Living with Dementia Inquiry – Debate Continued


Inquiry: Living with Dementia Senator Jane Cordy March 10th, 2015

On the Order:

Resuming debate on the inquiry of the Honourable Senator Andreychuk calling the attention of the Senate to the challenges confronting a large and growing number of Canadians who provide care to relatives and friends living with dementia.

Hon. Jane Cordy: Honourable senators, imagine a world where the known becomes the unknown, the familiar unfamiliar. Imagine waking up next to someone you do not recognize or forgetting memories that it has taken a lifetime to make. This world must indeed be a frightening one, and yet this is something that is experienced by a growing number of Canadians.

In 2011 it was estimated that 740,000 Canadians suffered from some form of dementia. It is projected that should nothing change in Canada this number will increase to 1.4 million people by the year 2031. Sadly, this does not even begin to reflect the number of people who are affected or touched by this disease when you calculate the number of spouses, children and caregivers who deal with it on a day-to-day basis.

I would like to speak to you for a moment regarding one particular man from Nova Scotia. His name is Darce Fardy. Darce is a former journalist and former freedom of information officer who lives in Halifax. He was diagnosed with dementia and he has been writing regular articles for The Chronicle Herald on its progression. He has shared stories about his return to the gym to help him with focus, as well as his consultations with the physiotherapist in order for his body to remain strong for as long as possible. What is most remarkable about Darce's stories is the humour he has managed to retain throughout his diagnosis and progression. He talks openly about how this disease affects him and those around him on a day-to-day basis. He has said:

There is no reason for those with dementia to avoid people and that's the message I am trying to get out.

Darce has said that many people have thanked him profusely for sharing his stories, and they have encouraged him to continue his writing. He also has a fair share of people who are unsure of how to act around him, but slowly and surely he shows them that there is much about who he is that still remains. Honourable senators, his articles in Halifax's The Chronicle Herald are extraordinary and it is well worth reading them. His doctor, Dr. Ken Rockwood, Professor and Director of Geriatric Medicine Research at Dalhousie University, was a witness before the Special Senate Committee on Aging for our report Issues and Options for an Aging Population, tabled in the Senate in March 2008.

Dementia can appear in many different forms. It is very different from but often confused with age-associated memory impairment, the latter of which will affect nearly 40 per cent of people over 65. Warning signs for dementia and Alzheimer's disease in particular can include memory loss that affects day-to-day function; difficulty performing familiar tasks; problems with language; disorientation of time and place; poor or decreased judgment; problems with abstract thinking; misplacing things; changes in mood, behaviour or personality; and loss of initiative.

There are many benefits to an early, accurate diagnosis of the disease, including having the patient become actively involved in their health care, as well as learning to use medications effectively. This also provides the family with an opportunity to learn about the condition and to prepare to support their loved ones. Honourable senators, it is important that families seek support for themselves as caregivers. Early diagnosis is also helpful in fighting the stigma that is often associated with mental health issues. It can help people with dementia to continue to live their lives to the fullest and to share their experiences so that others will be encouraged to seek diagnosis and support. As with any disease, it is important to learn the facts, not to make assumptions, and to treat those with dementia with respect and dignity.

Some steps can be effective in preventing dementia. It is helpful to maintain a healthy weight through regular exercise and a healthy diet. It is also recommended to limit alcohol consumption, to not smoke, and to keep blood pressure at a healthy level. Further to these important steps, we need leadership in the way of education. While it is clear that Canadians over 65 must be encouraged to be more active, we must develop programs and national advertising strategies that are targeted towards seniors and the types of activities they can do to keep active and to delay the onset of dementia. Such activities might include walking, swimming, aerobics and aquasize.

Honourable senators, the effects of this disease are far reaching. Because we do not, as yet, have a straightforward test to diagnose dementia and because there is no known cure or way to reverse its damage, it is critical that we make prevention a top priority. It is essential that we not only care for those with dementia but also their caregivers. The strain of caring for a loved one with dementia can often be overwhelming on many levels. There is, of course, the physical care that is required, but it is often the emotional toll that leaves the deeper, longer-lasting impression. When originally asked to speak with CBC's "The Current" regarding his condition, Darce Fardy commented that they sensibly asked his wife to join the interview. In one of his articles he notes:

. . . I have said many times that when dementia happens, the family is affected as much as the person diagnosed.

Dorothea does not share the same enthusiasm for public attention that her husband, a former journalist, does. But she recognizes that people need to hear her story as well as mine.

Honourable senators, it is imperative that we develop some form of skill-building support programs for informal caregivers. It has been noted that while women make up 72 per cent of Canadians with Alzheimer's disease, mainly due to longer life expectancy, they also make up the larger percentage of caregivers for those with Alzheimer's. There's currently little training and few supports available for informal caregivers. Supports for strategies in terms of competency and coping skills, or a case manager to support and provide coordination to the patient as well as to the caregiver would be not only beneficial but it is estimated that it would also save the health care system approximately $114 billion.

I'm supportive of Senator Andreychuk's suggestion that we develop a Canadian response and that we re-evaluate our long-term care system in order to better recognize the work and needs of informal caregivers and to support them in this way. Many countries, including Australia, Norway, the Netherlands, France, Scotland and the United Kingdom have developed specific frameworks to deal with dementia. Unfortunately, we in Canada do not have a national strategy. Currently, six out of ten provinces are developing strategies, but it is clear, as it has been in the past with other diseases, such as diabetes, cancer and HIV/AIDS, that stronger programs develop once the federal government commits to being seriously engaged. This commitment will ensure that informal caregivers are able to provide better care for their loved ones.

We cannot change the challenges of the situation for those with dementia and their caregivers, but we can make it easier for them to deal with this disease.