'Every life should have joy, including lives with dementia'

When Dr. Tia Powell tells people she's the author of a book about the joy of living with dementia, they have a strange reaction.

"They wonder if I've completely lost it," Powell said during a Thursday interview on the Calgary Eyeopener. "One person actually said to me, do you know anything about dementia?"

That's when Powell explains that she's actually a medical school professor, and a psychiatrist — in addition to having both a grandmother and mother who had dementia.

"So I do know what it looks like," she says. "I know what it is."

In Powell's new book, Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End, Powell, who is the director of the Montefiore Einstein Centre for Bioethics, outlines a kind of blueprint for living in dignity with dementia .

"I really think that every life should have joy, including lives with dementia," she says.

"There will certainly be sorrow in those lives [as well]," she added. "It's very hard and I would never try to pretend otherwise. But I think we've actually done a poor job of thinking about what can we do about making lives with dementia better — and more joyful."

Powell spoke to the Calgary Eyeopener ahead of an appearance Saturday afternoon at the Central Memorial Library as part of Wordfest.

Evolving

In her book, Powell explores the history of dementia.

What she discovers is that the public perception of dementia has evolved quite a bit over the past century.

"We didn't used to even really think of dementia as an illness," she said.

Until midway through the 20th century,  older people with dementia were placed in mental hospitals as a way to get them "out of sight," without much regard for the quality of their lives.

"The treatments that were standard for people with mental illness and a lot of people with dementia in the 19th century and through the 20th were fairly cruel," she said.  "I mean, restraints and even chaining people as punishments. It's really kind of gruesome. So I have to say we do better than that now. We have improved."

Powell thinks we haven't come as far as we need to, however — particularly since there's not yet a cure in sight, with a huge wave of aging Baby Boomers being prime candidates for being diagnosed with the illness — including, she added, herself.

"We have millions of people who really need our help and we haven't done as much as we might have," she said.

Preserving dignity

One area of focus, she said, should be on preserving the dignity of people with dementia.

"People sometimes equate dignity or indignity with disability and that I think is an error. There are a lot of people — including people with cognitive disability but people with lots of disabilities — who prove every day that a life of dignity and a full life is really possible. So I think part of it has to do with addressing stigma," she said.

Powell recalled that in earlier times, people with dementia used to be tied down by nurses.

"The nurses probably thought they were keeping them safe, but it was also kind of a nuisance for the staff to keep track of people, so it was just easier to tie them down," she said.

"That's a terrible thing to do. If they want to pace back and forth who does that hurt? And if we're worried they'll get lost, why don't we set up places in our nursing home where there's circular routes?  

"You can pace as much as you want, and you'll still end up right back at your room and nobody's worse for that."

40% chance for older baby boomers

Powell said that the data suggests that if you live to 85, there's a 40 per cent chance you will get dementia — and with the history of it in her family, she's highly likely to be diagnosed with it.

"There's a very decent set of odds that I will end up with dementia."

And so will a large chunk of baby boomers.

If there's no cure, she said, maybe there's a way for society to adjust its perceptions to what having dementia means, for individuals and communities.

"If you want to live a happy older life — and I hope many of us do — we need to get our minds around what a happy older life with dementia would look like. So that is kind of the job I'm working on here."

With files from the Calgary Eyeopener.