Jill Daum and her husband John Mann, lead singer of Spirit of the West, pose for a photograph in Toronto on Friday, April 29, 2016. Mann, who was diagnosed with Alzheimer’s disease at the age of 52, died Wednesday. THE CANADIAN PRESS/Nathan Denette

Services needed in B.C. for early-onset Alzheimer’s disease patients: doctor, advocates

More patients are being diagnosed with Alzheimer’s at an earlier age

Being told he was too young to have Alzheimer’s disease would always catch Jim Mann off guard, but it was a nurse’s comment dismissing his condition that really stung.

“She looked me up and down and said, ‘Well, you look fine,’ ” said Mann, who was 58 when he was diagnosed with early-onset Alzheimer’s, a term used when the form of dementia strikes people under age 65.

Mann, now 71, said the nurse made the remark in an emergency ward six years ago while he was there for an unrelated concern and mentioned he’d need his wife, Alice Mann, to stay with him because he had Alzheimer’s disease.

Mann is a passionate advocate for Alzheimer’s patients as a volunteer with the Alzheimer Society of British Columbia and said the awareness that Spirit of the West lead singer John Mann, no relation, created before his death this week will go a long way toward educating the public about the condition that can come with a lonely and isolating existence.

“It’s a cognitive disorder,” he said. “It almost gives people licence to make jokes about it or to question the legitimacy of your diagnosis just because it isn’t physical.”

Alzheimer’s patients already face enough stigma but those who are diagnosed at a younger age deal with more of it, Mann said.

“The biggest thing is questioning of the diagnosis because you’re able to have a conversation. The assumption is you don’t have it, period. I had someone say to me, ‘You don’t have a diagnosis. Look how well you’re dressed.’ “

Mann decided to see his doctor when he started becoming increasingly disoriented, disorganized and forgetful, often stopping in the middle of a task in the kitchen and trying to figure out what he was supposed to be doing next and even leaving the stove on.

ALSO READ: Here’s what you need to know about dementia, and ways to reduce your risk

His advocacy work has given him a purpose, and that’s what he said patients need to focus on so they have a reason to get out of bed in the morning.

John Mann, whose work as a songwriter for the Vancouver-based band earned him four Juno nominations, died Wednesday at age 57, five years after he announced he had early-onset Alzheimer’s disease.

In 2016, the documentary “Spirit Unforgettable” captured the toll the disease had on his ability to perform but it is also a great educational tool to create awareness of the ravages of the disease, Jim Mann said.

The singer, along with his wife Jill Daum, also shared their story at events hosted by the Alzheimer Society of B.C.

Dr. Haakon Nygaard, a neurologist at the University of British Columbia’s faculty of medicine, said Alzheimer’s weakens the body because patients often lose their appetite and can’t sleep, becoming frailer and sometimes die of pneumonia or heart failure.

Patients with an early-onset diagnosis face greater challenges because they often have children still living at home and find themselves trying to keep pick-up and drop-off schedules straight while their performance at work also suffers, he said.

However, many of the services available for Alzheimer’s patients are geared toward seniors.

“What’s frustrating for us is that younger individuals have trouble accessing the right resources,” Nygaard said.

More patients are being diagnosed with Alzheimer’s at an earlier age, and that may be because of greater awareness created by John Mann and others, he said.

Sharon Tong, support and education co-ordinator for the Alzheimer Society of B.C., said she links patients and families with resources in Cantonese and Mandarin, though services are also offered in Punjabi.

Shame often keeps people from revealing an Alzheimer’s diagnosis, which is sometimes wrongly connected to mental illness or myths about eating certain foods or having some connection to metals, she said.

In April, the society launched a help line in Chinese that some people feel more comfortable calling rather than asking questions in person, Tong said, adding she also facilitates community workshops and forums with guest speakers including doctors and nurses who provide education.

The society also recently developed an initiative in partnership with the City of Vancouver to train city workers and volunteers on how best to support community members living with dementia.

In January, the Alzheimer Society of Canada will launch an anti-stigma campaign for a third year with the tag line: “I have dementia. Let me help you understand.”

Camille Bains, The Canadian Press

Like us on Facebook and follow us on Twitter.

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Chronic Chilliwack animal hoarder banned from owning animals for life without SPCA approval

Michael Clendenning had 51 cats, rabbits and dogs seized due to serious physical and mental distress

Abbotsford homeless advocate killed by RCMP in Lytton

Barry Shantz spearheaded getting harm-reduction services in city, changing bylaws around homeless

Chronic animal hoarder to be sentenced in Chilliwack court Friday

Michael Clendenning had 51 cats, rabbits and dogs seized due to serious physical and mental distress

Rude awakening: 1.6-magnitude earthquake rouses residents from their sleep

The quake was detected 3 km east-northeast of Agassiz

Chilliwack working on regional licensing to make way for ride-hailing

Two ride-hailing companies get the go-ahead to operate in Metro Vancouver and beyond

VIDEO: Mass coronavirus quarantines seen in China won’t happen in Canada, authorities say

‘If a case comes here, and it is probably … it will still be business as normal’

Province’s oldest practising lawyer shares advice at her 100th birthday party

Firefighters bring Constance Isherwood a cake with 100 birthday candles

Vernon woman suing McDonald’s for spilled coffee

Woman seeking nearly $10K, says employee failed to put lid on properly

5 things you need to know to start using ridesharing in Metro Vancouver

From how to get started to where drivers can take you, heres all you need to know

Diners’ health tax not catching on in B.C., restaurant group says

Small businesses look for options to cover employer health tax

B.C. comic wins judgment after club owner slaps cellphone out of his hands

Incident happened last summer when Garrett Clark was performing in Abbotsford

Mayors call for ‘calmness’ as highway rockslide cuts Tofino, Ucluelet off from supplies

Ministry of transportation expects to open road for “essential travel only” from noon-8 p.m. Friday.

Owner surrenders dog suffering from days-old gunshot wound to B.C. SPCA

The dog was also found to be emaciated and suffering from a flea infestation

Most Read