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Western University Western University
Scholarship@Western Scholarship@Western
Electronic Thesis and Dissertation Repository
9-22-2016 12:00 AM
The Lived Palliative Care Experiences of Community-Dwelling The Lived Palliative Care Experiences of Community-Dwelling
Older Adults with Dementia in South Western Ontario Older Adults with Dementia in South Western Ontario
Kristina M. Kokorelias The University of Western Ontario
Supervisor
Dr. Marita Kloseck
The University of Western Ontario
Graduate Program in Health and Rehabilitation Sciences
A thesis submitted in partial fulfillment of the requirements for the degree in Master of Science
© Kristina M. Kokorelias 2016
Follow this and additional works at: https://ir.lib.uwo.ca/etd
Part of the Other Public Health Commons
Recommended Citation Recommended Citation Kokorelias, Kristina M., "The Lived Palliative Care Experiences of Community-Dwelling Older Adults with Dementia in South Western Ontario" (2016). Electronic Thesis and Dissertation Repository. 4179. https://ir.lib.uwo.ca/etd/4179
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ii
ABSTRACT
Palliative care is often suggested for individuals with dementia, yet there remains great
uncertainty surrounding best delivery of care to individuals wishing to receive this care at
home. The aim of this phenomenological study was to understand the experiences of both
individuals with dementia who receive palliative care in the community, and their
informal family caregivers. Hermeneutic thematic analysis of semi-structured interviews
from ten participant dyads revealed key themes. The themes for older adults with
dementia were: belonging at home and acceptance of terminal illness. Themes for
informal caregivers were: impact of dementia, double strain and home as a source of
control over care. Themes across dyads were: honouring wishes, fear of hospitalization
and uncertainty. This study provides a better understanding of how community-dwelling
older adults and their informal care providers experience palliative care while also
managing dementia. Implications for community-based palliative care practice in South-
Western Ontario are discussed.
Keywords: aging, community-dwelling, dementia, end-of-life, hermeneutic
phenomenology, home-care, palliative care.
iii
ACKNOWLEDGEMENTS My first debt of gratitude must go to my supervisor, Dr. Marita Kloseck, for her advice
and support during my Master’s thesis development and writing. I would like to thank her
for encouraging and helping me to shape my own interest and ideas and allowing me to
work with the project I proposed. Her insights and feedback greatly contributed to my
academic growth.
I wish to thank my thesis advisory committee members, Drs. Deborah Fitzsimmons and
Marie Savundranyagam for refining my research skills with their constructive comments,
guidance and sound advice.
Thank you to Dr. Amanda Ali for her mentorship, and for showing me by example what
it takes to be a successful researcher.
Staff members of the South West Community Care Access Centre and the nursing staff at
the South West branches of CarePartners also deserve my sincerest thanks, as I could not
complete my work without their invaluable friendly and ongoing assistance.
This project could not have been completed without my tribe. My mother, Tess, for
reminding me to never lose my ambition. My father, Greg for sacrificing so much over
the years so that I can do all of what I love to do and for being the one person I will
always be able to depend on most. My sister, Julia, for her excellent advice on grammar
and for at least pretending to care about my ‘thematic analysis’. My baby cousins, Noah
and Sarah, for motivating me to lead by example. My uncles John, Angelo and Nick for
for always knowing when to ask and when not to ask about my thesis progress. To my
friends and labmates who made graduate school about so much more than just writing a
thesis. To Flora, for your unfaltering support and always being only a phone call away.
To Amy, for the endless hours of listening to me mull through ideas, practical advice and
daily encouragement. To Sandra, for always having the perfect answer at 2pm or 2am.
And to my grandfather Elias, for providing me with the security of knowing that no
matter how long or stressful the nights at my desk were, I’d get to wake up and call you
iv
and in under thirty-seconds be reminded that I will forever be the luckiest girl in the
world.
Lastly, I owe a very special amount of gratitude to everyone who participated in this
study. They shared their precious time and provided me with many insights. Each of you
has provided me with a special understanding of the breadth of human experience and
suffering. Most of all, thank you for reminding me that regardless of age or illness, we all
have the power to activate something in others – something good and noble.
v
DEDICATION
To my grandmother for continuously giving me just what I need, for reminding me that I
am always fiercely protected and loved and for instilling in me the belief that we should
always be brave enough to believe. Thank you for the magic.
vi
TABLE OF CONTENTS
ABSTRACT ……………………………………………………………………………....ii
ACKNOWLEDGEMENTS ……………………………………………………….……..iii
DEDICATION ………………………………………………………...………………….v
TABLE OF CONTENT…………………………………………………………………..vi
LIST OF FIGURES.……………………………………………………………….…......ix
LIST OF APPENDICES………………………………………………………………….x
CHAPTER 1: INTRODUCTION....……………………………………….. …………….1
1.1 Background and Significance ………………………………….........…....…..1
1.2 Study Purpose………………………………….........….............................…..4
1.3 Research Questions ………………………………….........…....................…..4
CHAPTER 2: LITERATURE REVIEW....…………………….………….. …………….5
2.1 Community-based Palliative Care Promotion …………...…….........…....…..5
2.2 Dementia Care………………………………………..…...……………...……7
2.3 Dementia Care in the Community: Impact on Caregivers…………………...10
2.4 Palliative Care for Dementia in the Community……………………………..15
2.4.1 Pain Management……………………………………….………..20
2.4.2 Psychosocial Needs………………………………………………22
2.4.3 Spiritual Needs…………………………………………………...26
2.5 The Control Theory of Aging………………………………………………..27
2.6 Conclusions and Guidelines for Future Practice and Research …………..…29
2.7 Study Rationale and Objectives……………………………………………...30
2.8 The Present Study ……………………………………………………………31
2.8.1 Study Purpose……………………………………………………31
2.8.2 Research Questions………………………………………………31
CHAPTER 3: METHODOLOGY....…………………….………….. ………………….32
3.1 Phenomenology …………...…….........…....……………………………….32
3.1.1 Why Hermetic Phenomenology?....................................................33
3.1.2 Key Concepts in Heideggerian Hermeneutic Phenomenology…..35
3.2 Paradigm, Ontology and Epistemology ………...……………………….38
vii
3.3 Quality Criteria in Qualitative Research…………………………………38
3.3.1 Rigour ……………………………..……………………..38
3.3.2 Trustworthiness……………………………….……...…..39
3.4 Methods…………………………………………………………………..40
3.4.1 Sampling Strategy………………………………………..40
3.4.2 Recruitment ……………………………………………...40
3.4.3 Inclusion/Exclusion Criteria……………………………. 41
3.4.4 Ethical Considerations…………………………………...41
3.5 Data Collection…………………………………………………………..42
3.6 Data Analysis…………………………………………….………………45
3.6.1 Composite Analysis of the Text……………………..…...46
3.6.2 Discovery of Constitutive Patterns……………..………..47
3.7 Credibility of the Analysis……………………………………………….47
3.7.1 Comprehensiveness………………………………………48
3.7.2 Thoroughness…………………………..………………...48
3.7.3 Agreement………………………………………………..48
3.8 Situational Ethics………………………………………………………...48
3.9 Reporting………………………………………………………...……….49
3.10 Declaration of Self…………………….………...……………………...49
3.11 Conclusion……….…………………………………………...……...….50
CHAPTER 4: FINDINGS....…………………….………….. …………………………..52
4.1 Emergent Themes………………………………………………………..52
4.2 The Lived Experiences of The Older Adults with Dementia …….……..52
4.2.1 Belonging at Home…………………………………………53
4.2.2. Acceptance of Terminal Illness……………………………55
4.3 The Lived Experiences of The Informal Family Caregivers……………56
4.3.1 Impact of Dementia………………………………………...56
4.3.2 Double Strain……………………………………………….58
4.3.3 Home as a Source of Control over Care……………………61
4.4. Emergent Themes Across Dyads……………………………………….63
4.1.1 Honouring Wishes………………………………………….63
viii
4.1.2 Fear of Hospitalization……………………………………..64
4.1.3 Uncertainty ………………………………………………...65
4.5 Conclusion……..………………………………………………………..66
CHAPTER 5: DISCUSSION....…………………….………….. ………………...……..67
5.1 The Older Adult Participants’ Experiences……………………………...67
5.2 The Family Caregivers’ Experiences……………………………………70
5.3 The Combined Older Adult and Family Caregivers’ Experiences…...…75
5.4 Limitations of The Study……..…………………..……………………..77
5.5 Implications for Practice……..…………………..……………………...78
5.6 Future Research Recommendations……..…………………..……..........81
5.7 Conclusion…………………………………………………………...….82
REFERENCES....…………………….………….. ………………...……………...…...84
APPENDICES………………………………………………………………………….110
CURRICULUM VITAE………………………………………………………………..141
ix
LIST OF FIGURES
Figure 1: Palliative vs. End-of-life Care ………………….......………………………..…6
Figure 2: Dementia Progression Prioritization of Goals ………………….......…………19
Figure 3: The Hermeneutic Circle ……………………………..………………..……....37
x
LIST OF APPENDIXES
Appendix A: Telephone Script for Case Manager ………………….......……………...111
Appendix B: Letter of Information and Consent (Older Adult Participant) ……...……112
Appendix C: Letter of Information and Consent (Family Caregiver Participant)...……118
Appendix D: Ethics Approval Form……………………………..………..……............124
Appendix E: End-of-life Care Support Services……………………………..…………125
Appendix F: Semi Structured Interview Guide (Older Adult Participant) ……….……126
Appendix G: Semi Structured Interview Guide (Family Caregiver Participant) ………129
Appendix H: Socio-demographic Questionnaire……………………………….………131
Appendix I: Interpretive Summaries of Participants……………………………………133
Appendix J: Socio-Demographic Characteristics of Participants ……………..…….....138
Appendix K: Community-Based Palliative Care Service Use of Participants………….140
1
1 INTRODUCTION
1.1 Background and Significance
As Canada’s aging population continues to rise, so does the prevalence of dementia.
Over 747,000 Canadians are currently living with Alzheimer’s disease and other
dementias, and experts believe that number will increase to 1.4 million by 2031
(Alzheimer Society, 2013). Dementia has been defined as an irreversible neurological
condition, which causes progressive and irreversible decline of mental capabilities
(Mitchell, Kiely, & Hamel, 2004). Dementia often occurs in those age 65 or older
(Alzheimer Society, 2013; Mitchell, Kiely, & Hamel, 2004).
Dementia is a terminal illness, but many people with dementia do not necessarily die
from this disease. People with dementia often die due to other morbidities that co-exist
with the dementia diagnosis, such as cancer and heart disease (MacDonald & Cooper,
2007) or from complications associated with other medical conditions, such as
pneumonia acquired because of difficulty swallowing (World Health Organization,
2013). According to the World Health Organization (2013) the median age of survival for
an individual with Alzheimer’s disease (the most common form of dementia) is 7.1 years.
Persons with dementia typically have high levels of pain towards the end of their lives as
they often are unable to communicate the occurrence and severity of their pain to their
care providers (Torke et al., 2010). According to Craven and Wald (1975), “what people
need most when they are dying is relief from distressing symptoms of disease, the
security of a caring environment, sustained expert care, and assurance that they and their
families will not be abandoned” (p. 1816).
Health care professionals often suggest a palliative care approach for persons with
dementia, which involves focusing on the needs of the dying individual (Sampson, 2010)
and spares them burdensome, painful and often futile end-of-life interventions (Munn,
2012). Palliative care has been defined as a non-curative philosophy of care that aims to
improve the quality of life of persons and their families with life- threatening illness
through the prevention and relief of suffering, and treatment of pain and other symptoms
(WHO, 2013). Palliative care can be delivered in a variety of settings, including
hospitals, nursing homes, and in the community (the homes of the individual). The
palliative care philosophy uses a holistic approach which integrates the physical,
2
psychosocial and spiritual needs of a person to enhance the quality of life of terminally ill
individuals and includes the family, in order to help them cope with the patient’s illness
and in their own bereavement (WHO, 2013).
The distinctions between ‘palliative care’ and ‘end-of-life care’ are unclear within
Canadian policy literature. For the purpose of this thesis the author uses the term
‘palliative’ care to refer to a broader philosophy of care, with the focus being on
maximizing quality of life for the individual with terminal conditions whereas ‘end-of-
life’ care focuses on death management. These definitions are consistent with the
definitions provided by the World Health Organization (2013) and the Canadian Hospice
Palliative Care Association (2006).
Palliative care helps individuals die with dignity (WHO, 2013). Dignity at the end-of-
life occurs when individuals are capable of having control over their environment and
their care plans (Franklin, Ternestedt, & Nordenfelt, 2006). For the majority of older
adults, their preferred place of care is within their homes and communities (Canadian
Hospice Palliative Care Association, 2006; Stajduhar & Davies, 2005).
Due to the complex care needs of those with dementia, persons with late-stage
dementia are often unable to die in their place of choice (typically their own homes), due
to the lack of palliative care supports available for them (MacDonald & Cooper, 2007).
Dementia causes cognitive decline, which means that individuals with dementia most
often have complex care needs that require special home-care services (MacDonald &
Cooper, 2006). A shortage in palliative care resources has created limited access for
certain population groups, such as those with dementia, (Freeman, Heckman, Naus, &
Marston, 2013). As a result, approximately 70% of deaths in Canada occur in hospital,
despite the wishes of individuals (Canadian Hospice Palliative Care Association, 2010;
Freeman et al., 2013). While many studies suggest that palliative care is beneficial for
persons who have a dementia diagnosis (for example, Murtagh, Preston, & Higginson,
2004; Sampson, 2010; and Sampson, Ritchie, Lai, Raven, & Blanchard, 2005), little is
known about how family caregivers and health-care providers deliver person-centered
palliative care for community-dwelling older adults who have dementia. To date, much
attention has focused on palliative care in long-term care homes, yet very little work has
been conducted in the community regarding those with the same condition(s) (Goodman
3
et al., 2010). This is not surprising given the difficulty in predicting with accuracy the
time of potential death of an individual with dementia and the very small number of
individuals with dementia who have been able to spend their last years of life in the
community (Sampson, 2010). At present, a comprehensive understanding of community-
based palliative care delivery specific to the unique context of having a diagnosis of
dementia is notably lacking, especially in a Canadian context. What current community-
based palliative care delivery looks like from the perspective of older adults and their
care providers is not well understood.
For the few older adults with dementia able to receive palliative care at home, family
members are often the ones to take on significant caregiver roles (Hudson, Aranda, &
Kristjanson, 2004; Linderholm & Friedrichson, 2010). A Canadian study suggests that
approximately 90% of care to seniors is delivered by informal family caregivers (Smale
& Dupuis, 2004). Thus, supporting family caregivers is critical. Increased attention
should be placed on home care services and ways in which family caregivers can meet
the needs of those they are caring for in the community. Specifically, home-based
palliative care delivery has become an increasingly important area of study (Goodman et
al., 2010).
In conclusion, palliative care aims to relieve the patient's suffering and improve the
quality of living and dying (WHO, 2013). People with terminal conditions, including
dementia, need timely palliative care. The majority of literature on palliative care has
been conducted on people with oncological diagnoses, notwithstanding the fact that
Torke et al. (2010) found that of programs offering palliative care, 94% provided services
to a client with dementia. Given the increasing prevalence of those with dementia,
palliative care for terminally ill individuals with dementia is an extremely important
research area (Roger, 2006). While there has been considerable work done in the USA,
England, and Australia, there is no guidance on how to transfer this knowledge to our
Canadian health care system. There is very limited evidence-based literature which
Canadian governing bodies can use to guide the development of appropriate interventions
or services. Therefore, it is crucial that research is done in a Canadian context to identify
the requirements and current state of palliative care for those with dementia residing in
the community.
4
1.2 Study Purpose
The purpose of this study is to describe the lived experiences of individuals with
dementia who receive palliative care in the community due to other terminal conditions,
along with the experiences of their informal caregivers.
1.3 Research Questions
The following research questions had been devised to guide this study: How do
community-dwelling individuals with a terminal condition, in addition to dementia,
describe their experience of receiving palliative care? How do the participants’ informal
caregivers experience providing care to someone with dementia who also requires
palliative care?
5
2 LITERATURE REVIEW
2.1 Community-based Palliative Care Promotion
While initially intended to help individuals die from cancer, modern palliative care
now includes a variety of terminal illnesses (Canadian Hospice Palliative Care
Association, 2014). The most commonly accepted definition of palliative care comes
from the World Health Organization (Canadian Hospice Palliative Care Association,
2006):
… an approach that improves the quality of life of patients and their families
facing the problem associated with life-threatening illness, through the
prevention and relief of suffering by means of early identification and
impeccable assessment and treatment of pain and other problems, physical,
psychological and spiritual. (WHO, 2011, p.1).
Across Canada, different types of palliative care services are available including
community hospices, acute in-hospital palliative care, and long-term palliative care
(Hadad, 2008). Figure 1 illustrates the definition of palliative care in more detail.
Canadian evidence supports that most Canadians with a terminal condition would
prefer to die in their own home surrounded by their family and family members, yet
approximately 70% of Canadian deaths occur in hospital (Canadian Hospice Palliative
Care Association, 2006; Stajduhar & Davies, 2005). Older people perceive the presence
of friends and family and being at home as crucial for a good death (Gott, Seymour,
Bellamy, Clark, & Ahmedzai, 2004). Given the wishes of terminally ill individuals,
home-based palliative care has become a significant trend in Canada (Williams et al.,
2001). Palliative care is a holistic approach to care that incorporates elements of pain
management, psychosocial and spiritual care in order to improve the quality of life of
patients and their families facing a life-threatening illness (WHO, 2011).
6
Figure 1: Palliative Care versus End-of-life Care
Reprinted from The Ottawa Hospital (2014):
https://www.ottawahospital.on.ca/wps/portal/Base/TheHospital/ClinicalServices/DeptPgrmCS/Programs/Ca
ncerProgram/AboutTheCancerProgram/OurProgramsClinics/SupportiveAndPalliativeCare/WhatIsPalliative
Care
7
Home-based palliative care programs provide interdisciplinary care usually
encompassing palliative care physician specialists, nurses, personal support workers,
and/or other family physicians (Walshe et al., 2009). Community-based palliative care
services provided to people who die with, or of, dementia is associated with significant
reductions in hospital emergency department use in the last year of life (Rosenwax,
Spilsbury, Arendts, McNamara, & Semmens, 2015). This aligns with the wishes of
family caregivers and terminally ill persons (Rosenwax, et al., 2015). The ability for an
individual to die at home is dependent on the availability of community resources such as
health care providers, informal caregivers, and funding (Canadian Hospice Palliative
Care Association, 2006; Stajduhar & Davies, 2005). Only 16% to 30% of Canadians with
a terminal illness have access to or receive community-based palliative care services,
depending on where in the country they live (Canadian Institute of Health Information,
2007).
Due to the increased demand for palliative care services within the community,
governing policy bodies need to ensure that dying individuals and their families have
access to community-based palliative care (Matsui, 2010). A United Kingdom national
initiative known as the Gold Standards Framework aims to promote quality community
palliative care (King, Thomas, Martin, Bell, & Farrell, 2005). The Gold Standards
Framework aims to facilitate reliable and high quality community-based palliative care
through a set of guidelines, mechanisms and assessment tools aimed at helping health
care professionals and other clinicians in the earlier identification of terminally-ill older
adults who may need additional support (King et al. 2005). A qualitative study conducted
by King et al., (2005) examined the effectiveness of this framework during its first year
using nurses’ perspectives. Most participants in the study believed that the Gold
Standards Framework had strengthened their ability to deliver community palliative care
(King et al., 2005). No follow-up study was found.
2.2 Dementia Care
Dementia is a progressive syndrome that affects an individual’s memory, cognition,
communication, swallowing, essential bodily functions and activities of daily living
(Rentz, Krikorian, & Keys, 2005; World Health Organization, 2012). There are three
broad stages of dementia. These are referred to as the early, middle, and late stages
8
(Mayer, 2001). Many of the dementias are described as being progressive, meaning the
individual’s impairments become more severe at each stage of dementia (Mayer, 2001;
Cohen-Mansfield, 1996). In the early stages of dementia individuals experience
forgetfulness, slight difficulty concentrating, and difficulty finding the right words
(Reisberg, Ferris, de Leon, & Crook, 1982). The middle stages of dementia are marked
by a difficulty concentrating, decreased memory of recent events, difficulty socializing
and a greater need of assistance to complete their daily activities (DeLeon & Reisberg,
1999; Reisberg et al., 1982). In the late stages of dementia, individuals with the condition
require extensive assistance to carry out daily activities and have little memory of recent
events (DeLeon & Reisberg, 1999; Reisberg et al., 1982). Personality changes, such as
delusions (believing something to be true that is not), anxiety and/or agitation may occur
(DeLeon & Reisbery, 1999). Eventually, individuals in this stage lose their psychomotor
skills and ability to communicate DeLeon & Reisberg, 1999; Reisberg et al., 1982)
Despite being incurable, dementia has only recently received recognition for being a
terminal illness (Albinsson & Strang, 2002; Blasi, Hurley, & Volicer, 2002; Torke et al.,
2010). The disease trajectory of dementia is an unpredictable process (Sachs, Shega, &
Cox‐Hayley, 2004; Xie, Brayne, & Matthews, 2008). The end-stage of the illness varies
depending on the individual and can last for as short as three years (Boersma et al., 1999;
Lee & Chodosh, 2009) and as long as nine years (Klinkenberg et al., 2005; Lee &
Chodosh, 2009; Volicer, Hurley, & Blasi, 2003). An individual with dementia is more
likely to die from pneumonia, cardiac disease, or cerebrovascular disease than the
dementia itself (Gambassi et al., 1999). People with advanced stages of dementia are also
more likely to develop apraxia, dysphagia, and decreased mobile functioning that
increase the risk of infection, malnutrition and other possibly fatal outcomes
(Alzheimer’s Society, 2014; Barry, Parsons, Passmore, & Hughes, 2014; Cohen-
Mansfield & Creedon, 2002). Health care professionals and family caregivers find it
difficult to detect when someone with dementia is approaching the end-of-life (Aminoff,
& Adunsky, 2005; Connolly, Sampson, & Purandare, 2012; Evans, & Goodman, 2009).
This is due to the gradual loss of cognitive and physical functioning an individual with
dementia experiences, coupled with a protracted disease course which includes other
chronic conditions (Connolly, Sampson, & Purandare, 2012; Evans, & Goodman, 2009).
9
Persons in the later stages of dementia often require complete assistance with their
activities of daily living, have difficulties communicating their needs and may even be
mostly bedridden (Aaltonen et al., 2014; Cordner, Blass, Rabins, & Black, 2010). As
such, many individuals with later-stage dementia live in long-term care (Arcand et al.,
2009). Numerous studies suggest that care homes are ill-equipped to provide optimal
end-of-life care for those with dementia. For example, Ryan and colleagues (2012) found
that residents with dementia in long-term care facilitates receive very little care
interventions at the early stages of their illnesses but are given aggressive treatments
towards the end of their lives. Some of these interventions include cardiopulmonary
resuscitation (CPR), feeding tubes, and intravenous antibiotics (McCarthy, Addington-
Hall, & Altmann, 1997). Such interventions have been found to increase pain and
suffering in those with advanced dementia (McCarthy, Addington-Hall, & Altmann,
1997). These interventions are often the default action of healthcare practitioners
(McCarthy & Volicer, 2009; Meeussen et al., 2012).
Older adults with dementia wishing to die at home have been found to have greater
levels of pain than their nursing home counterparts (Mitchell, Morris, Park, & Fries,
2004). Shega and colleagues (2004; 2006) came to similar conclusions: persons with
dementia living in the community were at greater risk of untreated pain than persons
without dementia. Those with advanced dementia being cared for at home had less
functional disability, more behavioural problems, and more feeding tubes at their end-of-
life than those residing in nursing homes (Mitchell et al., 2004; 2009; Kuhn & Forrest,
2012; Livingston et al., 2012).
Studies have found that those with advanced dementia were less likely to have
advanced care directives limiting such aggressive interventions, in comparison to those
with other chronic conditions (Gandy, Roe, McClelland, & Ashton, 2011; Gessert,
Forbes, & Bern-Klug, 2001). An advance directive is a legal document by which an
individual records his/her wishes for future health care decisions in the event that he/she
becomes unable to make those decisions (Dresser, 2001). Advance directives exist
primarily to protect patients’ rights to refuse medical interventions at the end-of-life and
may request a palliative philosophy to care (Winzelberg, Hanson, & Tulsky, 2005). The
majority of individuals with dementia who do have an advanced care plan in place do not
10
have directions for care that limit aggressive interventions (Triplett et al., 2008).
