Edmonton Journal by Joanne Cave 22 September 2014

Whether it’s John Mann’s diagnosis of early-onset Alzheimer’s or Gillian Bennett’s touching suicide letter on deadatnoon.com, this horrific disease is finally a topic of national conversation.

Health Minister Rona Ambrose’s recent announcements — a $31.5-million funding commitment to the newly launched Canadian Consortium on Neurodegeneration in Aging and an adaptation of the U.K.’s “Dementia Friends” program — are a step in the right direction, but they’re not enough. Media conferences, public awareness campaigns and events like “dementia hack-a-thons” are important, but robust social policy for families facing a dementia diagnosis never seems to follow suit.

September marks World Alzheimer’s Month, and it’s time to ask the most critical question: Why is Stephen Harper’s government failing us on dementia?

This disease is something my family understands far too intimately, as we recently (and with much reluctance) placed my 64-year-old mother with early-onset Alzheimer’s in a long-term care facility in the Edmonton area. In three years, I’ve watched my mother transition from full-time work to institutionalization due to the aggressive disease, which wasted no time diminishing her independence and cognitive abilities. Helping to care for my mother, while physically, emotionally and financially demanding, is a privilege that makes me more compassionate every day.

The “indignity of dementia” that Mann and Bennett describe is often apparent in my mother’s life in the smallest of ways: gentle encouragement toward early retirement from her employer, returning home in the back of a police squad car after a disorienting walk to the grocery store or a solo jaunt across our local golf course (thinking it was a “park”) and more recently wearing three decidedly mismatched blouses in an attempt to prevent the long-term care nurses from bathing her.

It is estimated that nearly 750,000 Canadians have Alzheimer’s disease or a related form of dementia, and unpaid dementia caregiving results in $11 billion of lost income annually. By 2040, the treatment, care and lost productivity due to dementia will cost us taxpayers $293 billion each year. Poverty often looms for families that abruptly lose one household income due to the progression of the disease — my family spends $1,800 per month out-of-pocket on long-term care (and this is typical, even inexpensive). We experience the gaps in Canada’s social safety net every day — everything from unsustainable pensions, shockingly long waiting lists for long-term care spaces and poorly subsidized systems that are increasingly difficult to navigate.

For my peers and I — twenty-something caregivers, stuck in a generational wedge we never anticipated — Canada is failing us now and for the future. Alzheimer’s isn’t just my daily reality; it’s a source of ongoing political frustration.

Canada is the only G8 nation without a National Dementia Strategy, despite joining a recent pledge with other G8 nations to find a cure or treatment for Alzheimer’s disease by 2025. Stephen Harper also hasn’t budged on a National Strategy on Aging to address pensions, palliative care and the long-term care system for our increasingly aging population.

Canada’s current Family Caregiving Tax Credit hardly compensates for the loss of income or unplanned early retirement and the occasional support of personal care attendants, home care nurses or Alzheimer’s day programs. Alternative models, such as the U.K.’s caregiving pension credits and Australia’s caregiving allowances, would help to address the more holistic needs of the largely feminized population of informal caregivers. The Dutch and Swiss models of legalization for euthanasia and assisted suicide also deserve careful consideration for the Canadian context, particularly as degenerative conditions like dementia increase dramatically among our aging population.

I am particularly inspired by Canadians like Bennett and Mann. Through their courage and candour, they offer us a meaningful opportunity to confront questions about dementia care, Canada’s social safety net and dying with dignity. Let’s not waste this opportunity to take true political leadership and build a legacy that thousands of Canadian families like mine can be proud of.

Joanne Cave, from Edmonton, is currently a Rhodes Scholar studying social policy at Oxford with a focus on dementia and informal caregiving. She is an alumna of the University of Toronto.