Mamadosewin (meeting place, walking together)

Living with Dementia—Inquiry

Living with Dementia—Inquiry

Living with Dementia—Inquiry

Living with Dementia—Inquiry

Published on 4 February 2015 Hansard and Statements by Senator Elizabeth Hubley (retired)

Hon. Elizabeth Hubley:

Honourable senators, I am pleased to speak briefly today on Senator Andreychuk’s inquiry on Canadians providing care for loved ones with dementia. She is quite right to bring this discussion forward.

There is no doubt that dementia, and all the consequences that go along with it, is a growing problem. In 2011, the year for which we have the recent numbers, three quarters of a million people — about 747,000 — had Alzheimer’s disease or a related dementia in this country. Those numbers are expected to increase substantially in the coming years because dementia is largely age-related and people are living longer.

In fact, the Alzheimer Society of Canada estimates that the number of Canadians suffering from Alzheimer’s disease or related dementias will increase to more than 1.4 million by 2031.

Behind these numbers, there is a much more significant cost, the human cost associated with those people who are affected by dementia. Individuals with dementia are often faced with stigma, isolation and the loss of autonomy. It can be frustrating and frightening. For family and friends caring for someone with dementia, it can take a terrible physical and emotional toll. We have heard those stories in the speeches that have come before mine, and I have no doubt many of us have stories in our own families.

Statistics Canada’s most recent General Social Survey provides us with the numbers for caregivers in general. More than 8 million working age people provided care to a family member or a friend in 2012. They did so for a variety of reasons, including mental illness, aging, injury from accidents and dementia. With numbers like these, it is not hard to see that caring for a loved one is fast becoming reality for an increasing number of Canadians. More than a third of Canadians already know someone with Alzheimer’s disease, and nearly one in five has someone with Alzheimer’s disease in their immediate family. Caregivers spend 444 million unpaid hours per year caring for persons with cognitive impairment, including dementia, representing $11 billion in lost income.

We know it will only get worse. The Alzheimer Society estimates that in about five years, about 50 per cent more Canadians and their families could be facing Alzheimer’s disease or a related dementia. By 2040, family caregivers will spend a staggering 1.2 billion unpaid hours per year.

Maintaining the status quo is simply not an option given the impending crisis of dementia that looms over this country. That is one of the reasons we need a national dementia strategy. It is hard to believe, but Canada currently has the dubious distinction of being the only G8 country not to have a national strategy. We need a collaborative and concerted effort. We need to bring together everyone with a stake in this issue — governments, researchers, health professionals and others — to come up with a pan-Canadian strategy that takes caregivers into consideration.

The premiers, through the Council of the Federation, have already made challenges surrounding dementia a priority. The Health Care Innovation Working Group, under co-chairs Premiers Ghiz, Wynne and Pasloski, have been sharing innovative policies and programs that support aging in place and the early diagnosis and treatment of dementia.

Last summer, the working group was directed to continue their work on seniors’ care and the changing and growing needs of a rapidly aging population. While this is a start, a national strategy requires some federal collaboration, and that collaboration could lead to additional assistance and supports for the caregivers.

There are real consequences to ignoring the problem. Primary caregivers can end up suffering from caregiver stress and exhibit serious symptoms, such as anger at the person with the disease and others, emotional sensitivity, social withdrawal, fatigue, anxiety and depression.

Luckily in my home province, the Alzheimer Society of Prince Edward Island does what it can to alleviate the personal and social consequences of Alzheimer’s disease and other dementias for the nearly 2,500 Islanders living with dementia and their caregivers.

For instance, they have partnered with MedicAlert Foundation to offer the MedicAlert Safely Home program, which is a registry service for people living with dementia. They wear a MedicAlert bracelet with their personal information and a hotline number engraved on it. That way, they can be quickly identified if the person goes missing. It provides tremendous peace of mind to caregivers knowing that a system is in place to bring their loved ones safely home.

Since 2011, the Alzheimer Society has been offering First Link, a referral program to assist people diagnosed with Alzheimer’s disease and other dementias, as well as their families and caregivers. It helps by connecting caregivers to the supports and services available through the Alzheimer Society and within their own communities. They also provide the Family Caregiver Education Series, which helps caregivers and family members learn how to care for a person with dementia.

The Alzheimer Society of PEI also supports five family caregiver support groups across the province and offers counselling to all Islanders who are dealing with the effects of caring for someone living with dementia. The society also has many reading materials and DVDs available on a variety of topics, such as caregiving, stress and grief, which can be loaned out to interested caregivers.

But supports like those provided in my home province are not necessarily available elsewhere, and it is certain we could be doing more for caregivers everywhere. We must recognize the intricate role caregivers play, as well as the social and economic value they provide to society as a whole. We must also do what is possible to help support them in this important role.