Typically, prompts for discussions for end-of-life care for individuals with dementia only
occur after particular medical events that required aggressive interventions or changes to
financial status (Hirschman, Kapo, & Karlawish, 2008). A 2008 study by Sloan and
colleagues found no correlation between measures of pain and advanced care planning
for those dying with dementia within long-term care. The lack of advanced directives
does not address the issue of inadequate quality of life at the end-of-life for those with
dementia (Dening, Jones, & Sampson, 2011).
In the absence of advanced directives family members are often called to make the
end-of-life care decisions (Gessert, Forbers, & Bern-Klug, 2000). Family members agree
to more aggressive care for persons with dementia significantly more often than
cognitively intact older adults (Robinson et al., 2005). In a qualitative study conducted by
Caron, Griffith and Arcand (2005), the researchers found mixed results regarding the
quality of care family members felt their family members with advanced dementia
received while residing in long-term care. Some family members believed that the care
was adequate, whereas others found the care to be poor (Caron, Griffith, & Arcand,
2005). The majority of family caregivers receive little information on the anticipated
course of their family member’s illness or indicators of distress to help them better care
for their terminally ill family member (Cain, MacLean, & Sellick, 2004; King et al.,
2005). Due to insufficient information about dementia and poor communication with
health care practitioners, families feel ill-equipped to make end-of-life care decisions for
persons with advanced dementia (Ahroheim et al., 2000; Campbell, & Guzman, 2004;
Godwin, & Walters, 2009; Thuné-Boyle et al., 2010). Researchers have argued that if
family caregivers understood the clinical course of dementia and had realistic
expectations about the outcome of interventions, they would be less likely to advocate for
aggressive care measures (Peacock, 2013; Rurup et al., 2006a, b).
2.3 Dementia Care in the Community: Impact on Family Caregiver
Many older persons with advanced dementia receive their end-of-life care in long-term
care homes, but a large majority remain in the community with home care services and
family caregivers providing care (Davies et al., 2014; Forbes, Bern-Klug, & Gessert,
2000). This reflects the wishes of many older adults who prefer to stay at home near the
11
end-of-life (Abelson, Gold, Woodward, O’Connor, & Hutchinson, 2004; Canadian
Hospice Palliative Care Association, 2006). When persons with chronic conditions
choose to receive care at home, family members take on a significant role in caregiving
(Clemmer, Ward-Griffin, & Forbes, 2008). Indeed, caregivers play a critical role in all
stages of caring for someone with dementia (Rabins, 1998).
The care requirements of elderly individuals with end-stage dementia can be
particularly challenging for informal caregivers (Lawrence, Samsi, Murray, Harrai, &
Banerjee, 2011). Caregivers of individuals with dementia have been found to experience
higher levels of caregiver burden (Steadman, Tremont, & Davis, 2007) and suffer from
more negative health outcomes than those caring for cancer patients (Clipp, & George,
1993) and non-dementia caregivers (Pinquart, & Sorensen, 2004).
Very little is known about the caregiver burden experiences of caregivers of
individuals with dementia in Ontario (Smale & Dupuis, 2004). Caregiver burden refers to
the stressors of caregiving (Etters, Goodall, & Harrison, 2008). Objective caregiver
burden relates to the burden associated with the tasks required to care for the client
(Jones,1996). Subjective caregiver burden relates to the extent to which the caregiver
cares about performing these tasks (Jones,1996). Behavioural disturbances, impairments
related to activities of daily living, and cognitive decline have been found to increase the
objective burden of caregivers of individuals with dementia (Hughes et al., 2014;
Savundranayagam, Montgomery, & Kosloski, 2011; Wolfs et al., 2011). Behavioural
disturbances from persons with dementia are the most prominent predictive factors of
subjective caregiver burden for carers to persons with dementia (Etters, Goodall, &
Harrison, 2008). Studies have found that dementia-related behavioural problems, such as
aggression, have a greater impact on objective and subjective burden than cognitive or
functional impairment (Dunkin, & Anderson-Hanley, 1998). Objective burden increases
with the increasing severity of dementia (Etters, Goodall, & Harrison, 2008; Hughes et
al., 2014; Wolfs et al., 2011). Some literature reports that familial relationship ties are
also associated with increased objective and subjective burden (Annerstedt, Elmståhl,
Ingvad & Samuelsson, 2000; Etters, Goodall, & Harrison, 2008; Torti, Gwyther, Reed,
Friedman, & Schulman, 2004). Annerstedt and colleagues (2000) found that closer
kinship to the care receiver imposes a greater burden on family caregivers. Wolfs et al.
12
(2011) found that the relationship between the care recipient and the caregiver, gender of
the caregiver, and the comorbidity of the care recipient are not predictive of objective
burden.
Caregivers of individuals with dementia tend to report their health to be worse than
non-caregivers (Andren, & Elmståhl, 2008; Baumgarten et al., 1992, Etters, Goodall, &
Harrison, 2008). Many caregivers’ physical and mental health declines after beginning to
provide care, and those caring for persons with dementia are at a significantly greater risk
of morbidity (Acton, 2002). Vetter et al. (1999) found that caregivers of those with
vascular dementia experience a greater burden at the start of their disease, whereas
caregivers of persons with Alzheimer’s disease experience greater burden at the later
stages. Other studies suggest that caregivers of persons with early onset of dementia also
experience high levels of caregiver burden (Baldwin, 1994; Dunkin, & Anderson-Hanley,
1998; Razani et al., 2007). Hatada et al. (1999) suggest that caregiver burden may be
greater for caregivers at the early stages of their family member’s disease as they are “not
psychologically ready” for caring for an individual with dementia (p. 125). The
unpredictability of dementia increases frustration and anxiety for caregivers (Beach,
1994). An increased stress burden for caregivers, such as anxiety, was found to be
directly related to lower self-rated health (Savundranayagam, Montgomery, & Kosloski,
2011). Caregiver burden often increases over time for persons providing care at home
(Winslow, & Carter, 1999). As caregivers learn to adapt to their caregiving demands, the
burden may decrease (Almberg, Grafström, & Winblad, 1997). Increases in burden,
however, often leads individuals to place their relatives with dementia in an institution
(Hope, Keene, Gedling, Fairburn, & Jacoby, 1998; Potter, 1993; Savundranayagam,
Montgomery, & Kosloski, 2011; Pruchno, Michaels, & Postashnik, 1997). Caregiver
burden can continue even after the caregiver places his/her family member in a long-term
care facility (Riddick, Cohen-Mansfield, Fleshner, & Kraft, 1992; Smale & Dupuis,
2004; Tornatore, & Grant, 2002; Winslow, & Carter, 1999). This can be explained by the
concept of caregiver vigilance which refers to the continual oversight caregivers have
over their care recipients’ activities, even when not with them (Mahoney et al., 2003).
In comparison to caregivers of individuals without dementia, caregivers for persons
with dementia experienced a greater emotional burden (Birkel, 1987; Leinonen,
13
Korpisammal, Pulkkinen, & Pukuri, 2001). The communication difficulties and problem
behaviours of dementia care recipients have been reported to increase emotional burden
for caregivers (Fried, Bradley, O’Leary, & Byers, 2005; Kim, Chang, Rose, & Kim,
2012; Savundranayagam, Hummert, & Montgomery, 2005). The process of watching a
relative gradually deteriorate is also one of the most painful experiences for family
caregivers (Dupuis, 2002; Kim et al., 2012). This often leads to a phenomenon known as
ambiguous loss1 where family caregivers experience great emotional distress and grief
over their family member not being mentally or emotionally present in the same way as
before (Dupuis, 2002).
A handful of studies have also explored the experience of grief and other spiritual
needs as they relate to caregiving for a community-dwelling individual with dementia at
the end-of-life. Results from such studies highlight how the deeply personal relationship
to the care receiver and inadequate social supports influence the experience of grief for
family caregivers (Peacock, 2013; Walshe et al., 2009). To support family caregivers
with their bereavement, scholars have suggested implementing interventions early on in
the caregiving journey as a means to lessen grief after the death of a family member
(Sachs et al., 2004; Peacock, 2013). For example, Shega and Cox-Hayley (2004) share
that family caregivers can benefit greatly from the assistance and support a social worker
or local Alzheimer’s Society can provide. Nevertheless, the benefit of providing care for
a relative at home was found to exceed the issues related to grief (Lecouturier, Jacoby,
Bradshaw, Lovel, & Eccles, 1999). It is important to note that the majority of studies that
focused on the psychosocial and spiritual needs of terminally ill older adults residing in
the community and their informal caregivers were based upon conclusions drawn from
qualitative evidence, heavily influenced by researchers’ assumptions about the end-of-life
1 Ambiguous loss is defined as a type of loss and grief that occurs while an individual
with dementia is still physically present. People with dementia may experience feelings
of loss over their diagnosis and mourn as their own abilities gradually change. Caregivers
to persons with dementia grieve the progressive losses in the life of the person with
dementia and mourn the relationship that they had with the person with dementia prior to
his/her diagnosis (Dupuis, 2002).
14
experiences. This is problematic as it may not reflect the experiences of community-
dwelling terminally ill older adults and their informal family caregivers.
Caregivers for persons with dementia tend to withdraw from social engagement
opportunities and have limited social connections with peers (Meshefedjian, McCusker,
Bellavance, & Baumgarten, 1998; Johnson, & Troll, 1994). Due to social isolation,
caregivers to persons with dementia are more likely to report requiring more emotional
support from health care professionals in comparison to individuals with other illnesses
(Franks et al., 2000; Straw et al., 1999). Cain, MacLean and Sellick (2004) found that
health care providers typically focus their attention on the client, leaving the informal
caregiver with little support. Family caregivers of those with dementia residing in the
community found ‘family-centered’ care to be lacking (Clemmer et al., 2008) and often
feel exploited by the health care system (Luker, Austin, Caress, & Hallet, 2000;
Stajduhar, 2003). Caregivers’ unmet needs for emotional support are correlated with an
increase subjective and objective caregiver burden (Hughes et al., 2014). More social
support has been found to result in less depressive symptomology for caregivers of
individuals with dementia and lower perceived caregiver burden than those with less
support (Baumgarten et al., 1992; Clyburn, Stones, Hadjistavropoulos, & Tuokko, 2000).
Hughes et al., (2014) reason that targeted intervention programs that incorporate
emotional support for caregivers of individuals with dementia are required. For example,
support group attendance helps those caregivers to receive emotional support and acquire
effective coping skills (Kaye, & Applegate, 1993). Educational interventions are also
effective in providing caregivers with skills needed to manage the behavioural problems
of persons with dementia (Buckwalter et al., 1999; Chang, 1999) which may decrease the
depressive symptoms of caregivers (Buckwalter et al., 1999). Respite services may help
lower emotional stress and improve the caregiver-care receiver relationship
(Dziegielewski, & Ricks, 2000). Respite refers to a caregiver’s temporary rest
from caregiving duties. Zarit et al., (1998) found that caregivers using respite programs
report feelings over worry and strain.
Most of the literature on caregiver burden focuses on the emotional impacts of
caregivers of individuals with dementia (Etters, Goodall, & Harrison, 2008; Smale &
Dupuis, 2004; Pinquart, & Sörensen, 2007), but a few studies have explored the physical
15
effects of caregivers. Dementia-related behaviors such as aggression and agitation have
been found to create more physical stress on caregivers (Hope et al., 1998). Caregivers to
those with dementia are at an increased risk for developing hyperlipidemia,
hyperglycemia (Davies 1996; Matsumoto et al., 2007; Papastavrou et al., 2007) and a
compromised cellular immune system (Canfield, 2002; Davies 1996; Kiecolt-Glaser et al.
1995; Mills et al. 2004, Thomson et al. 2004). Increased rates of respiratory illness,
elevated blood pressure and slower wound healing is associated with impaired immune
function (King, Oka, & Young, 1994). Caregivers of individuals with dementia are less
likely to engage in health-promoting behaviours and self-care, such as exercise, than non-
caregivers (Fuller-Jonap, & Haley, 1995; Gallant, & Connell, 1997). Caregiver burden
has also been related to decreased caregiver employment rates and increased financial
strain that can lead to poverty risks for women (Aneshensel et al., 1995; Wakabayashi, &
Donato, 2006). A declining economic well-being has been found to be correlated to
poorer physical health (Wakabayashi, & Donato, 2006). The physical health effects may
persist even after the death of the person with dementia (Winslow, & Carter, 1999).
The caregiver burden faced by caregivers of individuals with dementia naturally
affects the health of the care recipient (Gainey, & Payne, 2006). Highly-stressed
caregivers have been found to provide lower quality of care to their care recipients
(Gainey, & Payne, 2006). Furthermore, a longitudinal study found that persons with
dementia living with highly-stressed caregivers had more behavioural problems, agitation
and a more rapid disease progression (Vitaliano, Young, Russo, Romano, & Magana-
Amato, 1993).
2.4 Palliative Care for Dementia in the Community
Given the inadequate support many older adults with dementia and their family
caregivers receive towards the end of the older adults’ lives, many scholars are now
recommending a palliative care approach. Palliative care provides patients with relief
from physical pain, as well as assistance with their psychosocial and spiritual needs, with
the overall goal of improving quality of life for both the patient and the family caregivers
(Jones et al., 2016; Luchins, & Hanarahan 1993; Rexach, 2012). The majority of
physicians, gerontologists, and family caregivers of persons with dementia recommended
care using a palliative care philosophy (Luchins, & Hanrahan,1993). A palliative care
16
philosophy of care aims to improve the quality of life for terminally-ill patients and their
families through the treatment of pain and other problems, and addressing the physical,
psychosocial and spiritual needs of the individuals (WHO, 2012). Involvement of
persons with a terminal condition, including dementia, in palliative care is said to benefit
both patients and their families (Jones et al., 2016; Volicer, 1998). Only a few studies
measured the efficacy of palliative care for persons with dementia. The evidence suggests
a palliative care approach for persons with dementia is favoured by formal and informal
carers of those with dementia (Casey 2010; Gnaedinger et al., 2008; Jordan, 2010). A
systematic review by Brown, Sampson, Jones and Barron (2012) concluded that there is a
lack of agreement about which prognostic indicators should be used when choosing the
time to deliver palliative care for persons with dementia. Palliative care offers a better
quality of life than continued medical interventions delivered as per usual curative care
plans (Brown et al., 2012; Jones et al., 2016; Roger, 2006; Shega et al., 2004; van der
Steen et al., 2014; Volicer, 1998).
Persons with dementia must be placed at the center of care for palliative care to be
successful (Jones et al., 2016). Care providers must be educated on providing care that is
unique to the needs of each individual patient (Jones et al., 2016). Given the difficulties
of interviewing participants with dementia, little is known about the wishes and needs of
the elderly individuals with dementia themselves. A preliminary 2004 study conducted by
Shega and collaborators suggests that patients with dementia do find a palliative approach
to care most desirable as illustrated by high rates of satisfaction when a palliative care
approach was adopted.
Palliative care is extremely beneficial for helping those with dementia maximize their
quality of life up until death (van der Steen et al., 2014). Palliative care can help those
with dementia maintain some of their function and maximize their comfort (van der Steen
et al., 2014). Given its focus on the individual needs of the dying person, palliative care
for persons equates to person-centered dementia care (Regan, Tapley, & Jolley, 2014;
Roger, 2006). The majority of the research within the field of palliative care has been
conducted with participants with cancer. Patients dying with dementia have been found to
have comparable needs to those of cancer patients (McCarthy, Addington-Hall, &
Altman, 1997; Miller, Lima, Looze, & Mitchell, 2012). However, unlike those with
17
cancer, the unpredictable disease trajectory of dementia makes it difficult for healthcare
professionals and families to know when palliative care is most appropriate (Dening,
Greenish, Jones, Mandal, & Sampson, 2012; Evers, Purohit, Perl, Khan, & Marin, 2002;
Goodman, Amador, Elmore, Machen, & Mathie, 2013). This unpredictable disease
trajectory makes it difficult for caregivers to care for individuals with dementia
(Harrison-Dening, Greenish Jones Mandal, & Sampson, 2012). The majority of those
with dementia do not receive palliative care (Abelson et al., 2004; Gove et al., 2010).
Individuals with dementia are no less deserving of palliative care than those with more
predictable disease trajectories such as cancer (Bekelman et al., 2005; Schonwetter, Han,
Small, Martin, Tope, & Haley, 2003).
Advocates of palliative care for patients with dementia believe that palliative care
should begin right at diagnosis, with changes made to the care plan as the disease
progresses and aggressive medical interventions become more and more futile (Cain,
MacLean, & Sellick, 2004; Ouldred, & Bryant, 2008; Raymond, Warner, Davies, Iliffe,
Manthorpe, & Ahmedzhai, 2014). Abelson et al., (2004) suggests that further research is
needed to determine how much information patients with dementia would like to be
given regarding their prognosis. Other researchers suggest that it is reasonable to assume
that patients with dementia would be similar to those with cancer with respect to
prognosis disclosure (Birtch & Draper, 2008). Knowledge of their prognosis would allow
those with dementia to opt for a palliative philosophy of care sooner. In doing so, a
palliative care approach would allow patients and their caregivers to establish goals of
care that change with the progression of their diseases (Stajudhar, 2003; van der Steen et
al., 2011; 2012). In a cross-sectional study conducted in the USA, Engel et al. (2006)
found that time devoted to discussing future goals of care was associated with greater
satisfaction with care for people with advanced dementia. It has been argued that
establishing goals to align with one’s stage of dementia helps support the dignity of the
individual and helps to control for pain (Raymond et al., 2014; Rexach, 2012; Sampson et
al., 2005). Doing so also addresses the various psychosocial and spiritual needs that may
arise throughout the disease trajectory (Raymond, et al., 2014; Rexach, 2012; Sampson et
al., 2005).
18
As illustrated by van der Steen et al., (2013) in Figure 2 below, palliative care health
care professionals must consider changing the care goals and priorities throughout the
different stages of the disease. The goals of palliative care, including improving quality
of life, maintaining function, and maximizing comfort can be considered appropriate for
patients with dementia throughout their disease trajectory (van der Steen et al., 2013).
Similarly, bereavement support, another goal of palliative care, must also be offered to
individuals’ families following their loved one’s passing (van der Steen et al., 2013).
19
Figure 2: Dementia Progression Prioritization of Goals
Reprinted from van der Steen, J. T., Radbruch, L., Hertogh, C. M., de Boer, M. E., Hughes, J. C., Larkin,
P., ... & Koopmans, R. T. (2013). White paper defining optimal palliative care in older people with
dementia: a Delphi study and recommendations from the European Association for Palliative Care.
Palliative Medicine, 0269216313493685.
20
A randomized control study by Ahronheim et al. (2000) suggests that a palliative care
approach is often not practiced for individuals with dementia residing in long-term care.
Long-term care staff have little knowledge about palliative care in relation to dementia
(Ryan et al., 2012; Sanders, & Swails, 2009; Turjumaa, Hartikainen, Kangasniemi, &
Pietila, 2014; Suh, Kil Yeon, Shah, & Lee, 2005). A study in the UK found that palliative
care specialists and other chronic disease health practitioners reported gaps, needing more
communication between various disciplines to better provide palliative care for
individuals with dementia (Johnson et al., 2009). Staff are willing to be educated about
improving palliative care for those with dementia residing in long-term care homes
(Hirakawa et al., 2006). The current lack of knowledge and guidelines for palliative care
for persons with dementia have been found to lead to disorganized care (Davies et al.,
2014). The current practices of some long-term care homes aim to prolong life rather than
improve the quality of life of individuals (Hennings, Froggatt, & Keady, 2010; Kenny,
Hall, Zapart, & Davis, 2010). With no agreed-upon standard to care for the treatment of
late-stage dementia, clinicians within long-term care homes face ethical and health policy
dilemmas. Health policies urge physicians to provide aggressive medical interventions to
extend an individual’s life (Volicer, 1998). In a study conducted in the Netherlands,
researchers found that the intention to hasten death was evident in 53% of the cases, and
that the action would hasten death was considered in 41% of cases involving people in
nursing homes who had antibiotics withheld from them (van der Steen et al., 2005). This
view that death is constrained by medical values and practices controlled by physicians is
known as the medicalization of death (Connelly, 1998). With the medicalization of death
in long-term care, even individuals with palliative care plans, have been found to die
undignified deaths (Birtch & Draper, 2008).
2.4.1 Pain Management
Of all the components of palliative care, pain management appears to be the largest
priority within dementia and palliative care research. Pain is common for people with
advanced dementia (Barry et al., 2014; Davies et al., 2014). A palliative approach to
home care for those with a terminal illness including dementia would make the
controlling of pain and symptom management a priority (Walke, Gallo, Tinetti, & Fried,
21
2004; Volicer, 1998). It is difficult to assess symptoms of pain in people with dementia
because of cognitive, functional and communicative issues that arise (Ahronheim et al.,
2000, Aminoff, & Adunsky; 2006; Sachs et al., 2004). Unmanaged pain only causes
additional suffering for terminally ill individuals with dementia (Aminoff, & Adunsky;
2006; Sachs et al., 2004). Currently, pain is often measured by self-reporting (Sampson et
al., 2005) which is problematic for those with dementia. Research on the assessment of
pain for people with end stage dementia is limited, particularly in home-care settings, and
has focused on the ability of caregivers to predict patient pain (Shega et al., 2004; 2008).
Knowledge and skills on dementia are believed to help caregivers manage pain
(McCarty, & Volicer, 2009; Regan, Tapley, & Jolley, 2014). The majority of family
caregivers have been found to receive little information on the anticipated course of their
family member’s illness or indicators of distress to help them better care for their
terminally ill family member (Cain, MacLean, & Sellick, 2004; King et al., 2005).
Mitchell et al. (2004) found that older adults with dementia choosing to die at home had
greater levels of pain than their nursing home counterparts. Findings from Shega and
colleagues (2004; 2006) concluded that persons with dementia living in the community
were at greater risk of untreated pain than persons without dementia. On the other hand,
those with advanced dementia being cared for at home had less functional disability,
more behavioural problems and more feeding tubes at their end-of-life than those residing
in nursing homes (Mitchell et al., 2004; 2009; Kuhn & Forrest, 2012; Livingston et al.,
2012). Honest discussions between health care professionals and family caregivers on
pain the patient could be feeling can help caregivers address pain in those who are
uncommunicative (Caron, Griffith, & Arcand, 2005).
Specialist interdisciplinary teams are necessary for community palliative care services
to be delivered effectively (Abelson et al., 2004). Specialist care for people with terminal
conditions have existed within Canadian home care for some time and it is believed that
such care can be applied to those with dementia (Canadian Hospice Palliative Care
Association, 2006; Abelson et al., 2004; Hurley, Volicer, & Blasi, 2000). Ahronheim et
al.(2000) found that a palliative care research team was unable to influence the care of
advanced dementia patients in the acute hospital setting. In another study, caregivers
reported higher satisfaction with palliative care services when health care teams
22
addressed issues of patient comfort by avoiding the use of tube feeding and giving care in
a specialized dementia care unit (Engel et al., 2006).
When compared to usual care, patients with dementia have been found to experience
less discomfort when receiving palliative care in the community (Volicer, 1998).
Community palliative care providers for persons with dementia may limit ‘curative’
medical interventions that inflict pain, such as tube feeding and cardiopulmonary
resuscitation- both of which have been found to provide equivocal benefits (Jordan,
2010). Engel et al. (2006) found that the absence of tube feeding was associated with
increased satisfaction with care for older people with advanced dementia. Evidence
suggests that in forgoing such treatments, death is not hastened but quality of life is
improved (Hughes, 2010). A palliative approach to care for people with dementia not
only prevents patients from receiving unbeneficial medical treatments, but also can save
the health care system valuable medical resources (Davies, Maio, Rait & Llife, 2014;
Volicer, 1998).
The aforementioned evidence supporting palliative care for persons with dementia to
alleviate symptoms of pain could apply to various health care settings. A study conducted
by Volicer et al. (2003) provides evidence that palliative care pain management is most
effective in the home. Volicer et al. (2003) conducted a retrospective study to consider
the characteristics of palliative care in different settings for patients with dementia. The
study concluded that when a terminally ill individual with dementia was cared for at
home during their last 90 days of life, they experienced fewer symptoms of pain than
those cared for in institutions. The study did not provide detailed explanations as to why
pain was lessened at home. It is important to keep such studies in mind when considering
the most appropriate place in which to provide palliative care (Birtch & Draper, 2008).
