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Physiotherapy Theory and Practice, 26(4):226–239, 2010 Copyright & Informa Healthcare ISSN: 0959-3985 print/1532-5040 online DOI: 10.3109/09593980903423012 QUALITATIVE RESEARCH REPORT Physical activity and implications on well-being in mild Alzheimer’s disease: A qualitative case study on two men with dementia and their spouses Ylva Cedervall, PT, BSc 1 and Anna Cristina A ˚ berg, PT, PhD 2 1 Department of Public Health and Caring Sciences/Geriatrics, Uppsala University, Uppsala, Sweden 2 Senior Lecturer, The Swedish School of Sport and Health Sciences, Stockholm, Sweden ABSTRACT To improve the understanding of experiences of people with mild Alzheimer’s disease (AD) and their significant others, related to the physical activity of the afflicted persons and its perceived importance. A qualitative case study design was used. The study comprised two men with mild AD and their wives. Data were collected by qualitative interviews and participant observations. Data analysis followed a thematic guideline as described by Braun and Clarke (2006). Three central themes of experiences related to physical activity in AD were identified: 1) physical activity as health reinforcement; 2) barriers to physical activity; and 3) adaptation stra- tegies. Important motivations for outdoor walks were enjoyable experiences of nature, body movement, and positive attitudes toward physical activity. Several factors were experienced as barriers to physical activity (e.g., tiredness, difficulties in finding one’s way, and ‘‘peculiar behavior’’). Significant others made considerable adjustments in everyday life to enable their partners to retain a physically active lifestyle. The findings indicate that in persons with AD, physical activities such as outdoor walking can play an important part in everyday life by creating meaningful routines and improving experienced well-being and health. INTRODUCTION People recently diagnosed with Alzheimer’s disease (AD) have stated that their worst worry concern- ing the diagnosis was fear of public embarrassment and/or disgrace (Husband, 2000; Phinney, 1998). Concerns about not being listened to and fear that others would find out about the illness also charac- terized their narrations. This resulted in withdrawal from social activities and a restricted life space. Such personal experiences confirm the finding by other researchers of a reduction in physical performance and in the habitual physical activity level in persons with early AD compared with nondemented indivi- duals (Burns et al, 2008). There are several factors related to the AD diagnosis that might affect a person’s ability to be physically active. Memory dysfunction, lack of initia- tive, and impaired executive function are common early symptoms and can result in physical inactivity (Diagnostic and Statistical Manual of Mental Disorders: DSM-IV-TR, 2000; Goetz, 2007; SBU, The Swedish Council on Technology Assessment in Health Care, 2008). Many studies also have shown that impairment of gait function can occur early in the course of AD (Camicioli, Howieson, Lehman, and Kaye, 1997; O’Keeffe et al, 1996; Pettersson, Engardt, and Wahlund, 2002; Pettersson, Olsson, and Wahlund, 2005; Sheridan, Solomont, Kowall, and Hausdorff, 2003; Tsolaki et al, 2001). The ability to be physically active in early stages of AD can be impaired as a result both of neuro- pathological dysfunctions and of psychological reactions to the diagnosis. In addition, it may be assumed that these factors will interact and the afflicted person may become trapped in a vicious Address correspondence to Ylva Cedervall, PT, BSc, Department of Public Health and Caring Sciences/Geriatrics, Uppsala Science Park, Uppsala University, 751 83 Uppsala, Sweden. E-mail: [email protected] Accepted for publication 4 March 2009. 226 Physiother Theory Pract Downloaded from informahealthcare.com by Michigan University on 10/27/14 For personal use only.

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Physiotherapy Theory and Practice, 26(4):226–239, 2010Copyright & Informa HealthcareISSN: 0959-3985 print/1532-5040 onlineDOI: 10.3109/09593980903423012

QUALITATIVE RESEARCH REPORT

Physical activity and implications on well-being inmild Alzheimer’s disease: A qualitative case studyon two men with dementia and their spouses

Ylva Cedervall, PT, BSc1 and Anna Cristina Aberg, PT, PhD2

1Department of Public Health and Caring Sciences/Geriatrics, Uppsala University, Uppsala, Sweden2Senior Lecturer, The Swedish School of Sport and Health Sciences, Stockholm, Sweden

ABSTRACT

To improve the understanding of experiences of people with mild Alzheimer’s disease (AD) and their significant

others, related to the physical activity of the afflicted persons and its perceived importance. A qualitative case

study design was used. The study comprised two men with mild AD and their wives. Data were collected by

qualitative interviews and participant observations. Data analysis followed a thematic guideline as described

by Braun and Clarke (2006). Three central themes of experiences related to physical activity in AD were

identified: 1) physical activity as health reinforcement; 2) barriers to physical activity; and 3) adaptation stra-

tegies. Important motivations for outdoor walks were enjoyable experiences of nature, body movement, and

positive attitudes toward physical activity. Several factors were experienced as barriers to physical activity

(e.g., tiredness, difficulties in finding one’s way, and ‘‘peculiar behavior’’). Significant others made considerable

adjustments in everyday life to enable their partners to retain a physically active lifestyle. The findings indicate

that in persons with AD, physical activities such as outdoor walking can play an important part in everyday life

by creating meaningful routines and improving experienced well-being and health.

INTRODUCTION

People recently diagnosed with Alzheimer’s disease

(AD) have stated that their worst worry concern-

ing the diagnosis was fear of public embarrassment

and/or disgrace (Husband, 2000; Phinney, 1998).

Concerns about not being listened to and fear that

others would find out about the illness also charac-

terized their narrations. This resulted in withdrawal

from social activities and a restricted life space. Such

personal experiences confirm the finding by other

researchers of a reduction in physical performance

and in the habitual physical activity level in persons

with early AD compared with nondemented indivi-

duals (Burns et al, 2008).

There are several factors related to the AD

diagnosis that might affect a person’s ability to be

physically active. Memory dysfunction, lack of initia-

tive, and impaired executive function are common

early symptoms and can result in physical inactivity

(Diagnostic and Statistical Manual of Mental

Disorders: DSM-IV-TR, 2000; Goetz, 2007; SBU,

The Swedish Council on Technology Assessment in

Health Care, 2008). Many studies also have shown

that impairment of gait function can occur early in the

course of AD (Camicioli, Howieson, Lehman, and

Kaye, 1997; O’Keeffe et al, 1996; Pettersson, Engardt,

and Wahlund, 2002; Pettersson, Olsson, and

Wahlund, 2005; Sheridan, Solomont, Kowall, and

Hausdorff, 2003; Tsolaki et al, 2001).

