Rising Tide FAQ
The Alzheimer Society's 2010 report, Rising Tide: The Impact of Dementia on Canadian Society, 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.
- Why did you feel such a study was necessary?
- Who is RiskAnalytica?
- Has the Life at Risk Model® been used to study other diseases?
- In the Rising Tide study, are we referring to all dementias, or just Alzheimer's disease?
- What is the difference between Alzheimer's disease and dementia?
- Has the report been vetted by an external group to verify the findings?
- Who are the subject experts referred to in the report?
- The Report demonstrates that the prevalence of dementia will almost double over the next thirty years and that this will account for a tenfold increase in the economic burden during this time period. What would account for this?
- How can we know the statistics are reliable?
- What is the difference between prevalence and incidence?
- What is cumulative incidence?
- Why is there a range of data for each year?
- What is fueling the increasing prevalence of dementia?
- Is this increase just in Canada, or is this a global trend?
- What is the difference between direct, indirect and opportunity costs?
- Do Direct, Indirect and Opportunity Costs overlap, thereby duplicating costs in the calculations?
- What is the margin of error for the economic costs?
- Could you clarify how you calculated that dementia is expected to cost society over $872 billion dollars?
- What is cumulative economic impact?
- Where do the majority of costs come from when caring for people with dementia? If it isn't treatment, what is it?
- Why does the report indicate that we expect a shortfall in LTC beds?
- Is there any information that compares the Rising Tide study to the economic burden of diabetes, heart and stroke or cancer?
- What are intervention scenarios?
- Why were these four intervention scenarios chosen?
- How were the scenarios run?
- What literature was used to support the intervention scenarios?
- Are these the only possible interventions, or are there others?
- Do the savings from each also include the cost of implementation?
- Are the scenarios a choice between one and the other? Or can some of them be used in conjunction with each other?
- Were the Rising Tide results what you expected?
- The recommendations at the end are very high level. What do you expect government to do with them?
- What does the Society want the general public to do?
- 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?
- You say everybody has a role to play, what do you mean by that?
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 study 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.
RiskAnalytica is an employee-owned firm, specializing in independent health care and economic forecasting and intervention evaluations.
The RiskAnalytica team is an independent and multidisciplinary group of researchers (management, mathematical methods, computer science), technologists and consultants with a sole dedication to the development, implementation and application of best practice analytical management and forecasting methods in health care.
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.
Other clients of RiskAnalytica currently include the Canadian Cancer Society, Health Canada, Public Health Agency of Canada, Alliance for the Canadian Arthritis Program, Rick Hansen Foundation, and Hoffmann La-Roche.
Life at Risk® is an approach that has been developed by RiskAnalytica, a company which specializes in population-based health evaluation and intervention impact analysis to inform policy, economic and investment decisions.
The Life at Risk® framework simulates the possible future health states of a population along with associated disability and economic burden. To date, the Life at Risk® model has been used for several burden of illness studies, intervention impact analysis and program evaluation across many health conditions including different types of cancer, cardiovascular disease, spinal cord injury, HIV/AIDS, arthritis, and pandemic influenza in Canada.
The Rising Tide project studies irreversible dementias, not just Alzheimer's disease. The term "dementia" refers to a large number of disorders, including Alzheimer's disease and vascular dementia, each of which is characterized by progressive deterioration of thinking ability and memory.
Dementia is a syndrome consisting of a number of symptoms that include loss of memory, judgment and reasoning, and changes in mood and behaviour. Alzheimer's disease is the leading form of dementia. It currently represents approximately 64 per cent of all dementias. This will increase to 69 per cent by year 2034, i.e. within a generation. Vascular Dementia is the second most common form of dementia. It currently represents 20 per cent of all dementias and will continue to do so within a generation. Other forms of dementia include Lewy body dementia and Fronto-temporal dementia.
The features of Alzheimer's disease include a gradual onset and continuing decline of memory, as well as changes in judgment or reasoning, and the inability to perform familiar tasks.
Sometimes a person may have symptoms such as sudden onset of memory loss, early behaviour changes, or difficulties with speech and movement. These symptoms may suggest a dementia other than Alzheimer's disease.
