Table Of ContentOntario Dementia Caregiver Needs Project
Principal Investigators:
Bryan Smale, Ph.D.
Sherry L. Dupuis, Ph.D.
A Literature Review
Caregivers of Persons with Dementia:
Roles, Experiences, Supports and Coping
Caregivers of Persons with Dementia:
Roles, Experiences, Supports, and Coping
A Literature Review
Sherry L. Dupuis, Ph.D.
Tim Epp, Ph.D.
Bryan Smale, Ph.D.
Murray Alzheimer Research and Education Program
University of Waterloo
© MAREP 2004
Acknowledgements
Support was provided for this report from Ontario’s Strategy for Alzheimer Disease and
Related Dementias (Initiative #6 –Research on Caregiver Needs), jointly supported by the
Ontario Seniors’ Secretariat and the Ministry of Health and Long-Term Care.
The authors would like to thank the Alzheimer Society of Ontario – and in particular, Ms.
Lynn Moore – for the very helpful feedback and contributions to earlier drafts of this
review. We would also like to thank, for their contributions, Cathy Conway, Associate
Director for Education and Administration, Murray Alzheimer Research and Education
Programme; Sherry Coulson, Research Assistant, University of Waterloo; and Heather
Slade, Co-operative Education Student, Murray Alzheimer Research and Education
Programme.
Table of Contents
Section Page
List of Tables.....................................................................................................................iv
CHAPTER ONE
AN INTRODUCTION
What is Dementia ..............................................................................................................1
Types of Dementia .................................................................................................2
Implications of Dementia .......................................................................................2
Literature Review..............................................................................................................3
CHAPTER TWO
CHARACTERISTICS OF CAREGIVERS IN THE DEMENTIA CONTEXT
A Demographic Profile of Caregivers..............................................................................5
Changing Demographics of Caregivers..................................................................6
Caregiving Tasks and Roles .............................................................................................7
Differences in Caregiving Tasks by Gender ..........................................................8
Differences in Caregiving Tasks by Relationship to the Care Recipient ...............9
Caregiver Tasks and the Caregiving Career...........................................................9
Ethnicity and Caregiving Tasks ...........................................................................11
Early Onset Dementia and Caregiving Tasks.......................................................11
Summary of Chapter.......................................................................................................11
CHAPTER THREE
THE EXPERIENCE OF CAREGIVERS IN THE DEMENTIA CONTEXT
Psychological Health and Caregiver Burden ................................................................13
Risk Factors of Caregiver Burden and Decreased Psychological Health...................14
Type of Caregiving Situation (Dementia versus Non-Dementia) ........................14
Caregiving Experience and Gender......................................................................15
Caregiving Experience and Relationship to the Care Receiver............................17
Caregiver–Care Receiver Living Situation ..........................................................18
Caregiving Experience and Ethnicity...................................................................18
Education Level of Caregivers .............................................................................20
Self-Rated Health .20
Care Receivers with Depression...........................................................................20
Functional Status of the Care Receiver ................................................................20
Phase in the Caregiving Career and Ambiguous Loss .........................................21
Relationship Between the Caregiver and Care Receiver Prior to the Illness .......23
Family Expectations and Other Family Issues .....................................................24
Physical Health Consequences of Caregiving ...............................................................24
Consequences of Caregiving on Other Life Domains...................................................25
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Impacts of Caregiving on the Family ...................................................................25
Work and Financial Implications of Caregiving ..................................................26
Impacts on Social Life and Role Captivity in Caregiving....................................27
Impacts of Caregiving on Leisure Lifestyles........................................................28
Positive Aspects of Caregiving .......................................................................................31
Caregiver Satisfaction, Gratification, and Pride...................................................31
Increased Mastery and Accomplishment..............................................................32
Sense of Purpose and Meaning in Life.................................................................32
Emotional Uplifts and Benefits Experienced .......................................................32
Sense of Reciprocity of Care................................................................................32
Personal Growth and Development......................................................................32
Improvements in Social Relationships .................................................................33
Factors Contributing to a Positive Caregiving Experience ..................................33
Summary of Chapter.......................................................................................................33
CHAPTER FOUR
COPING WITH THE CAREGIVING ROLE IN THE DEMENTIA CONTEXT
Formal Interventions and Resources.............................................................................35
Psychosocial Interventions .35
Support Groups ...........................................................................................35
Counselling .................................................................................................36
Knowledge, Education, and Skills Training................................................38
Respite Interventions.39
Centre-Based Adult Day Programmes/Services..........................................40
In-Home Respite Services............................................................................42
Institutional Respite and Vacation/Emergency Respite ..............................43
