage in outdoor activities, as such knowledge may help relatives and staff encourage and

facilitate these activities. Describing their outdoor activities could also be a way for persons

with dementia to explain to staff who they have been and still are.

20

References

Bengtsson, A., & Carlsson, G. (2006). Outdoor Environments at Three Nursing Homes.

Journal of Housing for the Elderly, 19(3), 49-69.

Beard, R.L., Knauss, J., & Moyer, D. (2009). Managing disability and enjoying life: How we

reframe dementia through personal narratives. Journal of Aging Studies, 23, 227-235.

Bossen, A. (2010). The importance of getting back to nature for people with dementia.

Journal of Gerontological Nursing, 36(2), 17-22.

Brawley, E.C. (2007). Designing Successful Gardens and Outdoor Spaces for Individuals

with Alzheimer´s Disease. Journal of Housing for the Elderly, 21(3), 265-283.

Cedervall, Y., & Åberg, A.C. (2010). Physical activity and implications on well-being in mild

Alzheimer's disease: A qualitative case study on two men with dementia and their

spouses. Physiotherapy Theory and Practice, 26(4), 226-39.

Cadell, L., & Clare, L. (2011). I´m still the same person: The impact of early-stage dementia

on identity. Dementia, 10(3), 379-398.

Clare, L. (2002). We'll fight it as long as we can: coping with the onset of Alzheimer's

disease. Aging and Mental Health, 6(2), 139-148.

Clare, L. (2003). Managing threats to self: awareness in early stage Alzheimer´s disease.

Social Science & Medicine, 57(6), 1017-1029.

Cohen-Mansfield, J., Golander, H., & Arnheim, G. (2000). Self-identity in older persons

suffering from dementia: preliminary results. Social Science & Medicine, 51(3), 381-394.

21

STUDY I

de Boer, M.E., Hertogh, C.M., Dröes, R.M., II, R., Jonker, C., & Eefsting, J.A. (2007).

Suffering from dementia - the patient's perspective: a review of the literature.

International Psychogeriatrics, 19(6), 1021-1039.

Detweiler, M.B., Murphy, P.F., Myers, L.C., & Kim, K.Y. (2008). Does a wander garden

influence inappropriate behaviors in dementia residents? American Journal of Alzheimer's

Disease and Other Dementias, 23(1), 31-45.

Duggan, S., Blackman, T., Martyr, A., & Van Schaik, P. (2008). The impact of early

dementia on outdoor life. Dementia, 7(2), 191-204.

Edvardsson, D., Fetherstonhaugh, D., & Nay, R. (2010). Promoting a continuation of self and

normality: person-centred care as described by people with dementia, their family

members and aged care staff. Journal of Clinical Nursing, 19, 2611-2618.

Gibson, G., Chalfont, G.E., Clarke, P.D., Torrington, J.M., & Sixsmith, A.J. (2007). Housing

and Connection to Nature for People with Dementia. Journal of Housing for the Elderly,

21(3), 55-72.

Graneheim, U.H., & Lundman, B. (2004). Qualitative content analysis in nursing research:

concepts, procedures and measures to achieve trustworthiness. Nurse Education Today,

24(2), 105-112.

Harman, G., & Clare, L. (2006). Illness Representations and Lived Experience in Early-Stage

Dementia. Qualitative Health Research, 16(4), 484-502.

Hellström, I., Nolan, M., Nordenfelt, L., & Lundh, U. (2007). Ethical and methodological

issues in interviewing persons with dementia. Nursing Ethics, 14(5), 608-619.

22

Hernandez, R.O. (2007). Effects of Therapeutic Gardens in Special Care Units for People

with Dementia. Journal of Housing for the Elderly, 21(3), 117-152.

Holst, G., & Hallberg, I.R. (2003). Exploring the meaning of everyday life, for those suffering

from dementia. American Journal of Alzheimer's Disease and Other Dementias, 18, 359-

365.

Kaplan, R., & Kaplan, S. (1989). The Experience of Nature: A Psychological Perspective (pp.

326). New York: Cambridge University press.

Krippendorff, K. (2004). Content Analysis – An Introduction to Its Methodology. Thousand

Oaks: Sage Publications, Inc.

Langdon, S.A., Eagle, A., & Warner, J. (2007). Making sense of dementia in the social world:

A qualitative study. Social Science & Medicine, 64(4), 989-1000.

Lincoln, Y.S., & Guba, E.G. (1985). Naturalistic Inquiry. Newbury Park: Sage Publications,

Inc.

McShane, R., Gedling, K., Keene, J., Fairburn, C., Jacoby, R., & Hope, T. (1998). Getting

lost in dementia: a longitudinal study of a behavioral symptom. International

Psychogeriatrics, 10(3), 253-260.

Moore, T.F., & Hollett, J. (2003). Giving voice to persons living with dementia: the

researcher´s opportunities and challenges. Nursing Science Quarterly, 16(2), 163-167.

Moyle, W., Venturto, L., Griffiths, S., Grimbeek, P., McAllister, M., Oxlade, D., & Murfield,

J. (2011). Factors influencing quality of life for people with dementia: A qualitative

perspective. Aging and Mental Health, 15(8), 970-977.

23

STUDY I

Nygård, L., & Starkhammar, S. (2003). Telephone use among noninstitutionalized persons

with dementia living alone: mapping out difficulties and response strategies. Scandinavian

Journal of Caring Sciences, 17(3), 239-249.

Nygård, L. (2004). Responses of persons with dementia to challenges in daily activities: a

synthesis of findings from empirical studies. American Journal of Occupational Therapy,

58(4), 435-445.

Øyebode, J.R., Motala, J.R., Hardy, R.M., & Oliver, C. (2009). Coping with challenges to

memory in people with mild to moderate Alzheimer's disease: observation of behaviour in

response to analogues of everyday situations. Aging and Mental Health, 13(1), 46-53.

Patton, M.Q. (2002). Qualitative Research and Evaluation Methods. London: SAGE.

Pearce, A., Clare, L., & Pistrang, N. (2002). Managing Sense of Self: Coping in the early-

stages of Alzheimer´s disease. Dementia, 1(2), 173-192.

Preston, L., Marshall, A., & Bucks, R.S. (2007). Investigating the ways that older people cope

with dementia: a qualitative study. Aging and Mental Health, 11(2), 131-143.

Rappe, E., & Topo, P. (2007). Contact with outdoor greenery can support competence among

people with dementia. Journal of Housing for the Elderly, 21(3), 229-248.

Sabat, S.R., & Harré, R. (1992). The Construction and Deconstruction of Self in Alzheimer´s

Disease. Ageing and Society, 12, 443-461.

Sabat, S.R., & Collins, M. (1999). Intact Social, cognitive ability, and selfhood: A case study

of Alzheimer´s disease. American Journal of Alzheimer's Disease and Other Dementias,

14, 11-19.

24

Sabat, S.R. (2005). Capacity for decision-making in Alzheimer´s disease: selfhood,

positioning and semiotic people. Australian and New Zealand Journal of Psychiatry, 39,

1030-1035.

Sabat, S.R. (2006). Implicit memory and people with Alzheimer´s disease: implications for

caregiving. American Journal of Alzheimer's Disease and Other Dementias, 21, 11-14.

SBU - Swedish Council on Technology Assessment in Health Care (2008). Dementia -

Caring, Ethics, Ethnical and Economic aspects: A Systematic Review.

www.sbu.se/upload/Publikationer/Content1/1/Dementia_vol3.pdf 2012(04/13).

Steeman, E., de Casterle, B.D., Godderis, J., & Grypdonck, M. (2006). Living with early-

stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54(6), 722-

738.

Surr, C.A. (2006). Preservation of self in people with dementia living in residential care: A

socio-biographical approach. Social Science & Medicine, 62(2), 1720-1730.

van der Röest, H.G., Meiland, F.J., Maroccini, R., Comijs, H.C., Jonker, C., & Dröes, R.M.

(2007). Subjective needs of people with dementia: a review of the literature. International

Psychogeriatrics, 19(3), 559-592.

25

STUDY I

Table 1 Demographics of the persons with dementia (n=11) All Woman Men Persons with dementia Sex (n) 5 6 Mean age (years) (S.D.) 68(10) 62(13) 72(5) Living situation (n) - with a relative 9* 3 6 - alone 2* 2 Diagnosis - Alzheimer´s disease (AD) (n) 11 5 6 Years since diagnosis (mean time) 6 6 6 Mean MMSE (SD) 25 (3) Mobility - Without help (n) 7 4 3 - Cane 2 2 - Walker 2 1 1 Housing environment (n) Terrace house 4 2 2 Detached house 3 2 1 Apartment 4 1 3 Holliday cottage 5 3 2

MMSE= Mini Mental State Examination

*Residential neighbourhood in a small town

Table 2 Overview of categories, subthemes and main theme revealed in the analysis

Theme Sub-theme Category Outdoor activities as a confirmation of self through being and doing

Shifting between “still being part of it all” and a sense of grief and loss Striving to keep on going despite perceived barriers

Sensory experiences Social interactions Freedom and independence Self-confidence Physical impairment Problems with orientation Mental aspects of living with dementia Adaptation strategies

26

STUDY II

EMP IR ICAL STUD IES doi: 10.1111/j.1471-6712.2011.00916.x

My, your and our needs for safety and security: relatives’reflections on using information and communicationtechnology in dementia care

Annakarin Olsson RN (Doctoral Student)1,2, Maria Engstrom RN, PhD (Associate Professor)1, Kirsti SkovdahlRN, PhD (Senior Lecturer)2 and Claudia Lampic PhD (Associate Professor)3

1Faculty of Health and Occupational Studies, University of Gavle, Gavle, Sweden, 2School of Health and Medical Sciences, Orebro University,

Orebro, Sweden and 3Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden

Scand J Caring Sci; 2012; 26; 104–112

My, your and our needs for safety and security: rela-

tives’ reflections on using information and communi-

cation technology in dementia care

Aim: The present paper reports on a study aimed at

describing relatives¢ reflections on different kinds of

information and communication technology (ICT) devices

that are used or can be used in the daily care of persons

with dementia.

Background: Many persons with dementia continue living

in their own homes, which requires the support of their

relatives. One way to meet the needs of relatives and

persons with dementia is to use ICT.

Methods: An interview study was conducted in Sweden

(2007–2008) with a purposive sample of 14 spouses of a

person with dementia. Qualitative content analysis was

used to identify categories and themes in the data.

Findings: Relatives¢ reflections on the use of ICT were

described as ICT – a support in daily life, ICT – internal and

external conditions and ICT – the decision to use or not use.

Based on these categories, a theme was revealed: shifting

between different perspectives: my, your and our needs for

safety and security.

Conclusion: Relatives struggle to create a situation of safety

and security in daily life for themselves and the persons

with dementia. ICT devices with the right functionality

and used at the right time are regarded as useful in solving

everyday problems. In the decision to use or not use ICT,

the opportunity to create a safe and secure environment

overshadows potential ethical problems. Providing early

information about ICT to persons with dementia and their

relatives could facilitate joint decision-making regarding

use of ICT.

Keywords: burden, dementia, information and communi-

cation technology, nursing, relatives, qualitative content

analysis.

Submitted 18 August 2010, Accepted 30 June 2011

Introduction

The expected increase in the proportion of elderly people

with chronic diseases, such as dementia, and the associated

strain on formal care services require new and innovative

solutions to supporting relatives in their daily care of per-

sons with dementia (1). One way to meet relatives’ needs

for support is to use information and communication

technology (ICT). According to a review by Robinson et al.

(2), ICT could serve as a complement to ordinary care and

to increase safety and security in the daily care of persons

with dementia.

Being the relative of a person with dementia

Most persons with dementia continue living in their own

homes and are cared for by relatives (3). A person with

dementia gradually loses the ability to act autonomously

and must therefore rely on the decisions and support of

others, primarily their relatives (4, 5). A systematic

review by Stoltz et al. (6) showed that many relatives of

persons with dementia were actively involved in the

caregiving process. One large survey study showed that

relatives of persons with dementia spent 10 hours or

more each day on caregiving (7), and a great deal of

relatives¢ caring time has been reported to concern

supervision/surveillance (8).

Correspondence to:

Annakarin Olsson, Faculty of Health and Occupational Studies,

University of Gavle, 80176 Gavle, Sweden.

E-mail: [email protected]

� 2011 The Authors

104 Scandinavian Journal of Caring Sciences � 2011 Nordic College of Caring Science

Living with and providing care for a person with

dementia has been reported to be a stressful and

demanding situation for relatives (9, 10). Reviews by Torti

et al. (11), Black and Almeida (12) and Machnicki et al.

(13) showed that demanding behaviours such as restless-

ness, wandering and worry in persons with dementia were

significantly associated with caregivers’ burden.

As dementia progresses, problems with orientation in

time and space become more frequent and may lead to

potentially dangerous situations (14), such as leaving

home in the middle of the night. Unattended home exits

are common among persons with dementia and are a

source of anxiety for relatives. One study by Rasquin et al.

(15) revealed that persons with dementia who get lost

outside the home or wander away cause relatives a great

deal of worry. In a study among relatives of persons with

dementia exploring their perspectives on wandering (2),

relatives perceived a conflict between prevention of harm

to persons with dementia, on the one hand, and their right

to autonomy, on the other. In such situations, some rela-

tives have been reported to justify locking doors (16, 17).

However, in a qualitative study by Duggan et al. (18), it

was shown that both persons with dementia and their

relatives felt the outdoor environment enhanced quality of

life and that not being able to go out often brought on

feelings of depression among persons with dementia.

ICT in the care of persons with dementia

The ICT used in the care of persons with dementia can be

described as having two main functions: assistive devices

for cognitive deficits and surveillance technology. Exam-

ples of assistive devices are memory aids, electronic cal-

endars, picture phones and cooker monitors. Surveillance

technologies include safety alarms, bed alarms and door

alarms (19–21). Furthermore, electronic tagging devices

and passive positioning systems, based on mobile tele-

phone technology in combination with technology to

determine position [Global Positioning System (GPS)], are

surveillance technologies that have been developed during

recent years and that are beginning to be useful in

dementia care (16, 17, 22).

In managing daily life, some of the needs relatives and

persons with dementia have could be met through the use

of ICT devices. A review by Lauriks et al. (23) showed that

ICT is increasingly being used to support relatives and

persons with dementia in their daily life. Furthermore,

studies performed in the United Kingdom (UK) (19) and

Norway (24) indicate that ICT has the potential to con-

tribute to perceived benefits for the relatives of persons

with dementia.

Relatives of persons with dementia have been reported

to have generally positive attitudes towards using ICT in

both residential homes for persons with dementia (25)

and in their own homes (26). A recent review by Lauriks

et al. (23) and a survey study by Rialle et al. (27) showed

that using GPS technology and monitoring systems

enhanced feelings of security and reduced fear and

anxiety among relatives of persons with dementia. In

short, previous research indicates that ICT can be used as

a support for relatives in the daily care of persons with

dementia.

While this previous research is helpful, it has limitations

and further investigation is justified. There is a wealth of

studies explaining how the consequences of dementia are

experienced and managed by relatives. However, there is a

shortage of studies about relatives’ reflections on using ICT

when providing this care, and most existing studies have

been carried out in the UK. Thus, more studies are nec-

essary to increase our understanding of relatives and per-

sons with dementia and their reflections on using ICT in

the context of everyday life.

Aim

The aim of this study was to describe relatives’ reflections

on different kinds of ICT devices that are used or can be

used in the daily care of persons with dementia.

Method

This study used a descriptive design with a qualitative

approach based on individual interviews.

Participants

The sample consisted of fourteen spouses of persons with

dementia between 62 and 89 years of age. The selection

method was purposive sampling (28), aiming to achieve

variation in participants¢ age, sex and living situation. The

criteria for participating in the study were being the rela-

tive of a person with dementia, having knowledge of and/

or previously used ICT devices in the care of persons with

dementia and being able to communicate in Swedish. Ten

participants had experiences of using one to two different

types of ICT, and four had no such experience. Additional

characteristics of participants and their spouses with

dementia are presented in Table 1.

Procedure

Personnel at the Relative Caregivers Support Centre in a

municipality in central Sweden identified relatives who

met the criteria for study participation and provided initial

information about the study. Relatives who were inter-

ested in participating were then contacted by the first

author and received detailed information about the study¢saim and procedure. Subsequently, the first author sched-

uled an interview at a place and time preferable to the

relatives. All participants received written and oral


Scandinavian Journal of Caring Sciences � 2011 Nordic College of Caring Science

My, your and our needs for safety and security 105

STUDY II

nformation about the study and gave their written con-

sent. Participation in the study was voluntary, and all

participants were informed that they could quit at any

point without having to provide an explanation. The first

author conducted all interviews: nine interviews were

conducted in the informant’s home and five interviews at

the Relative Caregivers Support Centre. The interviews

were conducted during the period October 2007 – March

2008; they were tape-recorded and lasted between 30 and

68 minutes (mean 47 minutes). The first author was

responsible for transcribing all interviews.

