Frequently Asked Questions
- Why is advocacy important to the work of the Alzheimer Society?
- What are you asking the federal government to do in the fight against Alzheimer's disease?
- Why do we need a Canada-wide strategy?
- Why should we target dementia as a national health priority and not cancer, heart disease or some other chronic disease?
- Health Care is primary a Provincial responsibility. Why are you advocating to the Federal Government?
- What is being done at a provincial level?
- What is the global impact of dementia, and what is being done internationally to help combat this disease?
- What can the public do to help?
- The government recently committed $15 million towards a four-year study for neurological diseases. Are you involved in this project?
- Who is the Neurological Health Charities of Canada (NHCC)?
- There is now a call by this large group of neurological charities for a National Brain Strategy. How does this fit with a National Dementia Strategy?
- What about the specific needs of those living with dementia? Won't they be lost if we blend them together with this larger issue?
- Do you work in partnership with other organizations regarding your advocacy work?
- Will your involvement in these groups distract you from the specific priorities of people living with Alzheimer’s disease or a related dementia?
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, care for the caregivers 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 sponsor the development of a national strategy that will address the needs of people affected by dementia.
3. Why do we need a Canada-wide strategy?
A Canada-wide 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.
4. 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.
5. 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.
6. 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
7. 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. According to Alzheimer’s Disease International, there are approximately 35.6 million people currently living with dementia. The total worldwide cost of care is 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.
* 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.
8. What can the public do to help?
9. The government recently committed $15 million towards a four-year study for neurological diseases. Are you involved in this project?
Yes. The National Population Study of Neurological Conditions will be co-led by the Government of Canada Health Portfolio (Public Health Agency of Canada, Health Canada and Canadian Institutes of Health Research) and Neurological Health Charities Canada (NHCC), of which the Alzheimer Society is a founding member.
The NHCC is responsible for all aspects of communication and coordination of the project, specifically ensuring that people living with neurological conditions continue to have input throughout the 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.
10. Who is the Neurological Health Charities of Canada (NHCC)?
NHCC is a collective of organizations that represent people with chronic, often progressive, brain diseases, disorders and injuries in Canada. NHCC’s role is to provide leadership, evaluating and advancing new opportunities for collaboration specific to advocacy, education and research projects, related to brain health. There are 17 current members, including ALS Society of Canada, Canadian Epilepsy Alliance, Huntington Society of Canada, Multiple Sclerosis Society of Canada, NeuroScience Canada and Parkinson Society Canada.
The Alzheimer Society is a founding member of the NHCC, which was formed in 2008.
11. There is now a call by this large group of neurological charities for a National Brain Strategy. How does this fit with a National Dementia Strategy?
The call for a National Brain Strategy is an expansion of what the Alzheimer Society is already calling for. The key recommendations included in the Rising Tide report, research, support for caregivers, better systems of care, prevention and early diagnosis and increasing the dementia workforce, are pillars in the National Brain Strategy being proposed by Neurological Health Charities Canada (NHCC). The additional pillars, including genetic privacy and income security, are issues that also have value to the dementia community.
As a founding member of the NHCC, the Alzheimer Society is taking a leading role in ensuring that the needs of the dementia community are addressed by the federal government, whether that be in a dementia specific strategy, or the broader brain strategy.
The important thing to remember is that policy makers have told us, and other neurological charities, that they would have a difficult time finding support for disease specific strategies, however the idea of a much broader based Brain Strategy is something that seems to have some support from members of all parties in the federal government.
12. What about the specific needs of those living with dementia? Won't they be lost if we blend them together with this larger issue?
While those living with dementia have very specific needs, it is important to remember that many of those needs are common to those affected by other neurological diseases, such as Parkinson's, MS and ALS. Things like caregiver support, research and better systems of care are universal issues across many of these illnesses.
It is also important to remember that while there are currently half a million people living with dementia, there are closer to 3 million Canadians living with a neurological condition. By supporting the development of a National Brain Strategy, the Alzheimer Society is not only ensuring that the needs of those living with dementia are addressed, but also the needs of those living with all neurological conditions. In other words, this is an opportunity for the dementia community to not only affect change for the people we care about, but also for millions of other Canadians.
13. 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:
14. Will your involvement in these groups distract you from the specific priorities of people living with Alzheimer’s disease or a related dementia?
While we are committed to a number of partnerships and collaborations, it is important to remember that each of these groups work together on very specific projects/priorities. These groups allow us to share information and become smarter about what other people in the Neurological and Health Charity field are focusing on.
This allows the Society to add its weight to the more general subjects that are important to those living with dementia, such as caregiving and end of life issues, while focusing its own efforts on the things that are specific to our group, and not addressed by these various partnerships.
In a time of shrinking resources, and fewer government dollars to go around, this type of collaboration is critical to ensuring success in the policy arena.
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