Volume 25
Number 3/4
2004

[Table of Contents]

Research on Alzheimer's caregiving in Canada: Current status and future directions

Larry W Chambers, Alexandra Hendriks, Heather L Hall, Parminder Raina and Ian McDowell,on behalf of the "Care for the Caregiver" Working Group

Abstract

In December 2002, a national workshop was held in Ottawa to guide research directions for the caregiving of people with Alzheimer's disease in Canada. Prior to the workshop, a search was conducted to identify Canadian-based investigators who have conducted research related to caregiving of individuals with cognitive impairment, Alzheimer's disease and other dementia, identify relevant Canadian research studies, and provide an overview of results and themes emerging from this research. This paper summarizes findings from our search for Canadian studies, research themes identified at the national workshop in Ottawa, and recommendations from the workshop. The report first outlines patterns of caregiving and subsequently focusses on the impact of different ways of assisting Alzheimer's caregivers. It concludes by outlining the methodological challenges of observational and intervention studies related to Alzheimer's caregiving and recommendations on how to increase Canada's capacity to conduct research on Alzheimer's caregiving.

Key words: aging; Alzheimer's disease; caregivers; caregiving; cognitive impairment; dementia

Introduction

Considerable research has been conducted on the caregiving of individuals with Alzheimer's disease in Canada; there is a need to take stock of what has been learned and to decide what directions future research endeavours should take. Accordingly, in December 2002, the University of Ottawa Institute on Health of the Elderly associated with the SCO Health Service, in collaboration with the Canadian Institutes of Health Research (CIHR) Institute of Aging, the CIHR Institute on Gender and Health, and the CIHR Partnerships and Knowledge Translation Portfolio, held a two-day national research workshop to guide research directions for caregiving to people with Alzheimer's disease in Canada. Prior to the workshop, a search for Canadian studies was undertaken to:

• identify current Canadian-based investigators who have conducted research related to caregiving of individuals with cognitive impairment, Alzheimer's disease and other dementias (will be referred to as Alzheimer's disease);
• identify relevant Canadian research studies; and
• provide an overview of results and themes emerging from this research.

This paper summarizes findings from our search for Canadian studies, research themes identified at the national workshop in Ottawa, and recommendations from the workshop.

Methods

Search strategy for Canadian research on Alzheimer's caregiving

This search focussed on studies carried out in Canada. Once we fully understand what has been accomplished in Canada, we can review findings from other countries and determine how well these findings apply in the Canadian context. This search, therefore, was a first and necessary step in the process of reviewing the international caregiving literature for people with Alzheimer's disease. For comprehensive reviews of the international literature, see references 1 to 6. The search strategies we used allowed us to locate 1,525 references, 111 of which met the inclusion criteria for this study. The following website provides a detailed description of the search methods and a list of the references that met the inclusion criteria for this review: http://www.medicine.uottawa.ca/research/eng/institutes.html .

Ottawa workshop process

The workshop brought together researchers, clinicians, policymakers, and governmental and non-governmental representatives from across Canada, as well as Richard Schulz, from the University of Pittsburgh, an international leader in the field of caregiver research. After a poster session and greetings from Réjean Hébert, Scientific Director of the CIHR Institute of Aging, the first half-day of the workshop consisted of a plenary presentation on findings from our search of Canadian research on Alzheimer's caregiving and a panel discussion from one non-governmental, one governmental, and one clinician representative on needs of research users. On the second day of the workshop, the working group recommended CIHR initiatives to stimulate caregiver research.

Preparation of the report

This report was based on the findings from the search for Canadian studies on Alzheimer's caregiving, the national workshop deliberations, and feedback received from both participants and invitees who made suggestions and comments on the drafts. It concludes with a discussion on how to build capacity for this research in Canada. The report was submitted to the CIHR in May 2003.

Results

For each of the following topics, refer to Table 1 for research questions/areas identified for future research on Alzheimer's caregiving in Canada.

TABLE 1
Research questions/areas identified for future research on Alzheimer's caregiving in Canada

Patterns of caregiving

Who provides the care? Family members and friends are the main source of care for individuals with Alzheimer's disease who live in the community.⁷ In fact, family and friends provide 75% to 85% of the care needed by frail Canadian seniors,^8,9 particularly spouses and adult children (who in some cases are seniors themselves).^10,11 Typically, one family member, most likely a woman,^7,11,12 takes on most of the responsibility, assuming the role of primary caregiver. Women assist most often in the areas of homemaking and personal care and men assist most often with home maintenance, transportation and financial issues.¹³

What type of care is provided? The caregiving role is complex and ill-defined but generally includes practical assistance with basic and instrumental daily living activities and personal care, emotional support, mediation with formal organizations and service providers, financial help, and possibly sharing a household.^10,14 Population surveys often are limited as caregivers and care recipients have difficulty distinguishing among the various types of professionals that visit their homes.

