Seniors in need, caregivers in distress:

34 Health Council of Canada
All provinces and territories in Canada provide respite
services for family caregivers, although access to these
services varies widely. Some regions charge user fees,
while others determine fees and eligibility according to
income and assets. 5 When considering the costs and
benefits of supporting caregivers, the consequences of
failing to support them should also be considered. 29
A study of caregivers of people who are dying found that
most caregivers want information about issues such as
pain management, how to navigate the system, respite,
practical details about giving care, expectations of disease
progression, how to deal with the care team, and legal/
financial information. These information needs could be
applied to family caregivers in general. Some of the barriers
to receiving appropriate and timely information include a
lack of coordinated and consistent providers, an absence
of 24/7 services, poor communication skills, lack of
emotional /spiritual support, and lack of knowledge of
dealing with cultural diversity. 52
Caregivers often believe it is crucial for them to be involved
in making decisions about their loved ones, but they don’t
feel entitled to ask questions or don’t know the appropriate
questions to ask. Families who are better informed have
been shown to experience less anxiety. It is also important
to acknowledge that needs for information are not constant
and are continually changing. 52 Recently, New Brunswick
released a new guide for family caregivers that provides
tools for caregiving, as well as practical advice for adapting
lifestyles to ensure better quality of life for both care
recipients and caregivers. More information is available
at gnb.ca /seniors.
The Canadian Caregiver Coalition has put together a
framework for a Canadian Caregiver Strategy that would
include maintaining the health and well-being of caregivers,
increasing the availability and flexibility of respite,
minimizing the financial burden, increasing access to
information and education, creating flexible workplaces,
and investing in research on caregiving. 53 The Canadian
Caregiver Coalition, as well as the Special Senate
Committee on Aging, have recommended a National
Family Caregiver Strategy to ensure that Canadian
caregivers are able to continue caring for their loved
ones while maintaining their own health, well-being,
44, 53
and quality of life.
Some Canadian home care programs are piloting a tool to
assess the needs of caregivers called CARE (Caregiver’s
Aspirations Realities and Expectations). 54 Use of this tool
in a home care setting increased awareness of caregivers’
needs among providers, gave credence to the role of
caregivers, and served to validate their concerns. A version
of this tool is currently being piloted in different home care
settings and there are plans for further testing. To date,
it has been shown to be a promising and appropriate tool
to assess the caregivers of those receiving home care
services. 54
Caregivers
don’t feel entitled to ask questions or don’t
know the appropriate questions to ask