It’s time to talk about loss of memory

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Thanks to Julianne Moore's Oscar-winning performance as Alice in the movie, Still Alice, the world has become sensitized to the dramatic and tragic impact of dementia. Glen Campbell's shattering song, I'm Not Gonna Miss You, about his own struggle with dementia, brings it up-close and personal.

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Opinion

Hey there, time traveller!
This article was published 03/03/2015 (2833 days ago), so information in it may no longer be current.

Thanks to Julianne Moore’s Oscar-winning performance as Alice in the movie, Still Alice, the world has become sensitized to the dramatic and tragic impact of dementia. Glen Campbell’s shattering song, I’m Not Gonna Miss You, about his own struggle with dementia, brings it up-close and personal.

Although Alice suffers from a rare form of hereditary dementia, her experience reflects the devastating losses that dementia sufferers and their families face. Alice loses her identity, plus her ability to reason, remember and speak. Her husband cannot bear to watch, and accepts a job in another city. Their daughter ends her career and moves back home to become her mother’s caregiver.

This powerful story touches our deepest fears and vulnerabilities. So let’s step beyond it for a moment, and clarify a few things. Increasingly, the international medical community is shifting to the term dementia and viewing Alzheimer’s as a form of brain aging. It is moving away from simplistic ideas of a cure and toward prevention and community care. Even Alzheimer’s organizations are following suit.

Why this shift? According to American neurologist and Alzheimer’s expert, Dr. Peter Whitehouse, author of The Myth of Alzheimer’s, published in 2008, “after 30 years of research and tens of billions of dollars spent, we’re not even close.”

Science author Jay Ingram, who recently published The End of Memory, A Natural History of Aging and Alzheimer’s, suggests that given our lack of progress, it’s time for a rethink.

We don’t have much time. It is estimated that in the next two decades, the number of Canadians with dementia will almost double to 1.4 million. More Canadians with dementia will remain living at home, putting great stress on their family members. And the number who need long-term care will rise dramatically. To put this in perspective, in 2011 there were 200,000 residents in long-term care facilities. By 2038, the number of people in long-term care is expected to jump to 690,000. If trends continue, at least 80 per cent will have dementia. We are ill equipped to respond to this challenge — as individuals, families, communities, and as a society.

We are learning warehousing and drugs are not the answer. The unnatural environments of traditional, institutional nursing homes only exacerbate problems. Residents with dementia become confused and frightened, even aggressive and violent. Expensive suppressants turn them into zombies.

There are better, less costly ways.

Take the Green House Project. People with dementia are cared for in small, self-contained homes or households with seven to 10 residents in each. Care providers are cross-trained. They work in teams to provide personal care, plan and prepare meals, do laundry and light housekeeping, and nurture the capacities of the residents. There are more than 260 Green House homes in the U.S. Evaluations show significant improvement in the quality of life for residents and higher levels of satisfaction among families and staff.

Even better, take De Hogeweyk, recently documented by CNN. Located near Amsterdam, it serves people with severe and extreme dementia. Because familiarity is crucial to people with dementia, De Hogewyk maximizes it. Each of the 23 households has only six to eight residents who are grouped according to similar social backgrounds. Residents are surrounded by things they recognize. They engage in tasks and activities they once enjoyed. De Hogewyk is designed like a small, Dutch town with all the amenities. Residents are free to go where they please. Rather than focusing on what people with severe dementia have lost, De Hogewyk focuses on what they can still do. The results are astonishing.

Closer to home, this overdue conversation has just begun.

We need to talk about it in our families and communities. We need a broad, national discourse. We need to learn from progressive examples around the world. We need to focus on prevention and care.

A recent national initiative for dementia research valued at $55.5 million has set the wheels in motion, but it seems to be missing the mark. A recent editorial in the Globe and Mail states, “Instead of spending billions on makeshift solutions and bad outcomes, Canada’s health-care stakeholders should be spending that money on new, properly staffed long-term facilities.”

Bottom line: we need to get ready for the silver tsunami and its rising tide of people with dementia. We need a national policy that provides them — and potentially us — access to familiar, nurturing, home-like environments.


Rudy Friesen, partner emeritus at ft3, was the architect for the first Chez Nous personal care home. At 72, he wants to change long-term care before he gets there himself.

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