It's time to care for the caregivers

Hey there, time traveller!
This article was published 3/4/2018 (509 days ago), so information in it may no longer be current.

The first Tuesday in April — today — is officially Caregiver Recognition Day in Manitoba. It seems appropriate to stop and reflect on how we support these family members who provide such a crucial role, including those caring for older adults facing chronic, often complex or life-threatening conditions.

Policy-makers and politicians often assume that providing formal care services for older adults has a "substitution effect" — essentially displacing family care. Research has debunked this, showing that family members supplement and complement formal care services and as a result are not only less burdened (and in the long run, themselves healthier) but also freer to enrich the quality of life of their family member in other ways, such as social and emotional support.

When asked what was their "biggest struggle," challenges related to accessing supports and resources for care recipients were the most frequently mentioned concern among 400 caregivers whom I consulted in 2012 (for the provincial government at the time). A third of survey respondents in those consultations also reported needing either "quite a bit" or "a lot" more help with system navigation — which includes learning about available resources, securing access to them and coordinating and overseeing them.

Has this gotten better or worse since 2012?

It’s hard to tell. I have little reason to believe there has been substantial improvement in addressing root causes of the problem, such as a lack of clear information about services and resources, fragmentation and bureaucratic rigidity and complexity. The Winnipeg Regional Health Authority, to its credit, created formal system-navigator positions to help families of older adults transitioning into personal care homes. This initiative could be expanded.

Voluntary and non-profit organizations also play an important role — but are often under-resourced — and private consultants offer navigational help for those who can afford to pay. Provincially, the Seniors Resource Guide was last updated in 2015-16 and there are no current plans for further updates. There is also an online database (Manitoba 211) for searching for government health and social services.

However, when I used the database and indicated I was looking for "home care" and "Winnipeg," this returned a befuddling array of results, most of which were personal-care homes. A seniors-specific section includes a subsection on "home health care" with more relevant results, yet these still did not provide meaningful direction about how to proceed.

Since the 2012 consultations, I conducted further in-depth research with 32 caregivers to older adults living in or near Winnipeg. Study results provided preliminary evidence that frustrations associated with system navigation can add to the stress of providing care (or, as we often refer to it in scholarly literature, caregiver burden).

Caregivers in that study spoke about the extra time and work involved in searching for information about services and resources, especially when existing information could be hard to find, vague and contradictory. They spoke about the time and energy involved in getting access to particular resources, especially when there were delayed responses from providers (or no response at all), or convoluted and inflexible assessment and application processes, even for simple needs (including compression stockings, tax credits and referrals).

Successfully accessing services often depended on whether the caregiver connected with a key person (who helped open the door, so to speak), or whether they persistently advocated (the "squeaky wheel"). Lastly, participants spoke of the time and work of coordinating, overseeing and sometimes "prompting" or reminding services to make sure they worked effectively.

As well as the additional time demands, difficult system navigation experiences often left caregivers feeling lost, exhausted, stressed and frustrated. It also eroded their trust in formal services. Ultimately, some caregivers just gave up trying to access help.

Although navigating the maze of services, policies and systems is crucial to accessing help for older adults, to say that this can be a struggle for families is an understatement. It is also work that takes away from individuals’ time for self-care and for actually caring for their family member.

And although system-navigation supports can help alleviate the burden, we need to realize that navigating systems is more difficult and more time consuming when services and policies are fragmented, excessively bureaucratic and uncoordinated. Let’s start by simply making it easier for caregivers to get help for the person they are caring for. It is the least we can do.

Laura Funk is an associate professor in the department of sociology and criminology at the University of Manitoba.