Researcher shows how society sanctions caregiver burnout

There are myriad reasons why family caregivers of those with dementia burn out. Western University nursing professor Catherine Ward-Griffin aims to uncover the unspoken assumptions that make it so, and then do her best to address them.

“We have – at times unknowingly – contributed to family caregiver burden and I think we need to see the bigger picture,” says Ward-Griffin. “The ways in which dementia home care have been organized, it shouldn’t surprise us that crises are waiting to happen.”

Funded by the Alzheimer Society Research Program, she and her colleagues conducted extensive interviews and observations of those involved in the caregiving network of nine people with dementia in southwestern Ontario. This included 25 family caregivers, 10 formal healthcare providers and seven case managers.

The findings revealed a number of largely unacknowledged and potentially destructive social values, beliefs and practices, but one stood out: the assumption that formal care resources are scarce, which by default means family care resources are abundant.

In other words, the formal health care sector depends too heavily on families and friends to provide the bulk of care. The researchers found that society assumes they should call on the formal health care sector only as a last resort. That includes asking for a personal support worker, respite care and even adult day care.

Families burdened beyond capabilities

“We take family caregiving for granted,” says Ward-Griffin. “But guess what? Families are being burdened beyond their capabilities. Our current system is premised on a faulty assumption that family members are available and able to provide complex care.”

The study also showed the notion of accessible community resources was more rhetoric than reality.

Many family members didn’t know who to turn to, or which services existed. And even when they did, barriers were formidable, including long waiting lists for respite care and rigid eligibility requirements for home care support.

Ward-Griffin argues that while the health care sector talks a lot about partnering with family members, true partnerships don’t happen as often as they should. And as a result, families end up paying for a fragmented system.

“When people claim it costs so much more to care for someone in hospital or a long-term care bed than at home, it’s because we don’t take into consideration the time and money involved in family care,” she says.

-Story from The Alzheimer Society of Ontario. Visit http://www.alzheimer.ca  for more.

Visit, or call the Prince Edward County Alzheimer Office at 90 King St., Picton (corner Paul and King) for information, resources, education, support and counselling. 613-476-2085