British Columbia

Caregivers' needs shouldn't be overlooked by doctors, says Alzheimer Society of B.C.

When John Mann, frontman for the iconic Canadian Celtic rock band Spirit of the West, was diagnosed with early-onset Alzheimer's, his wife's world was turned on its head.

Current treatment of Alzheimer's and dementia often neglects the needs of caregivers, says CEO of ASBC

Jill Daum, the wife of Spirit of the West's John Mann, says caregiving can be overwhelming. (John Rieti/CBC )

When John Mann, frontman for the iconic Canadian Celtic rock band Spirit of the West, was diagnosed with early-onset Alzheimer's, his wife's world was turned on its head.

Jill Daum watched her husband slowly lose his memory and speech. She's now in charge of all his health decisions, manages the family's finances and is his primary caregiver.

"It's an incredible loss and it's an inescapable loss, because you're living with it every second," she told host Gloria Macarenko on CBC's BC Almanac. "It's so difficult and so painful and draining as well."

According to the the Alzheimer's Society of B.C., more than one million Canadians are impacted by dementia, many of whom are also caregivers. The organization's CEO, Maria Howard, says many caregivers often end up completely overwhelmed but get little support from the health system for their mental wellbeing.

"The health care system is still set up around 'the patient,'" said Howar. "And theres not yet a lot of recognition of what the caregivers [are going through]."

Time for a change 

Alzheimer's is the most common form of dementia, a degenerative brain disease that slowly limits one's ability to think, remember and perform daily physical functions.

Each case is unique, but symptoms tend to worsen over time.

It changes the person and this changes the relationship with the family, the caregivers and the care partners," said Howar.

Watching a loved one endure the disease can be traumatizing, so Howar says the Alzheimer's Society of B.C. is advocating for the Ministry of Health to change how doctors treat Alzheimer's and dementia patients by also including the health needs of families and caregivers.

"We have to get the physicians much more educated, so when a person comes in that might have some symptoms of Alzheimer's, doctor's think to ask how the caregivers are doing."

Howar also says the ASBC wants to see increased training for health professionals, so they're more prepared to deal with Alzheimer's patients.

"It's surprising, but many of our healthcare professionals don't have that direct training. They don't have that knowledge," she said.

At the end of the day, she says increased engagement between caregivers and doctors will benefit both the patients and their loved ones.

"Just because a person may now have a limitation because of Alzheimer's doesn't mean they can't give another way. We have to see the person first, rather than the disease."

With files from CBC's BC Almanac


To listen to the full interview, click on the audio labelled: Caregivers' needs shouldn't be overlooked by doctors, says Alzheimer Society of B.C.

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