The ability to be physically active in early stages of

AD can be impaired as a result both of neuro-

pathological dysfunctions and of psychological

reactions to the diagnosis. In addition, it may be

assumed that these factors will interact and the

afflicted person may become trapped in a vicious

Address correspondence to Ylva Cedervall, PT, BSc, Department of

Public Health and Caring Sciences/Geriatrics, Uppsala Science Park,

Uppsala University, 751 83 Uppsala, Sweden.

E-mail: [email protected]

Accepted for publication 4 March 2009.

226

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circle, leading to a gradual decline in the physical

activity level. Besides entailing a risk of general

deterioration in motor functions, too low a level of

physical activity may have psychological consequences

such as apathy and cognitive blunting. Furthermore,

limited social interaction, physical inactivity, and

motor impairments in people with AD can accelerate

the risk of dependence and health deterioration (Heyn,

Abreu, and Ottenbacher, 2004; Nelson et al, 2007;

Rolland et al, 2000; Teri et al, 2003).

In this context the concept of health can be

understood from different points of view. The World

Health Organization (WHO) has constructed a system

for clarifying and defining different aspects of health

(i.e., The International Classification of Functioning,

Disability and Health [ICF]) (WHO, 2001). This

classification describes health as a state of physical,

psychological, and social well-being and not only as

absence of illness or handicap. The term ‘‘well-being’’

is used in ICF as a general term including all human

aspects of life that represent a ‘‘good life.’’ In addition

to the definition in ICF, health can be defined as the

balance between a person’s capacity and his life goals

(Porn, 1993). According to the latter definition, a

person’s ability to adjust to an altered capacity can

influence his/her health. This implies that motor and

cognitive impairments do not necessarily result in

subjective deterioration of health.

In the general population health can be promoted

by regular physical activities (Hillman, Erickson, and

Kramer, 2008; Nelson et al, 2007; Pate et al, 1995).

It has been proposed that this is also true for

persons with cognitive impairments or dementia.

Positive effects of physical activity on such persons

have been reported, not only on physical functions but

also on cognitive functions, behavior, sleep, and mood

(Eggermont and Scherder, 2006; Heyn et al, 2004;

Teri et al, 2003; Williams and Tappen, 2007). Thus,

regular physical activity might be a valuable method

for improving the health of people with AD.

It is important to consider the positive effects of

physical activities in dementia in relation to the impact

of AD on the afflicted person’s ability and potential to

engage in such activities. It may be necessary for

persons with AD in early stages to have personal

support to maintain a physically active lifestyle (Burns

et al, 2008; Husband, 2000; Phinney, 1998). This

means that the responsibility for taking the initia-

tive to engage in regular physical activities may rest

on significant others, with a risk of increasing their

burden of care (Donaldson, Tarrier, and Burns, 1998;

Grafstrom and Winblad, 1995; Gruffydd and Randle,

2006). To our knowledge, however, no studies concern-

ing personal experiences related to physical activity in

AD have been published.

The purpose of the present study was to improve

the understanding of experiences of people with mild

AD and their significant others, regarding the afflicted

persons’ ability to be physically active, and to gain

insight into their perception of the importance of

physical activity in AD.

The study was approved by the Ethical Research

Committee of the Faculty of Medicine, Uppsala

University.

METHODS

Study design

A qualitative case study design was used. Data on the

subjects’ experiences were collected in the course of

qualitative interviews and through participant observa-

tions (Polit and Beck, 2008). All data collection was

carried out by the first author (YC), who is a physio-

therapist with extensive experience of geriatric rehabi-

litation, including assessment of motor disturbances in

people undergoing memory investigation. The thematic

analysis method described by Braun and Clarke (2006)

was used for analyzing and interpreting the data. Efforts

to ensure validity were made throughout the research

process. These measures are described in detail in both

the Methods and the Methodological considerations

and limitations sections.

Selection of participants

A diagnosis of mild AD was the main criterion for

inclusion in this study. In the early stage of AD,

cognitive impairments that interfere with daily activi-

ties are typical. In addition to memory dysfunction

a person with AD may for example have difficul-

ties with orientation, communication, initiating, and

planning (SBU, The Swedish Council on Technology

Assessment in Health Care, 2008). Testing by the use

of the Mini Mental State Examination (MMSE);

a cognitive screening test widely used in research and

clinical settings (Folstein, Folstein, and McHugh,

1975) gives an indication of the level of cognitive

function. The maximum score is 30 points, and a value

between 25 and 30 points suggests normal cognitive

capacity, whereas the lower limit for mild AD is

commonly set to MMSE520 points.

In addition to the main criterion, physicians at an

outpatient memory clinic in central Sweden considered

the following criteria for inclusion: Swedish speaking;

community-dwelling with a spouse; capable of indepen-

dent transfer according to the General Motor Function

Assessment Scale (GMF) (Aberg, Lindmark, and

Physiotherapy Theory and Practice 227

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Lithell, 2003); no injuries or other illnesses apart from

AD that could affect the ability to ambulate; considered

to have relevant contributions to make regarding the

questions addressed in the study; and regarded as

capable of holding a conversation for at least half an

hour. Criteria for the spouse were the following:

Swedish speaking; considered to have relevant contri-

butions to make regarding the questions addressed

in the study; and regarded as capable of holding

a conversation for at least half an hour. On the basis of

these criteria the physicians suggested two community-

dwelling married men with mild AD for participation in

the study together with their spouses. These two couples

were subsequently invited (by YC) and they all agreed

to participate.

Data collection

The data collection lasted for about 1 month for each

couple and took place in the following sequence:

1) interview with the man with AD; 2) participant

observation of the man with AD; 3) interview with the

spouse; 4) interview with the man with AD; and

5) participant observation of the man with AD. There

was an interval of approximately 1 week between

each of the occasions. Each interview lasted for about

45–60 minutes and each participant observation lasted

45–120 minutes (Appendices A and B). The reason for

carrying out two interviews with each of the two men

with AD was to obtain a deeper understanding of their

experiences of the issue under study. The second

interview provided an opportunity to further elucidate

experiences described previously and to obtain clarifi-

cations. The participant observations were made on two

different days during different physical activities to

obtain the most detailed picture of the issue in question.