A Final Note on Respite Services ................................................................44
Home Care Services .............................................................................................45
Case Management .47
Multi-Component Programmes .49
Other Formal Interventions ..................................................................................51
Family Compensation Programmes............................................................51
Pharmacotherapy........................................................................................53
Communication Interventions .....................................................................54
Memory Clinics ...........................................................................................55
General Patterns of Formal Support Use and Effectiveness.................................55
Informal Supports for Caregivers .................................................................................59
Defining Informal Support ...................................................................................59
Predictors of Informal Support.............................................................................61
Benefits of Informal Support................................................................................61
Limitations of Informal Support...........................................................................63
Personal Coping Strategies.............................................................................................64
Stress and Coping in the Caregiving Context.......................................................64
Types of Personal Coping Strategies....................................................................65
Benefits and Effectiveness of Coping Strategies..................................................65
Differences in the Use of and Effectiveness of Coping Strategies.......................68
Limitations of Personal Coping Strategies and Coping Research ........................70
Summary of Chapter.......................................................................................................70
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CHAPTER FIVE
FINAL THOUGHTS AND RECOMMENDATIONS .................................................72
Recommendations for Future Research.............................................................................74
APPENDIX A: TYPES OF DEMENTIA......................................................................77
REFERENCES ................................................................................................................79
List of Tables
Table 1: Summary of Potential Interventions and Strategies
According to Stage of Alzheimer Disease ......................................................57
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iv
CHAPTER ONE
AN INTRODUCTION
ccording to the Canadian Study of Health and or older (i.e., 119,807 or 86% of people with
A Aging (CSHA, 1994c), one in thirteen dementia). Similar to national trends, the number of
Canadians over the age of 65 years is affected by cases of dementia in Ontario is predicted to increase
Alzheimer Disease or a related dementia. An dramatically over the next two decades as the older
estimated 364,000 older adults in Canada have an adult population grows. By 2010, the number of
illness causing dementia (CSHA, 1994c), of which cases of dementia is estimated to increase by nearly
over 64% has Alzheimer Disease, the leading cause 40% over current levels and to increase by nearly
of dementia (Johnson, Davis, & Bosanquet, 2000). 85% by 2020. By 2028, the number of cases of
Further, an estimated 83,200 new cases of dementia dementia will have grown by approximately 140%
emerged in 2001 (CSHA, 2000) and the fastest over 2000 levels (Hopkins & Hopkins, 2002).
increase in persons with dementia is occurring for These trends mean that approximately 181,306
those over 75 years of age (Gautrin, Froda, people with dementia in Ontario will need some
Tetreault, & Gauvreau, 1990). One in nine level of formal and/or informal care in 2010, rising
Canadians between the ages of 75 and 84 years is to over 300,000 people needing care by 2028
estimated to have an illness causing dementia and (Hopkins & Hopkins, 2002). Nationally, the
this statistic rises to one in three among those over Canadian Study of Health and Aging Working
the age of 85 years (CSHA, 1994c). Nonetheless, the Group estimated “that there will be approximately
incidence of dementia in the community often is 60,150 new cases of dementia in Canada each year.
underestimated because caregivers might mistake Of these, 36,320 will be women and 23,830 men”
memory changes as part of the normal aging process (CSHA, 2000, p. 69). A sizable majority of these
(Sternberg, Wolfson, & Baumgarten, 2000) and new cases of dementia will be persons living in the
many older adults are likely to have dementia for community (CSHA, 2000). The rapid increase in
several years prior to diagnosis (Keating, Fast, numbers of people with dementia and the efforts of
Frederick, Cranswick, & Perrier, 1999). the lay advocacy movement led by the Alzheimer’s
With the rapidly increasing older adult Association in the United States and by the
population, the numbers of persons with dementia in Alzheimer Society of Canada have identified
Canada is projected to increase dramatically over the dementia as an international health priority, both for
next several decades. The proportion of the persons with dementia and for their caregivers
Canadian population aged 65 years and older is (Gillick, 1999).
predicted to increase from 11.4% in 1991 to an
estimated 21.7% in 2031 (Statistics Canada, 2000).
Consequently, the number of people with dementia WHAT IS DEMENTIA?
in Canada is predicted to rise from 322,000 in 1997,
to 548,000 by 2016 (Bland, 1998) and to 592,000 by ementia has been defined as “an acquired
2021 (CSHA, 1994c). By the year 2031, over three- Dsyndrome of intellectual impairment produced
quarters of a million Canadians are estimated to by brain dysfunction...which compromise in at least
have Alzheimer Disease or a related dementia three of the following spheres of mental activity:
(CSHA, 1994c). Similar increases have been language, memory, visuospatial skills, emotion or
predicted for other developing countries, including personality, and cognition (abstraction, calculation,
the United States and Sweden (Aevarsson & Skogg, judgment, [and] executive function)” (Cummings,
1996; Katzman & Bick, 2000). 1992, p.1). Dementia may be distinguished from
In Ontario, according to a recent research other forms of cognitive impairment by its per-
bulletin published by PCCC Mental Health Services sistent, progressive, and often irreversible de-
in Kingston, Ontario (see Hopkins & Hopkins, terioration.
