Funds for dementia strategy too little, advocates say

OTTAWA (CCN)—The federal budget’s $50 million over five years toward a national dementia strategy is welcome but not nearly enough, advocates say.

“I think it’s better than nothing, but it really only scratches the surface of the need,” said Lisa Poole, co-chair of Dementia Advocacy Canada.

Canada spends approximately $50 a million a day on dementia-related cases, she said. “Fifty million a year over five years doesn’t really reflect the magnitude of the need.”

Poole pointed out Canada spends only a tenth per capita on dementia as the United States.

Much of that money is being earmarked for reducing the stigma of dementia and public awareness. Poole believes this will help educate the public in the way campaigns to stop smoking have helped.

“We need to get the public more educated, so they can understand how to reduce their own risks of developing dementia,” she said, noting a third, and possibly more, of dementia cases are preventable through lifestyle modification, such as eating a healthy diet, getting enough sleep, and having healthy social relationships.

Poole said money is needed to educate people on what do to if they or someone in their family receives a dementia diagnosis.

“We need more money for physician education,” Poole said. Getting a timely diagnosis is a challenge, and the information you are given is there’s currently no known cure for dementia.”

“Unlike other conditions, there is very little family doctors can offer you and that leads to reluctance to giving a diagnosis,” she said. There’s a need for a tool kit, and for connecting people with the local Alzheimer’s Society in their area, but even these groups do not have enough resources to support people.

“There are a lot of gaps in the system,” Poole said.

More money is needed for workforce education, so health-care providers know how to interact with people and “understand what they are experiencing,” Poole said.

Lack of understanding leads to “miscommunication and unnecessary conflict, and that ends up hurting the person living with dementia,” she said. “They end up medicated, locked away or tied up.”

Nor are there any rehabilitation programs, as the current thinking is ‘not to bother,’ which is “devastating if you are the person who receives a diagnosis,” Poole said.

Public education is also needed for bus drivers, bank tellers, mail carriers, “anyone who might interact” with someone with dementia so they can understand what’s going on.

Care partners also need support. “Informal care givers, family and friends, are providing the lion share of the care – as much as 80 per cent – and those people are not properly supported,” Poole said. “If those people go down, it will decimate our health care system. We need infrastructure for caregiver support that will include education, more day programs, overnight respite, and better home care.”

For Matt Dineen, a Catholic high school teacher in Ottawa, and father of three, it’s good news the long-awaited national dementia strategy is now moving forward. His wife Lisa started to show symptoms of early-onset dementia in 2011 and received the diagnosis in 2013. Her illness has progressed to the point she is largely non-verbal and lives in an extended care facility. The family recently celebrated her 50th birthday.

Dineen worked hard with NDP MP Claude Gravel in getting the first private member’s bill to create a national dementia strategy passed. It lost by one vote. “I am proud that we were able to move the yardsticks on this issue in the country,” Dineen said.

Former Conservative Justice Minister Rob Nicholson resurrected the bill after the last election, and it passed with all party-support.

“I was pleased to see the proposed funding in the budget as it has been asked by the Alzheimer’s Society of Canada for many years now,” Dineen said. “My greatest concern is that funds be disbursed in such a way so it will improve the lives of those living with dementia and the lives of their care partners.”