Interviews

Each interview was conducted at the subject’s home,

without the spouse being present. An interview guide

with open-ended questions was used (Appendix A).

The areas of questioning dealt with how the subjects

felt that the AD had influenced the men’s ability to be

physically active and the participants’ thoughts about

the importance of physical activity. The opening

question to the men with AD was: ‘‘What do you

think about your ability to move about and be

physically active now, compared with the time before

you had problems with your memory?’’ The wives, at

their interviews were asked: ‘‘What do you think about

your husband’s ability to move about and be physically

active compared with the time before he developed

memory problems?’’ At the interviews free narration

was encouraged, and the same areas were highlighted

on several occasions during the interviews to achieve

a deeper understanding. The interviews were tape-

recorded in their entirety and transcribed verbatim

(by YC).

Participant observations

The focus of the observations was to obtain a more

detailed picture of the experiences described at the

interviews. The observations took place in each man’s

home environment. An observation guide listing areas

to be observed was used (Appendix B). The men’s

ability to perform physical activities in everyday life

was observed, and suitable times were chosen in

agreement with the participants. The observations

were made during outdoor walks with and without the

wife being present, during time spent at a day care

center, when riding a bike to go shopping, at meal-

times, and at teatime. The participants initiated the

physical activities during the observations, and efforts

were made to maintain a personal, yet expectant

attitude, to not influence the situation more than

necessary. During the participant observations field

notes were taken, and these were summarized imme-

diately afterward, resulting in a written text that

described the observed event in a concrete manner.

Data analysis

The use of multiple triangulation in data collection, inclu-

ding method-, time-, space-, and person-triangulation,

enabled a thick description and provided a basis for

establishing validity (Polit and Beck, 2008). The data,

consisting of written material from the six interviews and

the four participant observations, were analyzed accord-

ing to the thematic analysis guideline described by Braun

and Clarke (2006). Data analysis was carried out in

conjunction with the data collection, enabling new angles

of approach to be identified and allowing any unclear or

indistinct questions to be probed further. The thematic

analysis involved repeated reading of the material to

obtain an overall picture of the data. Important features

of the data were coded into potential themes and were

checked in relation to the coded extract and the data set.

This stage in the analytic process was followed by a

preliminary definition of themes and subthemes based on

analyses and interpretations of the entire data set. In an

effort to establish credibility, repeated peer debriefings

were held between the two authors to explore various

aspects of the information obtained. Analysis, interpre-

tations, and preliminary definitions of themes were

discussed and refined in an ongoing process during the

analytic procedure (Polit and Beck, 2008). The analysis

was performed both on a descriptive level and from a

more comprehensive perspective, seeking patterns and

228 Cedervall and Aberg

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models that could explain the statements and observa-

tions. Themes and subthemes relevant to the aim of the

study were eventually confirmed. Finally, findings in the

present study were considered in relation to theoretical

perspectives and compared with results from other

studies to obtain a comprehensive insight. This under-

standing is described in the discussion section.

Participants

The two couples are presented in the context of their

everyday lives with focus on physical activities.

Assumed names are used in the presentation.

Couple 1: Anders and Anna

Anders was 74 years old and had been married to Anna

for 40 years. They had two children and two grand-

children. During his childhood and youth, Anders had

spent a great deal of time outdoors with his parents. He

had never engaged in any competitive team sport, but

he had played tennis with friends. When their children

were young, the family used to spend winter holidays in

the Swedish mountains and often went skiing. As a

couple, Anders and Anna had also been physically

active during their leisure time by taking regular walks

in the countryside. Anders retired from his work as a

business manager at the age of 65. His wife, who had

worked as a civil servant, retired at the same time. Up to

the age of about 70, Anders was healthy and fit, but

then he started to notice memory failure and was

diagnosed with AD 1 year later at the age of 72. He and

his wife Anna lived in a modern flat in the central part

of a Swedish town with a population of about 150,000.

Three times a week he participated in day care activities

organized by the community. He enjoyed these activi-

ties, which included quizzes, seated exercises, reading

aloud from newspapers, and socializing with the other

participants and staff. Anders walked on his own to

and from the day care center, a distance of about

2 kilometers in each direction. In addition he took

regular walks with his wife. When tested with the

MMSE, Anders scored 21 out of 30 points.

Couple 2: Erik and Eva

Erik was 63 years old and had been married to Eva for

about 10 years. They had no children. Erik grew up in

the country and as a child he spent quite a lot of time

in the countryside, playing with his friends. As a young

boy he also played football, not in a team, but just for

fun. As an adult he had not been physically active

regularly, but from time to time had exercised in the

form of jogging and dancing. He had also participated

in occasional bicycle runs but had not been engaged

in any competitive sport. Erik had worked as a civil

servant in the chemical industry until 4 years pre-

viously. He retired prematurely after a period of sick

leave because of memory problems. He was diagnosed

with AD at the age of 61. At the time of the current

study, Eva still worked as a nurse. Erik and Eva lived

in a terrace house in a suburb of a Swedish town with

a population of about 150,000. There were beautiful

surroundings, with forests and meadows nearby. Erik’s

physical activities consisted mainly of daily walks with

the family dog. He also went shopping locally on his

bicycle and drove his car when necessary to do

errands. When tested with the MMSE, Erik scored

22 out of 30 points.

FINDINGS

Three themes that describe experiences related to the

ability to be physically active in AD, and the perceived

importance of such activities, emerged from the study

(Figure 1): 1) physical activity as health reinforcement;

2) barriers to physical activity; and 3) adaptation

strategies. Important motivations for physical activity

(i.e., for outdoor walks) were enjoyment experienced

Tiredness

Physical activity ashealth reinforcement

Barriers to physicalactivity

Difficulties infinding the way

Peculiarbehavior

Alteredwalkingability

Adaptatationstrategies

Practical strategies andaltered habits

Mentalstrategies

FIGURE 1 Three themes and subthemes describing experiences related to the ability to be physically active and the perceived

importance of such activity in two men with mild Alzheimer’s disease and their spouses.

