How much is dementia care worth?

Abstract

On Sept 21, 2010, coinciding with World Alzheimer's Day, Alzheimer's Disease International (ADI) released a report on the global economic burden of dementia. The analysis puts the current annual global cost of caring for patients with dementia at over US$600 billion; if all microeconomic and macroeconomic factors remain unchanged, that cost is predicted to increase by 85% by 2030 and to become one of the biggest economic strains for health-care systems and communities worldwide.The report provides global estimates of medical and social service costs generated by patients with dementia, and imputed costs of the informal care provided by unpaid caregivers; cost estimates for many low-income countries also had to be based on imputations, as data were scarce, especially from Africa and eastern Europe. To put these colossal figures in context, the report highlights that the total costs of dementia care are roughly equivalent to 1% of the world's gross domestic product (GDP), ranging from about 0·1% in low-income countries to 1·3% in high-income regions; however, these comparisons might be misleading, as unpaid imputed costs of informal services are not considered when calculating the GDP of a country. Nevertheless, the true burden of disease is likely to be larger than the conservative estimates in this report, as they reflect the care that patients are currently receiving which, in many cases, might not be adequate; they are also based on prevalence calculations that might underestimate the number of cases, because dementia is under-diagnosed.About 70% of the estimated costs are incurred by patients in western Europe and North America, reflecting the meagre provision of formal care in poor regions, and particularly the lack of social care: direct costs of social care are about 120 times higher in high-income countries than in low-income countries. A worldwide survey commissioned for the report found that the mean proportion of patients with dementia living at home is 66% (95% CI 64–68%) in high-income countries and reaches 94% (92–95%) in low-income and middle-income countries. In high-income settings, institutional care is common—especially at late stages of disease—and accounts for a major part of the economic burden, but that burden falls disproportionately on families in poorer societies. These findings reinforce those of the 10/66 Dementia Research Group, which concluded that, among all chronic diseases, dementia is the leading contributor to care needs in the elderly populations of Latin America, China, and India.A big chunk of all costs (more than 40% globally) is attributed to informal care. It is therefore worrisome that, while the cost of formal care in high-income countries continues to escalate to unsustainable levels, the availability of informal support is predicted to decline in all regions. Thus, a realistic approach to tackle the problem must consider policies that would increase the willingness of caregivers (most often women) to provide these services. Tax relief for caregivers and availability of services for respite care could support this approach. Trying to counteract the trends in formal and informal care, several European countries are working on national dementia strategies and implementing legislation to improve caregivers' conditions. Similar plans adapted to specific local needs in other regions could release some of the economic pressure that dementia care imposes on families and health-care providers. Dementia prevalence in low-income and middle-income countries is predicted to outpace that of high-income countries, where it is now 5–7% among those aged 60 years and over. Given the likely shift from informal care to expensive medical and social care in low-income and middle-income countries, the costs might increase even beyond those based on these prevalence forecasts. Although there is general agreement that smart solutions are needed to prepare societies for the challenges posed by their ageing populations, dementia research is still grossly underfunded; for instance, in the UK, whereas the costs of dementia care are estimated to surpass those for heart disease and cancer combined, public and private funding for dementia research is still one twelfth of that for cancer research.One day after the release of the ADI report, the Making Investments Now for Dementia (MIND) Act, a bold initiative endorsed by the American Academy of Neurology, was referred to the US House of Representatives. If approved by Congress, the bill will authorise the issue of “US Alzheimer bonds”, whose proceeds would be dedicated exclusively to extra funding for dementia research. The initiative demonstrates that there is scope for creative solutions, even if the political commitment to support and prioritise them remains to be seen. On Sept 21, 2010, coinciding with World Alzheimer's Day, Alzheimer's Disease International (ADI) released a report on the global economic burden of dementia. The analysis puts the current annual global cost of caring for patients with dementia at over US$600 billion; if all microeconomic and macroeconomic factors remain unchanged, that cost is predicted to increase by 85% by 2030 and to become one of the biggest economic strains for health-care systems and communities worldwide. The report provides global estimates of medical and social service costs generated by patients with dementia, and imputed costs of the informal care provided by unpaid caregivers; cost estimates for many low-income countries also had to be based on imputations, as data were scarce, especially from Africa and eastern Europe. To put these colossal figures in context, the report highlights that the total costs of dementia care are roughly equivalent to 1% of the world's gross domestic product (GDP), ranging from about 0·1% in low-income countries to 1·3% in high-income regions; however, these comparisons might be misleading, as unpaid imputed costs of informal services are not considered when calculating the GDP of a country. Nevertheless, the true burden of disease is likely to be larger than the conservative estimates in this report, as they reflect the care that patients are currently receiving which, in many cases, might not be adequate; they are also based on prevalence calculations that might underestimate the number of cases, because dementia is under-diagnosed. About 70% of the estimated costs are incurred by patients in western Europe and North America, reflecting the meagre provision of formal care in poor regions, and particularly the lack of social care: direct costs of social care are about 120 times higher in high-income countries than in low-income countries. A worldwide survey commissioned for the report found that the mean proportion of patients with dementia living at home is 66% (95% CI 64–68%) in high-income countries and reaches 94% (92–95%) in low-income and middle-income countries. In high-income settings, institutional care is common—especially at late stages of disease—and accounts for a major part of the economic burden, but that burden falls disproportionately on families in poorer societies. These findings reinforce those of the 10/66 Dementia Research Group, which concluded that, among all chronic diseases, dementia is the leading contributor to care needs in the elderly populations of Latin America, China, and India. A big chunk of all costs (more than 40% globally) is attributed to informal care. It is therefore worrisome that, while the cost of formal care in high-income countries continues to escalate to unsustainable levels, the availability of informal support is predicted to decline in all regions. Thus, a realistic approach to tackle the problem must consider policies that would increase the willingness of caregivers (most often women) to provide these services. Tax relief for caregivers and availability of services for respite care could support this approach. Trying to counteract the trends in formal and informal care, several European countries are working on national dementia strategies and implementing legislation to improve caregivers' conditions. Similar plans adapted to specific local needs in other regions could release some of the economic pressure that dementia care imposes on families and health-care providers. Dementia prevalence in low-income and middle-income countries is predicted to outpace that of high-income countries, where it is now 5–7% among those aged 60 years and over. Given the likely shift from informal care to expensive medical and social care in low-income and middle-income countries, the costs might increase even beyond those based on these prevalence forecasts. Although there is general agreement that smart solutions are needed to prepare societies for the challenges posed by their ageing populations, dementia research is still grossly underfunded; for instance, in the UK, whereas the costs of dementia care are estimated to surpass those for heart disease and cancer combined, public and private funding for dementia research is still one twelfth of that for cancer research. One day after the release of the ADI report, the Making Investments Now for Dementia (MIND) Act, a bold initiative endorsed by the American Academy of Neurology, was referred to the US House of Representatives. If approved by Congress, the bill will authorise the issue of “US Alzheimer bonds”, whose proceeds would be dedicated exclusively to extra funding for dementia research. The initiative demonstrates that there is scope for creative solutions, even if the political commitment to support and prioritise them remains to be seen.