Canadian Centre on
Disability Studies: Research Outcomes: Aging and Disability
Persons with
Disabilities as Caregivers: Understanding
Support Requirements and the Path to Developing Effective
Models for Caregiving Assistance
March 2008 and
November 2008
Background
Caregiving is an essential element of
Canada’s social support system. It
involves the direct and unpaid provision of care to other adults (including
relatives, friends, neighbours, and acquaintances). Because it is neither paid
nor provided through a volunteer agency, it is very difficult to measure the
exact amount of caregiving that is provided. It depends on the strength of
relationships among people who require some form of care and those who are able
and willing to provide it. Without it, however, our system of social supports
would crumble. It is estimated these unpaid caregivers contribute some $5
billion worth of labour which amounts to more than 80% of the care required
(Fast Niehaus Eales and Keating, 2002).
While more and more research has provided profiles of these caregivers
and the nature of the care they provide, one subgroup of caregivers has been
absent from these profiles—caregivers with disabilities. The Canadian
Association of the 50 Plus (CARP, 1999) has generally identified caregivers as
“silent victims in a silent system”, caregivers with disabilities seem to be
even more silent or invisible. They are without a voice.
While there is an emerging literature
and body of research focusing on people with disabilities as recipients of
caregiving, there is a somewhat stereotypic void in the literature when it
comes to a focus on people with disabilities as the providers of informal care
to other adult family members, friends, neighbours, and
acquaintances. Yet, anecdotal evidence derived
from the disability community suggests that informal caregiving to other adults
by people with disabilities is actually quite common in Canada and that there
are many serious gaps in our support systems which create significant barriers.
Our systems of support have developed out of a historical view of people with
disabilities as solely recipients of caregiving. With the introduction and
acceptance of the social model of disability, we can begin to recognize the
need to step outside this stereotype and recognize that people with
disabilities can assume and have been assuming a much wider range of roles
within their families and communities, including that of caregiver. But as
providers of support, people with disabilities have requirements for assistance
to carry out these roles. There is, therefore, a need for our system of
supports and services for people with disabilities to recognize these
requirements.
Introduction
As a group, caregivers with disabilities
are invisible in terms of research. They have been excluded from policy,
program, and service development as well as from general caregiving
strategies. There is a paucity of
information concerning the profile of this population, the nature of the services
they provide, and their unmet needs. In late 2007, Human Resources and Skills
Development Canada issued a request for proposals to conduct policy-related
research investigating people with disabilities who provide or wish to provide
informal caregiving to other adults. CCDS was awarded the contract. The study
was conducted between March 2008 and November 2008. It included an extensive
literature review and environmental scan as well as the gathering of
qualitative data during which twenty-eight people were interviewed as key
informants. Of these 28 participants, 21 were caregivers with disabilities from
the provinces of British Columbia, Alberta, Manitoba, Ontario and Nova Scotia
and the remaining seven participants were service providers, policy makers, or
researchers from British Columbia, Manitoba and Nova Scotia.
Results
Demographics and the nature of the
caregiving including living arrangements, supports received and gaps in the
support system were captured. The study found that caregivers with disabilities
provide a wide variety of services to care recipients which sometimes results
in the recipients experiencing greater community participation and even
employment. Often, the care is reciprocal between the dyad. Consistent with
mainstream caregivers, family and friends perform a critical role in
supplementing supports. Important findings regarding the complex caregiving
process were inadequate home supports, inadequate community supports, and
inflexible policies. Caregivers with disabilities identified a lack of
recognition by family, friends and the system for the work they carry out.
Policy makers, service providers and researchers acknowledged this lack of
recognition of the caregivers’ work. In our study, we found that policies and
proposed caregiving strategies do not address this critical area, and we made
the case that this is an essential subject to study in light of our aging
population which will lead to an increasing number of caregivers who will be
disabled themselves while providing care to increasing numbers of people who
are also aging or have aged into disabilities. Recommendations were provided
for future policy development, service provision, and research. A major
recommendation was to dismantle the aging and disability silos to ensure
neither group is “lost” in service provision, policy, and programming.
This is the first Canadian study of
caregivers with disabilities and the researchers were unsuccessful in locating
international research. This study begins to address gaps as identified by the
Disability Knowledge Strategy, by focusing upon adults with disabilities in
Canada and the difficulties they face when contemplating or assuming the role
of caregiver to other adults. It provides rich qualitative data and insights to
guide future directions in policy and program development and new research
directions.
Future Research Needs
Given the paucity of research on
caregivers with disabilities, it is clear that further research is required. It
should also be noted that little research exists in the area of various
cultural groups, especially the Aboriginal and First Nations communities. With
the exception of one study (Gahaganet al, 2004), which specifically interviewed
caregivers with disabilities and focused on women as caregivers in Nova Scotia,
this study is the first to address caregivers with disabilities in a broader
context.