Physiotherapy Theory and Practice 229

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from nature, body movement and positive attitudes

toward physical activity. Several factors were experi-

enced as barriers to physical activity (e.g., tiredness,

difficulties in finding the way, and ‘‘peculiar behavior’’).

In the following account of the findings, each theme

with its subthemes is presented. When required,

clarifications by the authors are inserted in brackets.

To elucidate the similarities and differences between

the experiences of the two men with AD and those

of their wives, the findings regarding each theme

are presented in conjunction between the men and

their wives.

Physical activity as health reinforcement

This theme reflected the way in which the participants

experienced physical activity, beyond the basic activ-

ities of daily life, and their feelings related to these

experiences. It also reflected the motives of the men for

being physically active and those of their spouses for

supporting them. Both men with AD appeared

enthusiastic about this aspect of their lives and

expressed positive feelings about being out in the

forest and fields. They also showed positive attitudes

toward physical activity in general. Erik said:

I run up hills and I enjoy it. I also feel good

walking, I really do. You look everywhere and

realize that nature changes, and other things

like that.

During the interviews and participant observations

Anders talked about how much he enjoyed the walks to

the day care center. He said:

It’s probably a bit far to go to the day care

center, but I like it. It makes the walking

orderlyyWhen you walk long distances the

goal is clear. Then there are no problems.

Ander’s feelings of well-being when walking long

distances were confirmed during the participant

observation to the day care center. During this walk

he took long steps and moved freely.

Field note:

You get the impression that he really enjoys

walking. He often remarks that it’s a lovely

day. He looks alert and radiates joy.

A considerable difference from this was noted when

Anders walked with his wife along streets with lots of

people and the route was not decided in advance. On

these occasions, he walked rather slowly and somewhat

hesitantly. This was also the case when he walked

indoors in their apartment.

Both wives talked about the ways they had noticed

that their husbands benefited from physical activity.

Eva said:

He feels much better when he’s out in the woods

walking. He is calmer afterwards. I can see that

he is content. He says that he feels alive. It’s

good for him. He enjoys walking.

Anna expressed her opinions as follows:

All people benefit from walking. yWe

walk, we still do at least once a day because

that is really the only thing Anders enjoys

nowadays.

Anders confirmed his wife’s remarks and spoke of

the importance of open-air activities in general as a

motivation for staying physically active on a regular

basis. He talked about many delightful experiences of

outdoor life throughout his childhood and adult years

and explained his feelings as follows:

It must be hereditary in some way. It’s sort of

automatic. On a beautiful winter day you take

the opportunity. You really want to get out in

the open air. That is the motiveyYou can say

that physical activity is a necessary ingredient

in life.

Erik was able to initiate and carry out many of his

daily routines. He said that he felt good taking walks in

the woods, and expressed positive attitudes toward

physical activity. The relationship with his dog and his

concern about its well-being also seemed to be an

important reason for his daily walks. His wife also

stated that the dog’s needs were important for Erik.

Erik said:

It’s mostly because we have a dog. She (the

dog) needs to get out, but I like it too. Going

out by yourself is not much fun. With a dog

something is happening all the timey. I think

it’s better to move about than to sit and look at

the walls. I think that makes you passive.

Field note:

Erik is happy, walks fast and laughs a lot.

He puts the dog on the leash and chats with her

all the time. On several occasions there have

to be certain rituals with the dog. He lets the

dog go along a path and takes another path

himself. He whispers to me that the dog is

going to stop at a certain place and look for

him, and this happens. Later we get to a hill,

Erik is laughing and gets the dog to rush uphill

with him. He tells me that the dog will get fitter

that way.

230 Cedervall and Aberg

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Barriers to physical activity

During the interviews, both Anna and Eva talked

about how the AD diagnosis had changed and

complicated their husbands’ ability to be physically

active and through this the daily life of the two couples.

Anders and Erik also said that they had noticed some

of these impacts of the illness, but they did not appear

to dwell on them to the same extent as their spouses.

In addition, the two wives stated that it was hard for

them to understand and cope with changes in their

husbands, such as tiredness, difficulty in finding the

way and, in their opinion, ‘‘peculiar behavior.’’

Tiredness

The two men and their spouses were in agreement that

the men had been more tired since becoming ill.

Anders needed more sleep, including an afternoon

nap. He said:

When I get home now I am much more tired

than I used to be. I like to lie down then and

sleep for a while. It has become necessary since

this mess (the AD diagnosis) began.

Anna referred to her experiences of her husband’s

tiredness and said:

So, when he is at home I think that he more or

less always just lies in bed and I find that very

hard to watch.

Erik described his experience as a diffuse feeling of

being ‘‘tired in the head’’:

I find the mornings hard in some ways. I am

kind of tired. I have noticed that I am not quite

clear in my head in the morning, but it dis-

appears. ySometimes I also have a headache

in a strange kind of way; I am tired inside my

head.

Eva also described how Erik’s sleeping habits had

changed:

He is always more tired in the mornings. He

goes to bed very early in the evenings and he

sleeps very late in the mornings.

Difficulties in finding the way

A contradictory picture emerged when the wives

described their feelings and experiences of their

husbands’ problems in finding the way. On the one

hand, both Anna and Eva talked about the difficulties

they found that their husbands had in deciding which

turn to take when they were out walking. They also

told about incidents when their husbands had been

gone for hours and were found only after the police

had been notified. On the other hand, both men took

outdoor walks on their own almost daily.

Anders said that he was a little insecure when taking

a walk on his own, although he made the long walk

without company to the day care center and back

home three times a week. He said:

It’s not advisable nowadays to let me take

walks on my own.

It was notable that during the participant observa-

tion of Anders walking to the day care center, no such

insecurity was evident. The route led through city

blocks, over open green spaces, parking lots, and

streets crowded with traffic. During the walk, Anders

explained that he had learned the way some years ago

and thus had no difficulty in finding his way. He did

not worry about getting lost during these walks.

Field note:

He shows me the way he usually walks and we

start walking. He carefully looks out for cars at

crossings and reminds me to be careful. In the

blocks near the day care center there are houses

being restored, and it is therefore difficult to

pass on the pavement. He suggests that we cross

the street. Anders does not seem to be disturbed

by this altered route, and he continues in full

control on his way to the day care center.

