Campaign addresses fear of dementia

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This article was published 05/01/2016 (3590 days ago), so information in it may no longer be current.

FOR Canada’s aging population, one of the most frightening diagnoses is the D-word — dementia.

A new Nanos survey found 47 per cent of Canadians believe it is not possible to live well with Alzheimer’s disease or another form of dementia, the Manitoba Alzheimer Society says.

A Winnipeg man who has the disease is challenging that notion by proving a diagnosis of dementia doesn’t spell doom.

“Life’s pretty good,” said 75-year-old Don de Vlaming, who was diagnosed with Alzheimer’s two years ago. He and his wife, Sylvia, are part of the Manitoba Alzheimer Society’s #StillHere campaign launched today. A video and profiles online share the stories of people who have the disease and are living life to the fullest.

De Vlaming said most people don’t know he has Alzheimer’s.

“They just carry on as they normally would,” said the retired church minister with two grown sons. “For the most part, I can navigate conversationally. I may have to stop and rethink things or ask Sylvia or one of the boys,” he said.

“It really isn’t terribly different for me now than it was five years ago.”

He and Sylvia will be sharing their story at an Alzheimer Society of Manitoba public education event called Dementia… Are You Worried? at 7 p.m. Jan. 28 at the Samuel N. Cohen Auditorium in the St. Boniface Hospital Albrechtsen Research Centre.

“I’ll support him in any way that I can,” said Sylvia, a college instructor.

Don said he wanted to go public to let others know the diagnosis of dementia doesn’t mean a person stops being themselves or stops living.

“I can sit here and think about ‘Poor Don and how badly the world has treated him’ and blah blah blah, or I could say ‘To hell with it — I’m going to give back something if I can contribute and make life a little better or clarify things for others having difficulty grasping how they can still have a fruitful life.”

‘People with this disease continue to inspire family and friends while enjoying life’s opportunities long after a diagnosis has been determined’

— psychiatrist Barry Campbell

He meets regularly with others with Alzheimer’s and no one in the group is a “prophet of doom,” he said. “It’s really an optimistic group,” he said.

They know they all have a disease for which there’s no cure and are trying to live their best lives.

“We have an appreciation that we’re not alone in this world, and it’s compassionate,” said Don. “It makes me proud to be in a membership with them. Everybody’s doing so well. Everybody is really good at encouraging each other and strengthening the other person.”

When Don was first diagnosed two years ago, he told the Free Press he didn’t want people to forget about him, and he didn’t want to be cut off from society. None of that has happened.

“We haven’t changed much in the way we live life,” Sylvia said. “We do things together as we always did.”

Some people with Alzheimer’s see their circle of friends shrink after their diagnosis, Sylvia said. Theirs has grown.

She and a group of caregivers get together informally while Don’s group meets. She values their friendship as she experiences new challenges in life.

“If people, for whatever reason, don’t want to be friends because of Don’s illness, it’s their loss, not ours.”

‘It really isn’t terribly different for me now than it was five years ago’

— Alzheimer’s patient Don de Vlaming

The Alzheimer Society of Manitoba is launching a campaign today “to create awareness about this disease and encourage all of us to see the person beyond the condition,” chief executive officer Wendy Schettler said in a news release.

“Dementia does not define someone,” Barry Campbell, a psychiatrist at St. Boniface Hospital said in the release. “People with this disease continue to inspire family and friends while enjoying life’s opportunities long after a diagnosis has been determined.”

For more information, go to www.alzheimer.mb.ca/stillhere.

carol.sanders@freepress.mb.ca