Data collection

Each interview included initial interview questions, a

presentation of ICT devices and a second round of inter-

view questions. The presentation included a 5-minute-

long computer presentation with still pictures of and

commentaries on the most common types of ICT used for

older people (i.e. door alarms, safety alarms, passage sen-

sors and bed alarms). The interviewer (AO) supplemented

this presentation with verbal information about assistive

devices for cognitive deficits and also showed a passive

positioning alarm, hereafter called an electronic tracking

device. The reason for showing the computer presentation

and the electronic tracking device was to create a common

understanding of what ICT devices could look like and be

used for.

The first author began each interview with open ques-

tions about what kind of ICT devices the informants had

used or heard of, if they could describe the devices¢ func-

tionality, what they thought about the ICT devices and

how they had received information about ICT (29). Fol-

lowing the presentation, the interviewer continued asking

open-ended questions concerning relatives¢ perception and

experience of using ICT, decisions concerning use of ICT,

and reflections on integrity and self-determination when

using ICT in the care of persons with dementia.

Data analysis

Data were analysed inductively (30) using both manifest

and latent qualitative content analysis, as specified by

Graneheim and Lundman (31). The analysis process began

with the first author listening to and reading through all

interviews repeatedly to gain an overview and general

impression. The second author listened to three interviews

and read through five interviews. The analysis was con-

tinued by the first author, who identified meaning units

related to the study aim. Each meaning unit was then

condensed and labelled with a code. The different codes

were grouped into subcategories, and subcategories that

expressed related meanings were sorted into categories.

The underlying meaning of the findings resulted in a

theme. The analysis was carried out using a dynamic

process of alternating between the whole and the parts. To

strengthen both credibility and dependability, the first

author performed the analysis and all authors discussed

the different steps of the analysis process to reach agree-

ment in the coding and categorization.

Ethical considerations

The Advisory Board at the local university granted per-

mission for the study (52-507/07). Written permission to

perform the study was also received from the head of the

Relative Caregivers Support Centre. Because the inter-

view questions could give rise to feelings of discomfort

among informants, the interviewer used a sensitive

approach (29). This meant being sensitive to the possible

need to take a break or to stop the interview, e.g., when

emotionally difficult situations arose. The interviewer set

aside plenty of time for meeting informants’ potential

needs for reflection and discussion in connection with the

interviews. The recorded data were treated confidentially

and kept locked in a fire- and theft-proof safe at the

university.

Table 1 Demographics of relatives and persons with dementia and

their experiences of using specific ICT

All Woman Men

Relatives

Sex 14 8 6

Mean age (years) (SD) 73 (10) 75 (9) 71 (11)

Persons with dementia

Sex 14 6 8

Mean age (years) (SD) 76 (10) 70 (11) 80 (6)

Living

Own home 10 5 5

Residential home for persons

with dementia

2 2

Unit for short-time care 2 1 1

Diagnosis

Alzheimer¢s disease 11 5 6

Vascular dementia 3 1 2

Years since diagnosis (mean time) 6 6 6

ICT

Surveillance aids

Safety alarm 4 2 2

Bedalarm 1 1

Door alarm 1 1

Passage sensor 1 1

Electronic tracking device 2 1 1

Assistive devices

Cooker monitors 1 1

Talking cazette/magazine 1 1

Picture button telephone 1 1

Memory aid 1 1

Special remote control 1 1

ICT, information and communication technology.



106 A. Olsson et al.

Results

The overall theme – Shifting between different perspectives: my,

your and our needs for safety and security – describes how

relatives shifted between their own needs for safety and

security and what they perceived to be the need of the

person with dementia when reflecting on the use of ICT.

The findings presented in the three categories – ICT – a

support in daily life, ICT – internal and external conditions and

ICT – the decision to use or not use – together consist of six

subcategories with statements about reflections on ICT in

relation to time, place and/or functionality. Time was

connected to a perceived need for ICT in the past, present

and future, both for relatives and for persons with

dementia. Place was associated with temporary and per-

manent changes in the living situation. The functionality

of the ICT device primarily concerned design aspects. The

categories included descriptions of feelings of safety and

security in relation to using or not using ICT, both for

relatives themselves and what they perceived to be feelings

of safety and security for the person with dementia. An

overview of the theme, the categories and subcategories is

presented in Table 2.


The category ICT – a support in daily life – consisted of four

subcategories: maintaining independence, getting help in

an emergency, preventing harm and finding the person

with dementia. Relatives shifted between describing their

fear that the person with dementia would disappear or

harm him-/herself and strategies for creating safety and

security, both with and without ICT.

Maintaining independence. In the subcategory maintaining

independence, relatives mainly described the perceived per-

spective of the person with dementia. One relative with

experience of using a picture phone reported that she

perceived that it helped the person with dementia

maintain contact with family and friends. The relative

programmed in phone numbers and put pictures on the

picture phone so that the person with dementia could

easily call friends and family members just by pushing a

button on the phone. In this way, the picture phone

helped the person with dementia maintain independence,

something the relatives described as important. One rela-

tive made use of a memory aid and recorded messages to

remind the person with dementia about activities, e.g.

doctors’ appointments. Informants, both those with and

without experiences of using an electronic tracking device,

said that it gave the person with dementia an opportunity

to remain physically active, despite progressive disease,

and to maintain freedom of movement and thereby

experience better quality of life.

The electronic tracking device allowed her to keep

running and exercising for a long time. (Relative 2)

The electronic tracking device is needed so that they

(persons with dementia) can move freely near their

home on short walks. (Relative 10)

Getting help in an emergency. In this subcategory, mainly

the perspective of relatives was described, and the safety

alarm was the ICT device that all informants referred to.

Relatives referred to ICT as a support when they needed

help in varyingly urgent situations, both for themselves

and for the person with dementia. Relatives had

used the safety alarm for different purposes, e.g. when

the person with dementia had fallen and they needed

help.

I couldn¢t get him up off the floor myself // then they

came and helped me get him up // it was a great relief.

(Relative 1)

Informants also used the safety alarm when they could not

get the person with dementia in bed at night and when the

relatives themselves suddenly became ill. Relatives who

had no experience of using a safety alarm could see a

possible need for one in the future.

Preventing harm. In the subcategory preventing harm, rela-

tives¢ statements showed a pattern of shifting between

their own perspectives and what they perceived to be the

perspective of the person with dementia. The most com-

monly mentioned situation associated with a need or

desire for ICT to prevent harm was when the person with

dementia made attempts to leave the home unaccompa-

nied, during daytime or at night. One informant talked

about how a door alarm allows one to catch up with the

person with dementia and help him/her back into the

Table 2 Overview of subcategories, categories and theme revealed in the analysis

Theme Shifting between different perspectives: my, your and our needs for safety and security

Category ICT – a support in daily life ICT – internal and external conditions ICT – the decision

to use or not use

Sub-category Maintaining

independence

Getting help

in an emergency

Preventing

harm

Finding the

person with

dementia

Knowledge,

skills and abilities

Financial aspects

ICT, information and communication technology




STUDY II

house, but to further increase the sense of safety and

security for both of them, the informant had also supple-

mented the door alarm with a child-safe lock and a non-

openable door handle.

The main advantage of the door alarm is that I quickly

understand that something is happening and that I

have time to stop her before she gets very far.

(Relative 10)

To prevent persons with dementia from leaving home,

some informants felt compelled to lock the exterior door.

While the goal of locking the door was to increase safety

both for the person with dementia and for themselves, the

relatives also discussed the negative consequences of this

measure.

Now I¢ve locked the seven-lever lock, and that¢s not

good either. (Relative 3)

This traps him inside and makes me nervous. (Relative

6)

Relatives described how they always had to keep an eye on

the person with dementia, and after locking the exterior

door, they felt they had more control over his/her

whereabouts. Relatives also invented their own nontech-

nical solutions to increase security for the person with

dementia and for themselves. They hoped that these

solutions would minimize or completely prevent the risk of

the person with dementia leaving home on his/her own.

I come up with my own alarms, a stool or bench in

front of the door, a bunch of bells on a band that falls

to the floor when someone uses the door handle.

(Relative 3)

Relatives also mentioned movement detectors, passage

sensors and bed alarms (pressure mats) as potentially

useful ICT devices in the future.

I think it would be good if we could get a bed alarm

without paying for it // I sleep pretty deeply // I don’t

wake up when she gets up // I usually sleep so deeply

// I was afraid after she fell down // after that I’m more

afraid it will happen again... that she’ll fall... // for me

too... because she gets up anyway // she doesn’t know

but it makes me feel more secure // if I woke up when

she got up and could check on her... well... go with

her to the toilet... and make sure everything is okay.

(Relative 14)

Finding the person with dementia. In the subcategory finding

the person with dementia, informants described shifting

between their own perspective and the perceived perspec-

tive of the person with dementia. Relatives reported being

constantly worried that the person with dementia would get

lost when and if he/she were left home alone, and they

feared that he/she would be found too late or never.

He was nowhere in the apartment and the front door

was open // then came the cold shivers. (Relative 4)

Relatives who had used an electronic tracking device had

positive experiences. They said that it gave them a feeling

of security, and they also perceived that it gave a feeling of

security for the person with dementia. Nonusers of elec-

tronic tracking devices had heard from others that they

worked well, and some informants were interested in

testing such a device.

It was terrible before we got it (the electronic tracking

device)... then you just had the clock like this... and

then nothing happened she was just gone... and an

hour could go by... if you don’t have it (the electronic

tracking device) then the anxiety is horrible... I can’t

describe it, it’s so horrible. (Relative 2)

Some relatives expressed a potential need for an electronic

tracking device in the future, e.g., in connection with a

change in living situation (which might make finding the

way home difficult for the person with dementia), when

visiting family/friends or during stays at the summer

cottage.

The informants emphasized that electronic tracking

devices had to be designed to reduce the risk that the person

with dementia would try to remove the device; they sug-

gested that it could be sewed into his/her clothes, worn on a

belt or placed in a handbag. They also said that electronic

tracking devices need to be reliable and easy to use, both for

the persons with dementia and for relatives, and that the

design of the electronic tracking device must be tailored to

the severity of dementia. One relative reported a frighten-

ing experience of using an electronic tracking device, in

which administrative failure at the supplier firm resulted in

problems finding the person with dementia.


The category ICT – internal and external conditions – consisted

of two subcategories, ‘knowledge, skills and abilities¢ and

‘financial aspects¢, and describes conditions that relatives

mentioned as necessary for the use of ICT.

Knowledge, skills and abilities. The informants reported that

the persons with dementia and themselves had varying

levels of knowledge, skills, abilities and interest in relation

to ICT. They also said that relatives¢ sex and age, as well as

the severity of the disease of the person with dementia,

influenced what kind of ICT they could use.

All informants knew about the safety alarm and its

functionality. Relatives with no personal experience

mentioned that safety alarms were used by friends with

dementia living in units for short-time care and in resi-

dential homes. Some relatives expressed that they had

very limited knowledge of ICT and also limited skills and

abilities to handle it. Furthermore, relatives said that ICT

manuals are difficult for old people to understand.

Female informants found it difficult to know what kind

of ICT to use, and they said it was their husband (the

person with dementia) who had previously taken care of

technological issues. However, some female informants




had ICT knowledge and skills based on their own interest

or previous occupation. One male informant described a

gender perspective in the following way:

It seems to me it might be harder in many situations...

deciding what technical solutions I should come up

with at home // which is usually easier for a man who

uses technology more often // it’s not easy for all men

either, but it is more common for us to have screw-

drivers and wrenches at home. (Relative 10)

Informants described sharing their ICT knowledge and

skills with other relatives of persons with dementia, e.g., at

gatherings at the Relative Caregivers Support Centre. In

addition, friends and the Centre for Aids and Assistive

Devices were described as important sources of informa-

tion about new ICT devices.

Several informants reported that, at this point, they did

not think the person with dementia could deal with certain

ICT devices. Especially, the safety alarm was not regarded

as suitable for persons with advanced severity of dementia,

because they would not remember to push the button to

activate the alarm. Therefore, the severity of dementia

largely determined the kind of ICT to use.

Financial aspects. Relatives said that many of the ICT devices

they had come in contact with were very expensive and that

they could not afford them. The informants described how

they had applied for, e.g., a tracking device, but that the

municipality did not supply or subsidize these technical aids.

They expressed dissatisfaction with the situation.

The municipality has put up a lot of resistance to

getting an electronic tracking device, because of the

costs. (Relative 2)

A safety alarm was used by some informants, and despite

the cost, they thought it was worth it. One relative related

the following reflection about the door alarm supplied by

the municipality:

I was at the Centre for Aids and Assistive Devices and

they had a door alarm, but I reacted to the price... it

shouldn’t have to be so expensive // at the store I

found a door alarm for 1200 SEK. (Relative 10)


In the category ICT – the decision to use or not use, relatives

described ethical concerns and conditions for including the

person with dementia in the decision of using or not using

ICT, shifting between describing their own perspective and

the perceived perspective of the person with dementia. The

informants said that when two people have lived together

for many years, it is difficult to make decisions for one

another, even if one of them has been struck by dementia.

Relatives also reported that, despite difficulties in com-

municating with the person with dementia, they found it

important to let him/her be involved in decisions about

what ICT to use in daily life.

If I didn’t make it plain to him that I intended to get

ICT and he found out, then I would have messed it up

somehow and not dealt with him like the person he is.

(Relative 3)

One relative had let the person with dementia be active in

the process of choosing and trying out different kinds of

ICT, so he would not feel insulted. One ethical aspect

relatives described as a problem concerned informing and

explaining to the person with dementia that they had

considered using ICT and doing so in a way that would not

offend him/her. One relative said she explained to her

husband that she would use the safety alarm for his own

good and that it would minimize the time he would have

to lie on the floor if he fell. The informants felt that if

persons with dementia and their relatives had the oppor-

tunity to learn more about ICT before the need emerged,

relatives would feel more comfortable about making

decisions concerning later use of such devices.

Another ethical aspect of using a passive positioning

alarm that informants described was their concern that the

person with dementia would not like being supervised. Yet

another aspect mentioned by relatives was that the

severity of dementia affects their ability to decide on their

own if, how and when to use an electronic tracking device.

Despite the risk of violating the integrity of persons with

dementia, informants felt that the electronic tracking

device could provide independence and security for both of

them. Most relatives believed that the person with

dementia would accept a passive positioning alarm, but

some informants expressed doubts about what attitude he/

she would have towards using it.

Perhaps he would find it unpleasant to be closely

watched like that. (Relative 13)

I think she¢d think it was good if there was an alarm //

that it would be good to have control // I don¢t think it

would affect her so much. (Relative 7)

Discussion

The main finding of the present study concerns how rel-

atives shifted between describing their own needs for

safety and security and the perceived perspective of the

person with dementia when reflecting on the use of ICT.

Relatives¢ reflections on ICT were interpreted as efforts to

find a balance between these perspectives, simultaneously

taking time, place and functionality into consideration.

The central issue from the perspective of the relative and

the perceived perspective of the person with dementia is

the need for safety and security, which is in line with the

findings of Landau et al. (26).

While relatives¢ reflections on using ICT in dementia

care included reasoning about different ethical aspects, the

overall impression is that the opportunity to use ICT

devices to create a safe and secure environment for

both the person with dementia and his/her relative




STUDY II

overshadows potential ethical problems, such as violating

the integrity of the person with dementia.

Beyond the perceived safety and security that ICT pro-

vided relatives, ICT reduced their constant fear and con-

cerns that something could happen to the person with

dementia. In addition, relatives perceived that ICT helped

persons with dementia to maintain their independence

and freedom of movement. The present findings suggest

that the decision to use or not use ICT in the care of per-

sons with dementia is not straightforward. Instead, this

decision involved considering when, what type and how to

use or not use ICT as well as whose needs should guide the

decision. These findings illustrate the need for reciprocity

between relatives and persons with dementia in the

process of making decisions about use of ICT.

With regard to using ICT in dementia care, the auton-

omy and integrity of the person with dementia are central

issues (32). In the present study, this was illustrated in

relatives’ reports on the dilemmas they had experienced in

relation to decisions to use or not use ICT. Relatives de-

scribed taking into account their own needs as well as

those of the person with dementia and striving to avoid

their own needs being met at the cost of ignoring the needs

of others – a finding also described by Robinson et al. (16).

In a genuine caring relationship, such as that between a

person with dementia and his/her relative, there is an

ethical requirement to respond to the other person¢s needs

(33). Despite the fact that the dementia disease made it

difficult for relatives in the present study to discuss with

their spouse when and what kind of ICT to use, they did

emphasize the importance of involving the person with

dementia in the decision process and found it difficult to

make decisions for him/her. Therefore, an advanced care

planning process, in which both parties play a mutual and

active role, would respect the autonomy of persons with

dementia (34) and prevent them from feeling offended.

