Canadians with dementia can and want to live independently, without assistance, as long as they can. But too many of them feel compelled to “withdraw and hide” when they’re first diagnosed, says Bill Heibein, a retired accountant from Kakabeka Falls in northern Ontario, who is living with dementia.
“The more we can be seen, the more people who have just been diagnosed and start to pay attention to what’s happening, hopefully they’re going to get their self-confidence back to be able to go out and participate,” he told the Senate Committee on Social Affairs, Science and Technology in May 2016.
Helping Canadians with dementia live independently and participate in society is the goal of the Senate committee’s report, Dementia in Canada: A National Strategy for Dementia-Friendly Communities. The committee released the report, Tuesday, November 15 at a press conference in Ottawa. Committee chair Senator Kelvin Kenneth Ogilvie and deputy chair Senator Art Eggleton were joined by Debbie Benczkowski, COO and acting CEO, Alzheimer Society of Canada to share the report’s findings and discuss its recommendations.
The committee prepared the report after the Senate authorized it in February to study the issue of dementia in Canadian society, to review the services available to patients, to review dementia strategies implemented in other countries and to consider what the federal government’s role should be in helping Canadians with dementia.
“It is tragic that the stigma associated with a dementia diagnosis causes so many dementia patients to withdraw from society – they deserve much better,” said Senator Ogilvie.
“By helping Canadian communities become more dementia-friendly and enhancing access to home health care, federal and provincial governments can make a major social advance permitting patients a higher quality of life and extending the time they have in their own homes and community before requiring assisted living.”
Dementia will become a bigger health and financial challenge over the next 15 years as the number of people with the disease doubles. By 2031, there will be 1.4 million Canadians living with dementia, up from the 750,000 in 2011, the report says.
As Canadians live longer and the baby boom generation moves into its 70s, the number of people at risk of developing dementia — a progressive condition that impairs memory and other cognitive functions — is growing.
“The writing is on the wall. Dementia is going to become a major public health issue and a serious financial issue to governments as Canada’s aging population grows,” said Senator Eggleton. “We need to start putting measures in place now before before the problem escalates further.”
The committee made 29 recommendations including the creation of a National Dementia Strategy to ensure adequate care is provided to people with dementia that housing options are available for patients and that funding for research is in place.
A new organization, the Canadian Partnership to Address Dementia, should be created to implement the National Dementia Strategy. To carry out its work, it should receive $30 million a year in funding, the committee said.
The report’s recommendations build on the grassroots work already being done to create dementia-friendly communities across the country. For example, the Alzheimer Society New Brunswick launched eight Memory Cafés that provide dementia patients with safe, friendly places in which to meet regularly and share their experiences about living with the disorder. It’s also an opportunity to socialize.
The committee’s recommendations focus on initiatives the federal government should take. In addition to setting the stage for a National Dementia Strategy, the government can arrange funding for programs that will help dementia patients live independently, including $3 billion over four years to provide homecare services, expanding Employment Insurance’s compassionate leave benefits for people who take time off work to care for a family member with dementia, and a tax credit for low-income Canadians when they are thrust into caregiving roles.
Dementia patients are among those with major health issues that would benefit dramatically from enhanced home care services and long-term care beds. Canada should join the G-8 countries allocating 1% of the cost of care in this area to research funding which, according to one witness, could well lead to effective disease modifying treatment by 2025.