Erik said that he was good at finding his way. He

could not remember being lost, except once when he

had taken a ‘‘wrong turn.’’ He considered this situation

to have been accidental:

I go out walking in the woods and all goes well.

I recognize every piece of wood on the track that

I follow. I have never lost my way there. y

But once I got a bit lost, though it turned out

okay too. I took a taxi.

Eva described Erik’s ability to orientate himself in a

different way. She talked about his difficulties in

knowing which way to choose, but she did not

mention any worries about Erik’s long daily walks on

his own. She said:

It’s finding the way that is most difficult for

him. The spatial part. He doesn’t know where

we are heading when we are out somewhere. He

can go in any direction.

The first participant observation on Erik was made

in connection with one of his long daily walks. We

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walked for about an hour and took the route that Erik

usually took with his dog at least once a day. At one

place, Erik spontaneously pointed out a path and said

that he had once ‘‘got a bit lost’’ there. He said that he

very quickly realised it and explained how he had

walked to get on the right path again. He spoke of this

in a matter-of-fact manner, and there was no

indication that he worried that it might happen again.

Field note:

Our walk does not follow a simple route, but we

walk on both wide and narrow paths, over

meadows and in the woods. Erik walks briskly

all the time and does not hesitate when choosing

which path to take.

Peculiar behavior

Both Eva and Anna talked about behaviors of their

husbands that they thought were unusual and that had

begun after the AD diagnosis. Anna mentioned several

situations in which her husband had behaved in a way

that she considered peculiar and incomprehensible.

She described this as follows:

One thing is very strange. If, for instance, I put

the vacuum cleaner in the middle of the floor,

he doesn’t see it if he doesn’t expect it to be

there. The other day a stool was in the middle of

the floor, and he walked straight into it. I don’t

know why he does things like that. He can walk

straight into a lamppost, for example. He did so

the other day and his vision is perfect! It seems

as if he is totally occupied with just walking. As

if he cannot absorb information from the sur-

roundings. I don’t know. I think he behaves

strangely. I don’t understand it.

Anders also talked about some remarkable events,

but did not express any explicit worry:

Sometimes when I am walking, especially when

I am going round a corner and have to turn my

whole body, then suddenly I can find myself

completely out in the periphery.

Eva reported how Erik had changed his behavior in

many ways and performed daily activities differently

than he had done earlier. She talked about her feelings

as follows:

The worst thing is his restlessness. He clears the

table before we have eatenyHe is often in the

way. It is as if he has no idea of where he should

be. He can put things in the middle of the

doorway too.

Altered walking ability

Neither Eva nor Erik thought that Erik’s ability to walk

had declined since he became ill. This was confirmed

during the participant observations, where a picture

emerged of a man who had no difficulties in walking

briskly, running uphill, or riding his bike. Anna, on the

other hand, described Anders’s walking abilities as

having deteriorated in many ways. Anders’s own

picture of his walking ability was in accordance with

that reported by his wife and was partly confirmed

during the observations. Anders said:

My balance is not very good, sometimes I

stagger a little. I also fall sometimes. There is a

constant deterioration. Never the other way.

My whole mechanism is affected.

Adaptation strategies

The findings indicate that adaptive measures had

permeated the lives of the two wives since their

husbands had become affected by AD. They fre-

quently talked about changes in daily routines in

attempts to enable their husbands to fill their days with

meaningful activities, such as regular outdoor walks.

The adaptation strategies were practical, as well as

mental. The two wives also described how emotionally

difficult it was for them to observe and cope with

changes in their husbands’ abilities and behaviors.

Practical strategies and altered habits

Anders spoke about the different ways in which he

tried to make up for his difficulties in being physically

active. He described the strategy he used during his

outdoor walks:

I lose energy but then I have learnt to slow

down my pace and sort of start again.

Anna’s life had changed considerably since her

husband fell ill with AD, as she had to initiate all

activities for Anders. Moreover, because of his

impaired balance and difficulties in finding his way

she had to use practical strategies to make it possible

for Anders to be physically active. She said:

If I have no time to go out, if I have booked the

laundry-room, he goes by himself, but he just

takes a walk close to home. We have agreed

that half an hour is okay.

Erik did not experience any difficulties with his

balance or fitness. But he mentioned how he tried to

use regular routines to structure his days. He used

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almost the same routines day after day. He liked that,

and did not seem to find the routines boring:

Well, you have your routines and they are fun!

Erik took long daily walks, and apart from enjoying

the positive experiences of outdoor life and the

interaction with his dog, he mentioned that he used

these walks strategically to counteract his morning

fatigue. He also said that he did not know what else he

would do if he did not take the dog for a walk.

After an incident when Erik got lost for several

hours on a cold winter day, he and his wife developed

strategies for keeping in touch. Both mentioned that

they felt safe when they kept in touch by using their

cell phones. During the participant observations, Erik

contacted his wife by cell phone on several occasions to

tell her where he was and what he was going to do, etc.

It appeared as if the cell phones made the couple feel

secure when Erik went for long daily walks on his own.

Erik stated:

Then I have my cell phone. It gives me security

if anything should happen. I could hurt myself

or something. Eva leaves her phone switched on

all the time, so that we can get in touch with

each other.

Erik used to drive his car for doing errands, but

because of his illness he and his wife had decided that

he should restrict his driving. Eva said:

He drives the car, but always on the same

route. We try to play it safe.

Mental strategies

A common attitude of both the men and their wives

was to take life as it came and not to worry in advance.

Possible future problems and difficulties would have to

be dealt with when they arose. Anna described this by

saying:

I take things day by day, I know that he is

getting worse. It’s a one-way street.

Anders’s humble attitude, saying that he was still

fortunate despite his severe illness and forced changes,

became evident in his description:

I have no pain. That is good. I think this is an

incredibly gentle way to end one’s life...But

I miss tennis. I have to have something to do and

I fill my day. But this happens automatically

because you can’t lie down and sleep forever.

Erik expressed no negative thoughts or feelings

about being forced to change his life. His attitude

seemed to be that he was content with his life as

it was:

You mustn’t complain too much. I suppose

I have all I want.y I have not planned to stop

taking walks—not yet anyhow. One just has to

see what happens. What I mean is that there is

no need to worry in advance.

Eva described how she tried not to notice changes

due to the illness:

I suppress a lot, tend not to notice things.

I don’t want to see.

