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.

Just Posted

Surrey Fire Service battled a dock fire along the Fraser River late Friday night (June 18). It was on Musqueam Drive, near Industrial Road, around 10:45 p.m. (Photo: Shane MacKichan)
Fire engulfs dock on Surrey side of the Fraser River

Dock has reportedly been unused for a long time

A mixed-use development with 69 market rental units and 10 commercial units is proposed for the 2300-block of King George Boulevard. (Thinkspace rendering)
Pair of South Surrey apartment proposals move forward

Council gives third reading to rezoning applications for market-rental and residential projects

Launched in January, Uplift Canada was founded by Tsawwassen resident Maggie Larocque. (submitted photo)
Surrey shelters get clothing collected June 26 by Uplift Canada

Book a pickup on website of the new non-profit, founded by Delta resident

A small pod of Pacific white-sided dolphins pass by close to shore in Campbell River June 16, 2021. Still capture from video courtesy of Kimberly Hart
VIDEO: Dolphin sunset captured from Vancouver Island shore

Spectacular setting for view of travelling pod of Pacific white-sided dolphins

Police are asking for public assistance in locating Anthony Graham who has been charged with the murders of Kamloops brothers Carlo and Erick Fryer. (RCMP photo)
2 charged, suspect at large in killings of B.C. brothers linked to gang activity: RCMP

Kamloops brothers Erick and Carlo Fryer were found deceased in May on a remote Okanagan road

Albert Health Minister Tyler Shandro and Alberta Premier Jason Kenney unveil an opening sign after speaking about the Open for Summer Plan and next steps in the COVID-19 vaccine rollout, in Edmonton, Friday, June 18, 2021. THE CANADIAN PRESS/Jason Franson
Alberta 1st province in Canada to lift all COVID-19 public health restrictions

70.2% of eligible citizens 12 and older in the province have received a dose of the vaccine

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
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

Fraser Health registered nurse Ramn Manan draws a dose of the Pfizer COVID-19 vaccine into a syringe at a walk-up vaccination clinic at Bear Creek Park, in Surrey, B.C., on Monday, May 17, 2021. THE CANADIAN PRESS/Darryl Dyck
‘Honour our fathers’ with COVID-19 vaccine protection, B.C. urges

109 new cases Friday, 75 per cent of 12 and up immunized

(Paul Henderson/ Chilliwack Progress)
Trutch Avenue in Chilliwack to be renamed to remove racist taint

New name to have Indigenous significance as Chilliwack takes new step toward reconciliation

Canadian Prime Minister Justin Trudeau is seen during a joint news conference following the EU-Canada Summit, in Brussels, Belgium, Tuesday June 15, 2021. Trudeau says Canada is on track now to have 68 million doses delivered by the end of July, which is more than enough to fully vaccinate all 33.2 million Canadians over the age of 12. THE CANADIAN PRESS/Adrian Wyld
Vaccine deliveries enough to fully vaccinate all eligible Canadians by end of July

Three in four eligible Canadians now have their first dose, nearly one in five fully vaccinated.

A search is underway for a 75-year-old fisherman who went missing near Port Angeles Thursday evening. (Courtesy of U.S. Coast Guard)
Search continues for angler missing between Port Angeles and Victoria

Canadian, U.S. Coast Guard searching for 75-year-old man reported missing Thursday evening

Most Read