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

Camp Barnard during the 2019 Pacific Jamboree. (Photo: Camp Barnard)
Camp Barnard near Sooke hopes fundraiser will help it progress on accessibility goals

I Care ‘Bout Camp challenge hopes to raise $100,000 for new lodge, replaced kitchen

The Victoria Fire Department was able to contain a fire to one room after a bed placed directly against a heater ignited. (Black Press Media file photo)
Early morning Victoria balcony fire causes $20,000 in damages

Victoria Fire Department said nobody was injured in the fire on View Street

An Island Health nurse prepares a dose of COVID-19 vaccine. (Photo courtesy Island Health)
Health authority opening 19 clinics to immunize Vancouver Island residents

Health authority anticipates more than 40,000 people will be immunized over the next month

Alphabet Zoo Early Learning Centre wants to relocate from Langford to 3322 Fulton Rd. in Colwood, but has not been approved for a P-6 zoning by Colwood council. Residents who neighbour the property, have expressed concern to the Goldstream Gazette regarding the potential daycare site. Neighbours Ryan Landa and Selene Winchester said the noise of construction has been disruptive to the area, and the property is not suitable for a daycare. (Photo contributed/Ryan Landa)
Proposed West Shore daycare stirs up controversy amongst neighbours

Neighbouring property owners are concerned about traffic, noise that a daycare would bring to the area

West Shore RCMP is asking for the public’s help in locating Mackenzie Courchene, a Langford teenager.
MISSING: Mackenzie Courchene last seen in Langford on March 2

West Shore RCMP is asking for the public’s help in locating the Langford teenager

Const. Nancy Saggar, who has 11 years in policing, offers advice for other women who may pursue both policing and family. (Black Press Media file photo)
Pregnancy prompts sage advice from RCMP officer for women thinking about policing

West Shore constable with 11 years experience heads off on maternity leave

Rising accident rates and payout costs have contributed to billion-dollar deficits at ICBC. (Comox Valley Record)
B.C. appealing decision keeping ICBC injury cases in court

David Eby vows to ‘clip wings’ of personal injury lawyers

Hannah Ankenmann, who works with k’awat’si Economic Development Corporation, winces as she received her first shot of the Pfizer vaccine administered by a Gwa’sala-‘Nakwaxda’xw Family Health nurse. (Zoe Ducklow photo)
Vancouver Island’s small remote towns to get community-wide vaccine clinics

Island Health to take a wholesale approach to immunization, rather than age-based appointments

Anyone with information is asked to call Nanaimo RCMP at 250-754-2345 or contact Crime Stoppers by calling 1-800-222-8477 or submitting a tip online at www.nanaimocrimestoppers.com.
21-year-old motorbike rider dies after crash with ATV on Nanaimo back road

Incident happened Sunday afternoon near Boomerang Lake

(Black Press Media files)
Hosts charged, attendees facing COVID fines after Vancouver police bust party at condo

Police had previously received 10 complains about that condo

Minister of Families, Children and Social Development Ahmed Hussen takes part in an update on the COVID pandemic during a press conference in Ottawa on Tuesday, Oct. 27, 2020. A joint federal and B.C. government housing program announced today aims to help people living in up to 25,000 vulnerable households pay their rent. THE CANADIAN PRESS/Sean Kilpatrick
Federal, B.C. governments announce $517-million rent aid program to help vulnerable

Benefits for those not eligible for B.C.’s Rental Assistance Program or Shelter Aid for Elderly Renters

(BC SPCA)
Is it safe to give your dog some peanut butter? Not always, BC SPCA warns

Some commercial peanut butter ingredients can be harmful to dogs

Cole Moore with one of his sisters, Jasmin Moore. Photo supplied
Vancouver Island man looks to brain surgery for second chance

Fingers crossed that procedure can give Cole Moore a new lease on life after decade of seizures

Health Minister Adrian Dix, front, B.C. Premier John Horgan and provincial health officer Dr. Bonnie Henry arrive for a news conference about the provincial response to the coronavirus, in Vancouver, B.C., Friday, March 6, 2020. Pandemic emergency measures have been in place for almost a year. THE CANADIAN PRESS/Darryl Dyck
B.C. officials plead for patience as 1.7 million COVID-19 calls flood in

Vaccine registration for 90-plus seniors opened Monday

Most Read