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

Nearly 20 individuals accessed LRCA’s cold weather shelter during 2020 snowstorm

Most individuals accessed the shelter for food, showers, laundry, and to warm up

Shoot the Moon pub passes public hearing stage

Rod Alsop and Jon Ludtke’s proposed pub is one step closer after a packed public hearing

Nanaimo-Ladysmith MP visits Wet’suwet’en camps, calls for Coastal GasLink pipeline to be ‘revisited’

Paul Manly met with Wet’suwet’en hereditary chiefs and the RCMP to talk about the ongoing situation

BREAKING: LSS evacuated after reports of ‘gas smell’

Students were evacuated to Frank Jameson Community Centre, but have since returned to class

Successful end to search for kayakers along the Chemainus River

Father and son located tired and cold, but otherwise OK

‘Presumptive case’ of coronavirus in Canada confirmed by Ontario doctors

Man in his 50s felt ill on his return to Canada from Wuhan, China

VIDEO: Drone footage shows extent of damage in Highway 4 rockslide

Tofino, Ucluelet still cut off from rest of the island, as crews work to repair roadway

People knowingly take fentanyl so make policy changes to reduce harm: B.C. study

Dr. Jane Buxton, an epidemiologist at the centre, says drug users need more resources,

‘My heart is going to bleed’: Bodies brought back to Canada following Iran plane crash

Remains of Sahar Haghjoo, 37, and her eight-year-old daughter, Elsa Jadidi, were identified last weekend

UBC grad and sister killed in Iran plane crash had bright futures ahead, close friend says

Asadi-Lari siblings Mohammad Hussein and Zeynab were two of 57 Canadians aboard downed Flight PS752

BCLC opens novelty bet on Harry and Meghan moving to the west coast

Meanwhile, real estate agency points to four possible homes for the family

Canada slips in global corruption ranking in aftermath of SNC-Lavalin scandal

The country obtained a score of 77, which places it at the top in the Americas

Wuhan bans cars, Hong Kong closes schools as coronavirus spreads

Hong Kong leader Carrie Lam said her government will raise its response level to emergency, highest one

Most Read