Thank you, Madam Chair, and my thanks to the committee members.
Canadians are living longer and are healthier than ever before. Some of us, however, will develop the chronic disease of Alzheimer's or another age-related dementia. Even though we will be able to stay in our homes or communities longer than in previous years, sooner or later our care needs will overwhelm our families and communities and we will be moved to a nursing home, where we will spend the last few years or months of our lives. In 2038, we expect that one million Canadians will have Alzheimer's or a similar age-related disease. Three-quarters of those are expected to die in a nursing home.
Dementia is a progressive disease of unrelenting losses. There are losses of memory and of the ability to manage one's affairs and to recognize family members. Ultimately, there is the loss of the ability to perform the most basic activities of daily life: feeding, walking, talking, swallowing, going to the toilet. There is no cure.
Because many of us cannot imagine what it is like to live in a nursing home, I would ask you to imagine for a moment an experience we are each all too familiar with: flying, and not the Ottawa-Toronto or Ottawa-Montreal junket, but a flight from Ottawa to Sydney, Australia.
The organization of everyday life in a nursing home can be likened to the organization of everyday life in an airplane.
You have no choice of who you sit beside, and there's a risk that the seatmate may smell, slurp food, chatter endlessly, or refuse to participate in even occasional exchanges of pleasantries. You have to stuff your few allowable personal belongings away so they do not encroach on your neighbour or the aisle. You eat on the schedule imposed by the airline, not when you are hungry--assuming you're fed, of course--and moreover, you have little choice over what you eat. You have to use and wait for communal facilities such as bathrooms, and you can't get to the toilet when needed because there is a cart in the aisle or the seat-belt sign is displayed. Television sets are turned on regardless of your interest in watching them. You have to wear a restraint to protect against the rare possibility of injury. There is nothing to do and nowhere to go.
Notably, the quality of service can also depend on your ability to pay. As airline travellers, we put up with these temporary constraints on our space and autonomy because the trade-off is that it gets us to where we want to go.
We then might ask, “What is the trade-off for residents of nursing homes?” These old people who live and die in nursing homes do not contribute any longer, as they did in their youth and middle adulthood. They do not teach, or police, or doctor, or nurse. They do not build, renovate, act, or govern, or swim, ski, or run like the wind any longer. They no longer vote. They are Rita Hayworth and Ronald Reagan, Norman Rockwell and Tommy Dorsey, and Winston Churchill and Margaret Thatcher. More importantly, they are our mothers, fathers, sisters, brothers, husbands, and wives, and sometimes they will be us.
We care tenderly, and with all of our knowledge and skill, for our frail and vulnerable premature newborns. We place them in some of the most high-tech and expensive facilities in the country: neonatal intensive care units. We think nothing of doing this, believing that a life to be lived is precious and with inherent value. At the other end of life, however, we place our frail and vulnerable old people in nursing homes, the least expensive and least knowledge-driven environment in which care is delivered in Canada, raising questions about the value Canadians place on a life that has been lived and has built the country.
We can tell you a lot about what is wrong with nursing homes in Canada and with the services we do and do not provide to seniors: the ill-designed and fragmented residential system that fails to provide effective, efficient, and compassionate care for frail, vulnerable older adults; the mounting evidence in provincial, national, and international reports of poor quality of care and poor quality of life for institutionalized elderly; and the reduced quality of work life for their care providers.
Rather than go through these, however, we think it might be helpful to highlight how some of these things can be improved.
I will start by saying that we would endorse anything that will keep older Canadians out of nursing homes as long as possible, in their own homes and communities, although not at the expense of the health and well-being of their family caregivers at home. But we cannot dodge the nursing home reality or the fact that some 80% of caregivers are unregulated, with little or no training. Nor can we dodge the fact that the residential long-term care sector has the lowest proportion of funding of any sector in which health care is provided, the fewest numbers of researchers, and the lowest rates of research funding.
Nursing homes are a segregated part of our system that few of us know much about. We simply don't give them much thought until a loved one needs one. They are one of the few settings where we have not completed de-institutionalization.
However, nursing homes in 2011 are a far cry from those of 10 or 20 years ago. Levels of privacy are better. Restraint use is less. Newer homes and more modern models of care offer more home-like environments, safer access to the outdoors, and better management of pain. We have these glimpses of better ways to make the lives of these older Canadians better, with some pleasure in some of everyday life.
One way we do this, and the reason I believe we were invited, is through applied practical research--in our case, the translating research in elder care program, or TREC. Thus far, TREC has been a good success story, and we think a good model for helping to change this part of the system--good because it is large. It received a $5-million grant from the Canadian Institutes of Health Research, a strong vote of confidence for much-needed work in the area. It includes to date some 40 nursing homes, 3,000 care aides, and 500 regulated health professionals, as well as thousands of resident health records.
This enables us to study the considerable variation across provinces and the variety of conditions in those provinces. We need more large-scale applied health services studies, and those need to be complemented by clinical studies that will show us how to manage problems of mobility, pain, and incontinence, and to create enjoyment in daily life.
In TREC we have been able to identify nursing homes where staff use new knowledge more often and are healthier and less burned out, and thus are able to provide better care. We have also successfully identified strategies to engage and mobilize the front-line care staff to work on and improve care practices and to use new knowledge that will improve quality of daily life and quality of end of life, safety, quality of work life of the care providers, the use of best practices, and support for family and other informal caregivers.
The TREC system does this by helping us to identify key areas for action and key areas of good practice that we should spread, to produce comparative reports so that nursing homes can benchmark, by providing a platform on which we can test the effectiveness of new strategies and programs, and by identifying important areas for additional and future work.
Dr. Pringle.