A tidal wave of dementia is about to engulf Canada’s aging population.
Today, 747,000 Canadians are living with dementia, including Alzheimer’s disease. This number is expected to increase to 1.4 million by end of 2031, according to Alzheimer Society of Canada (ASC).
Annual costs of dementia will increase from $33 billion today to $293 billion by 2040 says ASC, posing an overwhelming threat to the country’s health-care system and economy.
Mimi Lowi-Young, the CEO of ASC, is pushing for a national dementia strategy that will prevent persons living with dementia and their caregivers from being pulled into the undertow of this wave.
She calls dementia a “non-partisan issue and health priority” and has asked the main political parties to include a national dementia strategy in their platforms leading up to the Oct. 19 federal election. ASC also just launched its ‘Raise your Voice’ civic engagement campaign to encourage those affected by dementia to speak to candidates about why a national strategy is so critical.
With just under a month to go until voting day, the NDP have pledged to invest $40 million over four years in a Canada-wide strategy, focusing on screening, diagnosis, support and research. The Green Party, through its National Seniors Strategy, has also committed to a national plan for dementia - though no funding details have been announced.
Currently, Canada is the only G7 country without a national plan in place. Earlier this year, a single vote could have changed that.
On May 6, Nickel Belt MP Claude Gravelle tabled private member’s Bill C-356 Respecting a National Strategy for Dementia. The bill was defeated in a vote of 140 to 139 in the House of Commons after Liberal MP Yvonne Jones failed to stand up and register her vote.
“It was heartbreaking to see we lost this very important strategy because one Liberal MP was not paying attention,” Gravelle said.
The deciding vote could have also come from Conservative MP Joe Preston who initially voted in favour, but then changed his vote to a nay.
Gravelle was inspired to champion a strategy after watching his mother battle Alzheimer’s disease until her death in 2003.
“When my mom had dementia, we didn’t know enough,” he said. “We didn’t understand it and at the time we thought it was just age. But it’s not age, it’s a disease.”
Though she voted against Gravelle’s bill in October 2014, Health Minister Rona Ambrose announced $31.5 million in funding for Alzheimer’s research and committed to working toward a national strategy to fight the “impending loom” of dementia.
“They’ve already put the stake in the ground to say, ‘Yes we support this and we need to move ahead,’” Lowi-Young said.
The 2015 federal budget includes a commitment to continue supporting innovation in health care and dementia research. The government proposes to provide up to $42 million over five years to Toronto’s Baycrest Health Sciences to support the establishment of the Canadian Centre for Aging and Brain Health Innovation.
Since 2006, the government has invested more than $860 million in support of neuroscience research, allotting $182 million for the prevention, diagnosis and care of dementia.
However, Lowi-Young said more needs to be done.
A national strategy would ensure someone living in northern Ontario would receive the same kind of service as someone in Vancouver, B.C.
She said objectives of the national strategy should include more investment and focus in research, better integration, co-ordination and accessibility of primary, community and home-care across the country, improved training of health-care workers and better supports for family caregivers.
The ASC has requested a total of $150 million over five years to create and fund the Canadian Alzheimer’s Disease and Dementia Partnership, which would bring together researchers, Alzheimer societies and federal and provincial governments to develop and implement a Canada-wide plan.
“We need to take these objectives and make them real,” Lowi-Young said. “We need to prepare now. We can’t wait for the future.”
Ontario is a large piece of this national puzzle. In five years, Ontario expects to see a 22.5 per cent jump in dementia cases, bringing the total number of provincial cases to 255,000, according to the Alzheimer Society of Ontario.
Efforts are underway that may help diffuse the province’s dementia time bomb.
In November 2014, Premier Kathleen Wynne and Health Minister Eric Hoskins mandated Indira Naidoo-Harris, the Halton MPP and parliamentary assistant to the Minister of Health and Long Term Care, to develop a comprehensive Ontario dementia strategy.
“It’s critical we start planning for our future today. It’s going to involve research, supports for caregivers and care partners, but it’s also going to involve educating people,” Naidoo-Harris said in an interview.
Naidoo-Harris’ mandate includes championing more research and innovation to better understand the disease, supporting the implementation of 25 new memory clinics across Ontario (designed for early dementia detection and prevention) and working across levels of government and agencies to identify ways to expand supports to family caregivers.
“These are the people who invested their lives and their work in all of us, bringing us up and creating a future so that we would live well,” she said. “I see this as full circle. It’s now time to start preparing to give back.”
The politician watched her father-in-law battle Alzheimer’s and calls it an “extremely painful and emotionally draining” experience.
“It was very hard for our family to sit by and watch one of the smartest men that we knew slowly lose the ability to speak and express himself,” she said. “All of us know someone either directly or indirectly affected by dementia: a father, a mother, a neighbour, a friend.”
An advisory board of more than 30 experts has been formed to bring together key stakeholders from Alzheimer societies, the Ontario Long Term Care Association, the Centre for Addiction and Mental Health and community care access centres, among others.
David Harvey, chief of public policy and programs initiative for the Alzheimer Society of Ontario, is part of that board and said it is critical to have people at the table who are experiencing dementia first-hand.
“Our focus has been developing a strategy that enables persons living with dementia to have a voice in articulating what their needs are and what the solutions might be moving forward,” he said.
The Ontario Dementia Advisory Group (ODAG) consists of people living with dementia whose motto is “nothing about us without us.”
They have been working with Naidoo-Harris on the Ontario strategy and will help government create policies and procedures through first-hand perspectives.
ODAG member Bea Kraayenhof is a retired nurse who has been living with Alzheimer’s disease for 15 years.
“Usually we’re told what’s going to happen, whether we like it or not,” she said. “This time we’ll be sitting at the table while decisions are being made.”
She said dementia should not be politicized and that Ontario needs to prepare for the “tsunami” by implementing a set of rules for long-term care homes and health-care agencies to follow.
“The people in government now making the policies will be the ones living those policies,” she said. “If they’re lucky enough to live long, it’s probably going to happen to them.”
An initial meeting was held in July to collect opinions and jumping off points on how to best go about building a person-centered model of care.
Naidoo-Harris said she plans to complete a draft of the Ontario dementia strategy by late winter. She anticipates portions of the strategy will be moving forward before the next provincial election in 2018.
“The plan has to raise awareness. For the longest time people didn’t talk about cancer or mental illness,” Naidoo-Harris said. “The times have changed. This is now public discourse and this is what needs to happen.”