The present findings also indicate that, for some rela-

tives, a gender perspective in relation to general knowl-

edge of and interest in technology had an impact on their

propensity to use ICT devices in the daily care of persons

with dementia [cf. (27)]. In addition, the severity of

dementia seemed to play a decisive role in relatives’

appraisal/decision regarding the use of ICT. Relatives also

said that the functionality and design of the ICT device are

important to take into consideration, including factors

such as the size of the device [cf. (35)], its reliability and

ease of use both for the relative and for the person with

dementia [cf. (16, 17, 36)].

Methodological considerations

The present study includes informants with highly varying

experiences and knowledge of ICT. Thus, the findings are

not solely based on personal experiences of using ICT in

the daily care of persons with dementia, but also on

informants¢ perceptions and assumptions concerning ICT.

Most interviews were performed in the informants¢ own

homes, and the nearness of the person with dementia may

have influenced these informants¢ narratives. On the other

hand, the interviews performed at the Relative Caregivers

Support Centre may have been influenced/disturbed by

relatives¢ concerns about their spouses being alone at

home. In the present study, individual interviews were

chosen because of their suitability for collecting data on

personal experiences of sensitive topics. In addition, the

fact that interviews could be conducted in the informants¢homes allowed them to ‘keep an eye on’ their spouses.

To establish trustworthiness in the study, the criteria

described by Graneheim and Lundman (31) have been

followed, and credibility was achieved by choosing par-

ticipants who varied in age, sex and living situation. After

eleven interviews, we recognized the need for more vari-

ation regarding the living situation of family members with

dementia and decided to include three additional relatives

of persons with dementia living in residential homes or

units for short-time care. Quotations for the interviews

provide examples to further establish credibility. The

generalizability of the study result is limited, as this is not a

goal of qualitative research. With regard to transferability,

the present findings may be applicable to caregiving

spouses in the same situation, i.e. caring for a person with

dementia or other cognitive dysfunction. Transferability of

the findings to other contexts or groups, e.g. to relatives

other than spouses, must be judged by the reader, based on

his/her own experience, and determined through further

research.

Conclusion

The present findings have implications for clinical practice

and policy regarding dementia care, as well as for future

research. Our study shows that the relatives of persons

with dementia were most likely to have received infor-

mation about various kinds of ICT devices from family,

friends, the Relative Caregivers Support Centre and the

Centre for Aids and Assistive Devices. The fact that most

relatives had not received information about ICT devices

from formal care providers may be a consequence of

nursing staff¢s limited knowledge of ICT. Nurses who

frequently meet with persons with dementia and their

relatives, e.g. district nurses, need to have up-to-date

knowledge of ICT devices for use in dementia care,

including functionality, design and financial issues. This

can be achieved through continuous and regular infor-

mation and training for nursing staff, and also by including

information about ICT in nursing education.

Relatives who are willing and able to care for their

family member with dementia should be offered the best

possible resources, including various ICT devices,

throughout the progression of the dementia disease.




Financial concerns regarding certain ICT must be

acknowledged and may be addressed by offering less

expensive alternatives or by policy decisions regarding

subsidizations. Providing early information about ICT to

persons with dementia and their relatives, and involving

them as mutual and active parties in the advance care

planning process, could facilitate joint decision-making

regarding use of ICT. Increased use of ICT may help to

improve safety and security as well as quality of life for all

concerned, and for some persons with dementia, the use of

ICT devices may also help to delay admission to a long-

term care facility.

Relatives of persons with dementia struggle to create a

situation of safety and security in daily life for themselves

and persons with dementia. While the present findings

indicate that relatives’ decision to use or not use ICT

included reasoning about ethical aspects, the opportunity

to create a safe and secure environment with ICT devices

overshadowed potential ethical problems. How persons

with dementia experience the use of ICT, and how they

perceive ethical aspects of using ICT, is largely unknown. It

is important to increase knowledge about the perspective

of persons with dementia, both in the clinical context

when making decisions regarding use of ICT in daily care

and in the research community. We believe that involving

persons with dementia and their relatives in research on

the use of ICT in dementia care would be useful and would

promote a development towards increased use of ICT in

the daily life/care of persons with dementia.

Acknowledgements

We thank the relatives who agreed to be interviewed and

to Marie Bengtsson at the Relatives Support Centre in the

municipality.

Author contributions

Annakarin Olsson, Maria Engstrom, Claudia Lampic and

Kirsti Skovdahl were responsible for the study design.

Annakarin Olsson drafted the manuscript and performed

the data collection and data analysis. Maria Engstrom,

Claudia Lampic and Kirsti Skovdahl participated in the

data analysis and made critical revisions to the manuscript.

Maria Engstrom, Claudia Lampic and Kirsti Skovdahl

supervised the study.

Funding

This study was supported by grants from the University of

Gavle, Sweden, The Swedish Dementia Association and

Swedish Society of Nursing.

References

1 Magnusson L, Hanson E, Borg M. A

literature review study of information

and communication technology as a

support for frail older people living at

home and their family carers. Technol

Disabil 2004; 16(4): 223–35.

2 Robinson L, Hutchings D, Dickinson

HO, Corner L, Beyer F, Finch T,

Hughes J, Vanoli A, Ballard C, Bond J.

Effectiveness and acceptability of

non-pharmacological interventions to

reduce wandering in dementia: a

systematic review. Int J Geriatr Psychi-

atry 2007; 22: 9–22.

3 Hellstrom Y. Quality of Life in Older

People Receiving ADL Help: Help, Help

Providers, and Complaints. 2003, Lund

University, Lund, Sweden.

4 Elliott BA, Gessert CE, Peden-McAlpine

C. Family decision-making in advanced

dementia: narrative and ethics. Scand J

Caring Sci 2009; 23(2): 251–8.

5 Hughes JC, Hope T, Reader S, Rice D.

Dementia and ethics: the views of

informal carers. J R Soc Med 2002;

95(5): 242–6.

6 Stoltz P, Uden G, Willman A. Support

for family carers who care for an el-

derly person at home – a systematic

literature review. Scand J Caring Sci

2004; 18(2): 111–9.

7 Georges J, Jansen S, Jackson J,

Meyrieux A, Sadowska A, Selmes M.

Alzheimer¢s disease in real life – the

dementia carer¢s survey. Int J Geriatr

Psychiatry 2008; 23: 546–51.

8 Wimo A, von Strauss E, Nordberg G,

Sassi F, Johansson L. Time spent on

informal and formal care giving for

persons with dementia in Sweden.

Health Policy 2002; 61(3): 255–68.

9 Soderlund M. Som drabbad av en

orkan. Anhorigas tillvaro nar en narsta-

ende drabbas av demens. 2004, Abo

Akademi University in Finland, Abo.

10 Papastavrou E, Kalokerinou A, Papa-

costas SS, Tsangari H, Sourtzi P. Car-

ing for a relative with dementia:

family caregiver burden. J Adv Nurs

2007; 58(5): 446–57.

11 Torti FM Jr, Gwyther LP, Reed SD,

Friedman JY, Schulman KA. A mul-

tinational review of recent trends and

reports in dementia caregiver burden.

Alzheimer Dis Assoc Disord 2004; 18(2):

99–109.

12 Black W, Almeida OP. A systematic

review of the association between the

behavioral and psychological symp-

toms of dementia and burden of care.

Int Psychogeriatr 2004; 16(3): 295–315.

13 Machnicki G, Allegri RF, Dillon C,

Serrano CM, Taragano FE. Cognitive,

functional and behavioural factors

associated with burden of caring for

geriatric patients with cognitive

impairment of depression: evidence

from a South American sample. Int J

Geriatr Psychiatry 2009; 24: 382–9.

14 McShane R, Gedling K, Keene J,

Fairburn C, Jacoby R, Hope T. Getting

lost in dementia: a longitudinal study

of a behavioral symptom. Int Psycho-

geriatr 1998; 10(3): 253–60.

15 Rasquin SMC, Willems C, de Vliger S,

Geers RPJ, Soede M. The use of a

technical devices to support outdoor

mobility of dementia patients. Technol

Disabil 2007; 19(2/3): 113–20.

16 Robinson L, Hutchings D, Corner L,

Beyer F, Dickinson H, Vanoli A, Finch

T, Hughes J, Ballard C, May C, Bond




STUDY II

J. A systematic literature review of the

effectiveness of non-pharmacological

interventions to prevent wandering in

dementia and evaluation of the ethical

implications and acceptability of their

use. Health Technol Assess 2006; 10(26).

17 Robinson L, Brittain K, Lindsay S,

Jackson D, Olivier P. Keeping in Touch

Everyday (KITE) project: developing

assistive technologies with people with

dementia and their carers to promote

independence. Int Psychogeriatr 2009; 5:

1–9.

18 Duggan S, Blackman T, Martyr A, Van

Schaik P. The impact of early dementia

on outdoor life. Dementia 2008; 7(2):

191–204.

19 Miskelly FG. Assistive technology in

elderly care. Age Ageing 2001; 30(6):

455–8.

20 Adlam T, Faulkner R, Orpwood R,

Jones K, Macijauskiene J, Budraitiene

A. The installation and support of

internationally distributed equipment

for people with dementia. IEEE Trans

Inf Technol Biomed 2004; 8(3): 253–7.

21 Topo P, Sarikalle K, Maki O, Parvainen

S. Enabling Technologies for People

with Dementia. Report of assessment

study in Finland 2004. http://www.

enableproject.org (last accessed 8

August 2011).

22 Miskelly F. A novel system of elec-

tronic tagging in patients with

dementia and wandering. Age Ageing

2004; 33(3): 304–6.

23 Lauriks S, Reinersmann A, Van der

Roest HG, Meiland FJ, Davies RJ,

Moelaert F, Mulvenna MD, Nugent

CD, Droes RM. Review of ICT-based

services for identified unmet needs in

people with dementia. Ageing Res Rev

2007; 6(3): 223–46.

24 Torp S, Hanson E, Hauge S, Ulstein I,

Magnusson L. A pilot study of how

information and communication

technology may contribute to health

promotion among elderly spousal

carers in Norway. Health Soc Care

Community 2008; 16(1): 75–85.

25 Engstrom M, Lindqvist R, Ljunggren

B, Carlsson M. Relatives’ opinions of

IT support, perceptions of irritations

and life satisfaction in dementia care.

J Telemed Telecare 2006; 12(5): 246–

50.

26 Landau R, Werner S, Auslander GK,

Shoval N, Heinik J. Attitudes of fam-

ily and professional care-givers

towards the use of GPS for tracking

patients with dementia: an explor-

atory study. Br J Soc Work 2009;

39(4): 670–92.

27 Rialle V, Ollivet C, Guigui C, Herve C.

What do family caregivers of Alzhei-

mer’s disease patients desire in smart

home technologies? Contrasted

results of a wide survey. Methods Inf

Med 2008; 47(1): 63–69.

28 Polit D, Beck CT. Nursing Research –

Generating and Assessing Evidence for

Nursing Practice, 8th edn. 2008, Lip-

pincott Williams & Wilkins, Philadel-

phia, PA.

29 Kvale S. The Qualitative Research Inter-

view. (Den kvalitativa forskningsinterv-

jun). 1997, Studentlitteratur, Lund.

30 Morse JM, Field PA. Nursing Research:

The Application of Qualitative Approach.

2002, Nelson Thomes Ltd, Chelten-

ham, UK.

31 Graneheim UH, Lundman B. Quali-

tative content analysis in nursing

research: concepts, procedures and

measures to achieve trustworthiness.

Nurse Educ Today 2004; 24(2): 105–

12.

32 Welsh S, Hassiotis A, O’Mahoney G,

Deahl M. Big brother is watching you

– the ethical implications of electronic

surveillance measures in the elderly

with dementia and in adults with

learning difficulties. Aging Ment Health

2003; 7(5): 372–5.

33 Logstrup KE. The Ethical Demand.

1971, Fortress Press, Philadelphia, PA,

USA.

34 Defanti CA, Tiezzi A, Gasparini M,

Gasperini M, Congedo M, Tiraboschi

P, Tarquini D, Pucci E, Porteri C,

Bonito V, Sacco L, Stefanini S, Borghi

L, Colombi L, Marcello N, Zanetti O,

Causarano R, Primavera A. Ethical

questions in the treatment of subjects

with dementia. Part I. Respecting

autonomy: awareness, competence

and behavioural disorders. Neurol Sci

2007; 28(4): 216–31.

35 Faucounau V, Riguet M, Orvoen G,

Lacombe A, Rialle V, Extra J, Rigaud

A-S. Electronic tracking system and

wandering in Alzheimer’s disease: a

case study. Ann Phys Rehabil Med

2009; 52(7–8): 579–87.

36 Cahill S, Macijauskiene J, Nygard

A-M, Faulkner J-P, Hagen I. Tech-

nology in dementia care. Technol

Disabil 2007; 19(2/3): 55–60.




STUDY III

RESEARCH ARTICLE Open Access

A passive positioning alarm used by persons withdementia and their spouses – a qualitativeintervention studyAnnakarin Olsson1,2*, Maria Engström1,4, Claudia Lampic3 and Kirsti Skovdahl2,5

Abstract

Background: Increasingly, information and communication technology is being used to support persons withdementia living at home and their relatives. The aim of the present intervention study was to describe and explorethe use and experiences of using a passive positioning alarm, over time, in daily life among persons with dementiaand their spouses.

Methods: Using an ethnographically inspired approach, five couples, each including a person with Alzheimer´ sdisease and his/her spouse living in their own home, were repeatedly observed and interviewed regarding theirexperiences of using a passive positioning alarm. Interview text transcripts and field notes were analyzed usingqualitative content analysis.

Results: The main findings show changes over time, where testing and checking the passive positioning alarmsuccessively led to trust in the alarm and in one own´s ability to use it. These components were a prerequisite forthe couples to perceive the value of the alarm.

Conclusions: A passive positioning alarm for persons with dementia and their spouses needs to be packaged as a“service” with flexibility for each user and based on user needs, abilities, knowledge and skills. Using a passivepositioning alarm can be a valuable support that allows persons with dementia to be alone outdoors and canincrease safety and security for them and their spouses. The present study contributes to our understanding ofwhat prerequisites need to be in place and what barriers need to be dealt with before successful implementationcan occur.

Keywords: Alzheimer´s disease, Information and communication technology (ICT), Interview, Participantobservation, Passive positioning alarm, Spouse, Tracking

BackgroundBeing outdoors on one’s own is considered an importantactivity of daily living and, for many; it is associated withthe ability to maintain independence. A dementia diagnosisis distressing in its own right, but when paired with thethreat of losing one’s independence, the issue of the livingsituation becomes problematic for both the person withdementia and his/her relatives [1]. One way to help personswith dementia be outdoors by themselves and to increase

safety and security for relatives and persons with dementiamay be to use different kinds of information and communi-cation technologies (ICT) [2].Living with a progressive disease such as dementia affects

the entire life situation [3], not only for the person withdementia, but also for his/her relatives [4,5]. For personswith dementia, managing daily life often requires the helpand support of relatives [6]. Several studies have shown thatrelatives of a person with dementia experience a feeling ofbeing burdened [1,7-9]. The impairments accompanyingthe disease, e.g., memory and orientation difficulties, maylead to safety issues, such as the person with dementiagetting lost [10], and may even force relatives to lock exter-ior doors or in other ways prevent the person with

* Correspondence: [email protected] of Health and Occupational Studies, University of Gävle, Gävle80176, Sweden2School of Health and Medical Sciences, Örebro University, Örebro 701 82,SwedenFull list of author information is available at the end of the article

© 2013 Olsson et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the CreativeCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly cited.

