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So many questions: not enough answers for dementia caregivers

Alzheimer-MonthSeptember is World Alzheimer’s Month, an international campaign to raise awareness and challenge stigma. In Ontario alone, 200,000 people are living with dementia. Within just a few years, the numbers will be staggering.

The real demographic pressure will begin in 2021 when the first wave of baby boomers turns 75.

People in rural communities, so the stereotype goes, support one another in times of need.

While that may be true, recent research shows that when it comes to helping neighbours care for family members with Alzheimer’s disease, rural residents are no better off than city-dwellers.

In fact, rural caregivers have fewer places to turn for insight into the disease and how to best care for someone with dementia at home, says Dorothy Forbes, University of Alberta associate professor of nursing.

Which is why she and her team conducted in-depth research into what information rural caregivers in Southwestern Ontario.

“The ultimate goal is to understand how we can support family caregivers better,” says Forbes, a former home care nurse whose clients often included those with dementia. “We have to make the information they need accessible and in a form they can use.”

Funded by the Alzheimer Society Research Program, Forbes and her team conducted a series of 80 interviews with rural residents with dementia, their family caregivers and health care providers. The 90-minute long interviews – at the beginning of the project, at six months and at one year – yielded some important insights.

So many questions: not enough answers

Participants said they needed more information about how a diagnosis is made and who makes it. They also wanted to know how quickly the disease progresses and what treatments are available.

And finally, they wanted to know what resources, such as respite care, are available and what to do when the person with dementia can no longer be cared for at home.

But when the interview team asked rural residents where they sought answers, they were taken aback by the response.

“It was not very often a health care provider, which was disappointing,” says Forbes.

Instead, people turned to family or friends, and occasionally to the internet, with varying results.

Part of the problem, suggests Forbes, is that health care providers don’t always have access to the best information about dementia care.

Now she hopes to use what she learned to set up another study in which a “dementia care knowledge broker” will change the culture in home care settings so health care professionals, such as personal support workers, can easily access dementia care information.

Forbes hopes to discover that home care workers continue to offer quality information and advice to families, even after the knowledge broker is gone.

“I want people to have hope, to feel supported,” says Forbes.

-From the Alzheimer Society of Ontario

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