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part i

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.

Canada currently has about 280,000 long-term-care beds, meaning about five per cent of seniors live in an institutional setting. The Alzheimer Society estimates that by 2038 there will be 690,000 long-term-care beds, a shortfall of at least 157,000 - unless there is adequate investment to provide care at home. "It doesn't make a lot of sense to have a lot more institutional care," Dr. Reichman says. "Warehousing is not the answer."

Almost two-thirds of patients now end up in institutions, for an average of three years - a span that a dementia strategy should strive to reduce substantially, most experts agree. They say that money spent on institutional care should go toward quality, not quantity.

Families also complain that policies at care facilities can be maddening. For example, they routinely expel patients who are violent or who don't follow a routine, even though both are common traits of people with dementia. These "hard to house" patients often end up occupying costly beds in acute-care hospitals.

Institutional care is also a financial burden for families, with the annual fee for a spartan, four-to-a-room nursing home about $20,000, even when heavily subsidized.

Dr. Reichman says small, home-like facilities offering special care to those in the advanced stages of Alzheimer should be the way of the future. Maison Carpe Diem, an innovative 15-bed home in Trois-Rivières, Que., is often cited as a model.

Solution three: Train specialists to find proper care for each patient

The gradual loss of memory and cognitive skills that characterizes dementia is frightening, for patients and their families alike. As the disease progresses, medical and social needs change regularly and keeping up is a challenge.

"Dementia is so complex that every patient needs a care manager," says David Harvey, government-relations officer with the Alzheimer Society of Canada. "But right now the typical case manager is a 78-year-old woman called 'the spouse' - and she's overwhelmed."

Mr. Harvey says someone diagnosed with dementia should be assigned a care manager, or system navigator, to co-ordinate both medical and social needs.

A personal approach may seem costly, but in cancer care, system navigators have proved cost-effective because they prevent waste and keep patients out of expensive hospital beds. Mr. Harvey stresses that this person wouldn't replace family members but let them provide care more effectively.

Because case managers can't be available around the clock, the Alzheimer Society is also calling for the creation of a dementia hotline. "Crises don't happen on a convenient 9-to-5 schedule," Mr. Harvey explains.

Solution four: Delay the decline with early diagnosis and prompt treatment

Most Canadians still view dementia as a normal part of aging. It is not, but this attitude means that many cases are diagnosed late and caregivers don't seek help until they are in crisis.

Early diagnosis is important because it allows treatment that can slow cognitive decline. While the drugs that currently exist to treat Alzheimer have a limited benefit, treating related conditions such as depression can greatly improve quality of life, and so too can changes in lifestyle (exercise, for example) and joining a support group.

There is no simple, single test for diagnosing Alzheimer's or other forms of dementia. But Sandra Black, research director of the neuroscience program at the Sunnybrook Research Institute in Toronto, says significant progress has been made in the detection of telltale signs of brain damage and loss of cognitive skills. In addition to the classic pen and pencil tests, there is a growing array of tests for biomarkers (such as proteins that point to underlying disease) as well as scans to detect amyloid plaques and tau tangles.

Dr. Black says there are also tests for certain genes, but no one advocates systematic screening because "it can be unethical to search for a disease when there is currently no treatment you can offer to control it."

On the other hand, because almost one-third of those over 65 develop some form of dementia, advocacy groups stress planning for the day that people can no longer express their wishes. A dementia strategy should promote the use of living wills and advanced care directives.

Solution five: Guarantee family caregivers the help they need

"There is this unstated expectation that, when someone develops dementia, the family will pick up the ball," says Joel Sadavoy, a specialist at Toronto's Mount Sinai Hospital. "We don't offer them any education, any training or any support."

As well as learning practical things, such as changing continence pads, he says, people require training in problem-solving and, in many cases, psychological support.

Caregiving puts enormous emotional and financial strain on families. New research shows that nearly 40 per cent of people show signs of distress, ranging from depression to rage. Many are simple overwhelmed.

That stress can be mitigated with good education and access to resources, says Howard Bergman, a professor of geriatric medicine at McGill University who led an expert committee that produced a much-lauded report on dementia care for the Quebec government.

The committee called for opening special support centres to train caregivers and make information and access to services easy to find. This would be costly, but the Alzheimer Society's report says training caregivers - thus delaying admission of patients to nursing homes - would save more than $2-billion a year.

Solution six: Teach Canadians to keep their brains in good health

Delaying the onset of dementia by two years would reduce the number of cases by 36 per cent within a generation; delaying it by 10 years would essentially eradicate the affliction.

Clearly, prevention is the key to stemming the rising tide of dementia. But what works?

Research shows that the classic saying "a sound mind in a sound body" holds true. After genetics, a healthy, active lifestyle is central to preserving the brain and, in particular, to preventing Alzheimer's disease.

"The best bang for your buck to reduce the risk of developing this devastating disorder will be to maintain a regular exercise routine, a healthy diet, and be engaged in socially and mentally stimulating activities, says Mario Masellis, a neurologist at the Sunnybrook Health Sciences Centre in Toronto.

Furthermore, he says, having a healthy cardiovascular system - by, for example, limiting salt intake to control blood pressure, reducing cholesterol, maintaining a healthy weight and not smoking - is the way to prevent vascular dementia.

Solution seven: Increase research investment significantly

Our knowledge of dementia has yawning gaps - the underlying causes of most forms are unknown, along with what triggers the degradation of the brain.

There are few drugs available and their ability to delay or mitigate symptoms is at best moderate. "We still don't know what we don't know," says Howard Bergman, a professor of geriatric medicine at McGill University.

Research is the way to increase knowledge. New drugs are being developed and there are those who believe that a cure is possible. Equally important is determining best practices for care, in a bid to improve the quality of life of sufferers and caregivers.

A new group of independent researchers has asked Ottawa for $50-million in each of the next five years. At present, for every $100 worth of cancer research, just $15 is spent on tackling dementia.

Coming Next in Dementia: Confronting the crisis


Frauds and feuds: Dementia's open invitation to greed.


International Alzheimer's Day

Caregivers' burden: Patients aren't the only victims


Brain games: Why crossword puzzles don't really help

Early diagnosis: Would you want to know?


Signs of hope: The hunt for a cure isn't a complete disaster

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