The Rising Tide project has been continuously informed by key subject experts. At various stages of the study, subject experts provided ideas, advice and validation of findings. Subject experts helped design the study by providing validation of data inputs, modeling approach and assumptions. Given the approach and assumptions applied, the expert panel reviewed the reasonableness of the findings and interpretation of the results of the study. They have determined that the findings are reasonable, reliable and comparable to other estimates. The advice of experts in epidemiology, health economics and policy analysis has been critical throughout the study. Now that the report is complete, the Alzheimer Society will be commissioning an independent health economics review.
The subject experts referred to in the report are listed at the front of the complete document. They include academics and practitioners in the fields of Geriatrics, Neurology, Medicine, Psychiatry, Epidemiology, Public Policy, Rehabilitation, Health Care Delivery, etc. As well, service providers in long-term care, home care, and community support were involved at various stages of the project. Alzheimer's disease expertise was provided by staff, board and volunteer members of Alzheimer societies and chapters.
8. The Report demonstrates that the prevalence of dementia will almost double over the next thirty years and that this will account for a tenfold increase in the economic burden during this time period. What would account for this?
Dementia will have a growing economic impact on Canadian society over the next 30 years. Direct, indirect and opportunity costs will escalate over this time period as will demands on the health care system. For example, over the next 30 years the excess demand for long -term care beds for dementia patients alone is expected to increase by over 10 times the current demand. However constraints on supply of long-term care beds will leave dementia patients requiring critical care largely dependent on community-based services and informal caregivers. The total number of hours of informal care is expected to increase by 3.2 times the current estimate. Lost productivity of persons with dementia and their caregivers will also have profound economic repercussions over the next three decades.
RiskAnalytica's Life at Risk® platform that used to generate the forecasts is based upon discrete event simulation methods that are considered by the literature to be the best practice modeling approach.* The Life at Risk® platform generates forecasts of future incidence, prevalence and mortality strictly from historical data and empirical models (e.g. analyzed cohorts) provided by leading researchers and clinicians in the field.
Second, to ensure there was no room for any doubt, we engaged a panel of experts to review both the methods and results of the prevalence data. These experts included Epidemiologists Dr. Ian McDowell, who was the principal investigator for the 1991 Canadian Study of Health and Aging, and Dr. Joan Lindsay.
* Literature includes: Caro JJ (2005) Pharmacoeconomic analyses using discrete event simulation. Pharmacoeconomics 23: 323-332. Groothuis S, van Merode GG, Hasman A (2001) Simulation; as decision tool for capacity planning. Comput Methods Programs Biomed 66(2-3):139-151.
Prevalence is distinct from incidence. Prevalence is a measurement of all individuals affected by the disease within a particular period of time, whereas incidence is a measurement of the number of new individuals who contract a disease during a particular period of time.
Cumulative incidence is the proportion of a population that experiences the onset of dementia (new cases) during a specified time interval – for example during a particular year or decade. New cases are totaled for the time period to arrive at the cumulative incidence for that time period.
There is some amount of uncertainty when dealing with this type of study, most of which comes from the population projections themselves. This data, which is based on numbers from Statistics Canada, are projected with a low, medium and high population number. We have estimated our prevalence data in the same fashion and have primarily used medium gauge figures in our messaging.
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.
As in Canada, the global population is aging. According to Alzheimer's Disease International (ADI), there are more than 35.6 million people with dementia in the world at this time. ADI estimates that by 2050, this number will increase to 115.4 million people. Most of this increase will occur in low income countries, where life expectancy is on the rise.
The total economic burden of dementia in Canada over the next 30 years includes direct costs, indirect costs, and opportunity costs.
- Direct costs include the cost of providing care, the cost of paying care providers including physicians, the cost of long-term care/nursing homes and hospitals, the cost of medication, the cost of community-based care, costs of over-the-counter medications and out-of-pocket expenses. These are costs directly incurred for treatment and care of dementia within the formal health care system and outside of it.
- Indirect costs are costs that are not directly related to dementia but a consequence of it. These costs consider the reduction in labour productivity resulting from disability due to dementia itself and the disability incurred by the provision of informal care to dementia care recipients and therefore include lost wages and lost corporate profits due to the disability of people with dementia and informal caregivers. The indirect costs take into account presenteeism, absenteeism and leaving the labour force that can be attributed to the disability associated with dementia and the provision of dementia care.