She also believed that Erik suppressed difficulties

caused by the disease, but speculated that he had to do

so in order to feel good. In line with this, Erik

remarked:

I don’t like driving into town. It is chaotic to

drive there. And I have nothing to do there.

However, it was evident that the wives had made

adjustments in their daily lives to try to make life

meaningful for their husbands now that they had

developed AD. Sometimes they both appeared to find

this difficult and frustrating. For example, Eva said:

Sometimes when I think he is in my way I put

my hands on him and move him. You might

think that knowing he is ill would make it easier

to resist the temptation to point things out to him,

but it is not easy when you have to live with it.

Anna also talked about frustrations:

It takes an incredible amount of time to adjust to

his illness. I don’t always have time to go out

walking with him both in the mornings and in

the afternoons, just walk. But I do, and he comes

alongyI am not anxious that he might fall. It

wouldn’t work if I thought like that. If I did so,

I wouldn’t dare to let him walk on his own.

Anna also described the challenge of finding

meaningful and positive activities for her husband:

What I look for, what I always think about is,

what could amuse him?

DISCUSSION

The present findings indicate that physical activity in

the form of outdoor walks may play an important part

in the everyday life of people with mild AD, by

improving their well-being and health, and by creating

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meaningful routines. In addition, despite experienced

barriers to physical activity, such as tiredness, difficulty

in finding the way and ‘‘peculiar behavior,’’ the

findings also indicate that significant others may be

willing to make considerable adjustments in their daily

lives to enable their partners with AD to be physically

active, especially to take regular walks. The current

findings may thus improve the understanding of

experiences related to everyday physical activity among

people with AD in early stages and their significant

others.

Physical activity as health reinforcement

In the two men with AD in the current study,

enjoyment of nature, body movement, positive atti-

tudes toward physical activity and—in one of them—

also the company of a dog, seemed to be the strongest

motives for taking regular walks. Both men now gave

priority to outdoor walks over other, previous physical

activities such as tennis, cycling, and dancing. These

findings are in agreement with a report that older

people, irrespective of their level of physical function-

ing, undergoing geriatric rehabilitation strongly

emphasize the ability to go out of doors as being

important for their life satisfaction (Aberg, 2008;

Aberg et al, 2005). It has been proposed that in

healthy people the reason for the positive experience of

going out of doors is that the solitude in natural

surroundings (e.g., when walking in the woods)

provides relaxation as well as relief from social

expectations and stress (Daun and Teeland, 1996;

Korpela, Hartig, Kaiser, and Fuhrer, 2001). Compari-

son has been made between the feeling of outdoor

freedom when walking in the woods and the comfort-

able feeling some people experience when in the

company of a dog (Daun and Teeland, 1996).

In previous studies people recently diagnosed with

AD have reported feelings of insecurity and anxiety

concerning social embarrassment (Husband, 2000;

Phinney, 1998). This anxiety resulted in withdrawal

from social contacts and a more restricted life.

Comparatively, the present findings indicate that the

two participating men experienced outdoor walking as

relaxing and as being associated with a low level of

social stress. This could be one reason why this activity

had become of greater importance in everyday life

since they had become affected by AD.

In the present study the participants expressed the

opinion that regular physical activities, at an

appropriate level, are good for the body and soul.

These thoughts seemed to partly explain the two

participant men’s regular walks, which unexpectedly

had become more frequent since they had become

affected by AD. Moreover, the significant others also

noticed that their spouses benefited from outdoor

walks; for example, the walks seemed to make the men

calm and content. Their experiences are in line with

previous findings, which have shown that physical

activity, such as outdoor walks, not only improves

physical health but may have positive effects on mood

and behavior in people with dementia (Eggermont,

2006; Heyn et al, 2004; Williams and Tappen, 2007).

Presumably, the wives therefore supported outdoor

walks and made extensive adaptations to facilitate this

activity, despite some experienced barriers.

Adjustment to situations, as described in previous

paragraphs, can be discussed in the framework of the

Continuity Theory (Atchley, 1989; Atchley, 1999),

which concerns the way in which middle-aged and

older people develop and adjust to life changes.

Atchley (1989, 1999) stated that during the aging

process, people adapt by preserving a sense of

continuity in internal and external structures. Hence,

continuity of both ideas and lifestyle is of key

importance when people develop psychologically and

socially as they age. Despite changes in health and

social circumstances, people strive to establish an

external life situation that supports continuity of their

internal ideas of life. In line with this, in previous

studies people with AD have expressed an ambition to

stay ‘‘normal’’ despite impacts of dementia (Menne

and Kinney, 2002; Phinney, 1998). Typical everyday

activities that had been taken for granted before the

illness seemed to assume a greater significance as the

person with dementia strove to maintain some level of

continuity with their past activities and lifestyle. Such

adaptation was also noted in the present study.

One of the participating men (Anders) had been

fairly physically active on a regular basis during his life,

but the other man (Erik) had only carried out physical

activities intermittently. Now, since they had become

affected by AD, outdoor walks had become an

important part of their daily routines. Walks seemed

to be an activity that they were able to manage without

many perceived limitations related to the AD

diagnosis. The significant others noted their

husbands’ sense of well-being when walking and

hence supported them in this activity. It is presumed

that the participants tried to keep up continuity both

with their previous lifestyle and with activities linked to

living a ‘‘normal life,’’ by carrying out physical

activities that strengthened feelings of health and

independence.

In addition, public health recommendations concern-

ing physical activities emphasize that taking outdoor

walks, for example, not only is a ‘‘common activity’’ but

is an activity that people in general should aim at doing

regularly (Nelson et al, 2007; Yrkesforeningar for fysisk

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aktivitet, 2008). This public advice is also in line with

the attitudes expressed by the participants in the current

study and probably reinforced the wives’ aspirations to

support their husbands in being physically active.

Correspondingly, daily activities have been shown to

constitute part of an ongoing process of self-expression,

which through interaction with the environment

maintains continuity of the self and creates satisfaction

and meaning in the life of older people with frail health

(Aberg et al, 2005). Moreover, significant others of

these older persons shared their opinion that continuity

of self-expression through activity is important for

preservation of a positive self-image. This was also

considered by the significant others as vital for the

interrelationship between the older people and them-

selves, because they felt that maintenance of habitual

activities strengthened the recognition of the care

recipient as her or his old familiar self (Aberg et al,

2004). In agreement of the above findings, ‘‘continuity of

the self’’ has been shown to be a key concept relating to

the views of significant others on factors of importance

for the life satisfaction of older care recipients (Aberg

et al, 2004).