How can we characterize caregiver transitions? Caregiving is typically an evolving long-term process. Schulz¹⁵ describes the trajectories that caregivers and care recipients experience, as well as the appraisals and health effects associated with each phase in this model (see Figure 1). Future longitudinal and cross-sectional studies will be important in helping us to assess the role of transitions in caregiving. National population surveys of caregivers such as the Canadian Longitudinal Study on Aging¹⁶ and the National Population Health Survey ) will provide in-depth data on caregiver transitions to guide future policies and practices in Canada.

FIGURE 1
Transitions in caregiving

How much care is provided? In the Canadian Study of Health and Aging (CSHA), community-dwelling older subjects with dementia received an average of 63 hours of informal assistance from their primary caregivers per month; those without dementia received help for an average of 44 hours per month from a primary caregiver.¹¹ Even after institutionalization, caregivers in Canada generally continue to provide some degree of assistance to care recipients.^7,11,17,18 Use of health services differs from demand, that is, the extent to which services are actually used. For example, "need", as judged by the prevalence rates of health problems found in epidemiological studies, may be much higher than actual use.¹⁹

Negative aspects of caregiving

What is the financial strain of caregiving? Hux and colleagues²⁰ conducted a formal analysis of caregiving costs for people with Alzheimer's disease using CSHA data. The annual societal cost of care per person increased with the severity of Alzheimer's disease, from $9,451 (CDN) for mild cases to $36,794 (CDN) for severe disease.

Institutionalization comprised the main portion of this cost for those with severe disease. In Manitoba in 1991, the cost of providing strictly health and social services was $2,343 for people with dementia, $1,882 for people with cognitive impairment, not dementia (CIND) and $1,101 for people with normal cognition.²¹ The cost of supplies, medications, renovations, and equipment were reported to be a financial strain to 25% of Canadian informal care providers.^14,22 The economic impact of taking time off work, lost and postponed career opportunities, and the loss of a job can also have detrimental effects on caregivers' long-term financial well-being.^14,23 In order to pay for out-of-pocket expenses, some informal caregivers have to adjust their budgets and draw on savings, which can affect their long-term economic well-being and quality of life.

What are the effects of caregiving on the caregiver's ability to work? In the first phase of the CSHA, one third of employed unpaid caregivers reported work disturbances due to caregiving; these disturbances were reported twice as frequently among caregivers of people with Alzheimer's disease.⁷ Caregivers are often left with little option but to use sick days and vacation to provide care.

Do Canadian workplaces support caregivers of people with Alzheimer's disease? Medjuck, Keefe, and Fancey²⁴ investigated the extent to which existing workplaces assist women to balance employment and elder care responsibilities, drawing on workplace policies and interview data from 246 female caregivers of older kin from 37 workplaces in Nova Scotia. Their findings revealed a childcare bias in family-friendly policies, a gender bias in policy formulation, and a focus on workplace productivity rather than employee well-being. They concluded that current workplace policies do not take into consideration the complex needs and diverse situations of employed women providing care for older adults.

What are the effects of caregiving on physical and psychological health? Thirty percent of Alzheimer caregivers of individuals experience depression; fewer experience physical health problems due to their roles and responsibilities.^7,12,25 The link between caregiver tasks and caregiver health is complex. Caring for a community-dwelling Alzheimer's disease sufferer, combined with low levels of social support, has been associated with negative psychological and health outcomes.²⁶ Caregiving also restricts social and recreational interactions and reduces energy for other activities.^14,23 Canadian studies have found a number of factors that influence negative health outcomes, including increased frequency of behavioural problems, care recipients' functional and cognitive impairments, and care-giver personality traits.^26-33

Positive aspects of caregiving

What are the positive aspects to caregiving? Canadian investigators have found that not all aspects of caregiving are negative.^34,35 Caregivers report a number of personal benefits to caregiving, such as companionship, fulfillment, extending quality of life, and enjoyment.³⁴ The rewarding aspects of caregiving are often overlooked and under-researched. It is important to understand how benefits relate to outcomes.³⁶ Caregivers demonstrate considerable variability in response to their roles and responsibilities, and not all caregivers are overburdened and unable to cope.¹⁴

