Canada's dementia dilemma: Care without a strategy

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Some 1,500 delegates from around the world - including researchers, health professionals, family caregivers and people with dementia - are expected in Toronto this weekend for the annual conference of Alzheimer's Disease International.

Marc Wortmann, executive director of ADI, a federation of 70 Alzheimer groups, spoke to Globe and Mail public health reporter André Picard about the big issues in dementia care.

People tend to deal with dementia on a personal level, as individual patients or caregivers. Give us a sense of the global impact.

About 36 million people worldwide are living with dementia. That's more than are living with HIV-AIDS. It's more than the population of Canada. And the bad news is that the number is going up quickly. The population is aging in the West and in developing countries - particularly Asia and Latin America - life expectancy is increasing, so dementia is also.

Can we cope with those rising numbers?

It's a challenge but I think we can. We don't have a cure. But we have some medication and a lot of treatments in the pipeline. Aside from that, we can give people a good quality of life if we invest in a good system of care and support caregivers.

What countries have responded best to the rising tide of dementia?

I can't single out one country but there are many examples of good-care practices in Canada and northern Europe. France has a very good national plan, and Japan (which has the oldest population in the world) has been a leader in providing services. They care for people in the home and in smaller facilities, not in large institutions.

Countries like France have dementia strategies. Canada does not. Would a strategy help?

A good strategy provides a blueprint, it allows you to focus on what needs to be done. These plans have several important elements: Public education, investment in research, the need for early diagnosis, support for caregivers, and providing appropriate care in the late stages of the disease. When you have a plan you are more likely to act.

Does appropriate care mean building large facilities like nursing homes as we tend to do in Canada, small-scale facilities like they do in Japan, or does it mean homecare?

I think everyone wants to stay at home as long as possible - and that's probably the best option. But, at some point, many caregivers have to consider residential care for their loved ones. A health system probably needs a little bit of everything, some nursing homes (preferably small-scale), some respite care, and good home care.

How does Canada compare to other countries on dementia care?

I think Canada has a lot of good services, but I'm not sure if the services are available to everyone who needs them. In countries with advanced systems of care, like Canada, too many people still struggle: They don't get early diagnosis, caregivers are isolated and alone and they don't know how to get residential care when it's needed. It's not enough to have services, you have to match people with the right services. In Canada, there is good care, but not enough of it, and there is no strategy.

Your conference theme is "The Changing Face of Dementia." How is that face changing?

More and more it's being recognized that people with dementia are like everyone else: They want a life, they want to be part of the community, even if there are some practical restrictions because of their illness. People with Alzheimer, with dementia, don't want to be treated like they are almost dead, or hopeless. They don't want to be hidden away.

In fact, you have people with dementia speaking at the conference. Not long ago, that was unthinkable.

We have a pre-conference forum called A Changing Melody that's organized and presented by people living with dementia and their caregivers. This is a unique Canadian initiative and it's very exciting. That's how the face of dementia is really changing, it's becoming inclusive. There's less shame and fear.

But people do fear dementia. We've all heard our parents or grandparents say: "I would rather die than live with dementia."

We're very focused on ensuring that people with dementia have good care, a good quality of life. If you ask people with the disease themselves, they will tell you a good quality of life is possible. We need to change perceptions about dementia. It's not a hopeless situation.

This interview has been edited and condensed.