2.4.2 Psychosocial Needs
It is sometimes believed that people with dementia only need their physical needs
addressed due to their communication difficulties (Hughes, 2010). The psychological and
social needs of people with dementia must not be forgotten. Palliative care fosters a
holistic philosophy of care, which considers the psychological and social needs of people
with dementia and their families. For people caring for those with dementia, the largest
perceived psychosocial need is maintaining patient dignity (Gove et al., 2010; van der
23
Steen, 2010; 2011). The term ‘dignity’ was not clearly defined within the literature.
Dignity is commonly used in connection with the dying process, in reference to ‘dying
with dignity’. It is widely accepted that to die with dignity means to control the dying
process (Gove et al., 2010; van der Steen et al., 2011). Enabling terminally ill older adults
who remain at home is another way of affirming the person’s autonomy (Sampson,
2010). Palliative care is said to enable patients to be involved in decision-making more so
than traditional care (Roger, 2006). Palliative care supports human dignity by
continuously assessing the needs and wishes of the ill individual and their families
(Sampson et al., 2005; Volicer, 1998).
Dementia diminishes the decisional capabilities of individuals so advance directives
are often used for individuals to indicate their wishes for palliative care. The Alzheimer
Society of Canada (2013) supports advance directives as a means for people with
diagnosed dementia to exercise their right to determine their care. Scholars have found
that for advanced directives to be suitable for palliative care decision-making, they must
be done early on in the diagnosis while those with dementia still have their cognitive
capacity intact enough to express their wishes (Gandy et al., 2011; Gessert et al., 2001).
Barriers to effective communication about end-of-life issues are significant (Johnson et
al., 2009; Shega et al., 2008) and are challenged by the context of dementia (Birch, &
Draper, 2008). The majority of advanced directives for people with dementia do not
request that palliative care be delivered in the community (Birtch & Draper, 2008). For
those without advanced directives, palliative care still continues to support dying with
dignity by often limiting the use of psychoactive medications and physical restraints,
which are often used to treat those with dementia who become violent (Jordan, 2010;
Mayer, 2001). It has been argued that the use of psychoactive medications and physical
restraints reduces patients’ autonomy (Sampson et al., 2005; Sampson, Burns, &
Richards, 2011).
Allowing palliative care to be delivered in one’s home supports the dignity of elders
with dementia and addresses their social needs and helps to foster dignity and autonomy
throughout the dying process. Despite the wishes of patients, many palliative care clients
with dementia currently die in institutions (Jordan, 2010). Numerous studies suggest that
some care homes are ill-equipped to provide optimal end-of-life care for those with
24
dementia (Klinkenberg et al., 2005; McCarthy, Addington-Hall, & Altmann, 1997;
McCarthy & Volicer, 2009; Meeussen et al., 2012; Regan, Tapley, & Jolley, 2014; Ryan
et al., 2012). For example, Ryan and colleagues (2012) found that persons with dementia
residing in long-term care homes receive very little care interventions at the early stages
of their illnesses but are given aggressive treatments towards the end of their lives. Some
of these interventions include cardiopulmonary resuscitation (CPR), feeding tubes, and
intravenous antibiotics, which ultimately have been found to only increase pain and
suffering in those with advanced dementia (McCarthy, Addington-Hall, & Altmann,
1997). In instances where the palliative care philosophy is not being used, these
interventions are often the default action of healthcare practitioners (McCarthy &
Volicer, 2009; Meeussen et al., 2012).
The thought of a loved one passing away in an institutionalized setting and not in
one’s home is associated with added anxiety about death for family caregivers
(Klinkenberg et al., 2005; Regan, Tapley, & Jolley, 2014). Hughes (2010) argues that if
people with dementia have discussed their preference for place of death earlier on in their
diagnosis, it is likely that they will die in that place. Researchers are urging for the
creation of policies aimed at increasing opportunities for care at home (Williams et al.,
2001). Proponents of community palliative care for persons with dementia believe that
giving individuals the choice about where health care is delivered is central to respecting
an individual’s psychological needs and overall autonomy (Abelson et al., 2004).
A preliminary study by Shega et al. (2004) described how community palliative care
was helpful for managing pain in those with terminal illnesses and for allowing patients
to die at their place of choice. Allowing those with dementia to retain some control over
where they die, can help enhance their quality of life. Despite the noted psychosocial
benefits that follow from offering palliative care to be delivered in the community, no
study acknowledged the challenges that this may cause or how such care should be
delivered. Studies that argued for community-based palliative care delivery failed to
address issues related to the family's ability to cope, safety and health considerations, and
the availability of regulated health care professionals to provide support in homes
(Goodman et al., 2010; Shega et al., 2004). Further studies are needed to support the
25
development of palliative care in the community for persons with dementia (Robinson et
al., 2005).
As the increase in prevalence of life-threatening illnesses and push towards home care
has happened in Canada, informal caregiving has gained a significant amount of attention
in recent research on palliative care (Clemmer et al., 2008; Stajduhar, 2003). The
intention palliative care philosophy is to care for the needs of family caregivers.
Caregiving for terminally ill individuals has a profound and lasting effect on caregivers
(Stajduhar, 2003). Albinsson and Strang (2002) noted that when a person is dying with
dementia, the needs of informal caregivers differ from those of other conditions.
Numerous studies have reported on the consequences of the psychological stress that
results from caring for palliative patients in the community (Lecouturier et al., 1999;
Stajduhar, 2003). Diwan, Hougham and Sachs (2004) posit that successful palliative care
programs must also provide services to family caregivers that encourage access to
community resources that meet their psychological and social needs. Researchers found
that caregivers have a desire for more information and overall support from health care
professionals (Davies et al., 2014; Godwin & Waters, 2009; Livingston et al., 2012).
A mixed methods study by Williams and colleagues (2001), evaluating home-based
palliative care in Ontario found that current non-profit agencies delivering palliative care
in communities were better able to meet client satisfaction in terms “needs other than
physical” (p.29). Studies conducted in long-term care have shown that informal
caregivers are often not identified as rightful recipients of care (Cain et al., 2004;
Lecouturier, et al., 1999). The majority of health professionals choose to prioritize the
dying patient’s psychosocial needs versus their caregivers’ needs due to the limited
length and frequency of visits (Oudshoorn, Ward-Griffin, & McWilliam, 2007).
Community-based palliative care can support the psychosocial needs of caregivers.
In advocating for community-based palliative care, it is important to consider the
results of an ethnographic study conducted by Stajduhar (2003). This study found that
despite informal caregivers reporting caring for their terminally ill family member in the
home to be favourable, the transition of palliative care services from hospital to home left
many informal caregivers to feeling exploited by the health care system (Stajduhar,
2003). According to Cain, MacLean, and Sellick (2004) the psychological needs of
26
informal caregivers is crucial for health care providers and policy makers to consider
given that psychological strain is the leading reason for the use of formal care services.
Community-based palliative care has the potential to support the psychosocial needs of
caregivers, but some caregivers have felt that the current provision of care does not
adequately meet their needs (Kenny et al., 2010; Lecouturier et al., 1999; Oudshoorn et
al., 2007). For instance, caregivers often do not have a familiar home support worker that
they trust (Stajduhar, 2003). Family caregivers have reported feeling exploited or
pressured to keep their family member home as a result of community health care
reforms (Stajduhar, 2003). The current approach to home care in Canada causes pressures
on nurses to limit their time with clients and thus, may limit the amount of care provided
to informal caregivers (Oudshoorn, Ward-Griffin, & McWilliams, 2007). Luker et al.
(2000) theorize that high-quality palliative care can only be developed once a health care
provider knows the extent of the needs of their patients and his/her family. The
researchers believe that community palliative care delivery must give nurses the
appropriate amount of time to know their clients and their family and aim to provide
more than the physical aspects of care (Luker et al., 2000). A model theorizing how to
best support the psychosocial needs of family caregivers to terminally ill individuals has
not been established. More studies are needed to test effective ways to support the
psychological and social needs of caregiver (and terminally ill individuals) within
community palliative care services.
2.4.3 Spiritual Needs
The limited literature on the spiritual palliative care needs of palliative care clients
with dementia focuses almost exclusively on family caregivers. The diagnosis of terminal
illness has been found to prompt feelings of loss in the patient themselves and their
family caregivers (Roger, 2006). A literature review by Davies, Maio, Rait, and Llife
(2014) found that many family caregivers were not able to think about the death and
dying process of their relative with dementia. In a Delphi study by van der Steen et al.
(2014), the authors recommended that spiritual care be implemented into any successful
community-based palliative care program if requested by the client or caregiver,
especially in terms of bereavement. In spite of this, a focus on the spiritual needs of
families and patients with dementia facing a terminal illness has been poorly researched.
27
Caregivers of those with dementia need support in facing the prospect of death, prior
to the death of their family member (Albinsson & Strang, 2002). The findings from
various studies examining caregiver experiences with caring for a family member at end-
of-life in the home showed that informal caregivers are faced with the burden of
inadequate support regarding their feelings on death, fear, and isolation (Albinsson &
Strang, 2002; Diwan et al., 2004). A cross-sectional study by Kenny and colleagues
(2010) concluded that health care providers caring for palliative clients in the home need
to be aware of the vulnerable position of caregivers in order to best support their overall
needs. van der Steen et al. (2014) suggest that support resources in caregiving for persons
with dementia should include the involvement of sources that support spiritual well-being
at times of fear and loss. A palliative approach to dementia care would support their
spiritual needs by allowing family members to access bereavement supports that differ
from bereavement following cancer (Albinsson & Strang, 2002; 2003). People with
dementia and their caregivers have been thought to benefit from such spiritual support
(van der Steen et al., 2014). An approach to quality end-of-life care for those with
dementia must go beyond the biomedical model to support spiritual care (Small, Froggatt,
& Downs, 2007). No study explicitly examined the process of bereavement experiences
by family caregivers of persons with dementia, using the palliative care philosophy.
Some believe that palliative care would best support the spiritual needs of patients and
caregivers (Davies, Maio, Rait, & Llife, 2014; Roger, 2006). The lack of research
focusing specifically on the spiritual needs of community-dwelling palliative care clients
and their family members represents an important gap in the current literature.
2.5 The Control Theory of Aging
Upholding a person’s wellbeing and dignity is at the core of the palliative care
literature. A common theme among this literature is the lack of control held at the end-of-
life by terminally ill patients and their families (Redding, 2000). Theorist Schulz (2006)
posits that a perceived sense of personal control is a critical determinant of an older
adult’s physical and psychological wellbeing. Believing that one is in control over his/her
own life is understood to be the most important defense against experiences of distress
(Mirowsky & Ross, 1986). The mere belief that one has control over undesirable or
uncontrollable events is said to lessen the negative consequences of the event (Redding,
28
2000). Circumstances that deprive people of control in their lives, such as an incurable
illness, increases a sense of distress (Mirowsky & Ross, 1986; Redding, 2000).
Having a sense of control is vital to coping with the uncertainty of a disease (Burgess,
1994; Redding, 2000). Caruso-Herman (1989) identified that a loss of control is the
primary concern of dying persons. Scholars believe one of the most stressful
development events in an individual’s life is when they are faced with a terminal illness
(Paton, 1996). Individuals make an effort to regain control as a reaction to the loss of
control that comes from a terminal illness (Burgess, 1994). The palliative care philosophy
creates opportunities to address individuals’ wishes and help them maintain a sense of
control. This aligns with the Institute of Medicine (1997)’s definition of a dignified death,
which is one that reflects an individual’s wishes. According to Hunt (1994), prior to the
acceptance of palliative care, terminal care failed to address individual choice and
control. As Hunt (1994) stated, the palliative care model “stressed the importance of
patients being involved in decisions about their quality of life” (p.131). Achieving a sense
of control has been identified as one of the five domains of quality end-of-life care as
proposed by Singer, Martin, and Kelner (1999).
Mesler (1995) states that the principle of increasing patient control at the end-of-life
highlights the concept of autonomy in medicine. Respect for the ethical principle of
autonomy is thus a special concern for the control theory of aging. Efforts to reform
decision-making for terminally ill individuals has largely focused on promoting patient
autonomy to control treatment decisions (Winzelberg et al., 2005). In its dominant
understanding in Western Societies, autonomy refers to freedom from external restraint
and the ability to make decisions about his/her own preferences, values, beliefs and
choices (Schulz, 2006).
Respecting the autonomy of patients is a large ethical concern in diseases like
dementia, where cognition and decision making are compromised (Schulz, 2006). Under
the theory of control, caregivers and health care professionals should address dying
individuals’ preferences for care as they are now (if they have the cognitive capacity to
express such wishes) or the way their wishes were expressed in the past (such as those
mentioned in advance directives) (Dresser, 2001; Schulz, 2006). There is the underlying
assumption that all health care professions ought to respect the autonomy of their
29
patients. There is also the assumption that individuals should make decisions about their
health care for as long as possible. The traditional definition of autonomy does not
incorporate effects on families (Winzelberg et al., 2005). Studies have indicated that
individuals consider the potential effect of their health care decisions not only on
themselves but also on their family members (Winzelberg et al., 2005). This indicates
that health care decisions may not always reflect the exact wishes of the individual.
Autonomy in older age is a complex challenge that involves more than acknowledging
the rights of a person at specific time in their lives and urges for autonomous decision
making across the life span (Schulz, 2006).
Autonomy and the upholding of patient choice are emphasized as essential
components of palliative care delivery models world-wide (Lau & O’connor, 2012). The
World Health Organization report on palliative care affirms that “however complex a
person’s problems or uncertain their future may be, autonomy is a key human right and
maintaining this must be a core ethical value” (Davies & Higginson, 2004, p. 18).
Redding (2000) argues that the only person who can inform health care professionals
regarding what they need and want at the end-of-life is the dying patient. Patients should
be at the core of all palliative care research and practice, to best ensure that suggestions
for care delivery support their autonomous wishes.
2.6 Conclusions and Guidelines for Future Practice and Research
While there is much literature conducted on palliative care, there is a lack of literature
related to community-based palliative care for individuals with dementia. This can be
because the majority of deaths in Canada occur in hospital (Canadian Hospice Palliative
Care Association, 2010; Freeman et al., 2013). As a systematic review by Sampson et al.
(2006) demonstrated, the general information available within this field is ambiguous
regarding the efficacy of a palliative model of care in dementia (p.31). Despite significant
gaps in the literature, the importance of providing appropriate palliative care to address
individuals with dementia and conducting research in this area were reinforced by all of
the included studies. It is only through future research in this area that improvements with
regard to the potential to increase the quality of life for terminally ill patients suffering
from dementia can be made (Birtch & Draper, 2008). Palliative care for persons with
dementia is a relatively new and emerging field within the greater body of policy and
30
research. Studies focusing on palliative care for persons with dementia in home care
settings have been relatively neglected. The care of those who are terminally ill and
choosing to die in their own home has received little attention, especially when
considering the research on patients without cancer. There is an opportunity to use what
is currently known about palliative care and community-based care as a starting point for
future studies.
Further studies, particularly ones with rigorous methods and strong evidence, are
needed to help service providers ensure that palliative care for community-dwelling
individuals with dementia is appropriate to meet this population’s unique needs. It has
been suggested that qualitative research would be helpful for understanding the
experiences of palliative care in home-based settings for those with dementia (Goodman
et al., 2010). Terminally ill individuals and their family caregivers themselves must be
the sources of information to fully understand the experiences of care at the end-of-life
(Godwin & Waters, 2009). Further research in this area will help guide improvements
for palliative care for those with dementia choosing to die at home, which has the
potential to increase their quality of life and reduce the use of non-beneficial medical
resources. Above all, future research will help terminally ill individuals with dementia die
at their place of choice with a dignified death.
2.7 Study Rationale and Objectives
Much work remains to be done in the area of community-based palliative care for
older adults with dementia (Goodman et al., 2010). This study presents a
phenomenological study of the lived palliative care experiences of community-dwelling
older adults with dementia and their informal caregivers. While types of dementia include
Alzheimer’s disease, vascular dementia, frontotemporal dementia and other kinds (WHO,
2012), the term ‘dementia’ will be used throughout this thesis to encompass all different
disease types and forms of early-stage dementia. This study focused on individuals with
early-stage dementia as the majority of individuals at this stage are still able to
communicate well. The purpose of this study is to enhance understanding of the
experiences of this group of individuals. This understanding is needed to help advance
the quality of care within the community-based healthcare system. This study aims to
describe the experiences of individuals with dementia who receive palliative care in the
31
community and the experiences of their informal family caregivers. As older adults’
voices are infrequently heard within the literature on community-based health care, this
work will complement the work of others done on end-of-life care for people with
dementia (for example, Hughes, 2005; Volicer, 2013, van der Steen et al., 2013).
This study may result in a better understanding of how older adults and their care
teams are managing multiple chronic conditions coexisting with dementia within the
community. Understanding common experiences can help to guide future research on
interventions, policy changes and future best practices.
2.8 The Present Study
2.8.1 Study Purpose
The purpose of this study is to describe the lived experiences of individuals with
dementia who receive palliative care in the community due to other terminal conditions,
along with the experiences of their informal caregivers.
2.8.2 Research Questions
The following research questions had been devised to guide this study: How do
community-dwelling individuals with a terminal condition, in addition to dementia,
describe their experience of receiving palliative care? How do the participants’ informal
care providers experience providing care to someone with dementia who also requires
palliative care?
32
3 METHODOLOGY
A qualitative research design guided by a hermeneutic phenomenology methodology
was employed in this study to examine the lived palliative care experiences of older
adults with dementia and their family caregivers. Below is a brief overview of
phenomenology as both a philosophical method of understanding phenomena and as a
research methodology. A rationale for this methodology is also provided. The study
design, method of analyzing data, credibility of the study and the different measures of
quality criteria employed throughout the study are discussed.
3.1 Phenomenology
Phenomenology, as a philosophical approach of understanding phenomena, was
formally introduced by Edmund Husserl at the start of the twentieth-century (Dowling,
2007). Husserl rooted this philosophical thought deep in the works of other philosophers
such as Kant and Hegel, with the desire to convert philosophy into a science (Guignon,
2006). Through Husserl’s (1931) work, came about the first branch of phenomenology
known as phenomenological reductionism or descriptive (eidetic) phenomenology. For
Husserl, converting a philosophy into a science meant directing attention towards the
meanings of experiences (Guignon, 2006). The scientific investigation of uncovering
meaning is only considered valid when the information has been gathered through rich
descriptions of experience, allowing for an understanding of the essence of the
experience (Moustakas, 1994). According to Dowling (2007), this method of
phenomenology aims to understand lived experiences exactly as they appear without the
researcher’s preconceived notions, biases, or interpretations. This detachment from the
observer or researcher’s prior knowledge of the phenomenon is known as bracketing
(Carpenter, 2007; Wilding & Whiteford, 2005).
Martin Heidegger, a former pupil of Husserl’s, extended on the concept of
phenomenology as a method. Unlike Husserl, Heidegger focused on the ontological
interpretation of the meaning of lived experiences (Dowling, 2007). Heideggar (1962)
posited that human beings should not be viewed as objects, but rather as persons whose
actions and understandings form a comprehensive set of self. Heidegger’s early thoughts
became what is known as existential phenomenology or interpretive (hermeneutic)
phenomenology (Dowling, 2007). For Heideggar, phenomenology requires extending the
33
study of the lived experience from simply describing phenomena to understanding it via
an interpretative process (Dowling, 2007). Heideggar (1962) argued that because human
beings actively participate in their understanding of the world, individuals can not bracket
their understandings and interpretations of experiences, as proposed by Husserl
(Downling, 2007; Flood, 2010). Heideggar (1962) believed that researchers are unable to
put aside their own beliefs about the phenomenon under investigation and throughout the
phenomenological exploration.
Hans-Georg Gadamer, a student of Heideggar, further advanced interpretive
(hermeneutic) phenomenology as a method, by extending Heideggar’s work into more
practical applications (Gadamer, 2004; Polkinghorne, 1983; 1989). Gadamer believed
that since interpretation is an always evolving process, a definitive interpretation of a
lived experience is likely to never occur (Annells,1996a; Gadamer, 2004). However,
Gadamer (2004) introduced two important elements into phenomenological
methodology: prejudgment and universality (Dowling, 2007). Prejudgment encourages
the researcher to be aware of his/her own prior knowledge of the experience, and use this
as an aid in interpreting the data (Dowling, 2007; Gadamer, 2004). Conversely, the
concept of universality holds that the meanings of the lived experience are understood
through a joint collaboration between the researcher and participants from where a co-
construction of interpretation is derived (Dowling, 2007; Flood, 2010).
Relatively recently, a third branch of phenomenology, guided by Max van Manen, is
beginning to emerge known as the Dutch school of phenomenology (Dowling, 2004).
van Manen’s methodology is a combination of both descriptive and interpretive
phenomenology (Dowling, 2007; van Manen, 1990,1997). van Manen does not suggest
bracketing (Husserl, 1931) and instead, believes that external knowledge is needed in
developing an understanding of the phenomenon being investigated (Dowling, 2007; van
Manen, 1990,1997).
3.1.1 Why Hermeneutic Phenomenology?
In all schools of thought, Rossman and Rallis (1998) describe the goal of all
phenomenological research as to “seek to understand the lived experience of a small
number of people” (p.68). Hermeneutic phenomenology is believed the most appropriate
methodology for this study as it is well suited to answer questions regarding humans’
34
experiences, concerns and issues (Benner, 1994). This methodology will help provide a
better understanding of the significance people give to their experiences and issues within
their experiences (Benner, 1994).
Given that the primary goal of this study was to encapsulate the full meaning of
participants’ experiences, using their own words, and to interpret the meaning of their
experiences, a hermeneutic phenomenology methodology informed by Heideggar (1962)
was selected. A hermeneutic phenomenological methodology was appropriate for this
study because it enables the researcher to “understand the meaning that participants
attribute to those actions – their thoughts, feelings, beliefs, values, and assumptive
worlds” (Rudestam & Newton, 2001, p. 57), but also allows the researcher to make sense
of the meaning that participants make of that experience. The concepts of Heidggerian
hermeneutic phenomenology also ensured that participants were situated in their
everyday activities and realities with emphasis on their concern regarding their day-to-
day life (Benner, 1994; Mackey, 2005). This is important for the study because there is
little research which examines the lived experience of those with a terminal condition, in
addition to dementia and tries to make sense of the experiences to improve their
conditions. Through Heideggarian phenomenological inquiry, the study subjects become
co-researchers of the study through the process of interviewing (Rudestam & Newton,
2001). In wanting to understand the participants, the researcher required the privilege of
listening to their experiences and then only afterwards, attempted to reveal meanings
within these stories (Plager, 1994; Ray, 1994).
In accordance with Heideggerian hermeneutic phenomenology, the researcher came to
the study with some pre-understanding of palliative care in the community (within South
Western Ontario) and with some experience working with individuals with dementia, and
other chronic conditions. The hermeneutic circle put forward by Heideggar enabled the
researcher to interpret the meaning of participants "in a careful and detailed manner"
(Packer, 1985, p. 1082), while also shedding light on the importance their experiences
have in practice. Taylor (1993) concludes that phenomenology also has the potential to
generate knowledge for practice from practice. The data made available through this
research can initiate a pathway for persons with dementia receiving palliative care to
35
have with their needs and wishes known, in their own words and from their own
experiences.
3.1.2 Key Concepts in Heideggarian Hermeneutic Phenomenology
Heideggerian hermeneutic phenomenology is a research method based on the
philosophy of Heidegger, with the aims of uncovering lived experiences from the
perspective of the individual(s) experiencing the phenomenon, the meaning of the human
experiences, and how the researcher and individuals interpret those experiences (Flood,
2010; Laverty, 2008; Streubert, & Carpenter, 2011). Hermeneutic phenomenology aims
to incorporate both a description and an interpretation of a lived experience (Dowling,
2007) in order to attribute meaning to this phenomenon (Flood, 2010; Laverty, 2008).
In Heideggerian hermeneutic phenomenology, "phenomenological description as a
method lies in interpretation" (Heidegger, 1962, p.61). This is because the methodology
stems from the belief that all human beings have a prior understanding of the
phenomenon being investigated, due to previous knowledge, history and backgrounds,
which cannot be detached from the analysis of phenomenon (Dowling, 2007; Heidegger,
1962). According to Heideggar (1962), this prior understanding will unavoidably
influence the construction of the meaning of the phenomenon. Heidegger (1962)
distinguishes three interrelated modes of interpretation of the lived experiences, known as
"fore-having", "fore-sight" and "fore-conception" (p. 191). These three modes are an
important component of Heideggerian hermeneutic phenomenology known as the
hermeneutic circle, or the “fore-structure” (Heidegger, 1962, p. 191). The hermeneutic
circle is the framework from which all interpretation is constructed in order to increase
the understanding of the lived experience (Bontekoe, 1996; Heidegger, 1962; Plager,
1994). This hermeneutic circle of understanding is an ever expanding, circular cycle of
understanding and interpretation (Gadamer, 2004).
