Jan.
5, 2009
For more information:
Patricia Wilkinson
Manager, Media and Government Relations
Office: 1-800-616-8816, or (416)847-2959
Mobile: (416)669-5715
pwilkinson@alzheimer.ca
FAQ - Awareness Campaign 2009
1. What is Rising Tide?
The Alzheimer Society's 'Rising Tide' project studies the impact of dementia in great depth, with a view to understanding the current demographic and epidemiological profile of the disease, along with the economic consequences.
To date, the project has generated the projected prevalence of dementia and major subtypes (Alzheimer's disease and vascular dementia) in Canada by sex, age and province, for 2008 through the next 30 years.
Later in 2009, the full study will be released to the public, with the projected economic impacts of dementia – direct and indirect– for 2009, and for the next 30 years.
Additionally, working with the Alzheimer Society and its network of experts, RiskAnalytica will evaluate "what-if" scenarios that simulate the health and economic outcomes associated with key interventions, such as risk reduction, delaying the onset of the disease, delaying the institutionalizing of people with dementia and maintaining the health of caregivers.
2. Why did you feel such a study was necessary?
For the past decade, dementia, and its potential impacts on the economics of a country, has been the subject of increasing focus around the globe. Australia, Scotland, the United Kingdom, France, the US and the European Parliament have all taken steps to study dementia and its impacts.
To some extent, Canada runs the risk of lagging behind peer countries in understanding the current and projected numbers of people with dementia across the country, and the economic burden of the disease on Canadian society. The Canadian government and its agencies, as well as the dementia research community and Alzheimer Societies, all use statistics extrapolated from the Canadian Study on Health and Aging. This unique landmark study, completed in 1991 with a longitudinal follow-up in 1996, has provided the basis for our understanding of the prevalence, incidence and economic consequences of dementia. The 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.
While this amount is considerable in itself, we know that health care costs, medications, diagnostic imaging and labour costs have all increased well beyond what could have been anticipated in 1991. We also know, from the more recent studies completed elsewhere, that the true costs (both direct and indirect) are markedly higher.
Recognizing these gaps, the Alzheimer Society felt it was critical to embark on this project, which will develop an understanding and analysis of the scale and scope of the dementia problem within the Canadian context. The knowledge gained through this process will provide an evidence-based foundation from which to build a national plan aimed at managing dementias, and directing government expenditures towards activities that have the greatest potential to maximize quality of life and support individuals and families, while at the same time reducing institutionalization and overall health costs.
3. Who is RiskAnalytica?
RiskAnalytica is an employee-owned firm, specializing in independent health care and economic forecasting and intervention evaluations.
RiskAnalytica has researched and developed an approach to health care intervention evaluation. This approach has been realized into a framework called Life at Risk® which has been used over the past five years to evaluate in excess of 60 leading population health policy interventions.
4. What methods are RiskAnalytica using to determine these new prevalence statistics?
The Rising Tide initiative is using a variety of methodological approaches to meet its objectives. Literature review, data analysis and validation, continuum mapping, and consultation with subject experts are being used to compile a comprehensive framework of current data.
Dementia prevalence rates were estimated from a combination of data from the 1991 Canadian Study of Health and Aging (CSHA) and European data from Berr et al. (2005), under consultation with subject-matter experts Drs. Ian McDowell and Joan Lindsay of the University of Ottawa.
5. How can you release this prevalence data before the rest of the study is complete?
The prevalence rates being released by the Alzheimer Society constitutes the first set of data which has been compiled by RiskAnalytica for the Rising Tides study. This information, combined with mortality, survival, life expectancy, risk factors, direct and indirect health costs, and hospital and long-term care home utilization, will form the base case for the economic impact data which will be released later in 2009.
6. What is fueling the increasing prevalence of dementia?
The Canadian population is aging. Because age is the most prominent risk factor in the development of dementia, the prevalence of Alzheimer's disease and related dementias increases sharply with age.
In the last few years, the Canadian federal government has made substantial financial investments into understanding other chronic conditions, such as cancer, cardiovascular disease, and diabetes; investments that are paying off with better prevention and more effective treatments. Somewhat paradoxically, as Canadians become better able to manage these and other chronic illnesses, they live longer, thereby becoming increasingly at risk of developing dementia.
The second factor is related to the risk factors for dementia, which include, along with cardiovascular disease and diabetes, high cholesterol levels, high blood pressure, stress and obesity. Although these risk factors can all be controlled to a degree, they mostly tend to increase with age, adding to the risk associated with age itself.
One also has to consider that over the past decade, an increased awareness of the disease, and our ability to diagnosis it earlier, are contributing to the increase in the number of people being identified as living with dementia.
7. Is this increase just in Canada, or is this a global trend?
As in Canada, the global population is aging. According to Alzheimer's Disease International (ADI), there are more than 30 million people with dementia in the world at this time. ADI estimates that by 2050, this number will increase to 100 million people. Most of this increase will occur in low income countries, where life expectancy is on the rise.
8. Why are so many more women affected by Alzheimer's disease?
On average, women live longer than men, and so with increasing age the incidence of the disease will become disproportionately represented in women.
However, there is general agreement that the altered hormonal status which develops in women at menopause is also a major factor. A variety of hormones associated with the reproductive system (sex hormones) reduce after menopause, causing both hormonal deprivation, as well as an altered balance among the various hormones. Both of these factors are believed to increase a woman's risk of developing Alzheimer's disease.
