The personal economic burden of dementia in Europe

Dementia is a syndrome characterized by progressive cognitive and functional impairment, most commonly caused by Alzheimer's disease and other neurodegenerative and cerebrovascular disorders. Costs of care increase dramatically with progressing disease severity, and increasing dementia prevalence due to ageing populations is raising concerns about the sustainability of future costs of dementia care. A new study shows that social welfare systems in Europe cover most of the direct costs of dementia, however they do not protect families and households against the burden of informal care. Meier and colleagues¹ set out to calculate the economic costs of dementia in 11 European countries, by combining microdata from a population-based survey with estimates of dementia prevalence. Data for Austria, Belgium, Czechia, Denmark, Estonia, France, Germany, Italy, Slovenia, Spain, and Sweden was obtained from six waves of the Survey of Health, Ageing, and Retirement in Europe (SHARE). The survey captured out-of-pocket expenditures for health and social care as well as unpaid informal care. Costs attributable to dementia were estimated using linear regression, controlling for comorbidities and demographic factors. Finally, costs were combined with prevalence estimates to calculate the annual cost of dementia by country.

The study estimates that the mean hours of informal care provided to patients with dementia ranges between from 0.9 to 5.0 hours per day, and that the costs of informal care constitute between 50% and 90% of total costs for dementia. In contrast, out-of-pocket expenses make up <5% of total costs in most countries and were not higher in persons with dementia compared to controls. The estimated costs of dementia ranged from 2687 EUR to 15,468 EUR per individual, and in total from 162.9 million EUR in Estonia to 32,606.9 million EUR in Germany.

The survey design ensures a consistent methodology across countries, however also has some limitations. There is a risk of undersampling persons with severe dementia, although care was taken in this study to balance the dataset to counter this effect. As the survey did not measure costs for dementia care beyond out-of-pocket expenditures, total costs (including costs paid by government or insurance, such as long-term care) were estimated by assuming that the proportion of total spending to out-of-pocket spending is the same for persons with dementia as the national average in each country - this may result in underestimation of the total costs of dementia care.

There have a been few studies of dementia costs in Europe that have utilized a consistent methodology of data collection across countries, allowing direct comparison of dementia care costs countries in representative patient populations. In GERAS² and GERAS II,³ informal care as share of total care costs amounted to 54% in France, 60% in Spain, 64% in Germany, 65% in the UK and 80% in Italy. The average hours of informal care per day ranged from 3.0 in France to 8.2 in Italy. The ICTUS study⁴ enrolled 1381 subjects from 11 European countries. Estimates of the daily informal care ranged from 1 h in Denmark to 6 h in Italy, and informal care as share of total costs was 37% in Western Europe, 47% in Northern Europe and 78% in Southern Europe. In the Right Time-Place study,⁵ dementia care costs were estimated just before and after nursing home placement in eight European countries. Prior to institutionalization, informal care costs as share of total costs ranged from 28.4% in the Netherlands to 74.6% in Estonia. Thus the balance between formal (institutional) and informal care varies in Europe, with countries in the north/west having greater availability of institutional care, and southern/eastern countries having a higher utilization of informal caregivers.⁶

The high reliance on informal care in many countries highlights the importance of ensuring caregivers receive sufficient support, as caregiver exhaustion increases the probability of institutionalization leading to further cost increases. Financial support to informal caregivers of persons with dementia is provided in some countries, however such policies are highly variable and underdeveloped, for example in comparison with support for parents caring for children with disabilities.⁷ Further research is warranted into the efficacy and cost-effectiveness of caregiver support programs, in response to the epidemic of Alzheimer's disease and other dementia disorders.

In a recent report by the WHO, the costs of caring for the estimated 14.1 million people living with dementia in Europe amounted to US$ 439 billion (EUR 392 billion), or US$ 31,144 (EUR 27,815) per person with dementia in 2019.⁸ This is close to the mean GDP per capita in Europe (EUR 31,3331). Dementia prevalence is projected to increase substantially in coming decades driven by improvements in population life expectancy. Rising costs of dementia care as well as shortages of skilled care staff will pose a challenge for European societies, and accurately projecting resource utilization and costs of dementia care is important for policy development.

Declaration of interests

Consulting fees from H. Lundbeck and travel support from Bioarctic AB. Stock ownership in H. Lundbeck.