The reviewed literature suggested the
need for further research in the general area of caregiving and caregivers
including studies to determine efficiency and effectiveness of various models
of care and models of funding to healthcare (Hollander et al., 2007), the
impacts of an aging population on future health costs and the need to
understand the caregiver trajectory (Grant, Nolan & Keady, 2003), life
transitions (Kramer & Lambert, 1999), the cost of informal care and time
spent (Langa et al., 2002), the determination of carer’s assessment of carer
demands (Wallhagen, 1992A), the development of sound practice models (Canadian
Caregiver Coalition, 2003), and the examination of the types of economic support
models that are most acceptable and beneficial to carers as well as cost
effective to the government (Gerald, 1993). There is a call to support research
on informal/formal caregiver needs and coping strategies in rural and remote
communities to determine the necessary supports required to reduce caregiver
burnout and empower clients and family (Canadian Home Care Association, 2006).
These areas of study are equally applicable to caregivers with disability
studies.
Due to the absence of recognition of
this population in statistical collections, statistical and demographic data is
needed to provide a comprehensive portrait of caregivers with a disability.
National and provincial statistical surveys must take this population into
account in future survey development. This not only includes surveys
administered through Statistics Canada but also data collection of “clients”
through various government health, aging and disability departments.
Additional qualitative and quantitative
research is needed and must address aspects such as the effects of disability
on caregiving with a focus on the effects of various disabilities on the
caregiving experiences, the impact of caregiver disability on caregiver stress
and health, financial implications, relationships with care receivers, and
specific supports to facilitate caregiving. Future research could focus on the
perceptions of friends, family, professionals and the general public regarding
caregivers with disabilities and whether they are valued as a result of
providing care to others. Longitudinal and case studies will be valuable to
understand how gaps in the system impact caregiving outcomes and cost-benefits.
It is important to gather the
caregivers’ with disabilities voices as has been started in this research
project. More qualitative studies are needed to learn the complex interplay of
social systems, policies, the disabilities of two people in the caregiving
team, and their environments. At the same time, large scale surveys with the
assistance of national and provincial caregiving organizations will shed light
on this growing population and needed area of study.
Recommendations
Caregiving is a central part of Canadian
society and everybody has a role in caregiving. This area of study is critical
because our growing aging population means that in the near future we will have
more caregivers with disabilities providing care to older people with
disabilities. A key principle is the provision of supports to balance work and
caregiving commitments to ensure that caregivers are not faced with choosing
between caring for family members or their future financial security (Canadian
Caregiver Coalition, 2003). Health promotion, prevention, and healthy aging are
also key principles to guide support practices for caregiving (Hollander,
2007). Many key concepts from the disability consumer movement (consumer
control, citizenship rights, participation in participation in decision making,
supports to independent living, full participation and contribution to society)
must be a natural part of the caregiving process.
Although this study has provided a great
deal of valuable information, it is only the beginning of research in this
field of study. Caregivers with
disabilities are helping to support an untold number of persons in their homes,
in assistive housing and other situations. Through the extensive, yet
under-recognized effort of caregivers with disabilities, many care recipients
can avoid increases in their formal home support or can delay the need for long
term care. Indeed many care recipients participate in their communities, and
are sometimes employed due to the efforts of this “invisible” group. Often caregivers with disabilities provide
insight and guidance with respect to coping with disabilities and how to
navigate complex support systems due to their experience.
It is clear that caregivers with
disabilities share many of the same barriers and facilitators as do
non-disabled caregivers. However, they also face unique issues due to their own
disabilities and their own need for supports and accessible environments. Many
times support policies do not accommodate both the caregiver and the
carereceiver. They also face, in some cases, different financial constraints
due to their own past limitations with work or limitations in current policies.
This area must rise to international, national and provincial agendas. Questions about caregivers with disabilities
must be placed in all of the relevant Canadian and provincial surveys. This is
not a “niche” target group issue; it is a growing area with the aging of our
population.
For more information visit CCDS’ website
at: www.disabilitystudies.ca
Project Team
Olga
Krassioukova-Enns
Colleen Watters
Laurie Ringaert
Moira Horgan-Jones
Dmitri Enns
Funder:
Human Resources and Skills Development Canada
Disclaimer This
project is partially funded by the Government of Canada. The opinions and
interpretations in this publication are those of the author and do not
necessarily reflect those of the Government of Canada.
CANADIAN CENTRE ON DISABILITY STUDIES
56 THE PROMENADE.
WINNIPEG. CANADA. R3B 3H9 WWW.DISABILITYSTUDIES.CA
Email: ccds@disabilitystudies.ca Phone: 204.287.8411 Fax:
204.284.5343 TTY: 204.475.6223