Plager (1994, p. 72) describes the hermeneutic circle as follows:
Fore-having: Coming into an experience (or situation) with a familiarity of background
practices that ensures an interpretation is possible.
Fore-sight: Our backgrounds provide us with a point of view from which we can make
an interpretation.
36
Fore-conception: Our backgrounds cause us to have some expectations of what we might
anticipate in an interpretation.
37
Figure 3: The Hermeneutic Circle (adapted from Bontekoe, 1996, p. 4)
Fore -having
Parts of Phenomenon
Fore-sightParts of
Phenomenon
Fore-conception
Whole Phenomenon
38
The hermeneutic circle relies on the process of continuously examining the whole
essence of the experience of a phenomenon to the specific parts of the experience, to
ultimately come to an understanding of the data shared by the researcher and participants
(Mulhall, 2013).
3.2 Paradigm, Ontology and Epistemology
As Heideggarian hermeneutic phenomenology situates participants within the context
of their realities (Laverty, 2008), this study was guided by an interpretivist-constructivist
paradigm (Guba & Lincoln, 1994). This paradigmatic lens was most fitting to this
research project as it supports Heidegger’s (1962) belief that human beings’ experiences
are situated and formed through their involvement in their daily activities, relationships
and environments. The constructivist paradigm supported the use of multiple informant
types in this study as it encourages the use of multiple perspectives and realities. In line
with the interpretivist-constructivist paradigm, this study adopted a relativist ontology
and a subjectivist epistemology. In taking the viewpoints of a interpretivist -
constructivist, the researcher assumed relative and constructed realities throughout this
study (Guba & Lincoln, 1994). This stance maintains that humans construct meaning as
they engage with the world they are interpreting (Crotty, 1998).
3.3 Quality Criteria in Qualitative Research
Several authors, such as Koch (1996), have argued that the criteria used to ensure
quality in qualitative research should be consistent with the methodological basis of the
research. In support of this view, the following criteria of rigor and trustworthiness was
used in this phenomenological study.
3.3.1 Rigour
Ensuring quality in phenomenology research requires the rigorous use of methods of
data collection and analysis consistent with phenomenology methodology and
transparency in documenting these methods, the challenges of the research process and
findings (Lincoln, & Guba, 2000; Tracy, 2010). According to Tracy (2010), a study that
employs rich rigour is also careful to include adequate sample numbers and appropriate
contexts. Transferability of these findings is also an important indicator of quality in
qualitative research (Hammersley, 1992; Seale, 1999).
39
A key component of ensuring transparency in phenomenology is the use of self-
reflexivity. Reflexivity refers to the conscious decision of the researcher to be self-aware
of his/her values, biases and understandings throughout the duration of the research
experience (Strauss & Corbin, 1998; Tracy, 2010). A reflexive journal was kept
throughout the research process that allowed the researcher to acknowledge her own
influences on the data and provide evidence of the decision-making processes made
throughout the study (Clayton & Thorne, 2000). Memos and thoughts from discussions
with my academic advisory committee throughout the entire thesis project were also
included in this journal. For example, during the early stages of this project, I wrote about
my emerging understanding of phenomenology methodologies and reflected on the
changes that were made to the research design. The journal writing enabled me to
articulate my ideas about conceptual frameworks for analysis of the data and led me
eventually to adopt an interpretivist-constructivist framework. During the process of data
analysis, I was able to write about initial concepts or thoughts I had about the transcripts
or notes from discussions of potential themes I had with my supervisor.
Self-reflexivity is inherently embedded within the process of the hermeneutic circle
(Bontekoe, 1996). By acknowledging the researcher’s own familiarity with the palliative
care literature and her academic and social background, the researcher was able to engage
in the hermeneutic circle. The use of the hermeneutic circle in analyzing the data
contributed to the rigour of the study.
Rigour was also maintained through the congruency between the adopted paradigm
and chosen methods and the use of participant dyads in data collection. The use of two
sources of data collection provide multiple constructions of the phenomena. This
enhanced the richness of the data (Denzin & Lincoln, 2000).
3.3.2 Trustworthiness
Trustworthiness goes hand-in-hand with rigour in qualitative research. According to
Streubert and Carpenter (1995) trustworthiness can also be achieved through the
researcher’s accurate representation of the participants’ experiences. The trustworthiness
of the findings of the research was illustrated through the use of rich description and
participant quotes. Doing so ensured that the voices of the participants and the researcher
were evident in the analysis of the understanding of the phenomenon. This ultimately
40
enhanced the authenticity of the data (Lincoln, & Guba, 2000). Trustworthiness was also
demonstrated through the use of audiotaping, verbatim transcription of interviews and
member checking to ensure accuracy and authenticity of the data (Lincoln, & Guba,
1985; Tracy, 2010).
3.4 Methods
3.4.1 Sampling Strategy
Purposive sampling was used to recruit participants. Purposeful sampling is useful in
phenomenological research as it helps ensure useful and rich data by confirming that all
participants experienced the phenomenon under study, and are willing to talk about the
experiences to the interviewer (Plager, 1994; Suri, 2011). Purposeful samples tend to be
small (Suri, 2011). This study recruited 10 participant dyads, consistent with Creswell’s
(2013) recommendation that a phenomenological study requires a minimum of 10
participants in order to make assertions regarding the phenomenon of interest. Saturation
is a key component of the phenomenological approach. Sampling officially ended when
interpretations of the participants’ experiences were clear and additional participants did
not reveal novel findings or meanings (Crist & Tanner, 2003).
3.4.2 Recruitment
In Ontario, Canada, Community Care Access Centres (CCACs) arrange access to
service care providers for all in-home services including palliative home support services.
The 14 CCACs across Ontario use case management to coordinate the care services
(Aronson, Denton, & Zeytinoglu, 2004). The researcher worked collaboratively with
palliative care providers from the community healthcare organization CarePartners, as
contracted by the South West CCAC London office, to recruit ten participant dyads for
this study. The palliative care providers were briefed on research study objectives and on
inclusion/exclusion criteria for study participants. Using a telephone script developed by
the researcher (Appendix A), palliative care providers contacted potential participants
who they believed met the inclusion criteria and briefly described the study to them.
Interested participants were given the researcher’s contact information and were asked to
contact her regarding the study. Those who contacted the researcher and agreed to be
involved in the study had their questions answered and, if they remained interested in
participating, had an interview time set up. At the time of the first interview, the
41
researcher reviewed the letter of information (Appendix B and Appendix C) with the
participants and outlined the study in detail before beginning the interview. At this time
the researcher also answered any additional questions that participants had about the
study, and had the participants sign the consent form (or in the case of older adult
participants with limited capabilities, had a proxy decision maker do so).
3.4.3 Inclusion/Exclusion Criteria
To be eligible to participate in this study, older individuals must have been aged 65
years or older and had to: (a) have one or more terminal conditions for which they have
chosen a palliative care treatment option for; (b) receiving palliative care in the
community through a formal health care system for a minimum of 3 months; (c) be
receiving care from an informal caregiver; (d) have a diagnosis of early-stage dementia
disease as classified by a Mini-Mental State Examination score of 20 to 24 as
administered by a health care professional; and (e) be able to provide informed consent or
have a substitute proxy-decision maker to provide informed consent. All individuals must
also have had an informal caregiver willing to participate in this study.
For family caregivers to be eligible to participate in this study, they had to: (a) be
directly involved in providing palliative care to the older adult participant; (b) not be
employed within the field of primary health care; and (c) be able to provide informed
consent. All individuals must also have had an older adult participant willing to
participate in this study.
Participants who were unable to communicate and/or understand English (including
those with severe forms of dementia) were excluded. Participants who could not be
interviewed in London, St. Thomas or Oxford, Ontario or by telephone were excluded
from this sample. Participants who did not consent to having the interviews audio-taped
were also excluded. No other criteria were used to allow for a diverse sample in regards
to experiences and characteristics.
3.4.4 Ethical Considerations
Throughout this study, careful consideration was given to the welfare of all involved.
Ethical practice is of utmost importance in all qualitative research regardless of paradigm
or methodology (Tracy, 2010). Ethics approval to conduct this investigation was obtained
by Western University Health Science Research Ethics Board (REB) (Appendix D). A
42
written letter of information was given to each participant outlining the study and consent
was obtained from all participants prior to their interview. Prior to the initial interview,
individuals were encouraged to ask questions regarding the study. Participants were
reminded that their participation was voluntary and that they could withdraw from the
study at any time with no penalty. Participants had the option of declining to answer any
interview question. Given the sensitive nature of the interviews, and the possibility of the
interviews triggering memories and emotions, contact information for free bereavement
services in London, Ontario, were available to all participants at the end of each interview
(Appendix E).
All participant names were changed to pseudonyms and identifying information was
eliminated from the data for the purpose of participant anonymity. Confidentiality was
also preserved by omitting salient details about participants, including specific age and
location within the community in the findings, as these might have implied their identity
and made them recognizable to those in the community reading this thesis.
3.5 Data Collection
Data were collected through audio-recorded semi-structured individual interviews
with ten older adults and their caregivers. All interviews were conducted in person in the
participants’ homes, by video conference, or by telephone (13 interviews in home, 1
interview using video-calling, 6 interviews by telephone). Participants were interviewed
individually. All the demographic questionnaires were completed in person. For
participants interviewed in person, caregiver participants completed the demographic
questionnaires when the older adult participants were being interviewed. Older adult
participants were often nearby when the caregiver participants were being interviewed,
but not directly in the room.
Phone interviews were used with some of the participants due their preferences. The
researcher asked that participants be interviewed independently, but had no way of
verifying this was done for phone interviews. The absence of visual cues during the
standard-telephone interviews compromised the ability to obtain non-verbal data from
these interviews and perhaps may result in a poorer interpretation of the responses.
According to Novick (2008), there is a lack of evidence indicating that phone interview
use in qualitative research produces lower quality data than traditional face-to-face
43
interviews. Phone interviews may have allowed participants to be more forthcoming in
disclosing sensitive information. It is likely that the sample size would have been
significantly smaller if interviews were not to take place over the phone.
The researcher developed a semi-structured interview guide (Appendix F & Appendix
G) to facilitate an in-depth exploration of the experiences of receiving palliative care in
the community and caring for a family member who is receiving this care. The use of a
semi-structured interview guide, with open-ended questions, was selected to encourage
the participant to speak freely, while ensuring key topics were discussed (Dilley, 2004).
The interview guide for older adult participants consisted of seven open-ended questions.
Interview probes were used to gain a deeper understanding of their answers to the initial
seven questions.
The following seven questions were asked of older adult participants:
1. What is it like to live with multiple chronic conditions?
2. How do you experience community health care services in your everyday life?
3. Are there any differences in how you experience care throughout your days today,
compared to a typical day before you began receiving palliative care services?
4. Can you describe what palliative care means to you?
5. Can you help me understand how you came to choose home-based palliative care?
6. Are there any additional services that would be useful to you?
7. Is there anything else you would like to share about your experiences?
Given that participants in the palliative stages of their disease often experience
difficulties communicating for longer periods of time, interviews were conducted in
longer length with the informal caregiver to gather more sufficient data. An interview
guide of eight open-ended questions was developed for the older adult participants.
The following eight questions were asked of family caregiver participants:
1. What are your experiences providing care to someone who is terminally ill and
residing in the community?
2. Are there any differences in your caregiving experiences today, compared to a
typical day before palliative care services were required?
44
3. What is the most challenging part about being a caregiver to someone who is
terminally ill? What is the most rewarding part of your experience?
4. What is your definition of palliative care as it relates to caregiving for someone
with dementia who also has a terminal illness?
5. How does the experience of providing palliative care for someone with dementia
change your needs?
6. Can you help me understand how you or the person you are caring for decided to
choose home-based palliative care?
7. Are there any additional services that would be useful to you?
8. Is there anything else you would like to share regarding your experiences as a
caregiver for someone with dementia requiring palliative care?
The length of the interviews and the time spent with each informant type (the older
adult and the caregiver) was contingent on the older adults’ ability and the caregivers’
wishes at the time of the interview. Interviews averaged about half an hour for older adult
participants and about 45 minutes in length for caregiver participants.
In addition to the interviews, each caregiver participant completed a socio-
demographic questionnaire (Appendix H). For the caregiver participants interviewed via
telephone, the researcher read out the questions of the demographic questionnaire and
recorded their answers prior to the start of the actual interview. In qualitative research,
the participant socio-demographic questionnaire is designed to provide background
information regarding participant characteristics and to describe the qualitative sample
(Creswell, 2013).
Field notes were written after each interview. These field notes were kept in a
reflexive journal and contained comments on the researcher’s theoretical, methodological
and personal thoughts about the interview (Polit & Beck, 2008). Examples of field notes
included incidences of crying or other extreme emotion, interruptions in the interviews,
and the authors’ personal reflection on the interview. Notes of what was said before or
after the interview were also recorded. These field notes were used to help better
understand the participants, in addition to the demographic questionnaire.
All of the digitally-recorded interviews were then transcribed verbatim by the
researcher.
45
3.6 Data Analysis
Hermeneutic phenomenology was used to understand the meaning of the lived
experiences of older adults with dementia receiving palliative care in the community. The
goal of analysis was to use the researcher’s preconceived understanding of the
phenomenon of community-based palliative care for people with dementia along with the
information generated from interviews with participants and data obtained from other
relevant sources, to identify participants’ meaning.
The process of hermeneutic phenomenological analysis is iterative (Diekelmann, &
Magnussen-Ironside, 1998). Data collection and analysis occurred simultaneously
(Annells, 1996a, b). The analysis of participant data was guided by Diekelmann, Allen
and Tanner’s (1989) multi-stage hermeneutic interpretative analysis process.
Diekelmann, Allen and Tanner’s (1989) describe their hermeneutic method as
Heideggerian in nature. The Diekelmann, Allen and Tanner (1989) approach was
particularly suited to this study as the sample consisted of dyads and the method aims to
find emergent themes amongst different sets of data.
The Diekelmann, Allen and Tanner (1989) method of analysis involves seven
interpretive steps: (1) reading all of the transcripts for all the interviews to obtain an
overall understanding; (2) writing interpretive summaries and coding for emerging
themes (Appendix I); (3) analyzing all transcripts as a group to identify codes/themes by
first analyzing the older adult with dementia interviews all together, then the informal
caregiver interviews; (4) returning to the transcripts and participants to clarify
disagreements the research team had in interpretation and writing a composite analysis
for each text; (5) analyzing across dyads by comparing and contrasting all transcripts to
identify and describing shared practices and common meanings between the informal
caregiver interviews and the older adult participant interviews; (6) identifying links
between the themes, using patterns; and (7) eliciting responses and suggestions on a final
draft of themes and patterns from the interpretive research team (the thesis advisory
committee members) (Diekelmann, Allen, & Tanner; 1989 in Profetto-McGrath, Polit, &
Beck, 2010, p. 330.).
46
3.6.1 Composite Analysis of the Text
Throughout the entire data analysis process, the individual transcripts and audio-tapes
were revisited numerous times. This helped to further immerse the researcher into the
hermeneutic circle (Diekelmann et al., 1989). An iterative process was used with
multiple rounds of refining the codes until a final coding list was established for the older
adult interviews and the caregiver interviews. Careful journaling about any emerging
themes or ideas was used to maintain an audit trail. The primary researcher took the lead
in the identification of codes at this time. The academic committee members either
supported the analysis or offered constructive criticism. All transcripts were then
analyzed by the researcher and at least one other academic committee member.
As per Diekelmann, Allen and Tanner’s (1989) suggestion, the researchers then
returned to the transcripts to clarify any disagreements of the codes. This helped to
solidify a final coding list for each of the individual analyses, and supported inter-coder
agreement (Miles, Huberman, & Saldaña, 2014). Following this step, feedback was given
from the academic committee to refine the initial coding list that was entered into the
Excel spreadsheet. The researcher used this coding list to code all the transcripts using
NVivo 11 Software©. Using the final coding list and the discussion of possible themes
that the researchers saw to emerge, the primary researcher then wrote an interpretive
summary of each interview (Diekelmann & Magnussen -Ironside, 1998).
To further enhance the validity of the analysis of nine dyad transcripts, member
checks were used. The researcher was unable to get in contact with one of the participant
dyads, despite trying to call numerous times over a three-week period. All member
checking occurred via telephone. The researcher called the caregiver participant and
presented a summary of the main topics discussed in the interview. The researcher then
asked if the summary was an accurate portrayal of their experiences. The older adult’s
construction of their lived experience was mediated through their caregiver. All of the
summaries were reported to be accurate. Participants were also encouraged to share
anything that they would like to further add to their interviews; however, none of the
participants did so. These member checks ensured an accurate portrayal of participant
experiences and helped to establish study rigour (Guba & Lincoln, 1994; Koch, 1996;
Tracy, 2010). Following the member-checking process, the researcher discussed all
47
possible emergent themes for the older adult experiences and the caregiver experiences
with the academic committee to further deepen the understanding of the text.
3.6.2 Discovery of Constitutive Patterns
Through hermeneutic circles of interpretation and shared dialogues, the researcher
then sought out constitutive patterns connecting relational themes across the dyads. All
transcripts were compared to one another in an iterative process. Diekelmann, Allen and
Tanner (1989) recommend following the same process outlined above for all transcripts
to identify and describe the shared meanings that emerge between them all to analyze the
dyads. To do so, the researcher read each transcript line-by-line and entered all of the
codes from each transcript into NVivo 11 Software©.
The use of NVivo 11 Software© allowed the researcher to uncover constitutive
patterns that showed relationships across themes among all the interviews. According to
Diekelmann and Magnussen-Ironside, (1998), the discovery of a constitutive pattern
forms the highest level of hermeneutic analysis. An identified pattern is considered
constitutive when it gives actual content to describe a person’s way of being in the world
(Diekelmann &Magnussen-Ironside, 1998). Constitutive patterns were identified as codes
and elements of the data that could be clustered together through similarity and regularity
and therefore captured different essences of the data. The reflective notes taken
throughout the data analysis were also reexamined at this time to add another layer of
depth to the analysis. Emerging patterns were discussed with the academic committee.
Once agreement was found, these patterns became the themes that describe the shared
participants’ experiences. A final report was written with the themes supported by
verbatim quotes.
3.7. Credibility of the Analysis
Diekelmann, Allen and Tanner’s (1989) multi-step process for analyzing data using a
combination of analysis techniques helped to deepen the understanding of participants’
experiences (Cohen & Omery,1994; Lincoln & Guba, 1985). Madison (1988) proposed a
list of criteria for evaluating the credibility of phenomenological research. While
Madison (1988) believed that researchers should use good judgment rather than rules to
guide a rigorous research process, some of the proposed criteria were used to assess the
48
merit of the data analysis of this study. Among those identified criteria recommended by
Madison were:
3.7.1 Comprehensiveness
Comprehensiveness adapted from Madison (1988) refers to interpreting the interviews
by taking into account the researcher’s and participants’ thoughts as a whole, and not
ignoring any thoughts of the researchers. This was demonstrated in the data analysis
phase through the use of the reflective journal notes and memos.
3.7.2 Thoroughness
A good interpretation of the data must be based upon data that were gathered to fully
represent the various dimensions of the phenomenon and must answer all of the questions
posed within the interviews (Madison, 1988). In this study, data collection ceased only
when saturation was reached and the rich data fully described (1) the experience of
receiving palliative care services for older adults who also have a dementia diagnosis, and
(2) the experiences of their family caregivers. Thoroughness of findings was also ensured
through audio-recording and verbatim transcription of each interview to ensure accuracy.
Authenticity of the rich data was addressed by making every effort to capture the
perspectives of participants in their own words (Patton, 2002).
3.7.3 Agreement
Other researchers or readers of this study must be able to follow how the researchers
of this study came to the interpretation (Madison, 1988). Agreement was strengthened
through simultaneous coding and discussion with the academic advisory committee
members (Miles et al., 2014). To achieve this, the research team worked closely together
to ensure that all co-investigators, including the contacted participants (through member
checking), were in agreement with the endorsed interpretations of the phenomenon,
which also ensured rigour was maintained.
3.8 Situational Ethics
While procedural ethics was obtained at The University of Western Ontario before the
study commenced (Appendix D), additional ethical steps were taken throughout the
research process (Tracy, 2010). This is known as situational ethics (Tracy, 2010) and
ensured that at all points of contact with potential participants and recruitment
gatekeepers (the palliative care providers) were conducted in an ethical manner. This
49
study contained a highly vulnerable population. All efforts were made to protect the older
adult participants and the caregiver participants. For example, all participants were
reminded that they could decline answering any questions that they did not wish to
answer. Participants were also encouraged to ask questions at the start, throughout, and
after the interviews had concluded. During the interviews, special attention was placed on
the older adult participants. If participants began showing signs of difficulty in
participating in the interviews, they were offered to take a break from the interview or the
interview was ended. This occurred with one older adult participant. The participant
began crying during the interview and asked that the interview be paused. The researcher
turned off the recorders until the participant indicated that she wanted to continue.
Confidentiality and anonymity were used throughout the study.
3.9 Reporting
Results from this study will be shared with the Nurse Manager and nurses of the South
West branch of CarePartners who aided in recruiting for this study. One study caregiver
participant also asked for a lay summary of the report. These will be presented upon
competition of the thesis.
3.10 Declaration of Self
In the aim of being a transparent author, it is important that readers are made aware of
my standpoint (Tracy, 2010). I am physically and mentally healthy. Unlike my caregiver
participants, I have not yet encountered providing care to a family member with dementia
nor have I been in close contact with someone who has suffered from dementia. On the
other hand, I grew up in close contact with a family member who had multiple
comorbidities and watched family members serve as her primary informal caregivers.
Much like my participants, I have experience with the challenges of caregiving for
someone during the later stages of their diseases.
I am educated. I have an undergraduate degree in Gerontology from McMaster
University. I have a tendency to focus on the most marginalized individuals throughout
my studies. I always struggled with the idea that the provision of care in one case often is
applied to other cases, especially when considering marginalized groups of individuals.
There was no way to suspend my past experiences and past knowledge as I proceeded
with my study. As a Gerontology student, I was trained to always focus on ‘person-
50
centered care’, as the gold standard. Others may not have found the same results as I
found.
I entered the Masters of Science program at The University of Western Ontario
knowing that I wanted to look at a project dealing with those with dementia. It is less
challenging for me to be open minded about dementia care than it is with palliative care
because I have no personal experience with it. I struggled to recognize the ways in which
this study is a personal topic to me and how my past personal and academic experiences
make me gravitate towards certain ideologies.
The primary reason that this is a personal topic for me is due to my ongoing interest in
trying to improve the circumstances of end-of-life care for marginalized older adults, so
that everyone can achieve dying with dignity, in however they define it. The germ of this
particular interest started during the final year of my undergraduate degree, during an
ethics course discussing the ‘Dying with Dignity’ Movement. For the final course project,
we had to write an ethical debate about whether or not physician-assisted suicide is
ethical. Having always been interested in those with compromised autonomy, I found the
assignment difficult. My interest in autonomy influences my choice to focus on those
with cognitive impairment and compromised autonomy.
While the proposed study is rightfully different from the one I just described, my focus
on preserving and upholding the autonomy for those with limited capabilities remains.
Thinking reflexively, it is crucial for the future readers of my work to know why and how
I approach this research. I am admitting that it is clear that I approached this project
assuming that there are areas of our current palliative care delivery system that need
improvement for those who utilize services with cognitive impairment. I made a
conscious effort to not influence participants’ responses during interviews.
3.11 Conclusion
The purpose of this study was to better understand the lived palliative care experiences
of community-dwelling older adults with dementia and their informal family caregivers.
The primary aim of this study was to ensure that the experiences of these individuals
become known and that their voices be heard. Thus, the study utilized terminally-ill
individuals with dementia and their primary informal caregiver as the only sources of
data, collected through semi-structured interviews. Consistent with the study goals, this
51
study employed a Heideggarian hermeneutic phenomenological methodology that is
grounded in an interpretivist-constructivist paradigm informed by the work of Heidegger
(1996) and Diekelmann, Allen and Tanner’s (1989) multi-stage hermeneutic
interpretative analysis process. The quality of the research study was ensured by
upholding rigour and trustworthiness, as guided by qualitative methodologists such as
Tracy (2010). The credibility of the analysis was confirmed through Madison’s (1988)
criteria for comprehensiveness, thoroughness and agreement.
