Frequently Asked Questions
1. Why is advocacy important to the work of the Alzheimer Society?
While the Society strives to meet the needs of everyone touched by this devastating illness, it is essential that we have the support and assistance from this country's federal and provincial governments. Working together, we can offer people with dementia and their families the very best care for today, and the very best hope for tomorrow.
That is why the Alzheimer Society is working hard to ensure that these governments, as well as federal and provincial organizations, support legislation, policies and programs that are responsive to the needs of people living with dementia, their caregivers and their families.
2. What are you asking the federal government to do in the fight against Alzheimer's disease?
With approximately half a million Canadians affected by dementia today, or one in every 11 over the age of 65, this is more than just an important health concern. This disease has the potential to overwhelm the health care system if fundamental changes are not made in research funding and care delivery.
The Alzheimer Society believes that research remains the key to finding a cure, and that a significant investment in science is essential if we are to eradicate dementia. We also believe that there must be better support, care and treatment for people living with Alzheimer's disease or a related dementia.
With this in mind, the Alzheimer Society of Canada is building on the success of previous federal government initiatives, and advocating to the Government of Canada to make dementia a national health care priority, as well as sponsor the development of a Canadian Dementia Management Strategy.
3. What do you mean when you say that you expect dementia may prove to have the highest economic, social and health cost burden of all diseases in Canada?
A Canadian Institutes of Health Research study from 1991 estimated that in 2000, the annual economic impact of Alzheimer's disease and related dementias at $5.5 billion. This includes the cost of paid and unpaid services in the community, care in long-term care institutions, drugs, hospitalization, diagnosis and research. Understanding that these numbers are based on old data, updated economic impact information is a key piece of the Riding Tide study, a piece that will be released to the public later in 2009.
What we know right now is that other countries, such as the United States, the UK and Australia, have already completed this task and published recent studies outlining the costs of the disease in their respective countries. An example of this is a 2007 report from the Alzheimer Association that puts the direct and indirect costs of Alzheimer's and other dementias in the United States at more than $148 billion annually.
4. Why do we need a Canada-wide strategy?
A Canadian Dementia Management Strategy will co-ordinate health efforts across the country and ensure that there are standards that will be met in the provision of care, services and support for individuals with dementia and their caregivers. We have an obligation to give Canadians with Alzheimer's disease or a related dementia and their families the benefits of high quality research, early detection and intervention; access to proper caregiving; sufficient services; and a voice to represent their needs and interests.
A great deal of progress has been made in Alzheimer's disease research, care, education and awareness. But the fact remains that there is currently no known cure for Alzheimer's disease, and baby boomers will soon be reaching the age of highest risk. We must act now.
5. Why should we target dementia as a national health priority and not cancer, heart disease or some other chronic disease?
Cancer, cardiovascular disease, and diabetes are all serious conditions, and very large investments have been made by the federal government in the past few years into treatment, research and prevention of them. In fact, we have done so well at managing chronic diseases that people are beginning to live much longer. As you know, age is one of the biggest risk factors for dementia. We now need to put the same focus and energy into dementia. Dementia is unique in that it is a disease that involves constant care for many years, either from caregivers or long-term care facilities. The impact of this disease engulfs whole families and affects far more than the half a million people living with the disease.
6. Health Care is primary a Provincial responsibility. Why are you advocating to the Federal Government?
The impact of dementia on our nation's health, social, and economic well-being can not be overstated. While health care delivery is a provincial mandate, we are looking at a national crisis that requires innovative and integrated thinking to find effective solutions. Our hope is that federal representatives will demonstrate leadership by making Alzheimer's disease and related dementias a national priority, whereby Canadians from coast-to-coast-to-coast have access to the best quality of care and support, and where society makes the adjustments required to ensure that every Canadian can be fully engaged.
7. What is being done at a provincial level?
In concert with the Alzheimer Society of Canada's efforts at a federal level, the Society's 10 provincial partners work with provincial and local governments on a number of advocacy related issues.
These include:
- Advocacy for provincial dementia management strategies (which are already in place in six provinces including Alberta, Saskatchewan, Manitoba, Ontario, New Brunswick and Newfoundland & Labrador)
- Increased funding for research
- Increased public awareness about dementia
- Early diagnosis and treatment
- Education and skill development for physicians and care providers
- Improved access to care services (especially in rural areas)
- Supports for caregivers
- Dementia care standards
- Knowledge transfer and exchange
- Commitment to health promotion
8. What is the global impact of dementia, and what is being done internationally to help combat this disease?
Dementia is a worldwide concern, affecting people in every country, and on every continent. There are approximately 24 million people currently living with dementia, with the total worldwide cost of care estimated at US$315.4 billion annually*.
Across the globe, Alzheimer associations are using advocacy to help shape government decisions, which in turn offer better quality of care, and direct more funds to research. Alzheimer's Disease International, an international federation of 77 Alzheimer associations around the world, is working to support its members in making dementia a global health priority.
For the past decade, dementia and its potential impacts on the economics of a country, has also been the subject of increasing focus around the globe. Australia, Scotland, United Kingdom, France, and the European Parliament have all taken steps to study dementia and its impacts. Many have chosen to make dementia a national priority.
9. What can the public do to help?
10. In the last election, the Government announced $15 million towards the study of neurological diseases in Canada. Are you involved in this project?
Yes. The Neurological Health Charities of Canada (NHCC), of which the Alzheimer Society is a founding member, is working hard to ensure that they play a central role in facilitating this landmark project. It is critical that this project be guided and directed by those representing the people affected by these neurological conditions, therefore ensuring that they are not only engaged, but that their voice, and their needs, are understood and acted on.
11. Do you work in partnership with other organizations regarding your advocacy work?
Yes. Alone, the Society only has the influence of a single organization. However, when our voice is combined with other groups who share similar issues, we become much more powerful, and much more efficient. It also ensures that we are not duplicating our efforts, with multiple organizations asking the government for essentially the same things, such as financial relief to caregivers, or quality end of life care for all Canadians in palliative care.
Examples of our current partnerships include:
*The total worldwide cost of dementia care is estimated to be US$315.4 billion annually, according to a report published in "An Estimate of the Total Worldwide Societal Costs of Dementia in 2005," in the April 2007 issue of Alzheimer's & Dementia: The Journal of the Alzheimer's Association.
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