Approaches to assisting Alzheimer's caregivers

There are three approaches to designing and evaluating interventions.³⁷ The first involves developing multi-component interventions that are offered to all caregivers. This approach is relatively easy to implement and evaluate but may not be flexible to individual needs. The second approach involves designing targeted or tailored interventions that attempt to reach types of caregivers, types of care recipients, and stages of caregiving. Targeted and tailored interventions can be complex, expensive to implement and should be grounded in theory. They do, however, allow interventions to be matched with caregivers and care recipients. A third approach is to develop local community interventions involving local Alzheimer's disease society branches and other interest groups that would volunteer their time to assist informal caregivers. Interventions should be developed in collaboration with caregivers, who can identify the most effective strategies. Present and former caregivers of individuals with Alzheimer's disease should be interviewed to learn what information, training, and support they wish they had had.

What types of Canadian studies of interventions for Alzheimer's caregivers have been completed to date?

Our search for Canadian studies discovered eleven Alzheimer's caregiver intervention studies published since 1990. Pilot studies were excluded from the review. Studies that examined the impact of dementia management medications for care recipients on caregiver costs were also excluded. However, several recent studies have examined this issue,^38-40 and further work is needed to determine the effects that prescription and non-prescription medications used for dementia management have on those caring for seniors with dementia.

In response to criticisms that traditional support groups for unpaid caregivers of people with dementia were ineffective,⁴¹ recent Canadian studies of interventions targeted at individual Alzheimer's caregivers have emphasized theoretically based cognitive and behavioural group interventions. These programs are typically designed to increase caregivers' self-efficacy⁴² and to provide individual caregivers with tools for coping with psychological distress associated with caring for the cognitively impaired, such as problem-solving skills, assertiveness training, and cognitive restructuring.^42-44

The interventions for caregivers of people with Alzheimer's disease vary. One approach is to facilitate problem-solving skills in caregivers. Roberts and colleagues⁴⁴ developed an individualized problem-solving intervention. Their 'therapy' sessions consisted of the following steps: problem orientation, problem definition and formulation, generation of alternatives, decision-making, and solution implementation and verification.

Another type of intervention is the provision of respite care.⁴⁵ This may involve attendants coming to the house to look after the care recipient while the caregiver leaves the home or stays in the home but tends to non-caregiver tasks; adult daycare or day hospital programs; or respite beds in a facility where the care receiver stays for days or weeks. Usually respite care is promoted to help care recipients avoid leaving their homes and being placed in a long-term care facility and to decrease caregiver burden.

Other interventions have employed a combination of approaches.^46-47 For instance, Mohide and colleagues⁴⁸ designed an intervention with a combination of caregiver-focussed health care, education about Alzheimer's disease and caregiving, assistance with problem solving, regularly scheduled in-home respite, and access to a self-help family caregiver support group. A similar randomized controlled trial employed a combination of information, social support, skills training, and behaviour modification.⁴⁶ Hébert and colleagues⁴⁷ designed a multifaceted support group program with information on Alzheimer's disease, techniques for solving behavioural and emotional problems, and relaxation techniques. Hébert and colleagues^49,50 also developed a psycho-educative group intervention aimed at improving caregivers' ability to deal with stressful demands encountered in caring for individuals with Alzheimer's disease. Their 15-week program was designed to help participants with their cognitive appraisals of stressful situations and to provide mechanisms for coping with them.

What do we know in Canada about interventions targeted at community, provincial or national levels?

In addition to interventions targeted at individual Alzheimer's caregivers, studies need to evaluate community-based strategies that target families of caregivers, formal care providers, communities and policy-makers (see Figure 2 for examples). Research needs to focus on systems of community care that support caregivers, such as dementia care networks, local Alzheimer's societies, and relationships between central and local governments. While there are several of these types of initiatives in Canada, there are few systematic evaluations of community-level or policy interventions. The following section describes existing initiatives and suggestions for future research.

FIGURE 2
Examples of interventions at multiple levels

Home and community supports

Local, provincial and federal approaches. Ontario's Strategy for Alzheimer's Disease and Related Dementias,⁵¹ a unique policy initiative in Canada, introduced policies related to informal caregiving that overlap at the provincial and local levels. The Alzheimer's Society of Ontario has expanded the number of local branches that are responding to the Strategy's initiatives. Initiatives directly related to caregiving include public awareness, information, education and research on caregiving. The Ontario Ministry of Health and Long-Term Care is conducting a systematic evaluation of this initiative.