Olsson et al. BMC Geriatrics 2013, 13:11http://www.biomedcentral.com/1471-2318/13/11

STUDY III

dementia from going outdoors [11,12]. Being outdoors isseen by healthy persons as well as persons with dementiaas something valuable and important [13] and studies haverevealed that being in nature environments has health ben-efits [14,15]. Thus, it would seem to be important todevelop technologies that make it easier for persons withdementia to be outdoors on their own in a way that allowsthem and their relatives to feel safe and secure.According to research in the area, use of ICT in the care

of persons with dementia has increased [2,16,17]. A widerange of technologies exist that are intended to support thedaily life of persons with dementia and their relatives,e.g., GPS (global positioning system) tracking technologies[18-20]. GPS provides a means of locating the user at anygiven moment by locating the device via satellite and send-ing the information via a network to a personal computer, acall center or a cell phone [21]. A review by Lauriks andcolleagues [2] showed that tracking technologies promoteperceived safety and security among relatives of personswith dementia in that such devices allow relatives to locatethe person if he/she is lost. Recently published studies byOlsson et al. [22] and White et al. [20] have revealed thatrelatives of persons with dementia perceived ICT as asupport in everyday life. However, earlier studies in this areahave primarily taken the perspective of relatives and/orhealthcare staff, and the need to investigate the perspectiveof persons with dementia has been emphasized [16,23-25].Studies including the perspective of persons with dementiaby interviewing them have mostly concerned ICT otherthan tracking technologies (e.g. [12,26]), and few of thesehave involved persons with dementia still living in theirown homes (e.g. [19,27]. Some observational studies con-cerning ICT use among persons with dementia have beenidentified [28,29], however these studies did not focus onGPS tracking. Using tracking technologies in the care ofpersons with dementia has also raised ethical concernsconcerning, e.g., the risk of violating the privacy and dignityof these persons [24,30-32], and critical voices have alsobeen heard in society at large suggesting that the technol-ogy could be seen as a form of surveillance [30]. As such, itis important to further investigate users’ use and experi-ences of ICT in everyday life, both persons with dementiaand their relatives.Only a limited numbers of studies [18,24] have

explored and/or described experiences of using GPStracking technology from the perspective of personswith dementia. Observational studies on how involvedactors use as well as relate to GPS tracking are import-ant if we are to create need-driven and individuallyadapted technology. The aim of the present interventionstudy was to describe and explore the use and experi-ences of using a passive positioning alarm, over time, indaily life among persons with dementia and theirspouses.

MethodsDesignA qualitative intervention study with a descriptive andexplorative design was used to investigate variationacross individuals and evaluate the intervention in theirreal-life contexts [33].

Participants and settingThe study was performed in one municipality in centralSweden, from October 2010 to March 2011. Inclusioncriteria were: couples consisting of a person diagnosed witha dementia disease and his/her relative cohabiting in theirown home, the person with dementia should have a desireand need to be outdoors, and both partners should be ableto communicate verbally in Swedish. A purposive sample[34] of five couples, including persons with dementia vary-ing in age and sex, was recruited by healthcare staff at thememory unit within the county council district (n=1) andthe Relative Caregivers Support Centre (n=4). Prior to studyparticipation, all couples had experienced incidents inwhich the person with dementia had had difficulties findinghis/her way home while alone outdoors. Fear of the personwith dementia getting lost was expressed by both thepersons with dementia and their spouses (Table 1).The persons with dementia were all diagnosed with

Alzheimer´ s disease at an early (n=4) or middle (n=1) stageof dementia (ICD-10). All couples were married and livedoutside a city. All persons with dementia performed dailyoutdoor activities, predominantly alone, including takingshort walks in the neighborhood or longer walks in theforest.

Table 1 Demographics of the persons with dementia andspouses

All Women Men

Persons with dementia

Sex 5 2 3

Age (Md years)(range) 68(55–73) 60 71

Years since diagnosis (Md time) 6 6 6

MMSE* (Md)(range) 23(19–28)

Spouses

Sex 5 3 2

Age (Md years) (range) 67 (62–68) 67 65

Living

Terrace house 3

Detached house 1

Apartment 1

Summer cottage 2

Daytime activity program

Frequency (day-s/week)** 3 2 1

* MMSE= Mini Mental State Examination (valued measured < 1 year ago).** Varied between 1–3 days/week.

Olsson et al. BMC Geriatrics 2013, 13:11 Page 2 of 9http://www.biomedcentral.com/1471-2318/13/11

The passive positioning alarm package (PPAP)interventionThe intervention comprised a “service package” containinga transmitter (based on GPS technique), a cell phone, man-uals for the transmitter and the cell phone and a supportperson (who demonstrated the passive positioning alarmand could be reached by telephone) (Figure 1). When thepersons with dementia went on their daily outdoor walks,they carried the transmitter in their pocket, glove or bag.Before the person with dementia left the home (or otherplace), the transmitter was activated by the spouse, whopushed a big red button marked with a cross, thereby creat-ing a virtual fence with a radius of 500 meters. When theperson with dementia left this predefined area, a ShortMessage Service [SMS] with a map was sent to thespouse´s cell phone, enabling the spouse to see the loca-tion of the person with dementia. Before the present studybegan, the passive positioning alarm package (PPAP) wastested for a period of six weeks by healthy elderly personswithout known cognitive impairments.Two weeks before the start of data collection, the

couples received their transmitter, manuals for the trans-mitter and cell phone along with a two-hour verbal instruc-tion session provide by the support person involved in theproject. The support person was a healthcare professionalfrom the municipality with long experience of working withpersons with dementia. During the instruction session, thecouples were able to test the transmitter and cell phone,ask questions and read the manuals. The support personwas responsible for providing technical support throughoutthe study period.

ProcedureParticipant observations and interviewsInspired by an ethnographic approach [35] repeated partici-pant observations and interviews were used to describe andexplore the couples’ experiences and to describe how theyused and handled the PPAP. The observations were con-ducted in the couples´ homes and during outdoor walkswith the persons with dementia. For each couple, data col-lection was performed on five occasions (seven occasionsfor one couple). The observations focused on the couples´handling of the transmitter and cell phone. The interviews,

henceforth called informal conversations [34], focused onhow the persons with dementia and their spouses experi-enced using the PPAP. A co-observer (another healthcareprofessional with long experience of working with personswith dementia, not the support person) participated in17 of the 27 data collection occasions [34]. Use of aco-observer allowed one observer to accompany andobserve the person with dementia on his/her outdoor walk,while the other observer observed and had an informalconversation with the spouse. The researcher and theco-observer alternated roles during the data collectionoccasions. On all data collection occasions, a summary wasmade (together when there were two observers present)immediately after the data collection, where field noteswere written down and data were synchronized [34].The first and last authors conducted the first two data

collection occasions together, the goal being to developideas about how to best carry out the observations andinformal conversations. Details and impressions werediscussed between the researchers after the initial datacollection occasions, concerning, e.g., the appropriate(physical) location from which to visually obtain the mostinformation before and after the person with dementia tookhis/her outdoor walk. For all couples, the first data collec-tion occasion occurred two weeks after they had receivedthe PPAP. On this data collection occasion, the personswith dementia and their spouses were encouraged todescribe their everyday life (focusing on the outdooractivities of persons with dementia) and to describe whythey were interested in participation in the present studyfocusing on use of a passive positioning alarm. The firstoccasion also seemed to be important in creating confi-dence and a trusting relationship.All subsequent data collection occasions followed a spe-

cific pattern (Figure 2). First a joint informal conversationwith the person with dementia and his/her spouse tookplace, where the couple summarized what had happen intheir daily life, in relation to use of the PPAP, since the pre-vious data collection occasion (Part 1). Then the personwith dementia went for an outdoor walk, during which he/she was encouraged and instructed to walk as he/shenormally did when alone. During this walk, an informalconversation was conducted with the person with dementia

manuals+ ++

Figure 1 “PPAP” – transmitter, cell phone, manuals and support person.


STUDY III

and simultaneously, an informal conversation was con-ducted with the spouse in the home (Part 2). Finally, whenthe person with dementia returned home, a joint informalconversation was held with the person with dementia andhis/her spouse, focusing on the former´s experiences of theoutdoor walk, in relation to use of the PPAP (Part 3). To fa-cilitate and stimulate recall [35,36] of the outdoor walksand to see on the map where the person with dementia hadwalked, the transmitter and cell phone were placed on thetable during this part of the data collection. The couple’sown spontaneous experiences and reflections were then fol-lowed up on the subsequent data collection occasions. Thetime intervals between data collection occasions variedacross couples depending on their vacations or otherplanned activities.The observations were mostly recorded using an Mp3

player, though sometimes written observations were made.The audio-recorded observations were used to avoid thecouples feeling ”studied” and hearing what was recorded.The observer described verbally on the Mp3, e.g., thepreparations made (spouses pushing the transmitter button,giving the transmitter to the person with dementia orputting it in his/her pocket, bag or glove) before the personwith dementia went on his/her outdoor walk. To maintaincomplete focus during the observations, most field noteswere written immediately after each data collection. Thefield notes consisted of reflections made during the obser-vations and informal conversations: placement during the

observation and informal conversation, physical position ofthe observer when the person with dementia left the house,perceived state of mind of the spouse and the person withdementia, facial expressions of the spouse and person withdementia, and the weather at the time [34].

Data analysisThe Mp3 files containing the recorded observations and in-formal conversations were transcribed verbatim. The tran-scripts, together with the field notes, were analyzed usingqualitative content analysis as described by Graneheim andLundman [37], Krippendorff [38] and Patton [34]. The fieldnotes provided necessary and important information, allow-ing the researchers to put the data in the “right” context.First, all transcripts and field notes were read throughseveral times to gain an overview and general impression ofthe data. Second, meaning units related to the study aimwere identified, thereafter condensed and labeled with acode. These steps were performed by the first author anddiscussed with the last author. Codes that expressed relatedmeanings were grouped together into five sub-categoriesand two categories. The identified codes, sub-categoriesand categories were discussed in the entire research team.Analysis and findings from observations and informal con-versations during the outdoor walks (Part 2), concerningthe persons with dementia and their strategies for and feel-ings about being alone outdoors, will be reportedelsewhere (Figure 2).

Observation and conversationoccasion 1

1 2 3 1 2 3 1 2 3

Observation and conversation occasion 2

Observation and conversation occasion 5

1

2

3

Observation and conversation spouse + persons with dementia +researcher + possible co-observer.

Persons with dementia walks (alone or with researcher or co-observer)Researcher or co-observer continued observation and conversationwith spouse (not included here)

Observation and conversation spouse + persons with dementia +researcher + possible co-observer.

Summarize -point of departure for next occasion

…

Figure 2 Data collection process.


Ethical considerationsApproval was obtained from The Regional EthicalReview Board (2009/078). The participants received oraland written information about the study and both theperson with dementia and the spouse gave their writteninformed consent. Participation in the study was strictlyvoluntary and all participants were assured of confidential-ity. No participant declined participation. Furthermore,methodological and ethical considerations especiallyrelevant in research on persons with dementia were takeninto account [39], such as the fact that observations andconversations might be emotionally stressful and raisefeelings of discomfort among both persons with dementiaand relatives. It was therefore important for the researcherto approach the situation with sensitivity, to look for signsof distress and, if necessary, to end the observation and/orconversation.

ResultsThe participants’ experiences of the PPAP appeared tochange over the time in which the couples were observedusing and becoming familiar with the PPAP. The progres-sion toward comfortable and competent use and handlingof the PPAP was individual, owing to crucial factors such asabilities, knowledge and skills in using the device. By testingand checking the PPAP and their own performance, theydeveloped a trust in the PPAP and in their own ability touse it. In parallel with this increased trust, they alsodescribed the PPAP as valuable. The findings are presentedin three categories and four sub-categories (see Figure 3);the categories “Prerequisites for and barriers to PPAPusability” and “Trust in the PPAP and one’s own ability touse it” are considered preconditions for the category “Valueof the PPAP”.

Prerequisites for and barriers to PPAP usabilityThe couples described and showed the abilities, knowledgeand skills needed to use and handle the PPAP. The designaspects of the PPAP that needed to be revised, changedand/or complemented were discussed by both the spousesand the persons with dementia.

Abilities, knowledge and skillsThe spouses’ described their ICT abilities, knowledge andskills as varying from limited to more extensive. Thespouses who described previously or still working with ICTreported being and were shown to be more comfortablewith using the PPAP. In some couples, the person with de-mentia was primarily the one who had handled, or was stillhandling, technical devices (e.g., remote controls, DVDplayer, etc.) in the home, and in other couples the spousewas the more technical person. Those who felt they hadand showed limited abilities, knowledge and skills reportedon the first data collection occasion that they needed

further verbal and hands-on instructions from a supportperson if they were to use the transmitter and cell phoneand understand the manuals. They showed and expressedproblems with, e.g., picking up an SMS with the map, read-ing and understanding the manuals (instructions), gettingthe transmitter and cell phone started or just knowing andunderstanding whether the transmitter and cell phone bat-teries were fully charged. As some spouses said: ‘Then itdepends on how technical you are and I’m definitely not,right? How familiar you are with cell phones ingeneral’ [spouse occasion 1] and Ì´ m not so great at tech-nical things so I think, can I do this?´ [spouse occasion 2].Spouses who described themselves as more skilled ICTusers expressed and showed confidence in handling thetechnology across all the repeated data collection occasions.

Physical and functional design of the PPAPBoth the persons with dementia and their spousesdiscussed the need for improvements and changes in thedesign of the whole service package, irrespective ofprevious abilities, knowledge and skills in relation todifferent kinds of ICT. Some persons with dementia madestatements about desired changes in the design of the PPAPduring the first data collection occasion, while others nevermentioned changes or described them later on. Among thespouses, all made statements about the need for designchanges, but like the persons with dementia, these state-ments came at different times throughout the data collec-tion. One spouse rewrote the manuals after having seen thetransmitter and phone demonstration, `There’s too muchinformation, reduce the number of steps´ [spouse occasion1] and `step-wise instructions would be desirable´ [spouse

The value of the PPAP- Safety and security

Prerequisites for andbarriers to PPAP

usability- Abilities, knowledge

and skills- Physical and functional

design of the PPAP

Trust in the PPAP and one´s own ability

to use it - Testing and checking the PPAP- Testing and checking one´s own ability

Figure 3 Categories and sub-categories describing the results.


STUDY III

occasion 1]. Furthermore, the persons with dementia saidthat in situations when they felt lost outdoors, it wasimportant to be able to contact and hear/talk to theirspouses. The spouses also felt this was important, `thetelephone button should be activated (work). . .// so we cancommunicate with each other´ [transmitter] [spouse andperson with dementia occasion 2]. Based on their previousICT abilities, knowledge and skills and their need forincreased control, one couple manipulated the PPAP bynot activating a new virtual fence when the person withdementia went alone outdoors. Thanks to this manipula-tion, the position of the person with dementia wasconstantly visible to the spouse. Other couples alsoexpressed wanting this function, because they felt it wouldmake them feel both safe and secure, `would like anon-hidden safety zone. . .//I should always be visible´[cell phone] [person with dementia occasion 5].

Trust in the PPAP and one’s own abilitiesDuring the entire data collection, the spouses expressedand showed a need to test and check the PPAP, and theysought verification from the researcher regarding their useand handling of the ICT. The tests and checks were madeon the basis of the couple’s abilities, knowledge and skills inusing the PPAP. Whether or not they felt they coulddepend on the PPAP was based on their trust in the PPAPand in their own ability to use and handle it.

Testing and checking the PPAPThe spouses reported frequent testing and checking of thePPAP. To do this, the couples took joint walksoutdoors and constantly followed their own path on the cellphone. `Now we´ ve gone out together the last time taking it[transmitter] with us just to see if it worked´ [spouseoccasion 1]. `Then I took both the phone and the GPS[transmitter] with me when I walked in the woods’ [spouseoccasion 3]. This approach was described by the malespouses. The spouses also checked by asking the personwith dementia, when he/she returned from the outdoorwalk alone, whether he/she could describe (remember)where he/she had walked or they gave the person withdementia a cell phone, called him/her and checked theposition on the cell phone. This was both described by thespouses and observed by the researcher.

Testing and checking one´ s own abilityTo determine whether they were handling the PPAP“correctly,” the spouses showed the researcher whattesting and checking one’s own ability could entail, e.g., thedifferent steps in navigating and pushing buttons on thePPAP and cell phone and picking up the map (SMS) as away of verifying that they were using the ICT in the “rightway”. This approach (testing and checking one´ s ownability) was observed more frequently among the female

spouses than among the male spouses. As one spousedescribed: `When it says “go to” then I know exactly what Ishould do. But it often shows. . . sometimes it shows thestock-exchange rates. So should I push the one down here[cell phone] because then I’ll get a (signal). . . now it’s just amess. . . I’m. . . I doing it wrong now? Because I’m not gettinga map. Wait a minute, now I forgot. . . how can I see themap now? Now there’s a connection. Now I’m supposed topush it [transmitter] here right. Right, wasn’t that it?[spouse occasion 2].

The value of the PPAPBoth the persons with dementia and their spousesexpressed, at different points in time, the value of the PPAPin their life. In parallel with increasing trust in the PPAPand in their own ability to use and handle it, they expressedthe value of the PPAP. But the value of the alarm was alsodescribed with some caution, as one spouse said: Ì thinkit´ s good. As long as I make sure she has it [transmitter]with her, in her pocket when she leaves. . . // I try to do this´[remember]. `Then I usually put it [transmitter] on thechest of drawers there so. . . she knows she´ s supposed totake it with her´ [spouse occasion 3]. The reported need forand value of the PPAP differed both between and withincouples.