9. Is it just Alzheimer's disease that affects more women? What about the related dementias?
Today, women represent 72 per cent of all cases of Alzheimer's disease and 47 per cent of all cases of Vascular Dementia, the second most common form of dementia. In the context of overall dementia, women represent 62 per cent of cases.
10. Why has there never been prevalence data for people with dementia under the age of 65 before?
Prior studies looking at the prevalence of dementia in Canada, such as the 1991 Canadian Study on Health and Aging, started their investigations at the age of 65. However, we know that dementia develops much earlier, and wanted to ensure our investigations included people under the age of 65.
11. When will the full study be released, and what additional information will it tell us?
The full study will be released in the middle of 2009. Included will be current data on the economic impact of dementia on Canadian society now, and into the future, as well as a series of 'what if' scenarios. These scenarios, identified by subject-matter experts, will focus on the areas such as risk reduction, delaying the onset of the disease, delaying the institutionalizing of people with dementia and maintaining the health of caregivers. These applications will demonstrate how targeted interventions can impact the burden of dementia in Canada.
12. Why is stigma such an important issue for people with Alzheimer's disease or a related dementia? What is the Society doing to break this stigma?
There is no doubt that stigma remains an issue for people living with Alzheimer's disease or a related dementia. Because of this stigma, people don't seek a diagnosis, and they don't seek treatment. For those that are diagnosed, many don't tell their family and friends, and do not reach out to benefit from the support offered by the Alzheimer Society, and other community groups. This means that thousands of people are facing Alzheimer's disease or a related dementia on their own. Ironically, the social isolation caused by this stigma also contributes to a further decline in brain health.
The Society continues to work hard to raise awareness about the disease, and to educate people about the myths and reality of Alzheimer's disease. Through our First Link® program, we are working harder than ever to reach out to people just after diagnosis, linking them with local support at a time when they need it most.
On a broader scale, the Society is also working closely with the Mental Health Commission of Canada, ensuring that those with dementia are not forgotten in the creation of the anti-stigma campaign.
As people with dementia are diagnosed earlier, they are in a unique and strong position to have their voices heard. By hearing from those who are living with dementia, we can begin together to break down the stigma that prevents people from getting the support they need and being able to continue to live meaningful lives.
13. Where does Canada place on the research spectrum in terms of Alzheimer's disease-related discoveries?
Canada ranks among the top in the world for Alzheimer research. Numerous Canadian researchers are credited with making important discoveries relating to Alzheimer's disease in genetics, inflammatory mechanisms, neuroprotective processes, treatment strategies and caregiving.
14. Are we close to finding a cure?
We've taken great leaps in the fight against Alzheimer's disease especially in the past five to seven years. There is no doubt that breakthroughs - such as vaccines, new drugs and treatments that attack the disease process, and new diagnostic tools - are within five to seven years of becoming a reality.
Still, research remains the key to finding a cure, and we must do whatever we can to accelerate the pace of progress, including increased funding for Alzheimer research.
15. What are the biggest challenges facing researchers?
The biggest challenge facing researchers is the lack of funding available to them. Unfortunately, the amount of money being spent on Alzheimer research in Canada is not nearly enough to fund all the worthwhile research proposals. For example, in 2008, the Alzheimer Society Research Program was able to fund only 50 per cent of the research applications we received that were rated highly by the review panels as worthy of support. The rest just couldn't be funded.
16. What is the Alzheimer Society doing to address the need for increased research funding?
The Alzheimer Society of Canada is a leading funder of Alzheimer research and research training in Canada, contributing close to $30 million in the past 20 years. In 2008, the Society and its partners funded over $2 million in support of both Biomedical and Quality of Life research fields. The Alzheimer Society Research Program represents the hope for tomorrow for all those we serve. Recognizing both the increasing need, and the fact that scientists are so close to developing treatments that stop the disease process, the Alzheimer Society is committing to increase its research funding significantly over the next three years. But we cannot do it alone. We need the help of every Canadian, and all levels of government, if we are going to meet our goals, and do our part of help eradicating dementia.
17. What work is happening right now in the Alzheimer research field that is the most exciting?
Some of the most exciting research right now in the biomedical field includes potential drug therapies PBT2 which opposes A-beta production, and has been shown to improve the brain function of people in early stages; Rember, a drug which is showing an 81 per cent improvement in the rate of mental decline; and AL 108, a drug administered by way of a nasal spray. For more information on current research, please see Media Fact Sheet 'In Pursuit of a Cure'.
18. What work is happening right now in the Alzheimer Society Research Program that is most exciting?
The Alzheimer Society funds some of the best and brightest scientists in Canada, half in the biomedical field in the search for more effective treatments and eventually a cure, and half in the field of Quality of Life research. The Quality of Life field is something we ourselves consider to be a very exciting part of our research program, as it funds projects that have immediate benefit in the lives of those living with dementia, and the people who care for them. For more information, please visit the research section.
19. You say everybody has a role to play, what do you mean by that?
Everybody has a reason to care. Alzheimer's disease and related dementias already affect close to half a million people. Within a generation, this number is going to more than double. We all have a responsibility to do the things we can to help turn the tide. These include:
- Donate funds to support critical research in the effort to find better treatments and eventually a cure.
- Raise your voice – tell your governments that we need to make dementia a national health care priority now, while there is still time.
- Reduce your own risk of developing dementia. Do the things you can, such as eating healthy foods, challenging your brain, staying socially active and protecting your head.
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