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

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

FILE – Wet’suwet’en hereditary chiefs have agreed to sign a memorandum on rights and title with B.C. and Ottawa, but elected chiefs are demanding it be called off over lack of consultation. (Thom Barker photo)
Wet’suwet’en hereditary chiefs, Lake Babine Nation get provincial funding for land, title rights

Government says it’s a new, flexible model for future agreements between Canada, B.C. and First Nations.

The property on which a residential school (pictured) that was torn down years ago in Lower Post is to be the location of a cultural centre. (Indian Residential School History and Dialogue Centre photo)
Lower Post residential school building to be demolished, replaced with cultural centre

Project to be funded by federal and provincial governments, Daylu Dena Council

Photo collage of loved ones lost to substance use and overdose. (Photo courtesy Moms Stop The Harm)
B.C. overdose deaths still rising 5 years after public health emergency declared

Moms Stop the Harm calls on B.C. to provide safe supply in response to deadly illicit drug use

Restaurant patrons enjoy the weather on a patio in Vancouver, B.C., Monday, April 5, 2021. The province has suspended indoor dining at restaurants and pubs until at least April 19 in B.C. due to a spike in COVID-19 numbers. THE CANADIAN PRESS/Jonathan Hayward
B.C. sets new COVID-19 daily record with 1,293 cases Thursday

New order allows workplace closures when infections found

The new 3,500 hectare conservancy in Tahltan territory is located next to Mount Edziza Provincial Park. (BC Parks Photo)
New conservancy protects sacred Tahltan land near Mount Edziza Provincial Park

Project is a collaboration between Skeena Resources, conservation groups and the TCG

In this image from NASA, NASA’s experimental Mars helicopter Ingenuity lands on the surface of Mars Monday, April 19, 2021. The little 4-pound helicopter rose from the dusty red surface into the thin Martian air Monday, achieving the first powered, controlled flight on another planet. (NASA via AP)
VIDEO: NASA’s Mars helicopter takes flight, 1st for another planet

The $85 million helicopter demo was considered high risk, yet high reward

Families of two of three workers killed in a train derailment near Field, B.C., in 2019 have filed lawsuits accusing Canadian Pacific of gross negligence. The derailment sent 99 grain cars and two locomotives off the tracks. THE CANADIAN PRESS/Jeff McIntosh
Families of workers killed in Field train derailment allege negligence in lawsuit

Lawsuits allege the workers weren’t provided a safe work environment

(New Westminster Police)
4 youth arrested after 30-person brawl in New Westminster leaves 1 seriously injured

Police are looking for witnesses who saw the incident take place

South Surrey’s Paul Cottrell, who works with the DFO, tows a grey whale out of Semiahmoo Bay Sunday. (Contributed photo)
Dead whale floating near White Rock towed to shore for necropsy

Animal has been dead since at least April 15

Sunday’s storm rocked one of the ferries crossing Kootenay Lake. Photo: Dirk Jonker
VIDEO: Storm makes for wild ferry ride across Kootenay Lake

The video was captured by ferry employee Dirk Jonker

Join Black Press Media and Do Some Good
Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

Dr. Bonnie Henry gives her daily media briefing regarding Covid-19 for the province of British Columbia in Victoria, B.C, Monday, December 7, 2020. THE CANADIAN PRESS/Jonathan Hayward
Toddler marks youngest British Columbian to die related to COVID-19

Child one of eight people to die from virus this weekend

Chakalaka Bar & Grill remains open in defiance of orders from Island Health to close. (Cole Schisler photo)
B.C. health authority seeks injunction against restaurant defying COVID-19 orders

Chakalaka Bar and Grill plans to continue serving customers without public health compliance

Pharmacist Barbara Violo arranges all the empty vials of the Oxford-AstraZeneca COVID-19 vaccines that she has provided to customers at the Junction Chemist which is a independent pharmacy during the COVID-19 pandemic in Toronto, on Monday, April 19, 2021. THE CANADIAN PRESS/Nathan Denette
B.C. to open up AstraZeneca vaccines for all people 40+, set up clinics in hot spots

A total of 13 neighbourhoods and communities will receive the AstraZeneca vaccine

Most Read