- Opportunity costs is the value of time related to unpaid caregivers that result from unpaid informal care responsibilities. These costs represent the forgone value (wages unearned) if the caregiver was paid for the number of hours spent providing care.
There is no overlap in the calculation of the direct, indirect and opportunity costs and therefore no duplication of costs in the model.
The costs which were used in this study were approximated using data from the Canadian Study of Health and Aging (CSHA) and Manitoba Study of Health and Aging (MSHA)1and Hollander et al. (2002)2. Unfortunately, these studies provided only Canadian cost estimates dating as far back as 1991. As a result (in the absence of any other information), the present as well as future costs were computed using inflation assumptions only. In general, such costs would depend on a number of other variables, none of which were known or considered in the present study. As a consequence of this, the reliable estimation of any errors which may be associated with the economic indicators is not possible.
Instead of a direct estimation of error, the assumptions used are evidence based and each step in the process has involved careful vetting by subject experts who have determined their validity. The overall findings of the Base Case has also been checked and approved for reasonableness by subject experts.
This amount is a cumulative number that is calculated by adding the annual economic impacts (in 2008 present value terms) for each year over the 30- year period, 2008 to 2038. The full Rising Tide Report provides the cumulative economic burden for each subsequent year over the 30-year simulation. The economic model outcomes are converted into 2008 present value terms using the historic yields on the Government of Canada bonds obtained from the Bank of Canada.
Cumulative economic impact is the total economic impact for a specified period of time such as a year or a decade. In order to arrive at the cumulative economic impact for a 30-year period the present value of economic impacts for each year in the 30-year period are added together.
The majority of costs incurred for dementia are a combination of caregiving costs both within and outside of the formal care delivery system. These costs are incurred when the individual with dementia is living at home and when he/she is living in a long term care setting. When the individual with dementia is living at home, costs include transportation, assistance with activities of daily living, supervision, home care, respite care, medications, physician services, hospital services, over-the-counter medications, etc. For an individual with dementia residing in a long term care setting costs include the costs of staff and administration in the long-term care home, costs of rehabilitation, medications, social activities, physicians, supervision, and lower productivity of informal caregivers.
Because demand and supply for long-term care beds are never in perfect balance, the model forecasts demand for long-term care beds based on projected dementia prevalence and severity. However, the availability of long-term care beds is constrained. The model uses historical growth trends to forecast the number of long-term care beds available over the next 30 years. (It forecasts that beds will increase from 280,000 in 2008 to 690,000 in 2038, which is then taken as an assumption.) Given this forecast, and the projected number of people with dementia (at a severity level that usually requires long-term care) the model forecasts an excess of demand over the supply of long-term care beds.
Even though this type of modeling work has been conducted to a limited extent in the literature, such a broad and multidisciplinary analysis involving many subject matter experts has not been done before in Canada. Other charities have not gone through the same process making the Alzheimer Society a leader in this area.
Statistics Canada has some data around years of disability caused by certain neurological diseases which we plan to collect.
The Base Case represents the status quo of the current and projected dynamics of dementia in Canada assuming no additional interventions (treatments, medications, policies, and programs) are introduced into the system. An intervention strategy represents a "what if" scenario in which a variable in the Base Model is changed and the resulting effect of this change is evaluated. "What if" scenarios demonstrate the potential impact of interventions.
The four scenarios were chosen by subject experts from a broad list of prioritized interventions. These particular interventions were chosen because it was anticipated that they would deliver significant benefits to people with dementia, their caregivers and the health system andbecause there was recent evidence-based data to support them.
For each scenario, subject matter experts identified the relevant data and worked closely with the RiskAnalytica team to customize the Life at Risk simulation model. The literature was used to design the approach and to quantify the degree of change that could be expected from each intervention. The model ran each of the four scenarios individually and compared the outcomes to the outcomes of the Base Case. The difference represents the estimated value proposition of the intervention in health and economic terms if any one intervention were to be implemented.