Safety and securityThe persons with dementia appreciated the PPAP as a dailysupport in compensating for potential physicallimitations, e.g. fear of falling while alone outdoors, butindicated that they could not see the PPAP as providingsupport for their dementia disease today. Some personswith dementia described perceptual impairment as a conse-quence of disease progression, while others expressed littleor no effect of their dementia disease and limitationsrelated to it. The persons with dementia reported beingaware that they would one day be much worse and have agreater need for the PPAP, not just for their own safety andsecurity but also for their spouse’s feelings of safety andsecurity. Most of the spouses felt that the person withdementia had some cognitive problems and the spousesexpressed a desire and/or a need for the PPAP to supportdaily outdoor life for the person with dementia. Theseneeds were based on incidents in which the person withdementia could not find his/her way back home whilebeing outdoors on his/her own or had repeatedlyabsconded from home. One spouse described it as follows:Ì don´ t know if she´ d [person with dementia] dare. . . Idon´ t know, it could happen . . . // so really you need one[transmitter] that she wears. Pretty much all the time. . . //that she wears all the time, then I wouldn´t need to worryabout her going out, then I´ d find her´ [spouse occasion 3].The value of the PPAP was also confirmed by the fact thatall couples wished to keep it after the study was completed.


One spouse expressed it like this: Ì would like to keep it[the passive positioning alarm] . . .// because it really pro-vides security´ [spouse occasion 5]. The couples also saidthat the PPAP would be an important safety andsecurity aid for them when spending time both in theirsummer cottages and in an unfamiliar environment. Oneperson with dementia described how the PPAP could helpher move in the area around her cottage, e.g. picking ber-ries and mushrooms, without being afraid of not findingthe way home, Ì don´t dare go to places I don´t recognize,so I avoid it´ [person with dementia occasion 3].The persons with dementia and their spouses saw the

value of being locatable and saw no problem with thepersons with dementia being monitored; they had not evenconsidered that aspect. One person with dementia said:Ì like the idea that I put it [transmitter] on and then he[spouse] knows where I am´ [person with dementia occa-sion 3]. In response to the researcher’s question concerningpossible feelings of being monitored, both the persons withdementia and the spouses said that being visible on themap outweighs the risk of having their privacy violated, oras one person with dementia expressed it: `But that’s whatwe [persons with dementia] want, to be seen!´ [person withdementia occasion 3]. The possibility for spouses to usetheir cell phone to follow the person with dementia on his/her outdoor walks alone was described as creating both afeeling of safety and security for the couple and the possi-bility of freedom for the person with dementia. One personwith dementia said: `Now when there´ s so much talk aboutbeing locked in, dementia and all. . . then you can´ t see itas a restriction, you have to turn it around and see it as apossibility´ [person with dementia occasion 5].

DiscussionThe aim of the present intervention study was todescribe and explore the use and experiences of using apassive positioning alarm, over time, in daily life amongpersons with dementia and their spouses. The main find-ings revealed changes over time in the participants use andexperiences of the PPAP, such that testing and checking thePPAP successively led to trust in the PPAP and in one´ sown ability to use it. Testing and checking seemed to be aprerequisite for the couples to perceive the value of thePPAP in their everyday outdoor life. However, individualvariations were observed, within and between couples,based on conditions for learning to use, using and handlingthe PPAP.The usability of the PPAP was expressed by the

couples in terms of the value of the PPAP. The personswith dementia and their spouses described a feeling ofsafety and security related to use of the PPAP, that is, theyperceived it as valuable in situations that were important tothem, e.g., being able to move around freely at the cottageand being located if one was lost. The persons with

dementia carried the transmitter when they were aloneoutdoors and saw the value of it, in terms of their own aswell as their spouse´ s feelings of safety and security. Safetyand security aspects described by both persons withdementia and relatives have also been found in earlier stud-ies on the use of tracking technologies in the care ofpersons with dementia [2,19,23,40]. The present study alsoidentified the need for support and repeated practice usingand handling the PPAP to promote a feeling of trust in thePPAP and in one´ s own ability to use it. The participantstalked about the importance of the PPAP being easy to use,and this was expressed by the couples and observed instatements about the physical and functional design of thePPAP and about the abilities, knowledge and skills neededto be able to use the device (cf. [41]). The present resultsalso revealed that, mostly for the spouses, trust in one´ sown abilities to use and handle the ICT and trust in theICT itself were important for actually using the device.Although some persons with dementia felt no current needfor the PPAP, describing themselves as ”too healthy”, allreported wanting the PPAP in the future. However, at theoutset of the study, all couples described occasions whenthe person with dementia had gotten lost while he/she wasalone outdoors. In view of this, it appears important thatpersons with dementia and their spouses receive adequateinformation and be given the opportunity to discuss differ-ent types of ICT with healthcare personnel. Such discus-sions with the couple, relatively early in the disease process,could facilitate joint decision-making regarding bothcurrent and future use of ICT in daily life (cf. [22]). In add-itional it is important that the technology being developedbased on the needs and experiences of the person withdementia and their relatives and that such need-baseddevelopment should go hand in hand with collaborationbetween the research community and private enterprise.The present study showed that the couples´ perceptions

of the PPAP increasing their safety overshadowed any riskof violating personal integrity. None of the couples in thepresent study spontaneously raised the ethical issue ofwhether use of the PPAP was intrusive, and the implemen-tation of a hidden zone was not a desired feature. On thecontrary, not being seen was considered a source of inse-curity. These findings are in contrast to the ethical debateconcerning tracking technology, which has focused on therisk of offending and violating the integrity of persons withdementia [24,30-32]. One explanation for this discrepancymay be that the PPAP used in the present study allowedonly the spouses to monitor the persons with dementia ontheir outdoor walks. Several studies have reported thatimplementation of ICT in the care of persons with demen-tia needs to be preceded by extensive ethical discussions[11,32,42]. Welsh and colleagues [30] reported that someICT (e.g., tracking technology) devices used in dementiacare were perceived by healthcare staff as violating human


STUDY III

dignity and freedom, given the use of similar technology incriminal surveillance. While this stance is understandableconsidering that all such devices are based on GPS, it couldalso be argued that it is unethical to deny persons with de-mentia and their relatives the opportunity to use a service,such as the PPAP, that could give them independence andsecurity in daily life. It is also important that the trackingtechnology be adapted to the individual and used as an aidto living a daily life that is as fulfilling and active as possibledespite the presence of a dementia disease. Finally, genderdifferences in testing and checking one’s own abilities aswell as the PPAP were described and revealed in thepresent study. Further studies are needed to investigatethese differences.

Methodological considerationsThe main strength of the present study was the use ofrepeated participant observations and informal conversa-tions, an approach that allowed us to follow the couplesand the development of their use of the PPAP over time[34] and can thereby be seen as appropriate. A furtherstrength was that the observations and conversations wereperformed in the couples´ own homes and that thepersons with dementia participated actively as informants.Despite the emotional upheaval of describing and reflectingon their situation, all of the participants (both persons withdementia and their spouses) appreciated being given anopportunity to speak with someone who showed an interestin hearing their stories. The observers´ knowledge andexperience of caring for persons with dementia and theirrelatives were considered a prerequisite for admission tothe home, for creating a trusting environment in which tocarry out the observations and conversations, and for beinggiven the opportunity and permission to return (on thenext occasion) (cf. [35]).Credibility [37,43] was achieved by the first and last

authors discussing the steps used in the process ofanalyzing the observation and conversation occasions. Allauthors were engaged in a critical discussion of the analysisat all levels, from code to category. To further strengthenthe credibility, excerpts from the interviews were includedin the results. To increase the dependability of the study,the data collection and analysis process were continuallydiscussed in the research team. The findings may be trans-ferable to groups of people with other cognitive disabilities,although decisions about transferability must be made bythe readers [34,37,43]. A limitation that should be takeninto account is that data collection was carried out during atime of year when outdoor activity is limited, due to snowand low temperatures. This might have influenced thefrequency of the couples´ use of the PPAP. Moreover,future research is needed to explore the experiences of per-sons with dementia in later stages of the disease. Persons

with severe dementia may experience deterioration of theirverbal communication skills, which is why a longitudinalobservation study should be considered.

ConclusionsThe passive positioning alarm was perceived as providingvaluable support for both persons with dementia and theirspouses. Achieving successful implementation of the PPAPin the daily life of persons with dementia and their spousesrequires a service package that provides an overall solutionpromoting the usability and value of the PPAP. The presentstudy contributes to our understanding of what prerequi-sites need to be in place and what barriers need to be dealtwith before successful implementation can occur. Due tothe physical and functional design of the device, personswith dementia and their relatives must receive individualsupport that is based on their individual abilities, know-ledge and skills. Such support and feedback at “the rightlevel” should enable them to feel trust in themselves and intheir use of the PPAP.

AbbreviationsGPS: Global Positioning System; ICD: International Classification of Diseases;ICT: Information and Communication Technology; PPAP: Passive PositioningAlarm Package; SMS: Short Message Service.

Competing interestsThe authors declare that they have no competing interests.

Authors’ contributionsAll authors participated in the design and analysis of the study and themanuscript preparation. Data collection was performed by AO. All authorsread and approved the final manuscript.

AcknowledgementsThis study was supported by the University of Gävle, Örebro University, TheKnowledge Foundation and by grants from The Dementia Association - TheNational Association for the Rights of the Demented.

Author details1Faculty of Health and Occupational Studies, University of Gävle, Gävle80176, Sweden. 2School of Health and Medical Sciences, Örebro University,Örebro 701 82, Sweden. 3Department of Neurobiology, Care Sciences andSociety, Karolinska Institutet, Stockholm 171 77, Sweden. 4Department ofPublic Health and Caring Sciences, Uppsala University, Uppsala, Sweden.5Faculty of Health Sciences, Buskerud University College, Drammen, Norway.

Received: 7 June 2012 Accepted: 31 January 2013Published: 5 February 2013

References1. Papastavrou E, Kalokerinou A, Papacostas SS, Tsangari H, Sourtzi P: Caring

for a relative with dementia: family caregiver burden. J Adv Nurs 2007, 58(5):446–457.

2. Lauriks S, Reinersmann A, Van der Roest HG, Meiland FJ, Davies RJ, MoelaertF, Mulvenna MD, Nugent CD, Droes RM: Review of ICT-based services foridentified unmet needs in people with dementia. Ageing Res Rev 2007, 6(3):223–246.

3. Steeman E, de Casterle BD, Godderis J, Grypdonck M: Living with early-stagedementia: a review of qualitative studies. J Adv Nurs 2006, 54(6):722–738.

4. Aggarwal N, Vass AA, Minardi HA, Ward R, Garfield C, Cybyk B: People withdementia and their relatives: personal experiences of Alzheimer's and ofthe provision of care. J Psychiatr Ment Health Nurs 2003, 10(2):187–197.


5. Shim B, Barroso J, Davis LL: A comparative qualitative analysis of stories ofspousal caregivers of people with dementia: negative, ambivalent, andpositive experiences. Int J Nurs Stud 2012, 49(2):220–229.

6. Nordberg G, von Strauss E, Kareholt I, Johansson L, Wimo A: The amount ofinformal and formal care among non-demented and demented elderlypersons-results from a Swedish population-based study. Int J GeriatrPsychiatry 2005, 20(9):862–871.

7. Etters L, Goodall D, Harrison BE: Caregiver burden among dementiapatient caregivers: a review of the literature. J Am Acad Nurse Pract 2008,20(8):423–428.

8. Holst G, Edberg AK: Wellbeing among people with dementia and theirnext of kin over a period of 3 years. Scand J Caring Sci 2011, 25(3):549–557.

9. van Vliet D, de Vugt ME, Bakker C, Koopmans RT, Verhey FR: Impact of earlyonset dementia on caregivers: a review. Int J Geriatr Psychiatry 2010, 25(11):1091–1100.

10. McShane R, Gedling K, Keene J, Fairburn C, Jacoby R, Hope T: Getting lostin dementia: a longitudinal study of a behavioral symptom. IntPsychogeriatr 1998, 10(3):253–260.

11. Robinson L, Hutchings D, Corner L, Beyer F, Dickinson H, Vanoli A, Finch T,Hughes J, Ballard C, May C, Bond J: A systematic literature review of theeffectiveness of non-pharmacological interventions to preventwandering in dementia and evaluation of the ethical implications andacceptability of their use. Health Technol Assess 2006, 10(26):iii–ix. 108.

12. Robinson L, Brittain K, Lindsay S, Jackson D, Olivier P: Keeping In TouchEveryday (KITE) project: developing assistive technologies with peoplewith dementia and their carers to promote independence. IntPsychogeriatr 2009, 21(3):494–502.

13. Duggan S, Blackman T, Martyr A, Van Schaik P: The impact of earlydementia on outdoor life. Dementia 2008, 7(2):191–204.

14. Bossen A: The importance of getting back to nature for people withdementia. J Gerontol Nurs 2010, 36(2):17–22.

15. Bowler DE, Buyung-Ali LM, Knight TM, Pullin AS: A systematic review ofevidence for the added benefits to health of exposure to naturalenvironments. BMC Public Health 2010, 10:456.

16. Pilotto A, D'Onofrio G, Benelli E, Zanesco A, Cabello A, Margeli MC, Wanche-Politis S, Seferis K, Sancarlo D, Kilias D: Information and communicationtechnology systems to improve quality of life and safety of Alzheimer'sdisease patients: a multicenter international survey. J Alzheimers Dis 2011,23(1):131–141.

17. Powell J, Chiu T, Eysenbach G: A systematic review of networkedtechnologies supporting carers of people with dementia. J TelemedTelecare 2008, 14(3):154–156.

18. Faucounau V, Riguet M, Orvoen G, Lacombe A, Rialle V, Extra J, Rigaud AS:Electronic tracking system and wandering in Alzheimer's disease: a casestudy. Ann Phys Rehabil Med 2009, 52(7–8):579–587.

19. Pot AM, Willemse BM, Horjus S: A pilot study on the use of trackingtechnology: Feasibility, acceptability, and benefits for people in earlystages of dementia and their informal caregivers. Aging Ment Health 2011,16(1):127–134.

20. Bantry White E, Montgomery P, McShane R: Electronic tracking for peoplewith dementia who get lost outside the home: a study of theexperience of familial carers. Br J Occup Ther 2010, 73(4):152–159.

21. Kearns WD, Fozard JL: High-speed networking and embeddedgerontechnologies. Gerontechnology 2007, 6:135–146.

22. Olsson A, Engstrom M, Skovdahl K, Lampic C: My, your and our needs forsafety and security: relatives' reflections on using information andcommunication technology in dementia care. Scand J Caring Sci 2012, 26(1):104–112.

23. Landau R, Werner S, Auslander GK, Shoval N, Heinik J: Attitudes of familyand professional care-givers towards the use of GPS for trackingpatients with dementia: an exploratory study. Br J Soc Work 2009, 39(4):670–692.

24. Robinson L, Hutchings D, Corner L, Finch T, Hughes J, Brittain K, Bond J:Balancing rights and risks: conflicting perspectives in the managementof wandering in dementia. Health Risk Soc 2007, 9(4):389–406. 389.

25. Zwijsen SA, Depla MF, Niemeijer AR, Francke AL, Hertogh CM: Surveillancetechnology: an alternative to physical restraints? a qualitative studyamong professionals working in nursing homes for people withdementia. Int J Nurs Stud 2012, 49:212–219.

26. Orpwood R, Sixsmith A, Torrington J, Chadd J, Gibson G, Chalfont G:Designing technology to support quality of life of people with dementia.Technol Disabil 2007, 19:103–112.

27. Cahill S, Begley E, Topo P, Saarikalle K, Macijauskiene J, Budraitiene A, HagenI, Holte T, Jones K: Ì know where this is going and I know it won´ t goback´ . Dementia 2004, 3(3):313–330.

28. Karlsson E, Axelsson K, Zingmark K, Savenstedt S: The challenge of comingto terms with the use of a new digital assistive device: a case study oftwo persons with mild dementia. Open Nurs J 2011, 5:102–110.

29. Meiland FJ, Bouman AI, Savenstedt S, Bentvelzen S, Davies RJ, MulvennaMD, Nugent CD, Moelaert F, Hettinga ME, Bengtsson JE, Droes RM: Usabilityof a new electronic assistive device for community-dwelling personswith mild dementia. Aging Ment Health 2012, 16(5):584–591.

30. Welsh S, Hassiotis A, O'Mahoney G, Deahl M: Big brother is watching you–the ethical implications of electronic surveillance measures in the elderlywith dementia and in adults with learning difficulties. Aging Ment Health2003, 7(5):372–375.

31. Hofmann B: Ethical challenges with welfare technology: a review of theliterature. Sci Eng Ethics 2012, [Epub ahead of print].

32. Landau R, Werner S: Ethical aspects of using GPS for tracking people withdementia: recommendations for practice. Int Psychogeriatr 2012, 24(3):358–366.

33. Sandelowski M: Focus on qualitative methods: using qualitative methodsin intervention studies. Res Nurs Health 1996, 19(4):359–364.