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4 FINDINGS
The goal of this hermeneutic phenomenological study was to understand the lived
experiences of community-dwelling older adults with dementia who receive palliative
care in the community. Another goal was to understand the lived experiences of their
informal family caregivers. An in-depth analysis of each participant’s story and a holistic
analysis of all findings were completed.
A total of twenty participants were interviewed for this study, consisting of ten older
adult participant/informal caregiver dyads. All older adult participants were in the early
stages of dementia and all were also receiving community-based palliative care for
another terminal illness. All participants were interviewed individually, although their
family members were often nearby. Participants came from London, St. Thomas, Elgin
County and Oxford County. Details about the participants’ socio-demographic
background can be found in Appendix J. The community-based palliative care service
use of the participants is described in Appendix K. In a conscious effort to keep all
identifying characteristics of the participants confidential, this study did not analyze the
participant’s experiences in the context of their conditions and all interview data
presented in this thesis do not have any identifying information.
4.1 Emergent Themes
Hermeneutic thematic analysis of the semi-structured interviews from the ten
participant dyads revealed key themes. The themes for older adults with dementia were
belonging at home and acceptance of the terminal illness. The themes for informal
caregivers were impact of dementia, double strain and home as a source of control over
care. The themes across the dyads were honouring wishes, fear of hospitalization, and
uncertainty.
4.2 The Lived Experiences of the Older Adults with Dementia
Receiving palliative care at home was at the center of the older adults’ experiences.
The older adults wanted to die at home as the home was a source of comfort, familiarity,
and security. The themes of belonging at home and acceptance of the terminal illness
encapsulate their experience.
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4.2.1. Belonging at Home
“This is where I belong” (Older Adult Participant 1)
Older adult participants described their homes as the place where they “belong”. All
of the participants indicated that receiving palliative care at home was very important to
them and a key goal, in terms of care, was for them to be able to stay in their homes for
as long as possible. Older adult participants were extremely grateful to have ability to
receive care in the community. All participants, except one, wished to die at home. All
participants wished to receive care in their homes.
Participants described their homes as a place of comfort, familiarity and their preferred
place to receive their palliative care. Older adult participants’ reasons for feeling as
though they belonged at home, went beyond the physical location of the place to receive
palliative care. This theme includes the subtheme of family as home and familiarity.
In receiving their care in their homes, older adult participants described having a sense
of control over whom they were surrounded with when they were to die. Older adults
described that receiving palliative care services at home allowed them to be surrounded
by those they recognize and love. Given their dementia diagnosis, older adult participants
found being around those they recognize to be extremely important. They stated that
being around their family members provided them with a greater sense of safety and
comfort.
… in the hospital I felt sick because I was around sick people, strangers. At
home, my wife is healthy so I feel healthy except for when the nurses come.
They remind me I’m sick. I want to be home safe around her (Older Adult
Participant 8).
The notion of being surrounded by their family members was key to defining why the
home was the preferred place of the older adults to receive palliative care. When asked
why receiving palliative care in the home and remaining at home was so important to her,
Older Adult Participant 9 explained:
I belong here. This is my house. My family is here (Older Adult Participant 9).
Older adults often compared their experiences to that of being in a hospital surrounded
by strangers.
54
I would rather die now than spend the time in the hospital……I don’t know
those people. They’re strangers. Here my wife is. My pictures are here. My life
was here. I just wish we started this early and that I didn’t waste time in the
hospital with strangers (Older Adult Participant 5).
[Home] is where I belong. I don’t belong in a hospital with the strangers. I
belong at home. This is my house. This is where my family is (Older Adult
Participant 8).
Most of the older adult participants reported that they had wanted their family
members to provide the majority of their care and that this was only possible if they were
to receive community-based palliative care services.
Well now people come to my house so I don’t have to go to them. But now my
daughter can do everything for me instead of them. Because I am home (Older
Adult Participant 10).
Older adult participants were grateful that community-health palliative care
professionals were able to enter their homes and assist their family members with
providing care to them. Older Adult Participant 9 said the following about the community
health-care providers:
Hmm, I like it when they come. They help out my sister. They never hurt me. I
feel better when they leave. They are very nice. I….I … they are very nice. And
I like that they come to help her (Older Adult Participant 9).
Another meaning and reason to why participants wished to die at home was that the
home provided a sense of familiarity and thus, comfort to the older adult participants. The
presence of personal possessions and the familiarity of the surroundings was highlighted
as being important for the older adult participants to be around. Spending some of their
final days at home seemed to prompt familiar and important memories, such as raising
their families in the home. The familiar environment of their home also allowed the older
adults to be more independent.
I raised my babies here. My daughter has her babies here. I need to be home
with my family. My stuff is here (Older Adult Participant 2).
I wish I came home sooner. I didn’t like it there. But we couldn’t. I couldn’t. I
don’t know. I have dementia so I don’t know everything…. But I do know some
things. I know…well I know a lot. I really like this. I like that when I’m home I
can remember where we keep the cups so I can even get my own water (Older
Adult Participant 7).
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4.2.2 Acceptance of The Terminal Illness
All older adult participants acknowledged that they were dying. Throughout the
interviews older adult participants would mention that they were dying, sometimes
multiple times, even though none of the interview questions discussed death directly. An
example of this comes from an interview with Older Adult Participant 5:
Well it means I am dying and there is nothing nobody can do to stop it. And so,
right now, when my heart stops because I am in a hospital…or I mean not in the
hospital, they won’t be able to stop me from dying so I just will. And I’m okay
with that. I said so. My wife said so. It won’t be today or you know, it could be.
It may not be this year. So with palliative care I can...I can feel I can stay like
this for years...here at home (Older Adult Participant 5).
Participants described that once they came to terms with the fact that their conditions
were incurable and a palliative care plan was in place, they were able to better accept the
care provided to them by health care professionals and their informal family caregivers.
And I like to be in control, but other than that, you know what, the services that I
get at my house, I can’t complain. It, it is wonderful. And they seem to go out of
their way and they seem to be caring and professional. I know I need them
because I am dying and it’s palliative. And they are quite helpful, so to be honest
with you. I have no complaints… for this situation because I can’t do it for
myself anymore (Older Adult Participant 1).
Older adult participants mentioned that by receiving palliative care in their own homes
and communities as opposed to being in an institution they felt less ill. This helped them
to accept their terminal illness. Accepting their terminal illness assisted them in living
with a higher quality of life. Many of the participants believed that they would get sicker
if they were to re-enter an institution, particularly a hospital.
In addition to feeling less ill, older adult participants described being less fearful of
death now that they are receiving palliative care services in their home. This also aided in
their acceptance of their prognosis. Older adult participants credited the presence of the
community-based palliative care specialists as one of the largest reasons for lessening
their fear of death. They described that having a health care professional visit and educate
them on the status of their condition(s) made them less fearful of the future. The
following excerpt from the interview with Older Adult Participant 6 describes how the
56
presence of a community-health nurse assisted her with accepting her illness by lessening
her fear of death:
But I like it when they come. They explain things. And I am less scared because
…when I forget they tell me it’s okay and they are like doctors, right so it makes
me less scared. I love not having to go to the hospital as much. Or… well before
I would have problems breathing but not want to go to the hospital, so I would
just wait and then an ambulance would come maybe two or three days later, but
now I know they are coming so I’m less scared that I’m just going to die. I know
when she comes she will check or she will tell my husband or son things are
getting bad and when I should expect to go. The nurses make me feel less scared
of death (Older Adult Participant 6).
4.3 The Lived Experiences of the Informal Family Caregivers
The informal caregiver participants in this study described their experiences of
providing care to their terminally ill family member with dementia in the community as a
sense of duty, love and obligation. The informal caregiver interviews revealed three
themes: the impact of dementia-related impairment, double strain, and the home as a
source of control and personalized care.
4.3.1 Impact of Dementia
When asked about the role dementia plays, if any, in the experience of providing
palliative care to a family member at home, Caregiver Participant 6 responded with “Well
I just want to say I think it is easier if they have cancer”. Nine of the ten caregiver
participants described that the added diagnosis of dementia made providing palliative
care in the community to someone who is terminally ill harder. Furthermore, when asked
if there was any community-resource or added service that would make the experience of
providing care easier for themselves, as informal caregivers, Caregiver Participant 5
responded with, “take the dementia disease away”. It was clear that the impact of
dementia made the experience of providing palliative care in the community unique to
these individuals. This theme was further broken down into three subthemes: home-
bound, lack of knowledge, and finances.
Perhaps one of the biggest changes experienced by participants was the experience of
becoming home-bound. Statements, such as “We’re both stuck at home” (from Older
Adult Participant 9) and “I’m home basically 24/7, pretty much” (from Caregiver
Participant 5) highlight the change experienced by the participants. The informal
caregiver participants believed that they spent the majority of their time alone because the
57
dementia diagnosis made it difficult for them to leave their loved one alone or take them
out.
But before it was different. She could do things. She could remember. She
wasn’t living here. I would only have to go to visit her to care for her. To a
point. She could do things. She would eat. She could take care of herself. She
wasn’t having to bug me…. Because of the dementia I can’t leave her to go out
at all (Caregiver Participant 10).
The arrival of a health care professional to their home was acknowledged by
caregiving participants as an opportunity to be temporarily relieved of their caregiving
duties. One participant explained that due to their family member’s dementia diagnosis,
they felt uncomfortable to leave their family member home alone during this time.
Caregiver Participant 5 explained that sometimes without her present the Personal
Service Workers are unable to perform the required care activities:
Like, he won’t let them do it at all. Um…. Well I don’t, I don’t mind doing it.
But it is quite time consuming. It is like you have to live two lives- their’s and
your own. ….You can’t communicate with them always. You can’t get them to
understand what they have to do and what you have to do to help them even
when others are there to do it (Caregiver Participant 5).
The inability to have a break from their caregiving situation was a major obstacle in
the life of the caregivers. The caregivers longed for time alone and yearned for the
opportunity to spend more time outside the house. Caregivers felt that they were unable
to take time for themselves as they described caring for someone with dementia,
“…pretty much like having a young child around that you have to watch 24/7” (Caregiver
Participant 8).
Caregiver participants felt that they lacked knowledge about dementia. Caregiver
participants felt that the community-based palliative care specialists also lacked
knowledge of dementia at the end-of-life, and did not fully understand the behaviours
typical of someone with dementia. As a result, the caregiver participants were unable to
receive information about dementia from the health care providers.
You know, just to talk to some other people who are going through the same
thing in their lives. Just because I don’t know what I am doing is good enough,
or if what I am doing is normal compared to other spouses, so you know, it
would be nice to talk to other people going through the same thing and who
maybe know about dementia, because really I don’t know if the staff know.
They can’t figure it out either (Caregiver Participant 3).
58
Without this knowledge, caregiver participants felt guilty for neglecting the dementia-
portion of the family member’s health conditions.
…he was probably, you know, he was probably coming down with Alzheimer’s
for years before I really knew because of the cancer. I just assumed he was
violent because of that sometimes. I just thought, that was what is happening to
him, I did not think dementia. I didn’t know (Caregiver Participant 9).
Several participants experienced a change in financial status or experienced a financial
burden due to their family member’s dementia diagnosis. Caregiver participants
expressed the inability of them to remain in full-time employment because “it is pretty
much 24-hour care” (Caregiver Participant 8). For many of the informal caregivers there
was no other family and community supports available to help them take care of their
family member. Caregivers discussed the high costs associated with caring for someone
with dementia, given that there were limited resources and support in the community to
assist them with taking any respite from their caregiving duties. As one caregiver
described:
That is another thing. It is expensive. It is expensive to care for someone who,
you know, has dementia and all those needs. Dementia makes it more expensive.
But the other stuff is expensive too (Caregiver Participant 7).
With almost any mention of financial burden, participants were quick to express that
they were thankful for the services that they receive through the CCAC and the fact that
this care was largely covered by the government.
4.3.2 Double Strain
Several informal caregiver participants reported experiencing great stress due to
providing care for someone with a terminal illness and dementia. “I am much weaker. As
a person. I am more tired. It has taken a lot out of me.”, was the response Caregiver
Participant 1 stated when asked how his life has changed since beginning to be a
caregiver to someone with dementia who is receiving palliative care services in the
community.
The informal caregiver participants in this study described that the added complexity
of having their terminally-ill family member also having dementia caused them to
experience two co-existing types of burden. First these caregivers had to deal with all the
emotional and physical challenges of caring for an individual throughout the dying
59
process. Secondly, informal family caregivers had the added pressures of caregiving for
someone with dementia. Two subthemes reflect the consequences of double strain:
physical and emotional strain.
Due to the added challenges of caring for someone with dementia, family caregivers
reported being physically exhausted by their caregiving ongoing duties. As a result of this
exhaustion, the physical health of many participants was affected in a variety of ways,
including a lack of sleep, as expressed by the following caregiving participant:
I find that, um…when you’re doing this 24 hours a day and you just get a person
who comes in maybe twice a day for 3 minutes, it just isn’t enough… So I just
don’t have the time to sleep. I am not sleeping at all. Between that and the
laundry and it is just some of the same thing. So I guess that. But I mean, I
wouldn’t change anything to have my mum at home. But I just need to sleep. It
is hard...but I would ask for more but I cannot qualify for more. It is pretty much
just the same thing (Caregiver Participant 10).
Additional respite time was considered vital to help the caregivers sustain their ability
to provide care to their family members. Caregivers prioritized respite care despite the
high costs of using respite services. As Caregiver Participant 7 articulated:
Well, during my 4-hour respite, I try to do things for myself. I will go and get a
massage and or I’ll, you know, get a pedicure. So I think that, that makes me
cope with it a little better, I think. Yeah. I have no choice. I…I really have to go
and have my respite or I couldn’t do this. I have to do that. Every three months.
But yeah, that does cost a lot of money (Caregiver Participant 7).
Caregivers struggled with having to leave their family member so that they could
receive some respite. Caregivers described concern over taking their family members to a
Day-Away program or a long-term care home to receive temporary respite due to
concerns over their family members’ dementia-related behaviours. Caregivers sought out
respite when they could at home, such as when their family member was asleep.
And some days, he may sleep. Like some days if he is in pain, he will sleep for
most of the day. And that isn’t bad for me. That is my respite care then so I don’t
have to take him somewhere. That is when I will sit down and read a book, take
a break. (Caregiver Participant 5)
The caregivers described not being prepared for the emotional impact of caring for
their dying family member with dementia. Caregivers described their concern for the
welfare of their loved one as stressful. This emotional stress was caused by many things,
including, their worries about leaving their care receiver alone and about his or her safety
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and their concern over their care receiver’s present levels of pain. All of the caregivers in
this study identified as being the primary informal caregiver and described caregiving
with little support from extended family, or additional services in the community. This
resulted in the caregivers being emotionally exhausted.
When my brother was here visiting with his family to [Location], I had some help
and was able to let go of the emotional stress of her previous diagnosis but that
was 2 years ago. And then my mother’s sister is in Toronto and I have a brother
who is in [Location] for 6 months out of the year. Cousins who are in [Location]
…. See, so it is just me. It is very hard to get any type of additional help. This
makes it worse. No one asks if I am okay. I find it to be a very long and lonely
road. Like I don’t even get to talk a lot. Like I don’t even know if people think I
have much to say. So I would say, more emotional support. Having family and
friends is very important. And I don’t have that. I’m exhausted...emotionally
(Caregiver Participant 10).
Moreover, caregiver participants described being concerned over the lack of time they
have with their family member. Caregivers described being concerned over time for two
reasons: their family member’s dementia resulting in a declining ability to communicate
due to the disease and time in terms of their prognosis due to their terminal condition. As
one participant described:
Um…yeah…the lack of time, yeah. But also time to go out. I mean it can really
go both ways. Time is definitely one of those things. The lack of time with him.
You know, you know he is going to die. You know he is going to get worse with
dementia too. You know there is nothing to make it better. So you know, you
just kind of always have to wonder now how much time do you have so I took
him home. Because you always have to wonder about time in death but also
before he gets bad enough that all forms of communication is cut off between us.
(Caregiver Participant 8).
An additional form of emotional stress for the caregiver participants was the guilt they
felt for not being able to separate the dementia diagnosis from the terminal illness.
Dementia, co-existing with another terminal condition made caregiver participants feel
frustrated at their inability to best care for both conditions. In the example of Caregiver
Participant 10, she described recognizing that having dementia complicates the feeding of
patients, yet did not know if her family member’s eating habits were due to the dementia
or a result of her jugular bleeding. She described feeling guilty for not even knowing
where to turn to find information to help her care for her family member. As
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aforementioned, participants felt that they did not have the knowledge on how to best
care for persons with dementia. Caregiver Participant 10 described her experience with
feeling this way:
So there is always lots of confrontation and questioning and guilt….
Like…like…like I said it is very, very hard. But not so much…like I said, it is
very hard to figure out what is causing her not want to eat- is it the jugular, the
dementia, the cancer? Or the stroke? It is just all very frustrating. I cannot figure
it out.
And she had a mini stroke, maybe that maybe caused the dementia so she
doesn’t even want to eat anymore. So because of the stroke…well now, it is
always question, question, question, “Is it the jugular or is it the blood clot or is
it the dementia?” Do I read up on dementia and eating or the jugular or what?
Where do I go to look for information? I feel bad that I can’t just look it up.
4.3.3 Home as a Source of Control Over Care
While participants experienced a “double strain” over their responsibilities to care for
an individual who has a dementia diagnosis and another terminal condition, they
perceived that receiving palliative care services at home allowed them to have a better
sense of control over the quality of care their family member receives. A sub-theme of
this theme is personalized care.
Some informal caregivers described control in terms of being able to have more
authority over their family member’s care plans at home. One caregiver described
community-based palliative care in the following way:
Well, for the patient…well for the patient it provides…it provides um, comfort
and trust and most important dignity to be around those they recognize. For the
caregiver…it…it is just the ability to spend time with the patient…control, too
… ugh…better interactions with the patient. It is more hands on care now. In a
certain way, you have much more control over the care plan than compared to
the hospital (Caregiver Participant 6).
The caregivers found it easier to provide care to their family members at home
because they could easily see them. For example, they do not have to drive to visit their
relative during set visiting hours like they would have to if their family member was still
in an institution. As Caregiver Participant 7 shared:
And then she went and developed the Alzheimer’s. She …Then they kind of just
went and put her in a little room…And that kind of really bothered me. And it
was like for them. Like just because she is not there in her brain doesn’t mean
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she isn’t important. So we decided to just say “okay, I’ll quit my job and I’ll take
her home”. So…um…yeah. I’ve been doing it for three years now. So I can see
her when I want. Not when they say.
Interviewer: And so do you think the care that she receives now at home for the
community health organizations and with you is better than when she was in the
retirement home?
Yeah. One hundred per cent. I control it here (Caregiver Participant 7).
Informal caregiver participants believed that they could provide their family member
with better care at home than they would receive elsewhere. Informal caregivers believed
this was because they could personalize their family member’s care at home. They also
believed that the community-based palliative care providers offered an individualized and
more personalized approach. Informal caregivers described long-term care homes as
being unable to provide personalized care. For example:
But they [Long-term Care Home] can’t give him individual care. There are just
too many...And so, I think he gets a better quality here. A better quality of life,
too, than if he was in a nursing home. (Caregiver Participant 5)
And you can react to the patient’s needs…um…I would assume quicker.
Than...than…and I would just assume you are able to understand the needs
better as a family caregiver than at a hospital where doctors do all this. And that
is not to say that the staff within a hospital are incapable or not able to provide
care…but it is just more…personal at home. (Caregiver Participant 6)
Some of the caregivers recommended improvements be made to the CCAC's current
model of care delivery in South Western Ontario. The caregivers believed that the
allotted time given to each informal family caregiver for respite care and the amount of
physical care provided to the care recipient be modified depending on the situation.
Participants were concerned over who would care for their family member when they are
unable to do so and did not qualify for extra care from the CCAC. The caregiver
participants reported using informal supports, such as support from friends or neighbours,
in situations when they could not access additional care from the CCAC and were unable
to provide care themselves.
For example, Caregiver Participant 5 described a time when she required surgery but
was unable to access more health care services from the CCAC. She was required to as
her daughter for help:
63
I just recently had two surgeries in one week. And that was the 12th and 14th of
February. I had a trabeculectomy on my eye and I had a carpal tunnel surgery on
my left hand. And it got really bad. And I had to get my daughter to come and
stay. I couldn’t get anyone else to come. To stay like 24 hours. I still had to look
after him…And I wasn’t able to…And so, she…she stayed with me for three or
four days, while she even could. But I mean, it made it really hard to do those
things. And recovery. And as soon as I was able to do anything at all… I mean I
was washing him with one hand. (Laughing)
Caregiver Participant 7 described a comparable situation. In her interview, Caregiver
Participant 7 described a time when son required a consultation for an emergency surgery
and she had to seek help from a neighbour who was also an informal caregiver, as she
was not able to change her appointment time with the personal support worker (PSW) she
receives through the CCAC.
…to see if he needed surgery on his arm. And now I was like ‘oh no, now
what?’ And so I had someone in the community stay with my mother-in-law.
Because when I called the PSWs and they said they could only give me that
time. But it wasn’t during my appointment that I needed her to come and help
me. So there’s the lady in the community who did the same thing I am but with
her husband….So I said I kind of feel bad that this lady in the community is
coming here, I said ‘during your respite time’ but then she said ‘yeah but I don’t
have anybody’….Um…and then it kind of feels bad that you know there isn’t a
system in place to deal with these kinds of emergencies.
4.4 Emergent Themes Across Dyads
While the experiences of the older adult participants receiving palliative care services
in the community and the experiences of their informal family caregivers who help
facilitate this care differ, three shared themes emerged out of their lived experiences.
The shared themes are honouring wishes, fear of hospitalization, and uncertainty.
4.4.1 Honouring Wishes
Older adult participants’ desire to remain at home for as long as possible, and
caregiver participants’ wishes to keep their family member home for as long as possible
were apparent across all the interviews. Older adult participants felt that their end-of-life
wishes to receive care at home were being honoured. Each older adult participant said
that their wish to have this care be delivered at home was extremely important to them
and their family.
Yeah. That I won’t get better or they won’t try to keep me alive with a machine.
So then as soon as I found that out, I said “take me home”. But I couldn’t just go
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home. So they said they’d send someone once a week. And that’s it. This is
what I wanted and because of my wife and the people who come I can. This is
what I want. My wish is to be here. I got my wish (Older Adult Participant 5).
Similarly, caregiver participants perceived receiving community-based palliative care
services and taking on a caregiving role for their family member was a way of honouring
end-of-life wishes. Informal caregiver participants discussed doing anything possible to
ensure that their family members’ wishes were granted including quitting their jobs,
relocating, and/or sacrificing their own family. To all the caregivers, having their family
members’ wishes honoured was worth these sacrifices. The caregivers reported that
grieving would be more difficult with the added burden of guilt over not letting their
family member receive care in the community, as per their wishes.
And I think that for me, this all makes it easier for when she does die because I
will be able to look back and be proud knowing that I did everything to grant
her, her wishes, support her life, support the quality and I won’t have any
regrets. Right? I will never have to be like “oh I wish I did more for my mom, I
wish I did this or that”. Right? I never will have to. I will know that I did
everything. (Caregiver Participant 10)
4.4.2 Fear of Hospitalization
All of the older adult participants mentioned being in a hospital prior to receiving
palliative care services in the community. The older adults did not want to return to the
hospital after receiving care in the community. Some reported that they would rather die
sooner than receive care in a hospital.
I want to die at home. I would rather die than go to the hospital again. Like when
they cut my…my…my foot…Yes. I felt so bad there. I wanted to die. They just
came in. They just said things. Again to my daughter (Older Adult Participant
7).
At the hospital, I thought I was going to die. But at home even if I am sicker or
you know I can die. But I am at home. I want to be home even if I die sooner
here (Older Adult Participant 10).
The older adult participants were more fearful about returning to the hospital because
they did not want to be away from their families or homes. Caregiver participants were
also worried about their family member returning to the hospital, but for different
reasons. The caregiver participants believed that the care they could provide at home to
their family members, in conjunction with the help from the community palliative care
65
specialists, was better to than the care that could be provided in an institution. Almost all
of the caregivers interviewed mentioned poor treatment outcomes after their family
member had been in either a hospital.
