The Catholic high school teacher, father of three and husband to a wife with the disease that cripples a person’s mental abilities, has been working on a national dementia strategy for more than five years.
“I am proud that we were able to move the yardsticks on this issue in the country,” Dineen said after the announcement in the federal budget of $50 million over five years towards the national strategy.
Dineen’s 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. She recently celebrated her 50th birthday.
Dineen worked hard with NDP MP Claude Gravel in creating the first private member’s bill to create a national dementia strategy. It lost by one vote in 2015, but former Conservative Justice Minister Rob Nicholson resurrected the bill after the last election and it passed in 2017.
“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.”
Other advocates said the money is welcome, but not nearly enough.
“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 one-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 one-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 need to educate people on what to do 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.”
Care partners also need support, she said. “Informal caregivers, family and friends are providing the lion’s 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.
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