National Post (National Edition)
Joining forces to tackle dementia
Grey tsunami will soon challenge system
Kathleen Jamieson said she had no nursing or medical experience, but when her husband was diagnosed with dementia, she thought she could cope.
“I thought I could physically and emotionally care for this person I loved,” the chairwoman of British Columbia’s Council of Senior Citizens told the House of Commons health committee as it examined legislation that, if passed, will establish an action plan for dealing with the grey tsunami of mental health conditions like Alzheimer’s disease that threatens to engulf many developed countries.
However, Jamieson discovered she didn’t get the home-care help she needed and nearly buckled under what has become known as “caregiver burnout.”
Her husband died after a fall. The experience of trying to access publicly funded home care from a system she called “callous and cruel” left her feeling like she had post traumatic stress disorder.
It was a story the committee heard repeatedly — and it reinforces a report on dementia released by the Senate committee on social affairs this week.
The numbers are dramatic. Canada has 750,000 people suffering from dementia, but the number is forecast to double to 1.4 million by 2031.
The direct medical cost in 2011 was $8.3 billion but that is also projected to double over the next 25 years, by which time one in four of the population will be over 65.
There’s no cure and no effective drugs to slow dementia’s onset. Two-thirds of sufferers are women, as are 70 per cent of caregivers.
Both the health committee testimony and the Senate report suggest that Canada does not have a comprehensive plan in place to deal with this explosion of people who are not able to live and function independently.
Former Conservative minister Rob Nicholson has sponsored a private member’s bill to establish a national strategy and action plan for dealing with the problem — remarkable in that it comes from a party that balked at national strategies for 10 years; astonishing, because it has the support of the Liberal government and the New Democratic Party.
The legislation would not require the government to commit large amounts of money — it merely “encourages” greater investment in all areas of research and develops national objectives to improve the situation of people caught in the misery of dementia.
But it would build momentum toward the course of action suggested in the Senate report, which does call for the government to put down $30 million to set up a new national organization; roll out a public awareness campaign; expand employment insurance and compassionate care benefits to dementia sufferers; and double dementia research funding.
Jane Philpott, the health minister, revealed this week her father has dementia.
“He’s not the same person he used to be,” she said. “It affects my amazing mother, who lives with him and takes care of him, so I get how much it changes families, how much it affects peoples’ lives and how much we don’t really have great systems in place.”
The Liberals have promised $3 billion in new health-care spending for the provinces, but want the money to flow into home care, which, if the provinces sign on, should improve the lives of dementia caregivers, who provide about 8.2 hours of support a day.
Any assistance would be welcomed by Tanya Levesque, a 41-year-old who has been looking after her mother since she was diagnosed three years ago.
She told the committee she had taken a leave of absence to provide home care, with the subsequent hit to family income, but had been forced to move her mother into long-term care when she herself was hospitalized last year.
Her mother has since been moved seven times because of behavioural issues that Levesque believes were made worse by constant upheaval. “I think that Canada is far behind other countries when it comes to research and care,” she said.
Federal politicians are alive to that fact and action appears to be pending. All parties seem to be in agreement with Margaret Chan, director general of the World Health Organization, who said recently she could think of no disease so “deeply dreaded by anyone who wants to age gracefully and with dignity; no disease that places such a heavy burden on families, communities and societies; and, no disease where innovation to develop a cure is so badly needed.”