Senator Sharon Carstairs has had it. Over the past 16 years, there has been no fiercer a Canadian advocate of better care for the elderly. She has spearheaded two ground-breaking Senate reports on aging, and remains in demand as a speaker, preaching the need for action.
Yet even now, with the first baby boomers turning 65 this year, almost nothing is being done to prepare for the demographic bulge of seniors. There is no comprehensive plan, no national program, not even a firm commitment to deal with frail elders already trapped in the system, many of whom are doomed to spend their final days in misery.
With a sigh and trace of despair in her voice, Senator Carstairs says she is giving up. This fall, she will retire.
"The passion is still with me, but I'm tired," says the former leader of the Manitoba Liberal Party. "You can only do this so long. I give speeches, speeches, speeches … and we continue to do badly. I will be 69 in April. I'm burnt out."
As a last political gasp, the veteran campaigner is looking to the looming federal election as a way to finally thrust elder care into the national spotlight.
"I would like to see seniors right across the country go to every single meeting and put these questions to all the candidates," Senator Carstairs says from Brussels, where she is the keynote speaker at a conference on aging. "What are you doing about home care? What are you doing about caregivers? What are you doing about an integrated health-care system? Are you going to sit on your hands or are you going to step up and be counted?"
She and other advocates welcomed modest measures in this week's federal budget to aid seniors, including the $2,000 Family Caregiver Tax Credit and $100-million for research on degenerative brain conditions such as dementia, which afflicts an estimated half-million Canadians, most of them over 65.
But the proposed tax break amounts to just over $5 a day, says Rosanne Meandro of the Alzheimer Society of Canada, and applies only if caregivers have a taxable income.
The grim situation and demands for governments to do more are expected to dominate the agenda of Alzheimer's Disease International's annual convention. Researchers, officials and activists from 73 countries will be in Toronto until Tuesday discussing the latest science on, and ways to combat, a disease predicted to double its toll among Canadians within about 25 years.
As well, the call for a national dialogue on how Canadians will live out their final years has been echoed at Boomerangst, an influential convention held in Vancouver last month, and at a packed town-hall meeting in Toronto this month. What does the public expect and how much are people prepared to pay? No one knows, although the issue touches almost every family in the country.
"We have not been able to mobilize the public," admits Carole Estabrooks, a prominent researcher and board member of the federal Institute of Aging. "We need a champion, someone who gets the bit in their teeth and won't let go," she told the audience at Boomerangst, organized by researchers at the University of British Columbia.
The statistics are depressingly familiar:
- 65 and over is Canada's fastest-growing age group, expected to hit 23 per cent of the population by 2031.
- The number of people in their eighties is increasing even faster, with each costing the system an average of $18,000 a year.
- Among its 68,000 doctors, Canada has fewer than 300 who specialize in geriatrics.
But a solution is not even on the drawing board, while existing programs barely keep pace.
Long-term care depends on relatively low-paid, minimally trained staff looking after difficult patients, 75 per cent of whom suffer from dementia and will die within a year. Simple issues such as patient mobility often fall by the wayside, as staffers struggle to keep up.
Lower Mainland resident Rebecca Maurer saw the problem first hand when she and her sister sought comprehensive care for their mother, incapacitated by a degenerative neurological disorder. "The experience was dreadful," she says.
An initial attempt at home care foundered over inadequate assistance. "The bureaucratic runaround we got was ridiculous."
A six-month stay in a residence was equally disastrous, according to Ms. Maurer. "There were so many difficulties, and the revolving door of staff made it seem like Groundhog Day, the way we had to keep explaining Mom's condition."
Desperate, she and her sister eventually opted for private care, which was better, but not by much, given the cost. "We still discovered medication errors, and we had to be totally involved in seeing that our mother's needs were met, even for $7,000 a month."
With 15 years' experience in and around the health-care system, Ms. Maurer's experience has left her shaken. "If we had trouble, I can't imagine how an average person might navigate the system."
To keep seniors out of hospitals and long-term care, Canada relies on an estimated $25-billion a year of unpaid care by family members. But at some point, loved ones will no longer be able to meet the need - something Senator Carstairs pinpoints as her number one concern.
"Yes, we need to build more long-term-care beds, but more importantly, we have to develop a home-care system that works in an integrated way with the family caregiver. What we have now is woefully inadequate."
Despite study after study showing that home support is extremely cost-effective, government spending on it comprises less than 4 per cent of total health budgets.
That shortcoming is what brought Senator Carstairs to the fray in the first place. Her mother died at 73, worn out after 10 years of looking after her ailing husband. "It was only six months after my father died. She gave up her life for him."
Palliative-care facilities also fall far short. Although the situation has improved in recent years, only about 30 per cent of those who would like the option get it. And the number of annual deaths is projected to increase from about 250,000 to 430,000 by 2031. "If we can't care for our dying," Senator Carstairs asks, "what kind of a society are we?"