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

Campbell River’s emergency services personnel conducted a Holiday Checkstop on Dogwood Street Dec. 5. They were asking people to stop into the Curling Club parking lot on Dogwood Street and make a donation to the Knights of Columbus Christmas Hamper Drive. Photo by Alistair Taylor – Campbell River Mirror
Holiday Checkstop

Campbell River’s emergency personnel collect donations to the Christmas Hamper Drive

Marc Rutten, general manager of engineering services for Comox Strathcona Waste Management. Black Press file photo
Comox Strathcona cutting tax requsition for region’s waste management

Staff also expect to transfer savings associated with COVID-19 to reserves

Coral Gaurk and Chelsea Masters of Little River Childcare are hosting a “stuff the bus” fundraiser for the Knights of Columbus Christmas Hampers in the Thrifty Foods/Campbell River Comon parking lot on Saturday, Dec. 12 between 11 a.m. and 3 p.m. Photo contributed
Stuff the Bus for Campbell River’s Christmas Hamper Fund

Little River Childcare is hosting a “stuff the bus” fundraiser for the… Continue reading

The City of Campbell River sits on the shore of Discovery Passage and is back by the mountains of central Vancouver Island and Strathcona Park.
Funding available for downtown Campbell River building safety changes

Funding is available for property owners and business operators interested in changing… Continue reading

A snow moon rises over Mt. Cheam in Chilliwack on Feb. 8, 2020. Friday, Dec. 11, 2020 is Mountain Day. (Jenna Hauck/ Chilliwack Progress file)
Unofficial holidays: Here’s what people are celebrating for the week of Dec. 6 to 12

Mountain Day, Dewey Decimal System Day and Lard Day are all coming up this week

Robert Riley Saunders. (File)
First Nations Leadership Council demands justice for victims of B.C. social worker

Union of BC Indian Chiefs calls actions of Robert Saunders ‘nothing short of complete depravity’

Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Demonstrators, organized by the Public Fishery Alliance, outside the downtown Vancouver offices of Fisheries and Oceans Canada July 6 demand the marking of all hatchery chinook to allow for a sustainable public fishery while wild stocks recover. (Public Fishery Alliance Facebook photo)
Angry B.C. anglers see petition tabled in House of Commons

Salmon fishers demand better access to the healthy stocks in the public fishery

(Hotel Zed/Flytographer)
B.C. hotel grants couple 18 years of free stays after making baby on Valentines Day

Hotel Zed has announced a Kelowna couple has received free Valentines Day stays for next 18 years

Farmers raise slogans during a protest on a highway at the Delhi-Haryana state border, India, Thursday, Dec. 3, 2020. Prime Minister Justin Trudeau rejected the diplomatic scolding Canada’s envoy to India received on Friday for his recent comments in support of protesting Indian farmers. Tens of thousands of farmers have descended upon the borders of New Delhi to protest new farming laws that they say will open them to corporate exploitation. THE CANADIAN PRESS/AP-Manish Swarup
Trudeau brushes off India’s criticism for standing with farmers in anti-Modi protests

The High Commission of India in Ottawa had no comment when contacted Friday

Montreal Alouettes’ Michael Sam is set to make his pro football debut as he warms up before the first half of a CFL game against the Ottawa Redblacks in Ottawa on Friday, Aug. 7, 2015. Sam became the first publicly gay player to be drafted in the NFL. He signed with the Montreal Alouettes after being released by St. Louis, but abruptly left after playing one game. THE CANADIAN PRESS/Justin Tang
Study finds Canada a ‘laggard’ on homophobia in sports

Among females, 44 per cent of Canadians who’ve come out to teammates reported being victimized

Nurse Kath Olmstead prepares a shot as the world’s biggest study of a possible COVID-19 vaccine, developed by the National Institutes of Health and Moderna Inc., gets underway Monday, July 27, 2020, in Binghamton, N.Y. U.S. biotech firm Moderna says its vaccine is showing signs of producing lasting immunity to COVID-19, and that it will have as many as many as 125 million doses available by the end of March. THE CANADIAN PRESS/AP-Hans Pennink
Canada orders more COVID vaccines, refines advice on first doses as cases reach 400K

Canada recorded its 300,000th case of COVID-19 on Nov. 16

Apartments are seen lit up in downtown Vancouver as people are encouraged to stay home during the global COVID-19 pandemic on Thursday, Dec. 3, 2020. British Columbia’s deputy provincial health officer says provincewide data show the most important area B.C. must tackle in its response to the COVID-19 pandemic is health inequity. THE CANADIAN PRESS/Marissa Tiel
Age, income among top factors affecting well-being during pandemic, B.C. survey shows

Among respondents earning $20,000 a year or less, more than 41 per cent reported concern about food insecurity

Most Read