I go away. Well I put her away. And she always comes back with bed sores.
She’s dehydrated. She lost weight. And then it takes me about a month to get her
back to where I usually have her (laughing). Because when I have her at home,
she has never had a bed sore from me. Never. Ever. (Caregiver Participant 7)
Caregiver participants were fearful that hospitals took away their family member’s
dignity.
I don’t think they understand that, doing that takes away his dignity. Or what.
(Caregiver Participant 5).
I just know they couldn’t look after [Older Adult Participant 9] like the way I
could. The way she is sometimes. They would have to give her more pills. They
sedate her. Its undignified. (Caregiver Participant 9).
4.4.3 Uncertainty
While the care provided by the CCAC met their needs now, both older adult
participants and caregiver participants described being anxious about what the future
held. Due to the unpredictability of the dementia disease trajectory, older adult
participants were fearful that their diagnosis would progress to the point, where the
services provided by the CCAC would not be enough for them to continue to receive all
their care at home. One older adult participant described his concern as such:
Well, I can’t do things for myself much. Like I can’t even take my pills. My
wife has to hand them to me. It’s not because I can’t. It’s just to make sure I
don’t forget. Because if I forget, then I can get really bad. But one day I may
forget more. And well, when that happens, if I am even alive well then maybe I
have to go somewhere. Dementia makes it hard for me to know (Older Adult
Participant 8).
Informal caregivers also discussed the uncertainty of the future. Caregivers largely
described how they might not have been able to attend to their family member’s wishes
to remain in the home later as their condition progresses, particularly their diagnosis of
dementia. They discussed they may have to put their loved one in an institution despite
their wishes if they are unable to care for them. As one participant explained:
66
I have no intentions of ever putting him in a nursing home. I think that unless it
got to the point where I absolutely have to because he gets violent. (Caregiver
Participant 5).
The caregiver participants in this study found themselves acknowledging that the
terminal condition may take their family member’s life prior to the dementia diagnosis
getting worse. Caregiver participants felt that if it was just the terminal condition they
would have to worry about, there would be less concern about the uncertainty of their
family member passing away at home.
Because of the dementia. It is really also means that people cannot catch things
earlier. So people actually get worse. You don’t know they are in pain. They
hurt. People with dementia…
We just don’t know what is happening. I think that it needs to become
…well…something that is becoming more and more present in society and it is
becoming scary. It’s scary thinking that one day maybe she’ll be so bad that I
can’t take care of her. I want to. I pray that the cancer gets me to that point
where the dementia gets bad enough that I can worry about it. It’s hard. I am
lucky to do this right now. (Caregiver Participant 10).
4.5 Conclusion
In conclusion, participants in this study provided an in-depth understanding of the
experiences of individuals with dementia and their informal caregivers who are receiving
palliative care in their homes within South-Western Ontario. All of the participants in this
study were grateful for the services provided to them by the CCAC and were satisfied
with the care provided in-home. Many caregiver participants felt they would not have
been able to honour their family member’s wish to die at home if community-based
palliative care services were not available to them. Similarly, older adult participants
were relieved that such services allowed them to stay in their homes and with their
families for as long as possible. Caregiver participants identified sources of strain, such
as the challenge of balancing the demands of caring for someone with dementia and
caring for someone with a terminal illness, as key to their experiences. The interviews
also revealed the combined experiences of having a fear of hospitalization and a deep
worry about uncertainty of the future. Caregiver participants and older adult participants
described wanting to be able to be home for as long as possible, but recognize that
because of the unpredictable trajectory of dementia, they may not be able to do so.
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5 DISCUSSION
The purpose of this study was to better understand the lived experiences of
community-dwelling individuals across South-Western Ontario who were receiving
palliative care services due to a terminal illness, in addition to having a dementia
diagnosis. This study explored the experiences of these patients and the experiences of
their family caregivers.
This thesis chapter will discuss the central themes of this study, including their
relation to the current literature. The study limitations and strengths will also be
discussed. Recommendations and implications for future practice and research directions
will also be presented.
5.1 The Older Adult Participants’ Experiences
All the older adult participants in this study described feeling as though they
‘belonged’ at home and that being home made it easier for them to accept their terminal
illness. Several other authors also found that most individuals prefer to die at home with
their family members present and in a familiar surrounding, with the majority of care
being provided by their willing family (Canadian Hospice Palliative Care Association,
2006; Stajduhar & Davies, 2005; Wilson et al., 2009). Stephen (1991) states that dying
persons and their relatives should be asked about what they consider to be a good death.
This present study reiterated these findings, revealing that dying at home, with their
family members present is what makes a good death for the older adult participants.
Older adult participants had a particular bias towards dying at home that might have been
due to patients’ personal investment in attaining this end-of-life goal. Older adult
participants in this study had others involved in their care—both professional and
informal carers—presumably allowing the mobilization of resources to fulfil this wish to
die at home. The influence of social factors and ethnicity on place of death, however, can
also explain why these particular individuals were more likely to be able to pass away at
home. For example, Koffman et al. (2004) found that many people from ethnic minorities
feel they are not provided with enough choice about where they are able to pass away,
unlike the Caucasian participants in this study.
Consistent with the findings of Gott et al. (2004), the home for all the older adults
represented more than a physical space; it was also symbolic of their family, familiarity,
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and memories. Older adults described their homes as places where they raised their
children and grandchildren, were able to spend quality time with their family members
and friends and were able to do a better job at remembering their surroundings, given
their dementia diagnosis. It is therefore important to move beyond thinking of the home
as the preferred place of death for simply the physical location. Gott et al. (2004) suggest
that understanding the reasoning behind why older adults prefer to receive their palliative
care at home provides an opportunity to help older adults unable to receive palliative care
at home incorporate items, such as familiar objects or family photos into institutional
settings, ultimately making them a more “homely”, enjoyable place to be (p. 465).
Individuals with dementia are rarely given a terminal diagnosis and often there is a
lack of understanding about the terminal nature of dementia (Sampson, 2010). People
with dementia are less likely to be referred to palliative care teams, as it is not seen as a
terminal condition until the late stages (Ahronheim et al., 2000). This raises greater issues
for individuals with dementia but no other terminal illness as dementia is often not
viewed a terminal illness. These individuals may not receive palliative care, which aims
to provide comfort for the terminally ill, until death is perceived as imminent (Sachs et
al., 2004). A critical first step to enrolling in palliative care is to identify a patient as
terminal, as this represents a barrier for people with dementia (Sachs et al., 2004).
Individuals with dementia often pass away from other conditions than dementia itself,
making it difficult for families and clinicians to view dementia as the sole proximate
cause of death for individuals with dementia. None of the older adults in this study
identified dementia as the condition taking priority in terms of care.
The term palliative care carries a stigma for patients and their caregivers, who regard it
as synonymous with impending death (Zimmermann et al., 2016). Researchers have
argued that palliative care should be discussed early on in the dementia disease trajectory.
This may ensure that patients would receive a full spectrum of supportive care, offered to
improve their quality of life from the moment of diagnosis through the course of illness
(Cherny, 2009; Volicer, 2005; Zimmermann et al., 2016). Professionals and family
members have difficulty viewing dementia as a terminal illness, and research suggests
some clinicians are reluctant to discuss palliative care at the early stages of the illness
because of the stigmatization associated with palliative care (Sachs et al., 2004). Public
69
education is critical for addressing the appropriateness of a palliative care approach for
persons with dementia, and lessening the stigma associated with palliative care.
Clinicians are also urged to integrate palliative care into routine dementia care. As
Zimmermann et al. (2016) argue, stigma around palliative care will persist if palliative
care is recommended at the late stages of disease trajectories, after curative or life-
prolonging treatments are deemed ineffective or undesired. Snow and colleagues (2009)
discovered that physicians referring patients frequently for palliative care helped
individuals be better aware of the options that resulted in better patient outcomes across a
variety of measures.
Given this body of research, patients with early stage dementia may not receive the
care they want or the opportunity to receive their care in the place they want to die. All
participants in this study were referred to palliative care due to their other terminal
condition and not their dementia diagnosis. It is a great possibility that these participants
would not have been able to access palliative home care services if they did not have an
additional terminal illness. Prognostic indicators, such as functional dependency and
recurrent hospitalizations have been developed to help identify individuals with dementia
and other terminal conditions who may require palliative care (Sachs et al., 2004). It is
recommended that clinicians use these indicators for when palliative care would be
appropriate.
The Canadian Hospice Palliative Care Association (2013) states that there is a large
prevailing myth in Canadian society that palliative care accelerates death, often perceived
as being due to foregoing treatments. This means that the goals of palliative care remain
unclear for many Canadians. For individuals with early stage dementia and their family
members being told about palliative care early on in their disease trajectory may be
troubling. This option may not be well-received if it is associated with an early-death. In
this study, all older adult participants were aware of their limited life expectancy and
acknowledged that they were dying. Some participants described their condition as being
incurable, whereas others simply described that they were approaching death. None of the
participants described a hope of being cured. This suggests that older adults with mild
forms of dementia are similar to those without dementia in that they are intellectually
70
aware and accepting of their terminal condition(s) and are able to adjust their attitudes
and ultimately, their lives accordingly.
According to the 2014 Annual Report of the Office of the Auditor General of Ontario
(Ministry of Health and Long-Term Care, 2014) there are no minimum palliative care
specific education requirements for physicians or nurses providing this care. To date, this
still remains true. A lack of knowledge related to palliative care has been found to
contribute to decreased quality of palliative care for those with dementia (Chang et al.,
2009). Previous research, such as that conducted by Sachs et al. (2004) have argued for
the need for more dementia-specific training for health care professionals. These authors
assert that implementing these changes will improve the delivery of palliative care to
individuals with dementia and raise awareness about dementia in the wider community.
The goals of palliative care require a professional readiness of clinicians to allow their
patients to make decisions that reflect their wishes. Research has shown that when
patients have the knowledge and access to palliative care, their perceptions of the dying
process changes and they are more likely to consider a palliative approach to care
(Volicer, 2005). If physicians are not educated on palliative care, those with dementia
who may require these services are at a disadvantage.
5.2 The Family Caregivers’ Experiences
All the family caregivers in this study identified the impact of dementia, the ‘double
strain’ they felt and their need to maintain control as being central to their experiences.
Ory and colleagues (1999) found that caregiving has greater effects on caregivers of
individuals with dementia than caregivers for individuals without dementia in a variety of
important domains of living, including social isolation and finances. Results of this study
also support previous research findings stating that there is an associated burden with
informally caring for a palliative family member at home (Hudson, Aranda, &
Kristjanson, 2004; Linderholm & Friedrichsen, 2010; Stajduhar, 2003).
Findings from a study conducted by Smale and Dupuis (2004) found that caregivers
of patients with dementia overwhelmingly reported impacts to their social lives. Such
impacts included participating less often in social activities and lessening their
involvement in group and other organized activities (Smale & Dupuis, 2004). The
caregivers in the present study experienced objective burden because they felt that the
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demands of caregiving resulted in them being unable to leave their homes and continue
social relationships. Studies have found that as dementia progresses, caregivers give up
activities to spend more time providing care to their family members (Meshefedjian et al.,
1998). The close ties to one’s family member with dementia may impose a greater stress
burden on family caregivers (Annerstedt et al., 2000). Similar to the findings of
Mahoney et al. (2003), the caregivers in this study were concerned for the wellbeing of
their care recipient even when they were not performing specific caregiving tasks.
Spouses have been known to justify their caregiving burden in terms of role obligation,
whereas adult children may believe that their caregiving responsibilities are unfair (Smale
& Dupuis, 2004). Male caregivers may be able to keep a greater emotional distance from
their caregiving tasks whereas female caregivers may feel greater feelings of guilt when
not providing care (Kaye & Applegate, 1993).
Gott et al. (2012) posited that community health care professionals’ inadequate
training about late-stage dementia may reinforce the tendency to give responsibility to
others. This often places additional burden on family caregivers. All of the family
caregiver participants believed that the palliative health care specialists who helped them
deliver palliative care to their family member lacked dementia-specific knowledge and
thus, they too, did not have the proper information about dementia. The participants in
this study experienced similar feelings to caregiver participants in other studies who felt
they were unprepared for their caregiving duties and responsibilities to those at the end-
of-life (Bee, Barnes, & Luker, 2000; Stajduhar, 2003; Stajduhar & Davies, 2005). Staff
who are untrained or uninformed about palliative care for individuals with dementia
represent a significant barrier to accessing palliative care (Ryan et al., 2011). Helping
patients and their families understand the nature of illness and prognosis is a crucial
aspect of palliative care (Volicer, 2005).
All of the caregiver participants felt that the community palliative care workers were
often aware of palliative care for individuals with dementia, but were not trained in how
to deliver it. This is consistent with findings of previous studies (Hirakawa, Kuzuya, &
Uemura, 2009; Volicer, 2005). Educational interventions have been found to be effective
in providing caregivers with greater knowledge on how to manage behavioural problems
for persons with dementia (Buckwalter et al., 1999; Chang, 1999). This increase in
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knowledge can decrease caregiver burden related to dementia-related problems (Smale &
Dupuis, 2004).
A review article by Chang (1999) indicated that most caregiver intervention studies
use support programs or respite care to help homebound caregivers. Informal caregivers
need to be relieved from their caregiving duties occasionally in order to restore and
encourage their ability to continue caring for their family members (Smale & Dupuis,
2004; Schulz & Williamson, 1991). Individuals with supportive social relationships are
happier, healthier and report less caregiver burden than those who are socially isolated
(Schulz et al., 2003). The costs of respite care were identified by most of the family
caregiver participants as a barrier to seeking support. In Canada, patients and their family
caregivers bear the financial costs associated with palliative home care (Canadian
Hospice Palliative Care Association, 2006). In a 2014 study conducted with Ontario
caregivers of individuals with dementia, researchers found that almost half of caregivers
described monthly expenses to be greater now that they were caregiving for someone
with dementia (Smale & Dupuis, 2004).
Due to a lack of adequate support, all participants in the current study reported being
physically exhausted and in dire need of additional respite time, although they could not
afford it. This finding echoes the conclusions of prior research that indicate feelings of
deteriorating health were the most significant predictor for caregiver burnout when caring
for someone with a terminal illness (Almberg, Grafström, & Winblad, 1997). The
caregivers in this study were in a unique situation as they were caring for someone with
dementia who also had a terminal illness. The caregivers had to emotionally deal with
coming to terms with their family member’s terminal diagnosis as well as their diagnosis
of dementia. Proot and collaborators (2003) postulated that caring for a terminally ill
individual at home requires balancing between dealing with their caregiver duties and
coping with their family member’s terminal illness. As the caregivers in this study
described, the care demands required of them are onerous and the emotional stresses are
high as they grieve their family member’s impending death and face an uncertain future.
Prior research has found many family members do not identify themselves as requiring
support, focusing instead on the dying individual, hindering their acceptance of obtaining
support (Stajduhar, 2003). Unmet caregiver needs can lead to prolonged grief, increased
73
use of health services, caregiver burden and decreased quality of life (Stajduhar, 2003).
Woods, Beaver and Luker (2000) concluded that palliative care health professionals did
not acknowledge the needs of the family caregivers in palliative care. As the palliative
philosophy of care involves supporting the best possible quality of life for patients and
their families, additional support is needed for caregivers. Earlier studies explain how
informal caregivers receive little practical assistance to support them in their palliative
caregiving duties (Cain et al., 2004; Keefe, 2011). Little is known about the most
effective intervention for supporting family members providing palliative care.
Participants had the added challenge of caring for someone with dementia, leading to a
‘double strain’. Caring for individuals with dementia creates special challenges with
respect to communication barriers, pain control and the need for vigilant care (Schulz et
al., 2003). Consistent with findings in other studies (Smale & Dupuis, 2004), this study
found that caring for individuals with dementia was physically exhausting and full of
emotional and financial burdens for caregivers. An important policy question is how to
best develop interventions that maximize the well-being of caregivers of individuals with
dementia as well as the comfort of the individual with dementia for whom they are
providing care.
All of the older adults in this study explained that being able to care for their family
member at home gave them a better sense of control over their situation. In accordance to
the control theory of aging, these participants sought to obtain control of their
experiences by controlling the place they receive their palliative care. The mere belief
that one has control over uncontrollable events is linked with ease of coping with an
undesirable circumstance easier, such as a terminal illness (Redding, 2000). Individuals
exposed to stress and illness cope better and exhibit better physical health if they feel
they have control (Redding, 2000). Studies describe the importance of maintaining
control by patients or their appointed surrogates at the end-of-life (Redding, 2000).
Caregivers in this study described doing absolutely everything they could for their
family member and that the care at home was more personalized than it would have been
in an institution. Caregivers were concerned about the care their family members would
receive in an institution. Caregiver participants in this study had a particular bias against
long-term care homes. Many researchers have found that families experience feelings of
74
guilt when placing a relative with dementia in a long-term care facility (Forbes et al.,
2000; Schulz et al., 2004; Stajduhar, 2003). Thus, caregiver participants in this study may
have had a bias against long-term care homes as an emotional response to their fear that
they may not be able to continue to care for their family member at home. Family
members often fault long-term care facilities as residents with dementia continue their
decline towards greater frailty as a result of the underlying disease processes (Schulz et
al., 2004). Many family members may have unrealistic expectations of long-term care
facilities if they do not have a comprehensive understanding of dementia (Schulz et al.,
2004). Additionally, family members may have expectations of care that are beyond the
reasonable capabilities of a long-term care home (Schulz et al., 2004).
Caregivers often described long-term care as being impersonal and did not take into
consideration the unique needs of their family members. The need for personalized
palliative care for persons with dementia has received scant scientific research. It is
likely that by providing as much personalized care as they possibly could, caregiver
participants felt that they were gaining as much control as they could. Singer, Martin and
Kelner (1999) identified that achieving a sense of control was one of the domains of
quality end-of-life care. Participants in this study were able to achieve this sense of
control in providing the majority of care to their family member.
According to the control theory of aging, maintaining a sense of control helped
decrease the family caregiver’s vulnerability and provide better care for their family
members (Redding, 2000). The control theory of aging explains that having a personal
sense of control, such as controlling the care provided to their family member, served as
an important psychological resource that helped the caregiver participants compensate for
their inability to control the health status of their loved ones. Proot et al. (2003) suggest
that having a sense of control protects caregivers against exhaustion and burnout.
Caregivers who experience significant amounts of caregiver burden describe
experiencing a sense of loss over the caregiving situation (Smale & Dupuis, 2004).
Singer, Martin and Kelner (1999) also found that individuals at the end-of-life want their
family member to retain as much control over their care plans as possible. Caregivers in
this study used strategies to maintain a sense of control in otherwise uncontrollable
circumstances.
75
5.3 The Combined Older Adult and Family Caregivers’ Experiences
The older adult participants’ and the family caregiver participants’ experiences each
revealed unique themes. They also shared three similar themes (honouring wishes, fear of
hospitalization and uncertainty), although how they interpreted these themes differed.
The support received by the CCAC enabled the caregivers in this study to honour their
family member’s wish to receive their palliative care in their own homes. The older
adults were worried that they may not be able to continue to receive palliative care in
their homes if their dementia progressed. The majority of individuals with dementia die
in institutions and often spend their last days in long-term care homes (Ryan et al., 2011).
Persons with dementia typically receive less pain relief and fewer medical services
that could help improve their quality of life at the end-of-life (McCarthy, Addington-Hall,
& Altmann, 1997; Hirakawa et al., 2006). Previous findings indicate that, as their illness
progresses, individuals with dementia experience agitation, fear and confusion, pain that
is often not communicated, and several other mental problems (Cohen-Mansfield, 1996).
The unpredictable, slow death trajectory associated with dementia makes it difficult for
health care professionals to optimally care for those with end-stage dementia (Torke et
al., 2010).
While the older adults in this study were aware of their imminent death, they described
living with great uncertainty as to whether or not they would be able to continue to
receive their care at home as their dementia progressed. In this study all older adults were
in the early stages of dementia and caregivers acknowledged that their family member’s
terminal illness would likely kill them before they were confronted with this difficult
decision. Family caregivers believe that they are obligated to provide care at home out of
a sense of love and duty, despite feeling ambivalent (Stajduhar, 2003). Consistent with
other studies, the primary motivator for providing care at home for caregivers was related
to poor experiences with acute and long-term care (Stajduhar, 2003). This suggests that
improvements to palliative care are needed in these settings, as the majority of those with
dementia do pass away in institutions.
The experience of caregiving at the end-of-life has been described as fundamentally
uncertain by other researchers, in part due to unpredictable disease trajectories
(Stajduhar, 2003). Forbes et al. (2000) and Stajduhar (2003) found that caregivers felt a
76
sense of failure when the person with dementia was placed into long-term care. Family
carers are unprepared to make effective decisions about end-of-life care for persons with
dementia when their family member enters long-term care due to a lack of available
information (Stajduhar, 2003). Other studies have concluded that being uncertain was one
of the largest barriers to providing quality end-of-life care for people with dementia
(Harrison-Dening at al., 2012). A variety of interventions need to be incorporated in each
specific client’s care plan to meet the diverse needs of caregivers and terminally-ill
individuals wishing to receive palliative care in the community for as long as possible
(Proot et al., 2004; Sampson, 2010). Palliative care policies for people with dementia
have yet to incorporate interventions that address the challenges that dying with dementia
in the community poses, such as pain-management (Downs et al., 2006). Flexible
palliative care plans are instrumental in addressing the changing needs of terminally ill
individuals and their families (Proot et al., 2004). For example, as the principle goal of
palliative care is to relieve the suffering of patients and their families, when death
becomes more imminent, terminally-ill individuals may require more aggressive
palliation (Rome, Luminais, Bourgeois, & Blais, 2011). Receiving adequate pain and
symptom management is one of the domains of quality end-of-life care put forth by
Singer, Martin and Kelner (1999). As treatment intensifies, additional support should be
provided to a dying patient's family (Rome et al., 2011).
When asked how community-based palliative care services were initiated, the majority
of the older adults stated that they had expressed their wishes to their family member(s).
None of the older adult participants described requesting palliative care. Caregiver
participants described learning about home-based palliative care services only after trying
to care for their family member without these services at home and through a Registered
Social Worker at a hospital. The family caregivers then asked their family members if
they wanted a palliative care plan, to which the older adult participants agreed to.
None of the participants in this study described having an advanced directive in place.
This raises questions regarding what would happen if the older adults were at a later stage
of their dementia when communication is difficult and individuals are unable to state
their wishes or consent to a palliative treatment plan. As Hirschman et al. (2008) found,
prompts for discussions about end-of-life care wishes for patients with dementia often
77
included medical events or changes to financial status. The older adult participants in this
study may not have felt the need to put such a plan into place at this early point in their
diagnosis. Advanced care planning represents an opportunity for people with dementia to
discuss their wishes for end-of-life with their carers while they still have the cognition to
do so. Clinicians should strive to avoid what a terminally-ill individual may consider an
inappropriate prolongation of dying, as the prolongation of death has been identified as
an important domain of quality end-of-life care by Singer, Martin and Kelner (1999).
Advanced care planning may help to ensure that future care will be centered around
the terminally-ill individual’s wishes rather than the assumptions made by health care
professionals or even family members. In the absence of advanced care plans, end-of-life
decision making for people with dementia are usually shaped by religious beliefs,
professional training, family understanding of palliative care and perspectives of other
patients (Luchins & Hanrahan, 1993). These may not necessarily be the wishes of the
individuals themselves (Luchins & Hanrahan, 1993; Rurup et al., 2006b). Mezey et al.
(2000) found that family caregivers with a greater sense of caregiver burden were more
likely to consent to life-sustaining treatment. Some of the participants in this study
described feeling as if they required more information about dementia to make more
informed decisions about their family member’s end-of-life care. Family caregivers are
often unprepared for decision-making at the end-of-life for people with dementia (Forbes
et al., 2000; Hirschman et al., 2004; Smale & Dupuis, 2004). Having an advanced care
plan in place early, prior to the dementia progressing may make things easier on family
and caregivers and enable them to better honour their family member’s wishes.
5.4 Limitations of the Study
This study had several limitations. All participants received their home care services
from organizations contracted out by the CCAC. The sample may not be representative of
individuals who receive palliative care support services from elsewhere. It is important to
conduct further research with individuals who do not use services provided by the CCAC
to understand their experiences with community-based palliative care. All participants in
this study were in the early stages of dementia and all were able to answer the
researcher’s questions. It is important that future research explores the experiences of
78
individuals in mid and late stages of dementia, as well as the experiences of their
caregivers.