These reports confirm findings by Kihlgren,

Hallgren, Norberg, and Karlsson (1994), establishing

that people with dementia benefit from care that

involves support of preserved abilities and other

positive aspects of the person. One conclusion drawn

from that study was that care of people with dementia

should emphasize activities in which the person is still

able to engage. Thus, a strategy for persons with AD to

reduce feelings of ill effects may be to engage in

activities that are experienced as having a low level of

social stress but can symbolize a ‘‘normal’’ healthy

lifestyle (e.g., taking regular outdoor walks). Such

an approach may reinforce the person’s experience of

well-being and health, as well as the well-being of

his or her significant others, by strengthening their

interrelationship.

Barriers to physical activity and adaptationstrategies

The present findings revealed that AD led to barriers

to physical activity. Furthermore, the need for adapta-

tion seemed to be a problem, mainly for the significant

others. Typically, the participant wives talked more

about barriers to physical activity and the need for

adaptation than did their husbands. The adaptations

made by the two men seemed to have been more

subconscious.

However, all four participants mentioned tiredness

as an important negative factor, because it influenced

the men’s ability to be physically active.

Tiredness in AD may be a result of various factors,

such as disturbances of the sleep-wake cycle, of

executive function, and/or of behavior (inactivity),

which are all common symptoms in early stages of

AD (Goetz, 2007; SBU, The Swedish Council on

Technology Assessment in Health Care, 2008).

Tiredness could also be a result of deprived stimula-

tion or of depression, but neither of the participants

with AD in the current study mentioned any feelings of

monotony or depression. Moreover, it is conceivable

that an impairment of the cerebral ability to integrate

and process sensory information in AD might result

in a need to pay more attention when performing

activities and socializing in daily life. This may lead to

mental fatigue in the persons with AD and increase

their need for rest and sleep. This is in line with

findings from several studies showing that the ability to

walk during performance of a cognitive task is affected

in people with mild AD compared to that in persons

with no cognitive impairement (Camicioli, Howieson,

Lehman, and Kaye, 1997; Pettersson, Engardt, and

Wahlund, 2002; Pettersson, Olsson, and Wahlund,

2005; Sheridan, Solomont, Kowall, and Hausdorff,

2003). Still, tiredness has not been well described

in terms of how it is experienced by the persons

concerned. However, significant others often refer to

the strain of seeing a formerly active person become

passive and inactive.

Another barrier to physical activity related to AD

that emerged in the present study was failure to

observe objects in the surroundings and to move the

body in a well-adjusted manner. The descriptions of

these phenomena by the significant others indicated

that this apparently unusual behavior of the two men

with AD affected their wives strongly, as they did not

understand why their husbands acted as they did in

certain situations. The described phenomena might be

symptoms of impaired perceptual functions, making it

difficult for people with AD to interpret impressions

from the environment (Goetz, 2007; SBU, The

Swedish Council on Technology Assessment in

Health Care, 2008), which might result in problems

with attention and visual-spatial orientation, for

example, as described by the participants.

One pattern that emerged in the present study

indicated a contradiction between the way in which the

significant others described their husbands’ difficulties

in finding their way around and the men’s habits in

performing physical activities in daily life. According

to the wives’ descriptions, it seemed at first almost

hazardous to let the two men do things outdoors by

themselves, despite some security precautions such as

use of the cell phones (Erik). The wives spoke about

their husbands’ difficulty in finding the way, and both

of them vividly talked about incidents when their

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husbands had got lost for several hours. Nevertheless,

the two men took long walks regularly on their own,

and the wives did not mention any concern about this.

The apparently contradictory attitudes of the wives

may be interpreted as a strong ambition to see their

husbands as independent and as physically active as

they used to be before becoming ill (i.e., to maintain

continuity of ideas, lifestyle, and ‘‘the self ’’) (Aberg

et al, 2004; Atchley, 1989; Atchley, 1999). This

motivation was obviously so strong that the wives

were even prepared to take the risk of their husbands

getting lost. Another aspect regarding the wide

variation in the narratives in the present study

regarding the abilities of the two men to find their

way may be in line with a report by Kiyak, Teri, and

Borson (1994). In their study it was found that

caregivers tended to focus on negative factors during

an interview to illustrate problems and deterioration,

probably reflecting the increased burden of caring for

a family member with dementia. Persons with AD, on

the other hand, tended to estimate their ability higher

than did their caregivers by focusing on what they

considered to function fairly normally.

Thus, in mild AD cognitive impairments can cause

a wide range of difficulties in daily life that affect

the ability to be physically active. The consequences of

these cognitive impairments can be difficult to compre-

hend and handle for, especially, the significant others

and might need to be explained to them by health care

professionals.

To sum up, the everyday life of the men affected

by AD consisted of similar routines day after day.

However, their outdoor walks were described as

providing an important, appreciated, and meaningful

part of the men’s daily life and appeared to improve

their health and well-being. To make these routines

possible, both practical and mental adjustments were

made by the significant others, whereas the men with

AD mainly used mental adjustment strategies to cope

with changes caused by AD. The two men described

mental adjustments that have similarities to two of the

strategies reported from a study of life at the age of 92,

where old, nondemented persons were interviewed

(Agren, 1998). One of these strategies was that the

older persons tried not to think about the future and

what might happen to their health and life situation,

but instead strove to live day by day. The other strategy

implied letting go of a previously enjoyed activity and

replacing it with a new one when life changed (i.e.,

preserving a sense of continuity in internal and exter-

nal structures) (Atchley, 1989; Atchley, 1999). Along

with these strategies, the adaptation and development

by continuity described previously (Aberg et al, 2004;

Atchley, 1989; Atchley, 1999) might have contributed

to the fact that the men with AD in the present study

expressed contentment regarding their daily routines

and abilities. It also has to be considered, however,

that during the course of AD a gradual deterioration

of insight can occur. This may influence the afflicted

person’s perception of his or her actual physical

capacity and level of activity (Goetz, 2007; SBU,

The Swedish Council on Technology Assessment in

Health Care, 2008).