The interface between informal and formal caregiving. Researchers have proposed different models of caregiving to illustrate how informal and formal health care systems can be connected. The task specificity model of caregiving states that the structure of the task determines the source of care.⁵² Others^53,54 argue that increasing provision of formal services is commensurate to, and parallels, decreases in informal care. A third model suggests that patterns of assistance follow an orderly hierarchical selection process determined by individual preferences.⁵⁵ The supplementary model⁵⁶ states that formal care supplements the informal care that caregivers provide.

Changes to the physical environment. New knowledge about the design of facilities could be made available to Alzheimer's caregivers whose care recipient is still at home. This would include new technologies developed to enable medical monitoring, such as blood pressure monitoring of people in their homes.⁵⁷ Another possibility is the use of computer programming based on artificial intelligence techniques and algorithms to make Alzheimer's disease patients less reliant on their in-home caregiver, for example, when washing their hands.⁵⁸

Financial assistance

Tax credits, direct allowances and pension schemes are other ways of providing tangible assistance to caregivers that can be less costly than the direct expenditures involved in implementing services. Canadian taxation policies that support informal caregivers include the Disability Tax Credit, the Infirm Dependent Tax Credit, the Medical Expenses Tax Credit and the Caregiver Tax Credit. Eligibility for the Caregiver Tax Credit excludes spousal care-givers, caregivers who do not reside with the care recipient and caregivers of individuals with an income that exceeds $15,453. Consequently, 90% of Canadian caregivers are ineligible for this tax credit, which has a maximum amount of $560.⁵⁹

Direct compensation in the form of pension credits and allowance policies (such as the attendant allowance provided by Veterans' Affairs Canada and the policy implemented by the Government of Quebec that provides $600 per year for respite services) are different ways of compensating caregivers. Currently, the Canadian Pension Plan (CPP) does not provide benefits to employees whose caregiving responsibilities prevent them from participating in the labour force. However, the CPP allows employees to exclude zero earnings spent while caring for a child under the age of seven from pension calculations. A similar policy for elder care would mean that reduced earnings during the caregiving period would not result in lower future pension benefits. Major amendments to the CPP require the approval of at least two-thirds of the provinces and may be associated with increased costs to individuals and employers to compensate for their extension.

The benefits of policies such as such as tax credits, pension schemes, caregiver leaves, and payment to caregivers may be inadequate to support informal caregivers of individuals with Alzheimer's disease. New financial and workplace informal caregiver support policies are needed. They could be evaluated by surveys to determine the support that Canadians give to policies that support caregivers of individuals with Alzheimer's disease. Each policy that is implemented should be linked with an appropriate evaluation.

Governmental workplace supports

In September 2002, the federal government agreed to modify existing programs to allow Canadians to provide compassionate care for a gravely ill or dying child, parent, or spouse without putting their jobs or incomes at risk (Speech from the Throne, September, 2002). The Kirby Committee also recommended that employment insurance benefits be provided to relatives assisting the terminally ill, and the Romanow Commission⁶⁰ recommended that the federal government "develop proposals to provide direct support to informal caregivers to allow them to spend time away from work to provide necessary home care assistance at critical times" (p. 183). The 2003 federal budget reflected these recommendations by expanding Employment Insurance to provide compassionate care leave for those caring for a child, parent, or spouse who is gravely ill and dying. This bill was recently defeated. Several provinces (British Columbia, Quebec, and Ontario) have also introduced statutory provisions for family leave without loss of pay.

The above results suggest that there is inadequate information related to general, targeted, and community interventions for Alzheimer's caregivers upon which to base policies to support these caregivers. This work would encourage spin-off studies and partnerships with governmental (e.g., Statistics Canada) and non-governmental agencies and among funding agencies (e.g., CIHR and the U.S. National Institute on Aging).

Methodological challenges of observation and intervention studies

Measures of the outcomes of Alzheimer's caregiving

Based on a systematic review of intervention trials in the international literature,⁶ four measurement constructs were identified for assessing outcomes of intervention studies: quality of life, for example, caregiver burden, coping mechanisms, social support, and marital adjustment; symptoms of psychological distress, such as depression or anxiety; social significance, such as health care utilization, costs to the health care system, or impact on institutionalization; and, social validity such as satisfaction with care processes. Both observational and intervention studies conducted in Canada used one or more of these constructs, with few using the same methods of measuring them.