Ethnicity was not a focus of this study. All participants were Caucasian and these
experiences may not be representative of individuals from other cultures. The study did
not compare participant experiences on the basis of severity or total number of chronic
conditions. It is important for future research to investigate the role different conditions,
diseases and severity of conditions have on the experiences of older adults living with
dementia and their caregivers.
This study was also constrained by the circumstances of the participants. While some
caregivers were able to talk in great lengths, others were not able to due to other time
commitments and caregiving duties. Some older adult participants were only free to be
interviewed in the late afternoon, which may have impacted their answers due to
‘Sundown Syndome’. Sundown syndrome, also known as ‘sundowning’, affects
individuals with dementia and is marked by a worsening confusion and agitation in the
later afternoon and evening in comparison to symptoms earlier in the day (Khachiyants,
Trinkle, Son, & Kim, 2011). Three older adults requested that the interview be cut short
due to fatigue. Two of the family caregivers completed the study with a nurse or personal
service worker present, which may have influenced the answers of the participant.
5.5 Implications for Practice
The current study offers some insights that are useful to consider in the future
development of community-based palliative care services for individuals with dementia.
The findings of this study can help government organizations, health care commissioners
and palliative care professionals improve on their services by providing them with insight
into what caregivers need to best care for terminally ill individuals at home. This study
contributes to the greater, and growing, body of evidence-based research highlighting
particular aspects of community-based palliative care that warrants attention and
improvements.
This study demonstrated the importance of respite care for home-bound caregivers.
Providing more respite periods for informal caregivers and access to extra personnel,
especially at night, would help support the physical and psychological health of
caregivers. In turn, this would ensure that they are better able to support the wishes of
79
their family member by allowing them to remain at home for as long as possible. The
alleviation of burden and the ability to strengthen relationship with loved ones are
fundamental in achieving a quality end-of-life (Singer, Martin & Kelner, 1999). The
Ontario government has recognized that community-based palliative care is a cost-
effective strategy to current hospital-based palliative care unit spending (Ministry of
Long-Term Care, 2014). It is acknowledged that there are limited resources available
(including financial and human resources) to provide additional respite time and care for
family caregivers caring for their family members at home (Ministry of Long-Term Care,
2014). One possible solution is for the CCAC to lessen the day-time visits of willing
caregivers and allocate those hours for additional respite or night care.
As Ontario hospices are largely expected to generate large portions of their revenue
through fundraising or donations and the majority of individuals pay for additional
palliative care services out-of-pocket (Ministry of Long-Term Care, 2014), a possible
solution is to create a non-profit organization that focuses on peer-support for caregivers
of those receiving palliative care, with trained volunteers who may be able to provide this
additional respite time. To date, this does not exist in South-Western Ontario.
Support group opportunities for informal caregivers are also recommended. Nearly all
of the participants mentioned that greater emotional support was required, and that
support groups would be beneficial. Many of the caregiver participants mentioned not
being able to attend the available support groups because they are unable to leave their
family member unattended. Providing individuals with more respite opportunities so that
they are able to attend support groups or creating a long-term telephone or teleconference
support group, is recommended. These support groups should be facilitated by a clinical
social worker or registered health care professional knowledgeable about palliative care
and dementia.
It is also important that family caregivers are well educated on their family member’s
medical conditions. Caregiver participants expressed a longing for more education and
information about the conditions of their family member, especially in terms of the
dementia diagnosis, and the medical care plan followed by the home-based health care
providers. Educating palliative care providers on dementia will allow them to better
educate family caregivers. It is important that health care providers are also trained on
80
how to best deliver this knowledge as medical jargon has been frequently cited as a
barrier to adequate understanding about palliative care plans (Northouse & Northouse,
1998). A combination of additional education and caregiver support may help family
members sustain and fulfill their caregiving duties and support them in ensuring they are
able to keep their family members at home.
Another policy recommendation involves making greater attempts to have fewer
health care professionals visit the family and patient and instead have more continuity of
staff. Older adult participants mentioned being confused by the many different staff
members who enter their homes. Caregiver participants mentioned their family member
being more reluctant to accept the care provided by an unfamiliar face. Both wished that
the majority of home visits be conducted by staff members familiar to them. Family
caregivers also requested regular visits from physicians, even when no medical issues
seem apparent. Family caregivers believed doing so would help avoid any unnecessary
visits to medical clinics and hospitals and would provide them with reassurance that their
family member is receiving suitable care. It is also recommended that home care staff
members make more of an effort to communicate with older adult participants with
dementia, as older adult participants described feeling as if their care providers did not
engage them in conversations about their care plans.
The prevalent belief that a person with mild forms of dementia cannot be involved in
health care decisions or give their preferences for care must be eliminated. It is vital that
people with dementia are fully engaged in their health care plans for as long as they can.
If community-based services for persons with dementia are to remain effective, they must
encourage user feedback taken directly from the individuals with dementia receiving
these services.
The terminology used when discussing the palliative philosophy of care should be
clarified throughout the continuum of medical care. Interviews revealed much confusion
and some incorrect assumptions about what the palliative philosophy of care entails. In
the absence of a clear understanding of palliative care, participants of this study found
their own ways of defining palliative care, by comparing palliative care to end-of-life
care. Participants may have developed a misunderstanding about palliative care from
health care professionals. Better awareness of what palliative care does and does not
81
entail will help ensure patients and their families are able to make appropriate decisions
regarding their care plans. This includes the possibility of an early initiation of palliative
care and not just solely reserving the palliative philosophy of care to individuals nearing
death.
Health care providers offering palliative care services are encouraged to educate
referring providers and their patients on what the palliative care philosophy entails early
in the dementia disease trajectory. In the absence of clear medical guidelines as to when
to best deliver palliative care to individuals with dementia, it is recommended that
palliative care discussions be integrated into health care practices. In doing so,
individuals will better understand the palliative care philosophy and will have the ability
to differentiate between palliative care and end-of-life care. This will allow individuals
and their family members to make informed decisions appropriate to their needs and
wishes. Individuals diagnosed with dementia wishing to opt for a palliative care plan will
be better able to access palliative care services earlier.
5.6 Future Research Recommendations
This study examined the experiences of individuals receiving community palliative
care services in South-Western Ontario while also having a dementia diagnosis. While
there is a growing body of research identifying the challenges of providing quality
palliative care for a person with dementia, the available studies are largely conducted in
institutional long-term care settings, as many patients die in these settings (Houttekier et
al., 2010). There is a need for community-based research that identifies the characteristics
needed to facilitate optimal care for those choosing to die at home.
Future studies with larger sample sizes across larger geographical regions are
necessary to make recommendations for future best practice guidelines and service
delivery models. More specifically, it is recommended that a longitudinal study be used
to explore how family caregivers continue to experience palliative care services in the
community, from start to end. This will allow researchers to explore how experiences
differ as individuals move through the various stages of dementia and how caregiving
needs change. While it is difficult to interview individuals in more advanced stages of
dementia, it would still be useful to include them in such a study in order to learn more
about their decisions and wishes at the start of the care process and use this to compare it
82
to their actual outcomes later in the trajectory. Doing so will allow researchers to gather
information about how the disease trajectory impacts palliative care delivery in
community-based settings over time.
As persons with dementia often receive too little, if any, palliative care support in the
early stages of their illnesses (Ryan et al. 2012), discovering novel and innovative
strategies to reach individuals early on in their experiences of receiving palliative care
services is suggested. One suggestion for future research would be to pair researchers
with health service providers and social workers in institutionalized settings where the
discussion of community-based palliative care is said to often begin, in order to recruit
participants into the process as soon as possible. Similarly, it would be helpful for
researchers to connect with personal support workers, or public health nurses who may
come in close contact with more isolated individuals who may not know about palliative
care services. Likewise, it would be beneficial to explore private health care agencies that
deliver palliative care services for individuals with dementia.
It would be beneficial to use comparative research methods to explore how palliative
care experiences for patients with dementia at home is similar or different to individuals
in hospices, in long-term care homes and in hospitals. It is also recommended that future
research continues to include people with early-stages of dementia, given that it is these
individuals who are receiving the care and subsequently, whose opinions, wishes and
experiences, arguably, matter most. This study highlighted the feasibility of including
participants with dementia in qualitative research. This novel contribution identified the
experiences of older adults with dementia who are receiving palliative care in the
community by using first-hand accounts as sources of data. This provides some evidence
that people with dementia are suitable for participation in future qualitative research
initiatives. People with dementia can and should be involved in future studies
surrounding palliative care, as long as researchers take the appropriate steps to adapt their
methods to allow for active participation.
5.7 Conclusion
The number of Canadians with dementia in need of palliative care is increasing as the
expected number of those affected by dementia continues to grow and older adults live
longer. One of the most common wishes of terminally ill older adults is to die in their
83
homes and communities. There is a need to better understand the delivery of palliative
health care services in community settings for older adults with dementia. More
specifically, there is a need to better understand the complex experiences of older adults
with dementia who are receiving these palliative care services and the experiences of
their informal family caregivers who provide the majority of their in-home care. Little
research exists which explores such issues.
This interpretive phenomenological study described the lived experiences of ten
older adults with dementia who are currently receiving palliative care in South-Western
Ontario and the experiences of their informal family caregivers. The findings of this
study highlight the unique experiences of living with dementia and another terminal
illness at the end-of-life, as well as the challenges of caring for someone with these
conditions. All participants were grateful for the care provided by the CCAC and
believed that receiving palliative care services in the home would not be possible without
the community-based palliative care professionals. Caregiver participants described the
physical and psychological hardships of caring for someone who is receiving palliative
care for a terminal diagnosis, and who also has dementia. Family caregivers also reported
that caring for their family member at the end-of-life has many rewards. While overall
the experiences of these individuals were positive, the findings of this study suggest the
need for improvements in community-based palliative care delivery for people with
dementia.
84
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APPENDICES
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Appendix A: Telephone Script for Case Managers
Hello _________, I would like to talk to you about a study being conducted to better
understand the experiences of those receiving palliative care services in the community
due to a terminal condition in addition to dementia. The study is being conducted by a
Master of Science in Health and Rehabilitation Sciences student, Kristina Kokorelias, in
collaboration with Dr. Kloseck from Western University. The study will explore the
personal experiences of elderly individuals receiving care and their informal, family
caregivers and what it is like to receive palliative care in the community with a dementia
diagnosis. Kristina would like to interview older adult participants and their care
providers along with a representative of the Community-Care Access Centre. It is also the
hope that a Case Manager from the CCAC will assist in the recruiting of participants,
given their knowledge of those who may best meet inclusion criteria. If you are interested
in assisting with this study, I am happy to send you a letter of information that outlines
the study in more depth and you can contact one of the researchers if you would like to be
a participant in the study. Thank-you for your time.
112
Appendix B: Letter of Information & Consent (Older Adults with Dementia)
Project Title: The Lived Palliative Care Experiences of Community-Dwelling Older Adults with Dementia in South Western Ontario Principal Investigator: Dr. Marita Kloseck address email phone number Student Researcher: Kristina Kokorelias address email phone number
Page 1 of 6 Version Date: 10/17/2015 Participant Initials____
Letter of Information
Older Adult Participants
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You are being invited to participate in a Master’s level thesis project within the Faculty of Health Sciences at Western. This research study investigates how you are experiencing palliative care being delivered to you in your home in order to better understand you needs. This letter will provide you (and/or your proxy decision maker) with the information required to make an informed decision regarding participating in this research study. This letter will also describe to you why this study is being conducted and what your participation in the study will entail. Please take your time to read the whole letter carefully and feel free to ask any questions that you have. You will be given a copy of this letter of information and consent form to keep, for your records, once the papers have been signed. 1. Purpose of this Study
The purpose of this study is to better understand the experience of receiving
palliative care in the community while also having a diagnosis of dementia.
2. Number of Participants
There will be 10 participants in this study. Participants will include individuals
who are receiving palliative care along with their informal family care provider.
3. Who is Eligible to Participate?
To participate, you must be over the age of 65, able to speak English, have a
diagnosis of a terminal condition for which you are receiving community-based
palliative care for at least three (3) months, and have a diagnosis of early-stage
dementia. You must also have an informal caregiver with whom you live with, or
see regularly, who is willing to participate in this study. You must be able to
provide informed consent or have a substitute proxy-decision maker to provide
informed consent. Lastly, participants need to be from London, Ontario and the
surrounding area.
Participation in this study is voluntary. You may refuse to participate, refuse to
answer any questions, end data collection interviews before they are finished or
withdraw completely from the study at any time.
Page 2 of 6 Version Date: 10/17/2015 Participant Initials____
Participants who are unable to understand English, unable to communicate (including those with severe forms of dementia) and those without an informal
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caregiver willing to participate are not eligible to participate in this study. Participants who cannot be interviewed in London, Ontario and unable to be interviewed via telephone are also not eligible.
4. Study Procedures
As a participant in this study, you will be asked to complete an interview, which will be audio-recorded with your consent. Your informal caregiver may be present for the interviews. Interviews will take place at your home or at a place where you feel most comfortable. If participants cannot be interviewed in person, telephone interviews may be used. Interviews will last approximately 30-45 minutes each session and will consist of open-ended questions of for you to answer. These questions will ask about your experience of receiving palliative care in the community. The researcher may also ask you to meet for a second time if she requires a better understanding of your experience.
5. Possible Risks and Harms
There are no known physical risks to your participation in this study. However, discussion of your recent experiences and conditions may bring up extreme emotions. Similarly, you may find it difficult to communicate your answers with the researcher. A list of support services available in London, Ontario, that are free of charge, will be provided to you.
6. Possible Benefits
You may not directly benefit from participating in this study. If you agree to participate, you will be sharing information that may improve the quality of palliative care services provided in the community. Once the study has been completed, it is hoped that the findings of this study will guide policy changes and future best practices for palliative care for people with dementia and also to help inform the design of a community-based, dementia-specific model of palliative care within South Western Ontario.
7. Compensation
You will not be compensated for your participation in this research.
Page 3 of 6 Version Date: 10/17/2015 Participant Initials____
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9.Voluntary Participation
Participation in this study is voluntary. You may refuse to participate, refuse to
answer any questions or withdraw from the study at any time with no effect on
your future delivery of care. Should you withdraw from this study, all data
collected from your interviews will be destroyed and will not be analyzed.
10. Confidentiality
All data collected will remain confidential and accessible only to the investigators of this study. If the results are published, your name will not be used and changed into a pseudonym. No identifying information will be linked to the data for the purpose of anonymity. All data will be stored in a locked desk in the Sam Katz Community Health and Aging Research Unit at Western University, which can only be accessed by members of the research team. Computer files will be password protected. Non-identifiable data will be kept for 5 years after the study is completed and then will be shredded and destroyed to remain confidentiality. If you choose to withdraw from this study, your data will be removed and destroyed immediately. While we will do our best to protect your information there is no guarantee that we will be able to do so. Representatives of The University of Western Ontario Health Sciences Research Ethics Board may contact you or require access to your study-related records to monitor the conduct of the research.
11. Contacts for Further Information
If you require any further information regarding this research project or your participation in the study you may contact the Principal Investigator, Dr. Marita Kloseck phone number, email: email or the student researcher, Kristina Kokorelias phone number, email: email If you have any questions about your rights as a research participant or the conduct of this study, you may contact The Office of Research Ethics (519) 661-3036, email: [email protected].
Page 4 of 6 Version Date: 10/17/2015 Participant Initials____
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12. Publication
If the results of the study are published, your name will not be used. No identifying information will be linked to the data. If you would like to receive a copy of the study results, please contact the student researcher, Kristina Kokorelias (phone number, email: email or please provide your name and contact number on a piece of paper separate from the Consent Form.
13. Consent
If you choose to participate, you will be asked to sign a written consent form indicating this.
This letter is yours to keep for future reference.
Page 5 of 6 Version Date: 10/17/2015 Participant Initials____
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Consent Form
Project Title: The Lived Palliative Care Experiences of Community-Dwelling Older Adults with Dementia in South Western Ontario Study Investigator’s Name: Dr. Marita Kloseck, PhD, Faculty of Health Sciences, Western University I have read the Letter of Information, have had the nature of the study explained to me and I agree to participate. All questions have been answered to my satisfaction. Participant’s Name (please print): ___________________________________________ Participant’s Signature or Proxy: _____________________________________________ Date: _____________________________________________ I agree to be audio recorded during my interview. (Check box below)
Legally Authorized Representative (if applicable) Print: _______________________________ Legally Authorized Representative (if applicable) Sign: ________________________________ Legally Authorized Representative (if applicable) Date: ________________________________ Person Obtaining Informed Consent (please print):_____________________________ Signature: _____________________________ Date: _____________________________
Page 6 of 6 Version Date: 10/17/2015 Participant Initials____
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Appendix C: Letter of Information & Consent (Family Caregivers)
Project Title: The Lived Palliative Care Experiences of Community-Dwelling Older Adults with Dementia in South Western Ontario Principal Investigator: Dr. Marita Kloseck address phone number email Student Researcher: Kristina Kokorelias address phone number email
Page 1 of 6 Version Date: 10/17/2015 Participant Initials____
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Letter of Information
Informal Family Caregiver Participants You are being invited to participate in a Master’s level thesis project within the Faculty of Health Sciences at Western. This research study investigates how you are experiencing palliative care being delivered to you in your home in order to better understand you needs. This letter will provide you (and/or your proxy decision maker) with the information required to make an informed decision regarding participating in this research study. This letter will also describe to you why this study is being conducted and what your participation in the study will entail. Please take your time to read the whole letter carefully and feel free to ask any questions that you have. You will be given a copy of this letter of information and consent form to keep, for your records, once the papers have been signed.
1. Purpose of this Study
The purpose of this study is to better understand the experience of receiving palliative care in the community while also having a diagnosis of dementia.
2. Number of Participants
There will be 10 participants in this study. Participants will include individuals who are receiving palliative care along with their informal family care provider.
3. Who is Eligible to Participate?
To participate, you must be over the age of 18 and able to read and speak English. Participants who are directly involved in providing and/or managing palliative care needs for a family member or friend, with whom they live, and who are not employed in health care are eligible to participate. Participants must be able to provide consent. Lastly, participants need to be from London, Ontario and the surrounding area. Participation in this study is voluntary. You may refuse to participate, refuse to answer any questions, end data collection interviews before they are finished or withdraw completely from the study at any time.
Page 2 of 6 Version Date: 10/17/2015 Participant Initials____
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4. Exclusion Criteria
Participants who are unable to understand English, unable to communicate (including those with severe forms of dementia) and those without an informal caregiver willing to participate are not eligible to participate in this study. Participants who cannot be interviewed in London, Ontario and unable to be interviewed via telephone are also not eligible.
5. Study Procedures
As a participant in this study, you will be asked to complete an interview, which will be audio-recorded with your consent. Your family member may be present for the interviews. Interviews will take place at your home, or at a place where you feel most comfortable. If participants cannot be interviewed in person, telephone interviews may be used. Interviews will last approximately 30-45 minutes each session and will consistent of open-ended questions you to answer. These questions will ask about your experience of providing care to someone who is receiving palliative care in the community. The researcher may ask you to meet for a second time if she requires a better understanding of your experience.
6. Possible Risks and Harms
There are no known physical risks to your participation in this study. However, discussion of your recent experiences and the conditions of your family member may bring up extreme emotions. Similarly, you may find it difficult to communicate your answers with the researcher. A list of support services available in London, Ontario, that are free of charge, will be provided to you.
7. Possible Benefits
You may not directly benefit from participating in this study. If you agree to participate, you will be sharing information that may improve the quality of palliative care services provided in the community. Once the study has been completed, it is hoped that the findings of this study will guide policy changes and future best practices for palliative care for people with dementia and also to help inform the design of a community-based, dementia-specific model of palliative care within South Western Ontario.
Page 3 of 6 Version Date: 10/17/2015 Participant Initials____
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8. Compensation
You will not be compensated for your participation in this research
9.Voluntary Participation
Participation in this study is voluntary. You may refuse to participate, refuse to
answer any questions or withdraw from the study at any time with no effect on
your future delivery of care. Should you withdraw from this study, all data
collected from your interviews will be destroyed and will not be analyzed.
10. Confidentiality
All data collected will remain confidential and accessible only to the investigators of this study. If the results are published, your name will not be used and changed into a pseudonym. No identifying information will be linked to the data for the purpose of anonymity. All data will be stored in a locked desk in the Sam Katz Community Health and Aging Research Unit at Western University, which can only be accessed by members of the research team. Computer files will be password protected. Non-identifiable data will be kept for 5 years after the study is completed and then will be shredded and destroyed to remain confidentiality. If you choose to withdraw from this study, your data will be removed and destroyed immediately. While we will do our best to protect your information there is no guarantee that we will be able to do so. Representatives of The University of Western Ontario Health Sciences Research Ethics Board may contact you or require access to your study-related records to monitor the conduct of the research.
9. Contacts for Further Information
If you require any further information regarding this research project or your participation in the study you may contact the Principal Investigator, Dr. Marita Kloseck phone number, email: email or the student researcher, Kristina Kokorelias phone number, email: email If you have any questions about your rights as a research participant or the conduct of this study, you may contact The Office of Research Ethics (519) 661-3036, email: [email protected].
Page 4 of 6 Version Date: 10/17/2015 Participant Initials____
122
10. Publication
If the results of the study are published, your name will not be used. No identifying information will be linked to the data. If you would like to receive a copy of the study results, please contact the student researcher, Kristina Kokorelias phone number, email: email or please provide your name and contact number on a piece of paper separate from the Consent Form.
11. Consent
If you choose to participate, you will be asked to sign a written consent form indicating this.
This letter is yours to keep for future reference.
Page 5 of 6 Version Date: 10/17/2015 Participant Initials___
123
Consent Form
Project Title: The Lived Palliative Care Experiences of Community-Dwelling Older Adults with Dementia in South Western Ontario Study Investigator’s Name: Dr. Marita Kloseck, PhD, Faculty of Health Sciences, Western University I have read the Letter of Information, have had the nature of the study explained to me and I agree to participate. All questions have been answered to my satisfaction. Participant’s Name (please print): ___________________________________________ Participant’s Signature: _____________________________________________ Date: _____________________________________________ I agree to be audio recorded during my interview. (Check box below)
Signature: _____________________________ Date: _____________________________
Page 6 of 6 Version Date: 10/17/2015 Participant Initials____
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Appendix D: Ethics Approval Form
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Appendix E: End-of-Life Care Support Services
Describing your experiences of receiving palliative care or describing the experiences of
your family member may cause emotions to surface. Please find services below that you
can access in London, Ontario that are free of charge. Please remember that there is no
timeline on receiving support to meet your emotional, spiritual and practical needs.
London and District Distress Centre: A confidential telephone to support for seniors and their caregivers to assist with:
problem solving skills
crisis intervention
referral to other agencies as appropriate
Hospice of London Bereavement support programs that are offered at Hospice of London include:
Volunteer Visiting Program
“Walking with Friends” Bereavement walking group
Mindfulness for Healing
Massage Therapy
Reflexology
Healing Touch and Bereavement Support
Reiki
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Appendix F: Semi-Structured Interview Guide (Older Adult Participants)
Semi Structured Interview Guide
(Older Adult Participants)
Today is _______________at ______________and I will be interviewing participant
___________.
To start, I will be asking you questions about your experience with receiving care in
the community.
1. I wonder if as we begin if you could tell me a bit about your experiences in living
with more than one condition at a time. What is it like to live with multiple
chronic conditions?
Probe: Of these conditions, do you think one takes priority in terms of care?
What takes priority? What are the challenges you face living with more than one
condition at a time? Where does the dementia diagnosis come in?
2. How do you experience community health care services in your everyday life? Probe: Who is currently involved in providing care to you? Are there any doctors
or specialists you see regularly? Or any other in-home services you receive? How
is your care coordinated between all your care providers?
3. Are there any differences in how you experience care throughout your days today,
compared to a typical day before you began receiving palliative care services?
Probe: Is this experience different than you expected? Is it the same? How do you
feel regarding your experiences related to both the dementia and palliative care
services you receive? What is working well? What is not working so well? If you
could change one thing, what would you change?
Thank you very much for sharing. Now I’d like to ask some questions about your
perceptions about palliative care.
4. Can you please describe what palliative care means to you?
127
Probe: Are there any palliative care or other resources that you need or would
like that you currently don’t have? What do you like most about the services you
receive? What do you like least?
5. Can you help me understand how you came to choose home-based palliative
care?
Probe: What informed your decision? What were your expectations? Have your
views about home-based palliative care changed since you began receiving your
care? What is different from what you thought it would be?