2002), there are currently an estimated 139,754 In general, dementia involves three main types
cases of dementia, with most being 75 years of age of symptoms: losses in cognitive capacities;
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Dupuis, Epp, and Smale
difficulties in performing instrumental and personal Lindsay & McDowell, 1996). For further discussion
activities of daily living; and changes in mood or on types of dementia, see Appendix A.
personality and declines in interpersonal functioning Most of the dementia prevalence studies in
(Le Navenec & Vonhof, 1996). Canada have focused on adults who are 65 years of
Dementia as a general category can be further age and older (CSHA, 2000). Therefore, epidemio-
divided into reversible and irreversible types logical studies of early onset dementia – that is,
(Kaplan, 1996). Reversible dementia may be caused dementia of onset before the age of 65 – are scarce
by factors including reactions to medications, (Ferran et al., 1996) and our understanding of the
depression, occlusive cerebrovascular disease, prevalence rates of early onset dementia in Canada
normal pressure hydrocephalus, brain tumours, remains limited. Studies in the United Kingdom
environmental toxins, nutritional deficiencies, (UK) suggest that the estimated incidence of early
infections, inflammatory illnesses, and other onset Alzheimer Disease ranges from 7.2 (Newens
metabolic disorders. Irreversible dementia is caused et al., 1993) to 22.6 (McGonigal et al., 1993) cases
by factors including Alzheimer Disease, vascular per 100,000 population among those under 65 years
(multi-infarct) disease, Parkinson’s disease, head of age. Other studies in the UK have reported the
trauma, and genetic background (Kaplan, 1996). prevalence of early onset dementia of the Alzheimer
Other causes of dementia include cardiopulmonary type as well as other types of dementia to range from
disorders, hepatic disturbances, renal failure, and 42 to 78 cases per 100,000 population in either the
chronic excessive use of alcohol or other substances 30 to 64 years or the 45 to 64 years of age group (see
(Cummings, 1995). Freyne, Kidd, & Lawlor, 1998; Harvey, 1998;
Williams, Dearden, & Cameron, 2001). Alzheimer
Types of Dementia Europe (1998) suggests that early onset dementia
accounts for 10% of all cases of dementia.
he Diagnostic and Statistical Manual of the Understanding of the prevalence rates of early onset
T American Psychiatric Association (1994) dementia in Canada is increasingly important
defines Alzheimer Disease (AD) as a leading cause because younger adults with dementia are very
of dementia in the elderly (DSM-IV). In fact, likely to have very different needs than older adults
Alzheimer Disease accounts for between 75 and with dementia (Williams et al., 2001).
85% of all cases of dementia among older adults,
either by itself or in combination with other types of Implications of Dementia
dementia (Ebly, Parhad, Hogan, & Fung, 1994;
Hopkins & Hopkins, 2002). Discovered in the late ith the rapidly changing demographic
19th century, Alzheimer Disease is a progressive Wstructure of contemporary society, more and
degenerative disorder, insidious in onset, followed more adults are finding themselves providing care
by gradual deterioration and death (Cummings, for a family member or friend with dementia.
1995). Histological hallmarks of Alzheimer Disease Moreover, changes in the health care system and
include neuronal loss, neurofibrillary tangles, and social services in Canada, such as shorter hospital
the production of neuritic plaques, leading to stays, greater use of outpatient treatment, and longer
neuronal toxicity and cell death (Cummings, 1995). waits for admission to a long-term care facility, have
Other types of dementia include: put even greater pressures on families and friends to
take on the caregiving role (Cranswick, 1997). It has
• Vascular (multi-infarct) dementia, been estimated that over 90% of elder care in
• Lewy body disease, Canada is provided informally, with the bulk of this
• Frontotemporal dementia, and care being provided by family members and friends
• Dementia in Down’s Syndrome. (Angus, Auer, Cloutier, & Albert, 1995; Cantor,
1991). The caregiving roles and responsibilities
In Canada, Alzheimer Disease accounts for 75% taken on by families and friends can often be intense
of dementia in women and approximately 52% of and time consuming, and therefore, can have major
dementia in men whereas vascular dementia impacts on caregivers’ health and overall lifestyles
accounts for 14% of dementia in women and 30% of (e.g., Lieberman & Fisher, 1995; Schulz, O’Brien,
dementia in men. Other causes account for Bookwala, & Fleissner, 1995).
approximately 11% of dementia in women and 18% Furthermore, the caregiving role often spans a
of dementia in men (see Hill, Forbes, Berthelot, period of several years. The Canadian Study of
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