Each of the scenarios was based on evidence-based literature that was used to design the modeling approach for each scenario. The strongest and/or most recent piece of literature was chosen to do this. The scenarios were modeled independently as part of the scope of the project. In addition, no data were available to show the joint impact or cumulative impact of all four scenarios. The literature includes the following: Laurin et al.(2001)3, Brookmeyer et al.(2007)4, Graff et al. (2008)5, Mittleman et al. (2006)6, and Challis et al. (2002)7.
There are many possible interventions. Only four were chosen in this study because of limitations of time and resources. These four scenarios identified by subject matter experts were prioritized based on their potential and significant impact on the Base Case and the availability of evidence-based data to support their estimated impacts. There are many other interventions that could be used alone, or in combination, to impact the trajectory of dementia in Canada in the future. The Alzheimer Society may decide to run other "what if" scenarios in the future.
Each scenario evaluated was a hypothetical scenario; therefore the cost of implementing the intervention is unknown and was not included in the study. Therefore the savings for each scenario do not include the cost of implementation. The net benefit, showing change in economic impact less the cost of implementing the interventions would be the next step in determining the value of the intervention.
The "what if" scenarios were run to demonstrate how the Base Case could be modified by the implementation of a single intervention. These particular interventions are not intended to be recommendations but to demonstrate how the Base Case is sensitive to potential interventions. Any of these interventions, or any other intervention, can be implemented alone or in combination with other interventions. If warranted, the Life at Risk® platform could be used to determine the impacts of additional interventions alone or in combination with each other.
Given what we had seen from other countries, such as the US and the UK, combined with our own aging population and chronic disease management, we weren't surprised to see the alarming increases in the number of people expected to develop Alzheimer's disease or a related dementia over the next 30 years. That said, Rising Tide has provided the Alzheimer Society, and everyone else concerned with dementia in Canada, with a reliable set of data that has reinforced the need to act now.
The recommendations at the end of the Rising Tide report are meant to encourage thought and discussion. It is hoped that these recommendations will precipitate meetings and discussions with policy makers around the country and be a starting point for planning and implementing new initiatives.
The Society would like the general public to become more aware of the trajectory of dementia in Canada, and to support initiatives at many levels that begin to address the concerns raised in the report.
We also feel that Rising Tide will help to reduce the stigma associated with dementia. By the sheer number of people affected, we hope to break the isolation and allow people to seek diagnosis early.
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.
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.
1. Hux, M.J., O’Brien, B.J, Iskedjian, M., Goeree, R., Gagnon, M., and Gauthier, S. (1998). Relation between severity of Alzheimer’s disease and costs of caring. Canadian Medical Association Journal, 159, 5, 457-465.
Shapiro, E. and Tate, R.B. (1997). The use and costs of community care services by elders with unimpaired cognitive function, with cognitive impairment/no dementia and with dementia. Canadian Journal on Aging, 16, 4, 665-681.
2. Hollander, M., Chappell, N., Havens, B., McVilliam, C., and Miller, J.A. (2002).Sub study 5, Study of the costs and outcomes of home care and residential long term care services. A report prepared for the Health Transition Fund, Health Canada.
3. Laurin, D., Verreault, R., Lindsay, J., MacPherson, K., and Rockwood, K. (2001). Physical activity and risk of cognitive impairment and dementia in elderly persons. Archives of Neurology, 58, 498 – 504.
4. Brookmeyer, R., Johnson, E., Ziegler-Graham, K., and Arrighi, H.M. (2007). Forecasting the global burden of Alzheimer's disease. Alzheimer's and Dementia, 3, 186-191.
5. Graff, M.J.L., Adang, E.M.M., Vernooij-Dassen, M.J.M., Dekker, J., Jönsson, L., Thijssen, M., Hoefnagels, W.H.L. and Olde Rikkert, MG.M. (2008). Community occupational therapy for older patients with dementia and their care givers: cost effectiveness study. British Medical Journal, Published online 2 Jan 2008: doi:10.1136/bmj.39408.481898.BE.
6. Mittleman, M.S., Haley, W.E., Clay, O.J., and Roth, D.L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer's disease. Neurology, 67, 1592 - 1599
7. Challis, D., von Abendorff, R., Brown, P., Chesterman, J. and Hughes, J. (2002). Care management, dementia care and specialist mental health services: an evaluation. International Journal of Geriatric Psychiatry, 17, 315-325.