6. Considering your current experience with community palliative care so far, are
there any additional services or help of any kind that would be useful to you?
7. Is there anything else that you would like to share about your experiences?
Anything that stands out for you about receiving care in the community?
Anything you liked? Anything you wish could be done differently?
THANK YOU.
128
Appendix G: Semi-Structured Interview Guide (Family Caregiver
Participants)
Semi Structured Interview Guide
(Caregivers)
Today is _______________at ______________and I will be interviewing participant
___________, caregiver to _______________________.
To start, I will be asking you questions about your experience with providing care to
someone with a terminal condition in the community.
1. I wonder if as we begin if you could tell me a bit about your experiences
providing care to someone who is terminally ill and residing in the community.
What is your role in this care?
Probe: What are the challenges you face in providing this care? Can you please
share your experiences as to what it is like to provide both palliative care and
care for someone who has dementia? Does the dementia make it more difficult to
provide the palliative care that is needed? If so, how is it more difficult? What are
your biggest challenges? If you could change one thing that would make it easier
for you, what would you change?
2. Are there any differences in your caregiving experiences today, compared to a
typical day before palliative care services were required?
Probe: What changes in your life have you experienced since becoming a
caregiver for someone who is terminally ill who also has dementia? Is this
experience different than you expected? How do you feel about the community
health services you receive?
3. Considering the whole experience of caregiving, what is the most challenging part
of being a caregiver for someone who is terminally ill? What is the most rewarding
part of your experience?
Probe: What about the challenges of caring for someone who is terminally ill with
dementia?
129
Moving on, I’d like to ask some questions specific to the palliative care needs of
someone with dementia.
4. What is your experience of palliative care as it relates to caregiving for someone
with dementia who also has a terminal illness?
Probe: Are there any special issues that need to be considered in providing
palliative care to someone with dementia? Are there any services that you wish
were available to you that you currently don’t have? What do you like most about
the services and supports available to you? What do you like least?
5. How does the experience of providing palliative care for someone with dementia
change your needs?
Probe: In your opinion, how does having dementia affect the palliative care needs
of someone who is terminally ill? How does caring for someone with both
dementia and a terminal illness change your caregiver support needs? Do you
perceive your experience with caring for someone with dementia to be different
from caring for someone who is terminally ill without a cognitive impairment?
Thank you very much for sharing. Now to conclude, I’d like to ask some questions
about your general perceptions about community-based palliative care.
6. Can you help me understand how you or the person you are caring for decided to
choose home-based palliative care?
Probe: How important is it for you or the person you are caring for to remain at
home? Why is it important? Have your views about home-based palliative care
changed? If so, why? Is anything different than you thought it would be?
7. Considering your current experience with community palliative care so far, are
there any additional services or help of any kind that would be useful to you?
8. Is there anything else you would like to share regarding your experiences as a
caregiver for someone with dementia requiring palliative care? Anything that
stands out for you about receiving care in the community? Anything you liked?
Anything you wish had been done differently?
THANK YOU.
130
Appendix H: Socio-Demographic Questionnaire
Please answer the questions below. All information will be kept confidential and
participation is strictly voluntary. You may choose not to answer certain questions. You
may also withdraw from the entire study at any time. If you have any questions or
concerns, please contact the primary investigator, Dr. Marita Kloseck.
Telephone: _______________________________________________
1. Are you: ________ male ________ female
2. Is your family member one: ________ male ________ female
3. Age groups (check one):
________ <26 ________ 46-65 ________ 26-35 ________ 66-75 ________ 36-45 ________ >75
4. Are you the sole informal care provider for your family member: ________ Yes
________No (If so, please state who else is involved: ___________________________)
5. How long have you been providing care for your family member (check one):
________ <2 years ________ >7 years ________ 2-4 years ________ 5-6 years
The Lived Palliative Care Experiences for Community-Dwelling Older Adults with Dementia in
South Western Ontario
Demographic Questionnaire
131
6. What is your employment status (check one):
________ employed full-time ________ employed part-time ________ volunteer work ________ unemployed ________ retired ________ other Version Date: 10/17/2015
7. What is the highest level of education you have completed? ________ less than high school ________ high school (9-12 years) ________ college (diploma) or university (Bachelor’s degree) ________ university with advanced degree (Master’s, PhD, or MD) ________ other education (please specify:________________________)
8. Do you currently live (check one): ________ by yourself ________ with your spouse or partner ________ with another member of your family (e.g. child, grandchild) ________ with a friend or roommate ________ or with someone other than mentioned above (please specify: ___________________________________________)
9. Where does your family member currently live (check one): ________ alone ________ with spouse or partner
________ with you (caregiver) ________ with another member of your family (e.g. child,
grandchild) ________ with a friend or roommate ________ or with someone other than mentioned above (please specify: ___________________________________________)
10. Please list the conditions that your family member has been diagnosed with.
11. How long ago was your family member diagnosed with dementia? ________ <1 year ________ > 4 years
________ 1-2 years
132
________ 3-4 years
Version Date: 10/17/2015
12. How long ago did you/your family member begin seeking support from the CCAC?
________ <1 year ________ > 4 years ________ 1-2 years
________ 3-4 year
13. If you receive any other support besides from the CCAC, please list them below. If not, please skip to 13.
14. Are you satisfied with the services you receive to assist you in providing care to your family member?
1 _____________ 2 _____________ 3 _____________ 4 _____________ 5 extremely satisfied somewhat dissatisfied
extremely satisfied satisfied
dissatisfied
15. How satisfied with your own health are you?
1 _____________ 2 _____________ 3 _____________ 4 _____________ 5 extremely satisfied somewhat dissatisfied
extremely satisfied satisfied
dissatisfied
133
Version Date: 10/17/2015
Appendix I: Interpretive Summaries of the Participants
Older Adult Participant Caregiver Participant
1 Male. Interview took place in caregiver’s home.
Lives in a bungalow alone. Never been married. No
children. Distance from majority of family, asides
from his two cousins and their mother and spouses.
Has not told any other family members about his
conditions. Youngest participant, at sixty-five.
Severe troubles breathing, many instances of
coughing during the interview. Carries around an
oxygen tank, but relies on no other assistive devices.
Has not been able to work in the past ten years due to
his condition and spends his day with his dogs. Still
drives. Very independent, prefers to do everything
alone. Receives care from a Personal Support
Worker twice a week and a nurse when needed. Has
been receiving care from the CCAC for a year. Was
diagnosed with a mild form of dementia a year ago
and has one additional chronic condition.
Male. Interview took place in participant’s home.
Married with two children in their twenties who no
longer live at home, but whom he visits twice a month.
Did not share too much, was brief with answers. Owns
his own business, works long hours, very few days off.
Changes his work schedule to care for his cousin when
need be. Smoker and does not take much time for self,
yet rated himself as healthy despite this. Has a large
extended family, but only receives some assistance
from his brother in terms of caring for his cousin.
Provides some care to his aging mother as well. Has to
travel far to visit mother and his care dependent.
Strong social circle – family and friends. Very strong
connections with family. Resilient, good coping skills.
Satisfied with the services provided by the CCAC.
2 Female. Interview took place in her home that she
shares with her daughter and her children. Widowed.
Only employed part time prior to retirement after her
children went to high school, was a stay at home
mom prior. Two adult children. Six grandchildren,
two grandchildren with whom she lives with.
Diagnosed with breast cancer years ago, prior to her
dementia diagnosis. Long history of being engaged
in the church community. Very strong social
connections with both immediate and distant family,
lots of familial support, if needed. Described by
caregiver as not being accepted of palliative care
treatment route. Receives care from a Personal
Support Worker or a nurse once a week. She has
been receiving care from the CCAC for three years.
Was diagnosed with a mild form of frontal temporal
dementia three years ago and has two other chronic
conditions.
Female. Interview took place in participant’s home as
mother was sleeping. Lives with her husband and two
small children. Was an elementary school teacher, but
has not worked since her children were born. Was
mother’s caregiver during her previous bought with
cancer as well. Very engaged within the community-
volunteers at children’s school. Strong connections
with immediate and extended family, yet is the only
caregiver for her mother. Kept referring to the fact that
she wasn’t a health care professional, but wishes she
was to provide better care. Struggles to find a balance
between caring for her mother and caring for her
children. Identifies as home bound. Satisfied with the
services provided by the CCAC and her own health,
but believes she now takes on more of the caregiving
role compared to when her mother was not palliative.
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3 Male. Interview took place in the participant’s home
which he shares with his wife and children. Has two
children in their early twenties. Is being tested for
schizophrenia in the upcoming weeks following our
interview. No longer able to drive. Strong
connections with immediate family. Social
connectedness is desired, feelings of loneliness when
home alone and hence, enjoys the visits from
Personal Service Workers and Nurses. Is home
during the day alone, while wife works. No longer is
able to leave home unless accompanied by someone.
Avant watcher of various news channels on TV and
frequently discussed world events during our
interactions. Two dogs. Described by wife as a ‘very
sweet man’. Is aware he is passing away. Receives
care from a Personal Support Worker once a week
and a nurse only visits every 3-4 weeks. He has been
receiving care from the CCAC for one-two years.
Was diagnosed with a mild form of frontal temporal
dementia one year ago and has two other chronic
conditions.
Female. Interview took place in a coffee shop. Lives
with her husband and two children. Youngest caregiver
participant. Described having a very close relationship
with her immediate family, but is the sole caregiver to
her husband. Mentioned reaching out to various
community health resources like the Alzheimer’s
Society to get as much information and education as
possible, but feels she doesn’t receive a lot of support
from the palliative care home services. Volunteers
with the Diabetes foundation. Works part time as an
administrative assistant. Has many hobbies. Also
referred to the fact that she wasn’t a health care
professional. Requests support groups. Very friendly.
Struggles with the emotional aspects of caregiving.
Satisfied with the services provided by the CCAC and
her own health.
4 Female. Interview took place via Face-time
telephone call. Widowed. Lives with her daughter
and two young grandchildren and has been for many
years. Has a long history of depression beginning in
adolescence. Originally from Nicaragua and traveled
there frequently prior to her illnesses. Was educated
in France. Only immediate family is in Canada and
thus, has a strong relationship with her only child,
grandchildren and her husband. Still very active in
the community and goes to church with her daughter
each week. Unlike the other participants, she
indicated that she would like to receive her care at
home, but is afraid of actually dying at home because
of the impact it would have on her child and
grandchildren. Lived in a retirement home for 6
months prior to terminal prognosis, when she moved
back in with her daughter. Has a cleaning service that
comes in biweekly, but no other receives no
community support. Receives care from a Personal
Support Worker once a week. She has been receiving
care from the CCAC for 8 months. Was diagnosed
with a mild form of Lewy Body dementia a year ago
and has three other chronic conditions.
Female. Interview took place in participant’s home.
Mother to young children. Very active social life. Very
physically active. Some familial support.
Was very emotional during interview- says it’s very
difficult to watch her mother be so ill. Claims she is
grieving her mother. Describes having a very close
relationship with mother. Admits to not using many of
the available services due to personal choice. Struggles
to find work-life balance and had to quit her job to
provide care. Quit job to be home more often, only
works occasional shifts as a receptionist. Mentioned
the home being accessible to her mother. Requests
support groups. Satisfied with the services provided by
the CCAC and her own health.
5 Male. Interview took place via telephone. Lives in an
apartment building with wife. Has a daughter and
Female. Interview took place via telephone. Lives only
with husband. Has two adult children but does not see
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son. Quite healthy, uses minimal health services
asides from the community care services provided by
the CCAC. Limited independence due to mobility
issues, unable to dress himself. Was a carpenter
during his employment and still finds enjoyment in
activities that use his hands. Uses a ‘LifeLine’.
Strong social connections with family and friends
who visit him often. Described numerous times by
wife and nurse as ‘very gentle’, however can get
aggressive when he is not familiar with the Personal
Support Worker providing his care. Receives care
from a Personal Support Worker once a week and a
nurse once a week. He goes to an Adult Day
Program when his caregiver needs respite care every
three months. He has been receiving care from the
CCAC for 3-4 years. Was diagnosed with
Alzheimer’s Disease almost two years ago and has
three other chronic conditions.
them often. Identifies as home bound. Cared for her
own mother prior to her death. Very involved and
integrated in community and with friends, but wishes
she was able to go out more- most of her socializing is
via telephone or visits to her home. Identifies as home
bound. Recently had two surgeries, but still rated her
health as high. Is caring for her spouse as she recovers
from her surgeries. Strong familial connections, lots of
familial support from daughter, if needed. Uses
external respite care every three months, but cut down
on it due to the cost. Wishes she was able to get more
care. Satisfied with the services provided by the CCAC
and her own health.
6 Female. Interview took place in the participant’s
home. Lives with spouse and oldest son. Three adult
children and four grandchildren. Has been living
with a rare condition for the majority of her life.
Spouse does the majority of the caregiver and assists
with all activities of daily living. Very limited
independence, is able to be mobile, but only with
help. Uses a walker or relies on spouse for help.
Spouse and children accompany all doctors visits due
to language barriers at times. Does not engage within
the community and hasn’t in the past four years.
Very strong connections with family, all
grandchildren and children visit almost weekly.
Family is extremely important to her. Very positive
person. Has to visit the hospital for oxygen every 3-6
weeks. Was very reluctant to receive home care.
Receives care from a nurse once a week. She has
been receiving care from the CCAC for 1-2 years.
Was diagnosed with Vascular dementia less than a
year ago and has two other chronic conditions.
Male. Interview took place in a building where he was
having a business meeting. Lives with father and
mother. Single. Never left home to care for his mother,
despite having properties. In his early-fifties. Claims to
have a high-stress, high-demand job. Travels
frequently for work and thus relies on his father to
provide care to his mother. Stressed the emotional
aspect to caregiving as being the most difficult.
Focused highly on the governmental costs associated
with caring for someone terminally ill both at the
institutional level and with home-care. Very active
lifestyle. Has many hobbies. Has strong connections
with family. Very large circle of friends with whom he
socializes with often. Provides all transportation for
his parents and accompanies them to all medical visits.
Is very organized, records and files all notes he takes at
medical appointments. Very busy individual and thus
did not have much time to be discuss experiences.
Extremely satisfied with the services provided by the
CCAC and his own health.
7 Female. Interview took place over the telephone.
Lives with son, daughter-in law and their children, as
well as her spouse. Very little familial support
outside of those she lives with. Not many visitors to
the home. No longer mobile, but described by self
and caregiver as healthy. Has been home bound for
the past three years and thus, does not engage in the
community. Was very active in volunteering in a
Female. Interview took place via telephone. Lives with
her husband’s two parents, husband and two adolescent
children. Also cares for father-in-law. Identifies as
home bound. Wishes she was able to engage with the
community more-specifically volunteer and take her
children out. Quit her job three years ago to care for
mother-in-law. Receives the most community health
care services- three visits a day from a Personal
136
church and hospital prior to illness. Wishes she could
still go to church. Religion is a big part of her life.
Lived in a retirement home complex prior to terminal
prognosis for three years. Receives care from a
Personal Support Worker for a short period three
times a day and a nurse once every 2-4 weeks. Once
a week a Personal Support Worker visits for three
hours to provide respite care to the caregiver and she
goes to an Adult Day Program for a night when her
caregiver every three months. She has been receiving
care from the CCAC for 2 years. Was diagnosed with
a mild form of dementia 1-2 years ago and has one
additional chronic condition.
Service Worker and once a week from a nurse. All
socializing is via telephone. Lack of familial support
and thus relies on the community health services.
Receives some help from her eldest son. Uses respite
care every three months not provided by CCAC and
stresses the importance of doing so, but feels guilty
about it. Son may have surgery soon and she is unsure
of how she will cope. Extremely positive and happy
with her caregiving experience. Wishes she was able to
care for more older adults. Satisfied with the services
provided by the CCAC with her own health.
8 Male. Interview took place at his apartment unit
which he shares with his wife. Was residing in long
term care prior to a terminal diagnosis for three
months, due to his dementia diagnosis. Does not
believe he is ill. No familial support outside of wife
in terms of caregiving, but two daughters visit often.
Has a son, who does not visit often as he does not
live in the country. Very little familial support, but
has many friends who visit often. Described by
family caregiver as being aggressive. Receives care
from a Personal Support Worker or a Nurse once a
week. He has been receiving care from the CCAC
for 1-2 years. Was diagnosed with Alzheimer’s
Disease less than a year ago and has one other
chronic condition.
Female. Interview took place at the local community
centre. Lives with her spouse. Newly retired. Still has
an active social life and is able to visit her friends
often. Claims to not know anything about home care
services, and thus put her husband in a long term care
facility for three months prior to his terminal diagnosis.
Is very afraid of her husband’s Alzheimer’s Disease
progressing. Considered private home care service and
will still use a private nurse when needed. Describes
the financial strain of caring for her husband at home.
Requests a support group and more education on
Alzheimer’s Disease. Does not believe that the
Personal Support Workers she receives assistance from
know about dementia. Extremely satisfied with the
services provided by the CCAC and is somewhat
satisfied with her own health.
9 Female. Interview took place at her home that she
shares with her sister and her brother-in-law. No
children. Never married. Has one elder sister who
visits every few months. Oldest of all the participants
and has the most number of conditions. Suffers from
blindness and has recently become wheel-chair
bound but relies on no other assistive devices.
Considers herself to be healthy, despite her illnesses.
Relies on her informal family caregiver for
assistance with all activities of daily living. Is unable
to be left alone. Was very active in the church
community prior to illness and wishes she could
return to church. Strong reliance on faith. Receives
some additional care from a neighbor when needed.
Receives care from a Personal Support Worker once
a day and twice a week for an over-night-stay and a
nurse once a week. Has been receiving care from the
Female. Interview took place via telephone. Lives with
her husband and sister. Eldest of all the caregivers.
Worked as a Personal Support Worker in a long term
care home prior to retirement and has previous
experience caring for her mother and mother-in-law
prior to their deaths. Also provides some support to her
father-in-law. Has no familial support and thus,
requires on a neighbour and husband for help when
needed. Visits church regularly and has strong
religious beliefs. Besides, weekly visits to church, she
identifies as home bound. Extremely positive and
happy with her caregiving experience. Strong religious
faith. Feels guilty for the assistance she receives from
the CCAC and wishes they would come less during the
day. Extremely grateful for now receiving them at
night, in order to help her rest and would like to have
them come at night more often, but would never
137
CCAC for two years. Was diagnosed with a mild
form of dementia a year ago and has four other
chronic conditions.
request it. Satisfied with the services provided by the
CCAC and with her own health.
10 Female. Interview took place at her home that she
shares with her daughter. Recently widowed. Has
adult four children and five grandchildren. Has been
battling an incurable chronic condition for eight
years, but recently was deemed palliative. Given a
prognosis of less than a year. Has no other familial
support outside from her daughter who is her primary
caregiver. Receives care from a Personal Support
Worker twice a day for a needle and a nurse once
every two weeks. Has been receiving care from the
CCAC for less than a year. Was diagnosed with a
mild form of dementia a year ago and has one other
chronic condition.
Female. Interview took place at home. Lives with her
mother. Never married, no children. Has two dogs that
she considers her only source of companionship.
Recently relocated to London from an urban city in
Ontario due to financial issues that arose once she quit
her job to become her mother’s primary caregiver.
Estranged relationship with one sibling and receives
minimal familial support from her other two siblings.
Is receiving temporary respite care between 11pm-7am
one night per week to assist with issues of exhaustion
related to caregiving. Wishes for more respite care and
emotional support. Satisfied with the services provided
by the CCAC and with her own health.
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Appendix J: Socio-Demographic Characteristics of Participants
Older Adult Participant Characteristics
Characteristic Study Participants (n=10)
Older Adult Gender
Female
Male
60 % (n=6)
40% (n=4)
Older Adult Living
Arrangements
Alone
With Caregiver
10% (n=1)
90% (n=9)
Time of Dementia Diagnosis
< 1 y year ago
1-2 years ago
3-4 years ago
20% (n=2)
70 % (n=7)
10% (n=1)
Number of Chronic Conditions
Older Adult Participant Has
(including dementia)
2
3
4
5+
40% (n=4)
40 % (n=4)
10% (n=1)
10% (n=1)
Terminal Conditions of Older
Adults
Cancer
Diabetes
Chronic Obstructive Pulmonary
Disease (COPD)
Congestive Heart Failure
50% (n=5)
30% (n=3)*
10% (n=1)
20% (n=2)**
*Terminal-phase diabetes as identified from CCAC nurses
**This individual has congestive heart failure and terminal-phase diabetes
Informal Caregiver Participant Characteristics
Characteristic Study Participants (n=10)
Caregiver Gender
Female
80% (n=8)
139
Male 20% (n=2)
Caregiver Age
36-45
46-65
66-77
20% (n=2)
50% (n=5)
30% (n=3)
Number of Years as Caregiver
< 2 years
2-4 years
5-6 years
>7 years
20% (n=2)
40% (n=4)
30% (n=3)
10% (n=1)
Caregiver Relationship to Older
Adult
Spouse
Child/Child-in-Law
Cousin
Sibling
30% (n=3)
50% (n=5)
10% (n=1)
10% (n=1)
Caregiver Employment Status
Employed Full-Time
Employed Part-Time
Volunteer Work
Unemployed
Retired
20% (n=2)
20% (n=2)
10% (n=1)
30% (n=3)
20% (n=2)
Caregiver Highest Level of
Education
High School (9-12 years)
College (Diploma) or University
(Bachelor’s degree)
30% (n=3)
70% (n=7)
Caregiver Living Arrangements
With Spouse or Partner
With Another Family Member
(e.g: child, grandchild)
60 % (n=6)
40% (n=4)
140
Appendix K: Community-Based Palliative Care Service Use of Participants
Characteristic Study Participants (n=9)
Mean Years Using Support
From the CCAC
1 year (range: <1-3-4)
Additional Supports Outside of
CCAC
Yes
No
10% (n=1); Private Nurse
90% (n=9)
Caregiver Satisfaction with
Services
Extremely Satisfied
Satisfied
Somewhat Satisfied
Dissatisfied
Extremely Dissatisfied
20% (n=2)
70% (n=7)
10% (n=1)
Caregiver Satisfaction with Own
Health Status
Extremely Satisfied
Satisfied
Somewhat Satisfied
Dissatisfied
Extremely Dissatisfied
60% (n=6)
40% (n=4)
141
Curriculum Vitae
Name: Kristina Marie Kokorelias
Post-secondary The University of Western Ontario
Education and London, Ontario, Canada
Degrees: 2014-2016 MSc (anticipated)
McMaster University
Hamilton, Ontario, Canada
2010-2014 B.A.
Post-secondary University Learning and Teaching
Certificates: The University of London Ontario
London, Ontario, Canada
2016
Leadership and Management in the Not-For-Profit Sector
Mohawk College
Hamilton, Ontario, Canada
2014
Honours and The Audrey Evelyn Mepham Award in Gereontology
Awards: 2014
The Karl Kinanen Alumni Prize in Gereontology
2014
Related Work Teaching Assistant
Experience The University of Western Ontario
2014-2016
Communications Assistant
Alzheimer Society London and Middlesex
2014-2016
Research Assistant
Aging, Community and Health Research Unit
McMaster University
2013-2014
Teaching Assistant
McMaster University
142
2013-2014
Conference Publications:
Ali, S.A., Kokorelias, K.M, & Kloseck, M. Community VS. Self-management of arthritis:
What does the evidence tell us? Osteoporosis International with Other Metabolic Bone
Diseases,27(1), pp. 519.
Kokorelias, K.M, Kloseck, M., Fitzsimmons, D., & Savundranayagam, Y. (2015) A study
on the lived experiences of receiving community-based palliative care for older adults
with multiple chronic conditions and dementia in south western Ontario. Journal of
Alzheimer’s disease & parkinsonism. doi: 10.4172/2161-0460.C1.016
Kokorelias, K.M., Ryan, E.B., & Elliot, G (2014). Conversational Use of English in
Patients of Dementia. Canadian Association on Gerontology Annual Meeting 2014:
Social Policy and Practice, p. 165.
Publications:
Ali, S.A & Kokorelias, K.M. (2016). Changing perspectives on chronic disease:
Improving daily management. The National Geriatrics Interest Group
Publication (4)1, 25.
Kokorelias, K.M, Ryan, E.B., & Elliot, G (2016) Innovative practice: Conversational use
of English in patients of dementia. Dementia: The International Journal of Social
Research and Practice (Sage). pp.1-10. doi: 10.1177/1471301216635827.