34. Patton MQ: Qualitative Research & Evaluation Methods: 3. 3rd edition.London: SAGE; 2002.

35. Nygard L: How can we get access to the experiences of people withdementia? Suggestions and reflections. Scand J Occup Ther 2006, 13(2):101–112.

36. Skovdahl K, Kihlgren AL, Kihlgren M: Dementia and aggressiveness:stimulated recall interviews with caregivers after video-recordedinteractions. J Clin Nurs 2004, 13(4):515–525.

37. Graneheim UH, Lundman B: Qualitative content analysis in nursingresearch: concepts, procedures and measures to achievetrustworthiness. Nurse Educ Today 2004, 24(2):105–112.

38. Krippendorff K: Content Analysis - An Introduction to Its Methodology. 2ndedition. Thousands Oaks, California: Sage Publications Inc.; 2004.

39. Hellstrom I, Nolan M, Nordenfelt L, Lundh U: Ethical and methodologicalissues in interviewing persons with dementia. Nurs Ethics 2007, 14(5):608–619.

40. Rialle V, Ollivet C, Guigui C, Herve C: What do family caregivers ofAlzheimer's disease patients desire in smart home technologies?Contrasted results of a wide survey. Methods Inf Med 2008, 47(1):63–69.

41. Chiu TM, Eysenbach G: Stages of use: consideration, initiation, utilization,and outcomes of an internet-mediated intervention. BMC Med InformDecis Mak 2010, 10:73.

42. Niemeijer AR, Frederiks BJ, Depla MF, Legemaate J, Eefsting JA, Hertogh CM:The ideal application of surveillance technology in residential care forpeople with dementia. J Med Ethics 2011, 37(5):303–310.

43. Lincoln YS, Guba EG: Naturalistic Inquiry. Newbury Park, California: SAGEPublications Inc.; 1985.

doi:10.1186/1471-2318-13-11Cite this article as: Olsson et al.: A passive positioning alarm used bypersons with dementia and their spouses – a qualitative interventionstudy. BMC Geriatrics 2013 13:11.


STUDY III

STUDY IV

Effects of tracking technology on daily life with dementia – three

experimental single-case studies

Annakarin Olsson, RN, PhD student 1, 2), Maria Engström, RN, PhD, Associate Professor 1,3),

Pernilla Åsenlöf, PT, PhD, Associate Professor 4), Kirsti Skovdahl, RN, Professor 2,5), Claudia

Lampic, PhD, Associate Professor 6)

1) Faculty of Health and Occupational Studies, University of Gävle, Sweden.

2) School of Health and Medical Sciences, Örebro University, Sweden.

3) Department of Public Health and Caring Sciences, Uppsala University, Sweden

4) Department of Neuroscience, Physiotherapy, Uppsala University, Sweden

5) Faculty of Health Sciences, Buskerud University College, Drammen, Norway

6) Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Sweden

Correspondence to: Annakarin Olsson Faculty of Health and Occupational Studies, University of Gävle 80176 Gävle Sweden Tel: +46 26 64 88 12 Fax: +46 26 64 82 35 E-mail: [email protected]

1

STUDY IV

Abstract

Objectives: To investigate the effects of using tracking technology on independent outdoor

activities and psychological well-being in three persons with dementia and their spouses.

Methods: Three experimental single-case studies with an A1B1A2B2 design, A representing

baseline phases and B intervention phases. Continual daily measures of independent outdoor

activities among persons with dementia and spouses’ worries about these activities were made

during all phases.

Results: Access to a tracking technology consistently increased the independent outdoor

activities of two persons with dementia; for one person with dementia these activities

increased only during B2. One spouse consistently reported decreased worry during B phases,

another’s worry decreased only in B2 and the third showed little variability in worrying across

all phases.

Conclusion: Using tracking technology may serve as an aid in the daily life of persons with

dementia by allowing them to be independent outdoors and may decrease spouses’ worries.

Keywords: Alzheimer’s, dementia, experimental single case study, information and

communication technology (ICT), outdoors, tracking technology

2

1. Introduction

The value of being outdoors for persons with dementia (PwDs) has been described [1-3],

including how it strengthens their sense of identity, the `Self´ [4, 5]. Some PwDs continue to

spend time outdoors on their own despite relatives’ worries that they might get lost or hurt [6-

8], while other PwDs are restricted from going outdoors by their relatives due to such worries

[9]. Locked doors are commonly used in residential homes for PwDs [10, 11] and also in their

own homes, although being restricted from going out has been shown to lead to decreased

independence and feelings of being trapped [12]. Living with and caring for a PwD puts

relatives in situations where they tend to subordinate their own activities to seeing to the

PwD’s needs [13, 14]. In a recent study [15], the strongest predictors of caregiver burden

were PwDs’ lower cognitive status and more time spent walking independently outdoors. In

order to support PwDs and relatives in daily life, tracking technologies based on GPS

technique (global position system) have been developed [11, 16-18] that have the potential to

increase feelings of safety and security among both PwDs and their relatives [10, 19]. There

are few experimental studies evaluating the effect of using tracking technique on independent

outdoor activities among PwDs and well-being among PwDs and their relatives [20]. Results

from Pot et al. [20] showed that, while using tracking technology, PwDs experienced more

freedom and were less worried while outdoors on their own and that caregivers showed a

trend toward being less worried.

Experimental single-case designs are suitable for evaluating the effect of an intervention on

behaviors and reactions in daily life. This design allows participants to be their own controls

and to be studied in their natural settings, e.g., their homes. The design has methodologically

strong tools for showing effects of an intervention, due to the possibility to carry out daily

measures of individual-specific outcomes during the different phases of the study. Daily

3

STUDY IV

measures assessed in structured diaries have several advantages in that they, e.g., eliminate

recall errors and produce consistent reporting [21]. Selected outcomes are measured daily

both during a baseline period (Phase A) and a period of intervention (Phase B) [22]. Using an

A1B1A2B2 design strengthens the experiment, in that the intervention is withdrawn in A2

(return to baseline condition) and reintroduced in B2. In contrast to randomized control trial

studies, where the same outcomes are measured for all participants, experimental single-case

designs allow for assessment of individual-specific outcomes, taking into account that the

intervention may have an impact on different aspects in different individuals. Intervention

effects are demonstrated as differences in scores between phases A and B [22]. The aim of the

present study was to investigate the effects of using tracking technology on independent

outdoor activities and psychological well-being in three individual cases, i.e., three persons

with dementia and their spouses.

2. Methods

2.1 Design

Three experimental single-case studies using an A1B1A2B2 design were used, alternating non-

intervention phases (A1A2) and intervention phases (B1B2).

2.2 Setting and participants

The study was conducted in the participants’ own homes and surroundings. Inclusion criteria

were couples consisting of a person diagnosed with a dementia disease and his/her relative,

living together in their own homes; the PwDs should have a desire and be physically able to

be outdoors. Recruitment of participants was performed with the help of healthcare staff at the

memory unit within the county council (4 couples) and the Relative Caregivers Support

Centre (1 couple) in a city in central Sweden. One couple was excluded due to the relative’s

4

difficulties in carrying out the daily measures, and another couple declined participation after

receiving detailed study information. Participating PwDs were all men with an Alzheimer’s

disease, were retired and took medications intended to delay the progression of dementia.

Participating spouses were all women and retired. Data collection was performed from May to

October 2011. Characteristics of the participating couples were collected at study inclusion

using individual interviews and self-administered instruments (cf. Procedure and Measures);

participant characteristics are presented in Table 1.

Insert Table 1 about here

Couple 1. The couple lived in an urban area with green areas/parks and several walking and

bicycling paths in their neighborhood. The PwD usually took daily outdoor activities,

predominantly alone. He had no mobility problems, was physically strong and able to take

long walks. On several occasions during the month preceding study inclusion, the PwD had

gotten lost while outdoors alone, causing his spouse great worry. The spouse had tried to

restrict the PwD from going outdoors unaccompanied by locking the exterior door, but the

PwD did not accept this and responded with irritability. According to the spouse, the PwD

needed to be outdoors to avoid being irritable. The spouse also perceived the PwD to show

signs of apathy, irritability, and disinhibitation (Table 1). The spouse reported that she was

not engaged in her own regularly occurring activities. She had primary responsibility for the

household and reported that the PwD needed some help with instrumental activities of daily

living (IADL) (Table 1). The spouse perceived her level of burden due to her husband’s

disease to be medium (Table 1).

5

STUDY IV

Couple 2. The couple’s neighborhood contained green areas/parks along with several

walking and bicycling paths; they lived in an urban area. The couple usually took daily

outdoor walks together. The PwD had no history of getting lost, but due to the spouse’s fear

he would get lost, he was not allowed to take independent outdoor activities. According to the

spouse, the PwD needed to be outdoors to have a feeling of well-being, and she was sad she

had to restrict him from going out. The PwD participated in daytime care organized by the

county council. The PwD was alone at home several hours a day when the spouse was

engaged in her own activities. Because the spouse was worried that the PwD might leave the

home while she was away, she locked the exterior door with an extra lock when he was at

home alone. The spouse regarded this action as insulting but necessary, and felt her husband

accepted being locked in. The PwD had some mobility problems (not quite steady on his

feet), but did not want to use any kind of aid. According to the spouse reported that the PwD

showed signs of depression, anxiety, apathy, aberrant motor behavior changes and severe

sleep and eating disorders (Table 1). The spouse had primary responsibility for household and

the PwD needed a great deal of help with IADL and some help with activities of daily living

(ADL). The spouse perceived her level of burden due to her husband’s disease to be low

(Table 1).

Couple 3. The couple lived in a rural area, near wooded areas of various sizes where one

could walk. In the neighborhood there were also several walking and bicycling paths. The

PwD usually took daily independent outdoor walks and bicycle rides. He had on one occasion

been lost while outdoors alone, but this did not lead to the spouse restricting him from being

outdoors. He did not have any mobility problems. The spouse was engaged in several of her

own activities; she was sometimes away for the night, leaving the PwD home alone. The

spouse expressed a worry that the PwD might get lost while alone outdoors. The couple did

6

very few outdoor activities together, but during Phase B1, they were on a weeklong trip to the

mountains. The spouse was primarily responsible for the household, although the PwD

participated. The PwD needed some help with ADL, and the spouse perceived her level of

burden due to her husband’s disease to be medium (Table 1).

2.3 Intervention

The intervention (passive positioning alarm [PPA]) comprised a “service package” containing

a transmitter (based on global positioning [GPS] technique), a cell phone, manuals for the

transmitter and the cell phone and access to a support person. When the PwDs took

independent outdoor walks during phases B1 and B2, they carried the transmitter on them.

When the PwD left a predefined area with a radius of 500 meters a message (Short Message

Service, SMS) with a map was sent to the spouse’s cell phone, enabling the spouse to see the

location of the PwD. Further information about the PPA is reported in Olsson et al. [23].

2.4 Procedures

The staff at the memory unit described the study to the couples, obtained their verbal consent,

and forwarded contact information to the first author (AO), who then contacted each couple

and screened them for eligibility for the study. The first author (AO) conducted an in-home

interview separately with the PwDs and their spouses. This interview was done to identify

individual-specific outcome variables for both the PwDs and the spouses based on perceived

problems related to the PwDs’ independent outdoor activities. Detailed information was given

describing the study procedure, the spouse was asked to complete self-report measures, and

verbal and written informed consent were obtained from both the PwD and the spouse. In the

week prior to the first baseline period (A1), the first author made a second in-home visit,

during which she provided repeated information regarding study procedure, diaries covering

7

STUDY IV

the first 2 weeks of the study period and stamped reply envelopes. During Phase A1, the

couples were instructed to make daily ratings in the diaries. On Friday at the end of Phase A1,

the couples participated in an instruction session regarding the PPA, provided by the support

person. During the session, the couples were able to test the PPA, ask questions and read the

manuals together with the support person. The predicted time it would take for the spouses to

learn to use and handle the alarm was 2 weeks. The couples received the PPA and were

instructed to use the device as frequently as possible during Phase B1. At the end of Phase B1,

the support person removed the PPA from the homes. During Phase A2, the couples received

no intervention. At the end of Phase A2, the PPA was returned to the couples for use during

Phase B2.

The researcher (AO) had weekly telephone contact with the spouses during all phases. These

occasions were used to remind them to complete the dairies daily and for the researcher to

answer any questions the participants might have. The participants returned their diaries by

mail every week. New diaries and stamped reply envelopes were sent by mail every second

week to the couples. Decisions regarding the length of each phase, for each couple, were

made by three authors (AO, CL, PÅ) following visual inspection of the graphs depicting the

collected data; the criterion for entering the next phase was stability in the data.

8

2.5 Measures

Primary and secondary outcomes were assessed using daily structured ratings.

Primary outcomes

PwD independent outdoor activities (spouse rating). The number of independent outdoor

activities each day was reported by the spouses. Data are reported as the percentage of days

with independent outdoor activities during each period.

Spouse worry concerning PwD independent outdoor activities (spouse rating). The specific

items concerned “worry when the husband was outdoors alone” (Spouse 1 and 3) and “worry

that the husband would get lost while outdoors alone” (Spouse 2). Ratings were scored on

numerical rating scales (0-10) with end-points ‘not worried at all’ to ‘extremely worried’.

PwD irritability and depressive mood (proxy rating by spouse). The specific items concerned

PwD irritability (proxy PwD 1) and depressive mood (proxy PwD 2 and 3). Spouses’ proxy

ratings were scored on numerical rating scales (0-10) with end-points ‘no irritability at all’ to

‘extremely irritable’, and ‘no depressive mood at all’ to ‘extremely depressed mood,’

respectively.

Secondary outcomes

General well-being for spouses (spouse rating) and PwDs (proxy rating by spouse; PwD

rating). Ratings were scored on numerical rating scales (0-10) with end-point alternatives ‘no

well-being at all’ to ‘extremely good’.

Worry about getting lost during independent outdoor activities (PwD 3) (PwD rating). Ratings

were scored on a numerical rating scale (0-10) with end-point alternatives ‘not worried at all’

to ‘extremely worried’.

9

STUDY IV

The diaries also contained a part in which the spouses could write whatever subjective

comments they wished, e.g., daily events that might have influenced use of the PPA. In

addition, accompanied outdoor activities (number each day), length of independent and

accompanied outdoor activities (minutes) and the number of generated alarms when the PwD

was alone outdoors were assessed.

Descriptive measures

Participant characteristics were collected at the start of Phase A1 using three instruments

completed by the spouse. The Caregiver Burden Scale (CB Scale) [24] includes 22 statements

rated in terms of frequency (1= not at all, 2= seldom, 3=sometimes and 4=often). A total

burden index based on each individual’s mean scores is formed with mean scores interpreted

as low burden (1.00–1.99), medium burden (2.00–2.99) and high burden (3.00–4.00). The

Resource of Utilization in Dementia (RUD) [25] consists of three different categories,

assessing how many hours are spent a day assisting the PwD with Activities of Daily Life

(ADL), Instrumental Activities of Daily Life (IADL) and supervision. The Neuropsychiatric

Inventory (NPI) [26, 27] includes 12 items describing symptoms that are scored regarding

frequency (1= Sometimes, 2= Often, 3=Frequently, 4=Very frequently) and severity (1=

Mild, 2= Moderate, 3=Severe); the absence of individual symptoms is assessed with a 0.

Frequency scores are multiplied by severity scores, thus forming a total score that varies

between 0 and 144.

2.6 Manipulation check

The intervention was checked by documenting any events or circumstances that may have

influenced the possibility for the PwDs to perform independent outdoor activities using the

10

PPA; this was achieved by inviting participants to document this in the diaries and through

weekly telephone contact between the researcher (AO) and the spouses.

2.7 Data analyses

Graphs for each outcome were displayed and medians for each outcome and phase were

calculated. Visual inspections of the graphs were made so as to identify changes in level,

trend and latency [22]. Furthermore, visual inspection and calculations (percentages) were

made of the non-overlapping [22, 28] scores between phases B1 and A1 and between B2 and

A2, and celeration lines [29] were drawn to “predict” the couples’ performance in later

phases.

2.8 Ethical consideration

The Regional Ethical Review Board granted permission for the study (2009/078).

Participation in the study was strictly voluntary, all participants were assured of

confidentiality and that they could withdraw from the study at any time without giving any

explanation.

3. Results

Primary outcomes: Independent outdoor activities, spouse worry and PwD irritability and

depressed mood

Couple 1

The percentage of days with independent outdoor activities for PwD 1 decreased from 52% in

Phase A1 to 24 % in Phase B1, remained stable during Phase A2 (25 %) and increased during

Phase B2 (49 %) (Table 2). Figure 1 shows Spouse 1 worry concerning PwD 1 independent

outdoor activities together with the percentage of days with PwD 1 independent outdoor

11

STUDY IV

activities during each phase. For Spouse 1, the celeration line (red line in Figure 1) indicates a

decrease in worry from A1 to B1. All except one point data point in Phase B1 fell below the

celeration line, indicating either an effect of the intervention or that the PwD 1 had fewer

independent outdoor activities. The median for worry for Spouse 1 increased from the first

intervention phase (B1) to the second baseline phase (A2), and then decreased during the last

intervention phase (B2). PwD 1 irritability (proxy rating) showed little variability during all

phases, but increased during Phase B1 (Figure 2); change in level and latency from A1 to B1

were observed, but no trend.

