Research turns attention to family care

Canada needs to rethink how it manages the role of formal care, as opposed to family care, for dementia patients in order to avoid caregiver burnout, one Western Nursing professor contends.

“What I’m suggesting is we need to re-conceptualize and manage family care and formal care resources a lot differently, and that part is the hardest,” said Catherine Ward-Griffin, a professor in the Arthur Labatt Family School of Nursing. “There’s always the notion we need more money to change the system, which we do, but I think what’s just as challenging is our attitude and the way we see this issue.”

Using the term ‘burnout,’ she said, tends to re-enforce the problem and, then, therefore the solution, lies only with the caregiver. That’s an unsustainable idea, she contends.

In her research, Ward-Griffin attempts to step back and ask what is going on in terms of the factors, particularly the social and political aspects that can lead to the idea of ‘caregiver burnout.’

Services and programs do exist in the community to provide much-needed support for those with dementia and their caregivers. But, she said, the thing people don’t see is there’s a long wait time to get on lists for such services – and it’s not cost free.

“For those of us in privileged positions, it can be simple. But the people who need it the most are the ones who can’t access it – be it transportation issues or job issues,” Ward-Griffin said. “We really have a very one-size-fits-all mentality. We need to think about how we provide care resources that are accessible and available in order for them to be considered adequate.

“Those with the least amount of resources are the ones most struggling with inadequate care resources. We have to challenge the current assumption that formal care is expensive and family care is inexhaustible and free, because it’s not.”

The needs of the people with dementia, and their family caregivers, are drastically compromised with this current approach, added Ward-Griffin.

“I’m not claiming caregivers are not burdened, because they are, but they’re burdened mostly because the current approach to home care or elder care tends to overuse, and I would even go as far to say rely, on family care to the point of exhaustion.

“It’s actually a very inappropriate, not only from an ethical standpoint, but even an economic standpoint.”

With funds from the Alzheimer Society Research Program, Ward-Griffin conducted interviews with caregivers, health-care providers and case managers. The bottom line? For too long society has relied on frameworks that highlight care needs to be located within the family.

She hopes her research will kickstart a conversation and create greater awareness that the status quo is not the solution. Families and their needs have changed dramatically over the years. We no longer have traditional family situations, Ward-Griffin said. It’s an out-dated notion that families will simply do it.

“They’ll take on things because they expect it of themselves, other people expect it, our formal care system certainly expects it – to the exhaustion of not just the person caring for the family individual,” she said.

While Ward-Griffin would like to see the call for a national dementia care plan move forward, in the mean time, the status quo won’t suffice.

“It’s really short-sighted. The incidents of dementia are on the increase, and as it continues to rise, the cost to provide care continues to rise,” she said. “It has to receive our attention. We can no longer ignore it and think families will do it. The issue is broader than the individual; it’s broader than the family caregiver. This is something we all need to work on. It’s better for policy makers, families and health-care practitioners to work together and really think of a better way of doing things.

“It’s an attitudinal adjustment; it’s not just financial. But we do need the flow of funds. Much of what is happening in my research is (the problem is) not as visible as you’d see in general health care because it tends to be home care and community care. We need to uncover these situations where we need to acknowledge that we not only have a stake in making those changes, but a stake in finding the solutions.”

While not a quick fix, Ward-Griffin added progress needs to be made as soon as possible.

“Rather than pitting formal care against family care, we need to come up with a collaborative notion of how we are going to actually make this possible – that our most vulnerable citizens, and the people caring for them, are not left holding the bag,” she said. “Policy needs to be readdressed and acknowledge that a family’s capacity to provide complex care over time is not possible, therefore we need to have other resources that will not just supplement, but are truly supporting families and not just giving them lip service.”