Obviously, personal experiences of health aspects in

AD do not reflect dysfunction in an objective way. The

present findings may be discussed on the basis of the

ideas of Ueda and Okawa (2003) regarding health

aspects as described in ICF (WHO, 2001). They point

out that the ICF aspects of health, namely, anatomical

structure and body function, activity and participation

describe the objective world and objective dimensions

of human life. To get an overall picture of a person’s

health status, that person’s own experiences of differ-

ent aspects of health must be considered. According to

Ueda and Okawa (2003), these subjective health

aspects, which are lacking in ICF, could be defined

as unique combinations of the experienced illness and

positive, often unconscious experiences of psycho-

logical adjustment to overcome the negative con-

sequences of impaired health. This perspective is well

confirmed in the present study. Our findings indicate

that people with AD in early stages can experience

good health in daily life despite the functional

limitation caused by AD. However, significant others

have an important role in making practical arrange-

ments to enable the persons with AD to have a

pleasant everyday life.

Methodological considerations andlimitations

The present study has some limitations. The findings

are based on a case study and thus cannot be

generalized to all people with AD. The participants

were selected in that they were all married, the afflicted

persons were men, and the men had similar cognitive

function. The participants also showed positive atti-

tudes toward physical activity. Thus, a larger and more

varied study group would have allowed more variation

and depth in the findings. On the other hand, the

present findings reflect phenomena that are valid in

our particular participants.

One of the benefits of the qualitative approach used

here is that it had the potential to provide a deep

understanding of how the included subjects experienced

the afflicted person’s ability to be physically active.

The use of such methods also enabled insight in how

the participants perceived the importance of physical

activities in daily life. To give the study rigor and

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integrity, a number of measures were taken during the

entire research process, in accordance with procedures

described in the literature (Braun and Clarke, 2006;

Polit and Beck, 2008). For instance, multiple triangu-

lations, including person, time, method, and space

triangulation were used during data collection. Repeated

interviews were conducted with each of the participating

men to obtain clarifications and to elucidate the same

aspects several times. This technique was chosen to

achieve informal members checking (Polit and Beck,

2008) with the subjects with AD, despite the language

difficulties and problems in expressing oneself as often

occurs in AD. The statements made by the men with

AD might appear relatively short, but nevertheless they

are considered by the authors to reflect the personal

experiences and feelings related to physical activity.

During the month of data collection from each couple,

conditions were established to gain the participants’

trust in obtaining a detailed description of their

experiences regarding physical activity. Furthermore,

the same person (YC) did all the data collection,

transcribed the interviews verbatim and the field notes

into written text, and was able to get a balanced and

accurate picture of the research field. Apart from the

time when data were being collected, YC did not have

any connection with the participants during the present

study. In addition, during the data collection, data

analysis, and interpretation procedure, repeated peer

debriefings (Polit and Beck, 2008) were held between

the authors to explore various aspects of the data

analysis and interpretations. The two authors’ different

perspectives and experiences from both patients with

AD and qualitative research deepened the analysis and

interpretations. Despite the limitations described above,

the findings may provide a valuable insight into the

way people with mild AD and their significant others

can experience the impact of AD and illustrate the

important role of physical activity in the early stages of

AD. This may be a starting point for a more extended

exploration that could elucidate additional aspects of the

role played by regular physical activity in mild AD, for

example, in the prevention of physical decline and falls

and in improvement of well-being and health.

CONCLUSION AND PRACTICALAPPLICATION

The present findings indicate that in persons with AD

regular physical activities such as outdoor walks may

play an important part in everyday life by creating

meaningful routines and by improving well-being

and perceived health. In addition, despite barriers to

physical activity, the findings suggest that significant

others may be positive toward making adjustments

in everyday life to support their partner’s ability to

perform regular physical activities. On the basis of

these findings, it might be speculated that a new

approach to rehabilitation focusing on promotion of

physical activities such as outdoor walks should be

considered for persons with mild AD. The present

findings may also imply that special attention, in this

respect, should be paid on single persons with AD in

the early stages, living alone, because support may be

needed for encouragement, security, and problem

solving in specific situations.

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APPENDIX A

The guide for use during the interviews

The aim is to enable and encourage the participant to narrate freely concerning the main topic and related issues. The same areas are

highlighted on several occasions during the interview to obtain clarifications and elucidate different aspects of the topics studied.

Opening question addressed to the person with AD: What do you think about your ability to move about and be physically active now,

compared with the time before you had problems with your memory?

Opening question addressed to the significant other: What do you think about your husband’s/ wife’s ability to move about and be physically

active now, compared with the time before he/ she developed problems with his/her memory?

Key issues:

Experiences of performing physical activities nowadays; examples of areas to focus on are hindrances to and facilitators of physical activity,

need for support, motivations, feelings, strategies, need for social contacts, and company.

An ordinary day; examples to focus on are the time of getting up/going to bed, routines, need for rest or sleep, physical activities during

the day, much-enjoyed activities.

Habits regarding physical activities; examples of areas to focus on are habits related to physical activities nowadays and in the past, and

feelings related to the current habits.

Importance of being physically active in daily life; examples of areas to focus on, if appropriate and relevant, are attitudes and perceptions

related to physical activities nowadays and in the past, prioritizing those in daily life.

The interview is concluded by asking the participant if there is anything they would like to add or stress, regarding the subject in

question.

APPENDIX B

The guide for use during participant observations

The aim of the participant observation is to obtain a more detailed picture of the ability of the participant with AD to perform physical

activities in everyday life. Appropriate physical activities to observe are activities beyond activities of daily living that the participant

performs regularly, at least once a week. Suitable times are chosen for conducting participant observations in collaboration with the

participant with AD and the significant other.

It is important that the participant with AD (or the significant other if that is the couple’s normal routine), initiates the physical activities

during the participant observations. The researcher shall make efforts to maintain a personal yet expectant attitude so as not to

influence the situation more than necessary.

Examples of areas to observe, if appropriate and relevant, are: who initiates the physical activity, need for support to perform the activity, signs

of insecurity or security when performing physical activities, expressed feelings and attitudes related to physical activities, observed hindrances to

or facilitators of physical activity, way of moving about.

Observation field notes are taken during the participant observations and summarized afterwards in a written text that describes the

observed event in a concrete manner.

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