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

Robert’s column
Robert Barron Column: Poachers in forest reserve should be treated harshly

‘Poachers need to be rounded up and prosecuted as soon as possible’

Can you dig it? Crofton In Bloom volunteers certainly can. From left: Trayci Lepp, Tony Lamley, Bonnie Lamley, Mary Patient and Jane Grueber. (Photo by Don Bodger)
Community pride grows from volunteer group’s beautification efforts

All ages contribute to Crofton In Bloom’s objectives

An object in motion stays in motion. An object at rest stays at rest. (Sarah Simpson/Citizen)
Sarah Simpson Column: This mother is grinning and bearing it

News broke the other day that, after months in hibernation, Grouse Mountain’s… Continue reading

An online cooking lesson with Ian Blom, the Red Seal Chef from the Ainslie Restaurant, is one of the items on auction in a fundraiser for the Duncan Curling Club and other causes. (Submitted photo)
Online action being held to assist Duncan Curling Club and other causes

Auction, run by the Duncan Rotary Club, closes May 22

Daily confirmed COVID-19 cases reported to B.C. public health, seven-day rolling average in white, to May 12, 2021. (B.C. Centre for Disease Control)
B.C. preparing ‘Restart 2.0’ from COVID-19 as June approaches

Daily infections fall below 500 Friday, down to 387 in hospital

On Friday, May 14 at Meadow Gardens Golf Club in Pitt Meadows, Michael Caan joined a very elite club of golfers who have shot under 60 (Instagram)
Crowds at English Bay were blasted with a large beam of light from an RCMP Air-1 helicopter on Friday, May 14. THE CANADIAN PRESS/Marc Grandmaison
Police enlist RCMP helicopter to disperse thousands crowded on Vancouver beach

On Friday night, police were witness to ‘several thousand people staying well into the evening’

Sinikka Gay Elliott was reported missing on Salt Spring Island on Wednesday, May 12. (Courtesty Salt Spring RCMP)
Body of UBC professor found on Salt Spring Island, no foul play suspected

Sinikka Elliott taught sociology at the university

The first Black judge named to the BC Supreme Court, Selwyn Romilly, was handcuffed at 9:15 a.m. May 14 while walking along the seawall. (YouTube/Screen grab)
Police apologize after wrongly arresting B.C.’s first Black Supreme Court Justice

At 81 years old, the retired judge was handcuffed in public while out for a walk Friday morning

Queen Elizabeth II and Clive Holland, deputy commonwealth president of the Royal Life Saving Society, top left, virtually present Dr. Steve Beerman, top right, with the King Edward VII Cup for his drowning-prevention work. Tanner Gorille and Sarah Downs were honoured with Russell Medals for their life-saving resuscitation. (Buckingham Palace photo)
Queen presents Vancouver Island doctor with award for global drowning prevention

Dr. Steve Beerman receives Royal Life Saving Society’s King Edward VII Cup at virtual ceremony

Former UFV Cascades wrestling coach Arjan Singh Bhullar is now the ONE heavyweight champion after defeating Brandon Vera via TKO in round two on Saturday in Singapore. (ONE Championship)
Former UFV wrestling coach wins MMA championship

Arjan Singh Bhullar captures ONE heavyweight title, first Indian origin fighter to achieve honour

Astra Zeneca vaccine waits for injection in a Feb. 3, 2021 file photo. A Langley man has become the second B.C. resident to suffer a blood clot following an injection. (AP Photo/Frank Augstein)
B.C. man required emergency surgery after AstraZeneca vaccination

Shaun Mulldoon suffered ‘massive blood clot’ after jab

Chilliwack’s Kile Brown, performing as drag queen Hailey Adler, dances and lip syncs in front of hundreds of people during the inaugural Chilliwack Pride Barbecue at the Neighbourhood Learning Centre on Aug. 24, 2019. Monday, May 17 is International Day Against Homophobia, Transphobia and Biphobia. (Jenna Hauck/ Chilliwack Progress file)
Unofficial holidays: Here’s what people are celebrating for the week of May 16 to 22

International Day Against Homophobia, Talk Like Yoda Day, Sea Monkey Day all coming up this week

Most Read