Insert Figure 1 and 2 about here

Couple 2

For PwD 2, the percentage of days with independent outdoor activities increased from 0% in

Phase A1 to 55% in Phase B1. This frequency remained stable (54%) during Phase A2, and

further increased to 70 % in Phase B2 (Table 2). During Phase A2, PwD 2 carried a cellphone

when alone outdoors, and his walks between the home and the daycare center were monitored

by telephone calls between Spouse 2 and center staff to communicate PwD’s departures and

arrivals. Figure 3 shows data on Spouse 2’s worries that her husband would get lost while

alone outdoors, together with the percentage of days with PwD independent outdoor activities

during each phase. In Phase A1, during which PwD 2 performed no independent outdoor

activities, Spouse 2 reported no worry. When the intervention was introduced in Phase B1,

PwD 2 started performing independent outdoor activities with the support of the PPA in the

third week, and Spouse 2’s worries increased. In Phase A2, when PwD 2’s independent

outdoor activities were supported solely by the cell phone and telephone monitoring (see

above), this was accompanied by increased spouse worry. Finally, a decrease in spouse worry

12

was shown in Phase B2, when 70% of days contained PwD independent outdoor activities.

PwD 2’s depressive mood (proxy) decreased over the whole study period. The celeration line

(red line in Figure 4) indicates a decreasing trend of depressive mood for the PwD (proxy)

from Phase A1 to Phase B1. PwD 2 showed variability in depressive mood during Phase A1;

no changes in median, level, trend or latency were observed.


Couple 3

For PwD 3, an increased frequency of independent outdoor activities, from 43% to 88%, was

shown during Phase B1 (Table 2). An intervention effect was also demonstrated by a

decreased percentage of days with independent outdoor activities when the intervention was

withdrawn in Phase A2 (54%). During Phase B2, frequency of independent outdoor activities

again increased to 77%. Figure 5 shows the data for Spouse 3’s worries concerning PwD

independent outdoor activities together with the percentage of days with independent outdoor

activities for each phase. Spouse 3’s worries showed little variability during the study period

(Figure 5). Depressive mood for PwD 3 (proxy) showed variability during the whole study

period (Figure 6), but no changes in median, level, trend or latency were observed.


Secondary outcomes: Spouse and PwD well-being, PwD self-reported outcomes and

additional outdoor activity variables

None of the PwDs performed independent outdoor activities more than once a day during the

first baseline phase (A1). During the first intervention phase (B1), both PwD 2 and PwD 3

13

STUDY IV

were independently outdoors two, even three times a day (Table 2). The PwDs’ own ratings

of well-being, depressed mood, irritability and worry showed very little variability. The

results for the primary and secondary outcomes are summarized and presented in Table 2.

Insert Table 2 about here

4. Discussion

The present results show that access to a PPA consistently increased the independent outdoor

activities of two persons with dementia. For two spouses’ access to a PPA decreased levels of

worry about the PwDs’ independent outdoor activities despite increased frequency of such

activities. All couples in the present study had, in one way or another, come to a situation in

which PwDs being alone outdoors was experienced by the PwDs and spouses as entailing a

risk [cf. 30]. The three couples differed in their attitudes toward the PwDs’ possibility to

continue independent outdoor activities and the couples could be seen as illustrating how

these difficulties can be approached. In Couple 1, the PwD was more active outdoors than the

spouse was and refused to be restricted by his wife’s attempts to lock him indoors. Both

spouses 2 and 3 had their own activities outside the home to a greater degree than did Spouse

1 and worried that the PwD would get lost while being outdoors alone. Spouse 2 therefore

locked the PwD in, which he accepted, while spouse 3 refrained from restricting her husband.

In Couple 1, the interviews with the couple revealed PwD 1’s great need to be outdoors, and

according to the spouse, not being allowed to go outdoors was causing him to become

irritable and her to worry when the PwD was outdoors on his own. Scores on the NPI

supported the Spouse 1’s perception of irritability in the PwD 1. Quinn et al. [31] revealed

that caregivers’ perception of relationship quality was influenced negatively by the PwDs’

14

needs for help with ADL and by the severity of behavioral problems. Spouse 1’s worries

decreased during the second intervention phase, and this might be related to the fact that the

spouse had developed trust in the PPA as well as the knowledge, skills and ability needed to

use the device [cf. 23]. Previous research has shown that the intention to use and later actual

use of new technology might be preceded by a stage of perceived usability [32]. Olsson et al.

[23] revealed that the value of a tracking technology, in terms of safety and security, was

related to users’ possibility to test and evaluate the technology as well as to their own

abilities, knowledge and skills. Increased trust in the PPA during the second intervention

period may also have contributed to the finding that PwDs’ independent outdoor activities

increased during B2 for all three couples [cf. 23].

Couple 2 took regular outdoor walks together, but Spouse 2 did not want him to be alone

outdoors. When Spouse 2 had her own activities away from home, she felt compelled to lock

PwD 2 indoors, which felt wrong but still necessary. However, PwD 2 accepted being locked

in. In the present study, Spouse 1 and 2 had tried to prevent the PwD from going outdoors

alone in different ways, e.g., by physically preventing him (standing in the way) and/or by

locking the exterior door. Locked doors are commonly used in residential homes for PwDs to

prevent them from leaving their homes [33, 34], and studies have also shown that relatives

use this strategy in their own homes as a safety precaution for their own as well as for the

PwD’s sake [10, 35]. Following no independent outdoor activities for PwD 2 during the first

baseline period, the couple carried the PPA with them on joint outdoor activities during the

first weeks of the intervention period B1, which has been described as a way to achieve trust

in the PPA [23]. During the third week of Phase B1, PwD 2 engaged in his first independent

outdoor activities, resulting in his wife scoring higher on worry that her husband would get

lost while alone outdoors despite the PPA. During the second baseline period (A2) PwD 2

15

STUDY IV

maintained the same frequency of independent outdoor activities with the support of him

carrying a cell phone and telephone monitoring of his walks between the home and the

daycare center. Spouse 2 reported that this gave them both a feeling of safety and security [cf.

23, 36] and made it possible for her to engage in several daily independent activities outside

the home, thus maintaining her freedom. Spouse 2 also reported somewhat increased worries

during Phase A2, which could be explained by the absence of the PPA. With use of the PPA,

the door could be unlocked, improving the PwD’s depressed mood, and the spouse could be

less worried and able to continue her own activities.

In Couple 3, the spouse engaged in several of her own activities outside the home and on

these occasions, PwD 3 was left alone at home. Spouse3 did express worry about his safety

but she did not lock him in as she felt that would be wrong. While PwD 3’s independent

outdoor activities increased during both intervention periods, no effect was found for spouse

worry, PwD depressive mood and PwD worry about getting lost. This was a surprising

finding because both PwD 3 and Spouse 3 had expressed being worried when the PwD was

alone outdoors. While Spouse 3 reported very few neuropsychiatric symptoms for her

husband and spent few hours a day supervising and supporting him in activities of daily

living, she nevertheless reported being moderately burdened by caring for her husband. She

described that she had already given up some desired activities and that her feeling of

independence was limited, suggesting that her experience of care burden was related to

perceived limitations in own activities. Earlier studies [13, 14, 37] have shown that taking

care of a PwD tends to take precedence over the care-giving spouse’s own activities and

hobbies, which are sacrificed.

16

4.1 Methodological considerations

The main strengths of the present study are its structured daily measures and the A1B1A2B2

design with two baseline and two intervention phases [22], which are believed to minimize or

rule out potential threats to internal validity. The strength of the design was most obvious in

Couple 3, where a decrease of PwD’s independent outdoor activities was shown in phase A2

when the intervention was withdrawn. However, some limitations have been found. During

some parts of the phases, the PwDs had few independent outdoor activities, thus resulting in

few scores, which might have affected the results. Measures related to the spouses’ worries

when the PwDs were alone outdoors are missing for the days when the PwDs were not

outdoors (Couple 1 and 3). For Couple 2, the question regarding the spouse’s worries was

formulated differently. The experimental single-case design is not intended to generate

generalizable findings, instead this is an expressed limitation of the design. Inter-rater

reliability was assessed by two of the authors (not the one who primary made the visual

inspections) examining the graphs, followed by a discussion in the research group.

Assessment of the PwDs’ cognitive competence using the Mini Mental Score Examination

(MMSE) was considered but rejected due to the researchers’ experienced difficulties with

establishing a trustful relationship with PwDs after having examined them with MMSE [cf.

38].

5. Conclusion

The present study demonstrated that the use of a passive positioning alarm could provide

support in daily life by allowing PwDs to engage in independent outdoor activities and

decreasing their spouse’s worries about these activities. The present findings could serve as

the scientific basis for designing a larger-scale clinical randomized controlled trial to examine

the effectiveness of a passive positioning alarm for PwDs and their relatives.

17

STUDY IV

Acknowledgments

This study was supported by the University of Gävle, Örebro University and by grants from

The Dementia Association - The National Association for the Rights of the Demented as well

as The Knowledge Foundation.

18

References

[1] M.B. Detweiler, P.F. Murphy, L.C. Myers, and K.Y. Kim, “Does a wander garden influence inappropriate behaviors in dementia residents?”, American Journal of Alzheimer’s Disease and other Dementias, vol. 23, no. 1, pp. 31-45, 2008.

[2] S. Duggan, T. Blackman, A. Martyr, and P. Van Schaik, “The impact of early dementia on outdoor life”, Dementia, vol. 7, no. 2, pp. 191-204, 2008.

[3] G. Gibson, G.E. Chalfont, P.D. Clarke, J.M. Torrington, and A.J. Sixsmith, “Housing and connection to nature for people with dementia”, Journal of Housing for the Elderly, vol. 21, no. 3 , pp. 55-72, 2007.

[4] J. Cohen-Mansfield, H. Golander, and G. Arnheim, “Self-identity in older persons suffering from dementia: Preliminary results”, Social Science and Medicine, vol. 51, no. 3, pp.381-394, 2000.

[5] D. Edvardsson, D. Fetherstonhaugh, and R. Nay, “Promoting a continuation of self and normality: Person-centred care as described by people with dementia, their family members and aged care staff”, Journal of Clinical Nursing, vol. 19, no. 17-18, pp. 2611-2618, 2010.

[6] M.A. Rowe, S.S. Vandeveer, C.A. Greenblum et al., “Persons with dementia missing in the community: Is it wandering or something unique?”, BMC Geriatrics, vol. 5, no. 11, Article ID 1471-2318/11/28, 8 pages, 2011.

[7] M.E. Bowen, B. McKenzie, M. Steis, M. and Rowe, “Prevalence of and antecedents to dementia-related missing incidents in the community”, Dementia and Geriatric Cognitive Disorders, vol. 31, no. 6, pp. 406-412, 2011.

[8] M.A. Rowe, H. Ahn, A.P. Benito, H. Stone, A. Wilson, and J. Kairalla, “Injuries and unattended home exits in persons with dementia: A 12-month prospective study”, American Journal of Alzheimer’s Disease and other Dementias, vol. 25, no. 1, pp. 27-31, 2010.

[9] S.M.C. Rasquin, C. Willems, S. de Vliger, R.P.J Geers, and M. Soede, “The use of a technical devices to support outdoor mobility of dementia patients”, Technology and Disability, vol. 19, no. 2/3, pp. 113-120, 2007.

[10] L. Robinson, D. Hutchings, L. Corner et al., “A systematic literature review of the effectiveness of non-pharmacological interventions to prevent wandering in dementia and evaluation of the ethical implications and acceptability of their use”, Health Technology Assessment, vol. 10, no. 26, pp. ix-108, 2006.

[11] L. Robinson, K. Brittain, S. Lindsay, D. Jackson, and P. Olivier, “Keeping in touch everyday (KITE) project: Developing assistive technologies with people with dementia and their carers to promote independence”, International Psychogeriatrics, vol. 5, pp.1-9, 2009.

19

STUDY IV

[12] K.H. Namazi, and B.D. Johnson, “Pertinent autonomy for residents with dementias: Modification of the physical environment to enhance independence”, American Journal of Alzheimer’s Disease and other Dementias, vol. 7, no. 1, pp. 9-15, 1992.

[13] J. Leong, I. Madjar, and B. Fiveash, “Needs of family carer of elderly peoples with dementia living in the community”, Australasian Journal of Ageing, vol. 20, no. 3, pp. 133-138, 2001.

[14] C. Quinn, L. Clare, A. Pearce, and M. van Dijkhuizen, “The experience of providing care in the early stages of dementia: An interpretative phenomenological analysis”, Aging and Mental Health, vol. 12, no. 6, pp. 769-778, 2008.

[15] S. Werner, G.K. Auslander, N. Shoval, T. Gitlitz, R. Landau, and J. Heinik, “Caregiving burden and out-of-home mobility of cognitively impaired care-recipients based on GPS tracking”, International Psychogeriatrics, vol. 24, no. 11, pp. 1836-1845, 2012.

[16] N. Shoval, G.K. Auslander, T. Freytag et al., “The use of advanced tracking technologies for the analysis of mobility in alzheimer’s disease and related cognitive diseases”, BMC Geriatrics, vol. 8, no. 7, Article ID 1471-2318/8/7, 12 pages, 2008.

[17] E. Bantry White, P. Montgomery, and R. McShane, “Electronic tracking for people with dementia who get lost outside the home: A study of the experience of familial carers”, British Journal of Occupational Therapy, vol. 73, pp. 152-159, 2010.

[18] R. Landau, G.K. Auslander, S. Werner, N. Shoval, and J. Heinik, “Families’ and professional caregivers’ views of using advanced technology to track people with dementia”, Qualitative Health Research, vol. 20, no. 3, pp. 409-419, 2010.

[19] S. Lauriks, A. Reinersmann, H.G. Van der Roest et al., “Review of ICT-based services for identified unmet needs in people with dementia”, Ageing Research Reviews, vol. 6, no. 3, pp. 223-246, 2007.

[20] A.M. Pot, B.M. Willemse, and S. Horjus, “A pilot study on the use of tracking technology: Feasibility, acceptability, and benefits for people in early stages of dementia and their informal caregivers”, Aging and Mental Health, vol. 16, no. 1, pp. 127-134, 2012.

[21] D. Aldridge, “Single case research designs for the clinician”, Journal of the Royal Society of Medicine, vol. 84, no. 5, pp. 249-252, 1991.

[22] A.E Kazdin, “Single-case research designs - methods for clinical and applied settings”, 2nd ed. New York: Oxford University Press, Inc. 2011.

[23] A. Olsson, M. Engström, C. Lampic, and K. Skovdahl, “A passive positioning alarm used by persons with dementia and their spouses - a qualitative intervention study”, BMC Geriatrics, vol. 13, no.11, Article ID 1471-2318/13/11, 9 pages, 2013.

[24] S. Elmstahl, B. Malmberg, and L. Annerstedt, “Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale”, Archives of Physical Medicine and Rehabilitation, vol. 77, no. 2, pp. 177-182, 1996.

20

[25] A. Wimo, and G. Nordberg, “Validity and reliability of assessments of time. comparisons of direct observations and estimates of time by the use of the resource utilization in dementia (RUD)-instrument”, Archives of Gerontology and Geriatrics, vol. 44, no 1, pp.71-81, 2007.

[26] J.L. Cummings, M. Mega, K. Gray, S. Rosenberg-Thompson, D.A. Carusi, and J. Gornbein, “The neuropsychiatric inventory: Comprehensive assessment of psychopathology in dementia”, Neurology, vol. 44, no. 12, pp. 2308-2314, 1994.

[27] D.I. Kaufer, J.L. Cummings, P. Ketchel et al., “Validation of the NPI-Q, a brief clinical form of the neuropsychiatric inventory”, The Journal of Neuropsychiatry and Clinical Neurosciences, vol. 12, no. 2, pp. 233-239, 2000.

[28] R.I. Parker and K. Vannest, “An improved effect size for single-case research: Nonoverlap of all pairs”, Behavior Therapy, vol. 40, no. 4, pp. 357-367, 2009.

[29] S. Zhan and K.J. Ottenbacher, “Single subject research designs for disability research”, Disability and Rehabilitation, vol. 15, no. 23, pp.1-8, 2001.

[30] R. McShane, K. Gedling, J. Keene, C. Fairburn, R. Jacoby, and T. Hope, “Getting lost in dementia: A longitudinal study of a behavioral symptom”, International Psychogeriatrics, vol. 10, no. 3, pp. :253-260, 1998.

