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Part I

Why Canada needs a national strategy on dementia Add to ...

Mario is 63 and lives alone. His once-tidy Burnaby bungalow is now covered in neglected clothes and mouldy plates. He has taped up a note reminding him not to go out because he may forget to come home. And he knows his condition will only get worse.

Bigger than cancer, bigger than heart disease or lung disease - for seniors, dementia is the single greatest cause of disability and debilitation. Its cruel course robs people of what they treasure most: memories, skills, relationships, independence. And then the body starts to wither and waste.

Those who care for suffering spouses or parents are all too familiar with the ordeal, and their numbers grow as lifespans do in Canada's rapidly aging population: Dementia affects 20 per cent of seniors by the age of 80, and well over 40 per cent by 90. Already, that's 500,000 Canadians, and one new person joins them every five minutes. In a generation, the total will be 1.1 million.

The costs already top $15-billion a year, including caregivers' unpaid labour. The Alzheimer Society of Canada recently estimated that in three decades the figure will be 10 times that.

Canada's health and welfare systems are woefully unprepared for a coming crisis. The Alzheimer Society is pleading for a national action plan, as it has repeatedly in its 32 years of existence. Yet the federal government refuses to invest in a strategy for dementia to match those already in place for cancer, heart disease and mental health. The Health Minister is refusing even to meet a new independent group of leading researchers in the field.

So, today and next week, The Globe and Mail's journalists do what the government would not: They consult experts, from renowned scientists to the members of dementia victims' families, gathering facts and recording personal experiences with the devastating disease. They also present a seven-point plan to grapple with the coming crisis. It is only a starting point, but if we don't begin the quest for desperately needed solutions, more and more of us will slip away.

Solution one: Keep people at home as long as possible

"Nobody wants their grandma in a nursing home," says Neena Chappell, the Canada Research Chair in Social Gerontology and a professor in the Centre on Aging at the University of Victoria.

Like most experts, she believes that having people stay in familiar surroundings is humane and cost-effective - and should be a foundation of a national dementia strategy.

However, she also stresses that, while public investment is a must, providing medical, nursing and support services in the home should complement, not replace, care from family members. Contrary to popular belief, most families are willing to help, but they need help themselves, especially as the disease progresses and new challenges arise.

Technology can play an important role. Just as homes with toddlers are child-proofed, dementia requires elder-proofing, and devices that raise the alarm when someone falls, remind people to eat or take their medicine, or prevent wandering (door alarms, bracelets, GPS trackers) make life easier.

The greatest frustration for families is lack of consistency. There is far too much turnover among personal support workers, and the amount of care provided by the public health system varies markedly between jurisdictions, and rarely exceeds 60 hours a month, about two hours a day.

Few families can afford more professional care and find that being on call almost 24 hours a day overwhelming, so those with dementia land in institutions earlier than they should.

Solution two: Make sure institutional care is available and appropriate

There comes a point when many families can no longer provide care at home, even with support, because their loved ones wander too much or become violent.

The key is to make sure that only those who absolutely need to be in nursing homes and hospitals end up there, says Dr. William Reichman, chief executive officer of Baycrest, a Toronto research and care facility for the elderly.

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