Design and implementation of studies of interventions to support caregivers

Most of the located Canadian randomized controlled intervention studies reported limited effects, with no meaningful reductions in caregiver burden.^43-46,48,61 While differences sometimes emerged immediately following the intervention,^43,46 they did not endure over time. The exception to the above was a multi-centre randomized controlled trial⁴⁹ that reported significant differences between caregivers in the control group and those in the intervention group in terms of reactions to, and frequency of, behavioural problems, particularly disruptive behaviours.

Methodological problems inherent in intervention studies may partially account for their limited effects. Seven randomized controlled trials have been published in Canada.^{43-46,48,49,61} The overall sample sizes for the seven studies ranged from 21 to 158, with a mean sample at outset of the study of 67. However, six of the seven trials had high levels of subject attrition^{43,44,48,49,61} because of death or institutionalization of the care recipient, which may have led to having too few subjects to demonstrate statistically significant results. Several studies mentioned difficulties in recruiting subjects, which could have resulted in non-representative samples of caregivers, for example, those with more time for caregiving or caregivers with moderate levels of burden. Interpreting the practical implications of significant results is difficult because one cannot determine whether the changes are clinically meaningful or relevant to policy.

The above-mentioned problems with intervention studies are consistent with those highlighted by Schulz and colleagues in their review of 43 international intervention studies published since 1996.⁶ This review reveals that caregiver interventions evaluated to date are short-lived, involve outcomes of minor importance, and do not have an appreciable impact on the quality of life or psychological functioning of caregivers of individuals with Alzheimer's disease. This lack of impact may be due to methodological problems in the studies or to the fact that the interventions do not have the ingredients required to have an important enough effect on caregivers.

How do we increase capacity for Alzheimer's caregiver research in Canada to ensure the proposed research is carried out?

One of the obstacles facing Alzheimer's caregiver research in Canada is the limited number of researchers in the field. A national effort should be established to support existing research and to attract newcomers to this field.

Caregiver researchers require more input from interdisciplinary groups in universities and communities (for example, psychiatry, geriatrics, neurology, sociology, community development, and psychology) and more time to spend on their research. Education programs should include more research practicums that allow students to develop advanced research skills. Faculty should also be released from teaching to allow for more time spent on research; the Social Sciences and Humanities Research Council of Canada (SSHRC), for example, has a program through which faculty can apply for release time from courses to pursue research.

National conferences on caregiving would also continue a dialogue related to the learning needs and development of people with research interests in informal Alzheimer's caregiving. Additionally, if the number of intervention studies for caregivers of individuals with Alzheimer's disease is to increase (a need identified in the December 2002 Workshop), opportunities for established social scientists to change their research programs must be established. During their retraining, social scientists would develop skills in areas such as alternative research designs, methods of monitoring, coordinating and conducting randomized controlled trials and related intervention research designs, alternative trial enrollment strategies, randomization techniques, and analyses, such as "intent to treat" analyses. The Canadian Health Services Research Foundation's Career Re-Orientation Award is an example of an initiative to help increase the number of health services researchers.

Finally, research on caregiving of individuals with Alzheimer's disease must include an examination of the best methods for disseminating the results of studies and of collaborating on methods of research. Researchers should incorporate users of research in the research process.

Acknowledgements

We would like to thank Fulvia Baldassarre and Nadia Scornaienchi for their assistance with the literature search. We would also like to acknowledge the input of the following individuals who participated in the Workshop and/or provided comments on earlier drafts of this paper:

This work is supported in part by the Canadian Institutes of Health Research Institute on Aging, Institute on Gender and Health, and Partnerships and Knowledge Translation Portfolio and by the Elisabeth Bruyère Research Institute.

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Author References

Larry W Chambers, Elisabeth Bruyère Research Institute, Ottawa, Ontario, Canada and Department of Epidemiology and Community Medicine, University of Ottawa, Department of Family Medicine and School of Nursing, University of Ottawa, Canada

Alexandra Hendriks, Heather L Hall, Elisabeth Bruyère Research Institute, Ottawa, Ontario, Canada

Parminder Raina, Department of Clinical Epidemiology & Biostatistics, Faculty of Health Sciences, and McMaster University Evidenced-based Practice Centre, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada

Ian McDowell, Department of Epidemiology and Community Medicine, University of Ottawa, Ontario, Canada

Correspondence: Larry W Chambers, Elisabeth Bruyère Research Institute; 43 Bruyère St.; Ottawa, Ontario, Canada K1N 5C8; Fax: ( 613) 562-4266; E-mail: lchamber@scohs.on.ca

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