[31] C. Quinn, L. Clare, and B. Woods, “The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: A systematic review”, Aging and Mental Health, vol. 13, no. 2, pp.143-154, 2009.

[32] V. Venkatesh, M.G. Morris, G.B. Davis, and F.D. Davis, “User acceptance of information technology: Toward a unified view”, MIS Quarterly, vol. 27, no. 3, pp. 425-478, 2003.

[33] Z. Feng, J.P. Hirdes, T.F Smith et al., “Use of physical restraints and antipsychotic medications in nursing homes: A cross-national study”, International journal of geriatric psychiatry. vol. 24, no. 10, pp.1110-1118, 2009.

[34] G. Meyer, S. Kopke, B. Haastert, and I. Muhlhauser, “Restraint use among nursing home residents: Cross-sectional study and prospective cohort study”, Journal of Clinical Nursing, vol. 18, no. 7, pp. 981-990, 2009.

[35] A. Olsson, M. Engstrom, K. Skovdahl, and C. Lampic, “My, your and our needs for safety and security: Relatives' reflections on using information and communication technology in dementia care”, Scandinavian Journal of Caring Sciences, vol. 26, pp. 104-112, 2012.

[36] Y. Cedervall and A.C. Aberg, “Physical activity and implications on well-being in mild alzheimer's disease: A qualitative case study on two men with dementia and their spouses”, Physiotherapy Theory and Practice, vol. 26, no. 4, pp. 226-239, 2010.

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[37] S. Vikstrom, S. Josephsson, A. Stigsdotter-Neely, and L. Nygard, “Engagement in activities: Experiences of persons with dementia and their caregiving spouses”, Dementia, vol. 7, no. 2, pp. 251-270, 2008.

[38] A. Bergland and M. Kirkevold, “Thriving in nursing homes in norway: Contributing aspects described by residents”, International Journal of Nursing Studies, vol. 43, no. 6, pp. 681-691, 2006.

22

Table 1. Characteristics of participating couples. Couple 1 Couple 2 Couple 3 Persons with dementia Age (years) 72 76 72 Daytime care x*

Spouse Age (years) 72 74 72 Housing environment Villa x Apartment x x Descriptive measures RUD

-IADL (hours/day) 8 10 -ADL (hours/day) 2 2 -Supervision (hours/day) 2 3 2

NPI (total score) 29 44 3 -Delusion 0 1 0 -Hallucination 0 1 0 -Agitation 2 1 0 -Depression 2 3 1 -Anxiety 0 3 1 -Euphoria 0 0 0 -Apathy 8 4 1 -Disinhibition 6 0 0 -Irritability 6 3 0 -Aberrant motor behavior 0 4 0 -Sleep 4 12 0 -Eating 1 12 0

Caregiver Burden Scale (M) 2.09 1.82 2.27 RUD, Resource of Utilization in Dementia; IADL, Instrumental Activities of Daily Living; ADL, Activities of Daily Living, NPI, Neuro-Psychiatric Inventory, total score (range 0-144) and subarea score (range 0-12). For all instruments high scores indicate more perceived symptoms and burden. *Three days/week

23

STUDY IV

Table 2. Outcome results. Phase A1 B1 A2 B2 Couple1(weeks) 3 7 4 5

Primary outcomes - PwD independent outdoor activities (%) 11*/21 (52 %) 12*/49 (24 %) 7*/28 (25 %) 17*/35 (49 %) - Spouse worry (Md, quartile) 5, 4.5-5.5 5, 3.5-5 7, 6-7 5, 5-5 - PwD irritability (Md, quartile) 4, 3.5-5 5, 4-5 5, 4.5-6 5, 5-6

Secondary outcomes - PwD well-being (proxy) (Md, quartile) 5, 5-6 5, 5-5 5, 5-5 5, 5-5 - PwD well-being (Md, quartile) 5, 4-6 5, 5-5 5, 4-5 5, 4-5 - Spouse well-being (Md, quartile) 5, 5-6 4, 4-5 5, 4-5 4, 4-5

Additional outcomes - Days with 2 or more independent outdoor activities 0/21 0/49 1/28 0/35 - Independent outdoor activities (min) (Md, quartile) 65, 62-70 60, 45-82 45, 27-107 60, 40-72 - Accompanied outdoor activities (n) 1 10 6 12 - Accompanied outdoor activities (min) (Md, quartile) 45, - 60, 39-70 40, 35-45 37, 32-41 - Generated alarms (n) 15 12

Couple 2(weeks) 3 7 5 4**

Primary outcomes - PwD independent outdoor activities (%) 0*/21 (0 %) 27*/49 (55 %) 19*/35 (54 %) 21*/30** (70 %) - Spouse worry (Md, quartile) 0, 0-0 1, 0-0 0, 0-1 0, 0-0 - PwD depressed mood (Md, quartile) 0, 0-2.5 0, 0-0 0, 0-0 0, 0-0

Secondary outcomes - PwD well-being (proxy) (Md, quartile) 10, 8-10 10, 10-10 10, 10-10 10, 10-10 - PwD well-being (Md, quartile) 10, 10-10 10, 10-10 10, 10-10 10, 10-10 - Spouse well-being (Md, quartile) 8, 6-10 10, 8-10 10, 10-10 10, 10-10

Additional outcomes - Days with 2 or more independent outdoor activities 0/21 11/49 12/35 17/30** - Independent outdoor activities (min) (Md, quartile) - 40,39-49 40,30-40 40,40-48 - Accompanied outdoor activities (n) 21 37 21 19 - Accompanied outdoor activities (min) (Md, quartile) 75, 70-95 65, 40-75 75, 65-102 62, 52-67 - Generated alarms (n) 59 30

Couple 3(weeks) 2 5 4 5

Primary outcomes - PwD independent outdoor activities (%) 6*/14 (43 %) 31*/35 (88 %) 15*/28 (54 %) 27*/35 (77 %) - Spouse worry (Md, quartile) 0, 0-0 0, 0-0 0, 0-0 0, 0-0 - PwD depressed mood (Md, quartile) 0, 0-1.5 0, 0-0.5 0, 0-0 0, 0-0

Secondary outcomes - PwD well-being (proxy) (Md, quartile) 10, 9-10 9, 8.5-9 8, 8-9 9, 9-9 - PwD well-being (Md, quartile) 10, 10-10 9, 8-9 8, 8-9 9, 9-9 - PwD own worry (Md, quartile) 0, 0-0 0, 0-0 0, 0-0 0, 0-0 - Spouse well-being (Md, quartile) 9.5, 9-10 9, 9-9 9, 8-9 9, 9-9

Additional outcomes - Days with 2 or more independent outdoor activities 0/14 13/35 2/28 4/35 - Independent outdoor activities (min) (Md, quartile) 40, 30-45 52, 42-55 40, 40-42 40, 40-43 - Accompanied outdoor activities (n) 5 7 5 9 - Accompanied outdoor activities (min) (Md, quartile) 60, - 35, 25-58 42, 38-100 65, 42-85 - Generated alarms (n) 31 24

* Refers to the proportion of days with independent outdoor activities of the number of days on which estimations were made in the diary. ** The phase was 4 weeks and 2 days long

24

0

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1 3 5 7 9 11 13 15 17 19 21 23 25 27 29 31 33 35 37 39 41 43 45 47 49 51 53 55 57 59 61 63 65 67 69 71 73 75 77 79 81 83 85 87 89 91 93 95 97 99 101

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Not worried at all

Phase A2 Phase A1 Phase B1 Phase B2

Extremly worried

Observation session

52 %

24 % 25 %

49 %

Figure 1. Spouse 1 worry concerning PwD independent outdoor activities (O) and PwD 1 independent outdoor activities (%)

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Extremly irratable

No irritability at all

Phase A1 Phase B1 Phase A2 Phase B2

52% 24%

25%

49%

Observation session

Figure 2. PwD 1 irritability (proxy) and independent outdoor activities (%)

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STUDY IV

0

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Not worried at all

Extremly worried

70%


54%

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Observation session


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1 4 7 10 13 16 19 22 25 28 31 34 37 40 43 46 49 52 55 58 61 64 67 70 73 76 79 82 85 88 91 94 97 100 103 106 109 112 115 118 121 124 127 130 133

55 % 54 %

70 %

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Extremly depressed mood

No depressive mood at all


Observation session

Figure 4. PwD 2 depressive mood (proxy) and independent outdoor activities (%)

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Extremly worried


43 %

88 %

54 %

77 %

Not worried at all Observation session


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Extremly depressed mood

No depressive mood at all

43%

88%

54%

77%


Observation session

Figure 6. PwD 3 depressive mood (proxy) and independent outdoor activities (%)

27

STUDY IV

Publications in the series Örebro Studies in Care Sciences*

1. Gustafsson, Margareta (2003) Konsekvenser av en akut traumatisk handskada. En prospektiv studie av patientens situation under det första året efter olyckan. Doktorsavhandling/Doctoral thesis with focus on Nursing.

2. Jackson, Karin (2005) Att vara förälder till ett för tidigt fött barn – en prospektiv studie om upplevelsen av föräldraskap och möten med vården. Doktorsavhandling/Doctoral thesis with focus on Nursing.

3. Odencrants, Sigrid (2005) Måltidsrelaterade situationer och näringstillstånd ur patienters med kroniskt obstruktiv lungsjukdom och sjuksköterskors perspektiv. Vetenskaplig uppsats för licentiatexamen/Academic essay.

4. Göransson, Katarina (2005) Emergency department triage – a challenging task for Swedish emergency nurses. Vetenskaplig uppsats för licentiatexamen/Academic essay.

5. Eldh, Ann Catrine (2005) Patienters upplevelser av och uttryck för fenomenet delaktighet i hälso- och sjukvård. Vetenskaplig uppsats för licentiatexamen/Academic essay.

6. Florin, Jan (2005) Clinical judgement in nursing – a collaborative effort? Patient participation and nurses’ knowledge. Vetenskaplig uppsats för licentiatexamen/Academic essay.

7. Ekwall, Ewa (2006) Women’s Experiences of Primary and Recurrent Gynecological Cancer. Vetenskaplig uppsats för licentiatexamen/Academic essay.

8. Pettersson, Ingvor (2006) Significance of Assistive Devices in the Daily Life of Persons with Stroke and Their Spouses. Doktors avhandling/Doctoral thesis with focus on Occupational Therapy.

9. Carlsson, Eva (2006) Understanding persons with eating difficulties and communication impairment after stroke – patient experiences and methodological issues in qualitative interviews. Vetenskaplig uppsats för licentiatexamen/Academic essay.

10. Göransson, Katarina (2006) Registered nurse-led emergency department triage: organisation, allocation of acuity ratings and triage decision making. Doktorsavhandling/Doctoral thesis with focus on Nursing.

* Seriens namn var tidigare (nr 1–24) ”Örebro Studies in Caring Sciences”.

11. Eldh, Ann Catrine (2006) Patient participation – what it is and what it is not. Doktorsavhandling/Doctoral thesis with focus on Nursing.

12. Isaksson, Ann-Kristin (2007) Chronic sorrow and quality of life in patients with multiple sclerosis. Doktorsavhandling/Doctoral thesis with focus on Nursing.

13. Florin, Jan (2007) Patient participation in clinical decision making in nursing – a collaborative effort between patients and nurses. Doktorsavhandling/Doctoral thesis with focus on Nursing.

14. Johansson, Agneta (2007) Adolescents’ perspective on mental health and health-promoting dialogues. Vetenskaplig uppsats för licentiatexamen/Academic essay.

15. Frisk, Margot (2007) Asthma and respiratory symptoms related to the housing environment. Doktorsavhandling/Doctoral thesis with focus on Occupational Therapy.

16. Forslund, Kerstin (2007) Challenges in prehospital emergency care – patient, spouse and personnel perspectives. Doktorsavhandling/Doctoral thesis with focus on Nursing.

17. Odencrants, Sigrid (2008) The complexity of nutritional status for persons with chronic obstructive pulmonary disease – a nursing challenge. Doktorsavhandling/Doctoral thesis with focus on Nursing.

18. Tollén, Anita (2008) Vardagen och förväntningar på dagrehabilitering – en studie i äldre personers uppfattningar. Vetenskaplig uppsats för licentiat examen/Academic essay.

19. Dwyer, Lise-Lotte (2008) Dignity in the end of life care – what does it mean to older people and staff in nursing homes? Doktorsavhandling/Doctoral thesis with focus on Nursing.

20. Lidskog, Marie (2008) Learning with, from and about each other: Inter-professional education on a training ward in municipal care for older persons.Doktorsavhandling/Doctoral thesis.

21. Tinnfält, Agneta (2008) Adolescents’ perspectives – on mental health, being at risk, and promoting initiatives. Doktorsavhandling/Doctoral thesis with focus on Public Health.

22. Carlsson, Eva (2009) Communication about eating difficulties after stroke – from the perspectives of patients and professionals in health care. Doktorsavhandling/Doctoral thesis with focus on Nursing.

23. Källström Karlsson, Inga-Lill (2009) Att leva nära döden. Patienters och vårdpersonals erfarenheter inom hospicevård. Doktorsavhandling/Doctoral thesis with focus on Nursing.

24. Österlind, Jane (2009) När livsrummet krymper. Doktorsavhandling/ Doctoral thesis with focus on Nursing.

25. Liedström, Elisabeth (2009) Experiences of Chronic Sorrow and Quality of Life in Next of Kin of Patients with Multiple Sclerosis. Vetenskaplig uppsats för licentiatexamen/Academic essay.

26. Petersson, Pia (2009) Att göra abstrakta begrepp och komplexa situationer konkreta. En avhandling om deltagarbaserad aktionsforskning i svensk vård och omsorg.

Doktorsavhandling/ Doctoral thesis with focus on Nursing.

27. James, Inger (2010) Bakom rutinerna. Kunskap och omvårdnadspraxis i mänskliga gränssituationer. Doktorsavhandling/ Doctoral thesis with focus on Nursing.

28. Thoroddsen, Ásta (2010) The role of standardised nursing languages in representing nursing and supporting nurses as knowledge workers. Doktorsavhandling/ Doctoral thesis with focus on Nursing.

29. Pettersson, Camilla (2010) Parents’ Possibility to Prevent Underage Drinking. Studies of Parents, a Parental Support Program, and Adolescents in the Context of a National Program to Support NGOs. Doktorsavhandling/ Doctoral thesis with focus on Public Health.

30. Rydlo, Cecilia (2010) Fighting for the otherness. Student nurses’ lived experiences of growing in caring. Doktorsavhandling/Doctoral thesis.

31. Ek, Kristina (2010) Att leva med mycket svår kronisk obstruktiv lungsjukdom – ett liv i slowmotion. Doktorsavhandling/Doctoral thesis.

32. Fröding, Karin (2011) Public Health, Neighbourhood Development, and Participation. Research and Practice in four Swedish Partnership Cities. Doktorsavhandling/Doctoral thesis.

33. Kollén, Lena (2011) Dizziness, balance and rehabilitiation in vestibular disorders. Doktorsavhandling/Doctoral thesis.

34. Wallerstedt, Birgitta (2012) Utmaningar, utsatthet och stöd i palliativ vård utanför specialistenheter. Doktorsavhandling/Doctoral thesis.

35. Ewertzon, Mats (2012) Familjemedlem till person med psykossjukdom: bemötande och utanförskap i psykiatrisk vård. Doktorsavhandling/Doctoral thesis.

36. Fossum, Mariann (2012) Computerized Decision Support System in Nursing Homes. Doktorsavhandling/Doctoral thesis.

37. Henriksson, Anette (2012) A support group programme for family members: an intervention during ongoing palliative care. Doktorsavhandling/Doctoral thesis.

38. Hälleberg Nyman, Maria (2012) Urinary catheter policies for short-term bladder drainage in hip surgery patients. Doktorsavhandling/Doctoral thesis.

39. Thorstensson, Stina (2012) Professional support in childbearing, a challenging act of balance. Doktorsavhandling/Doctoral thesis.

40. Geidne, Susanna (2012) The Non-Governmental Organization as a Health promoting Setting. Examples from Alcohol Prevention Projects conducted in the Context of National Support to NGOs. Doktorsavhandling/Doctoral thesis.

41. Lidström Holmqvist, Kajsa (2012) Occupational therapy practice for clients with cognitive impairment following acquired brain injury – occupational therapists’ perspective. Doktorsavhandling/Doctoral thesis.

42. Tollén, Anita (2013): Äldre personers dagliga liv och betydelsen av dagrehabilitering. Doktorsavhandling/Doctoral thesis.

43. Pajalic, Zada (2013): Matdistribution till hemmaboende äldre personer ur flera perspektiv. Doktorsavhandling/Doctoral thesis.

44. Olsson, Annakarin (2013): Daily life of persons with dementia and their spouses supported by a passive positioning alarm. Doktorsavhandling/Doctoral thesis.

Documents

Daily life of persons with dementia and their spouses supported by a passive positioning alarm