Monetary value of informal caregiving in dementia from a societal perspective

Dementia is a condition which results in a high cost of care, a significant proportion of which is the cost associated with informal care. In previous studies, informal caregiving has been challenging to assess due to difficulties in estimating the true time spent on caregiving work and how to value caregivers' time. The aim of this study was to compare the costs of dementia among patients living alone and among those living with a caregiver to show the monetary value of informal caregiving from a societal perspective.

Data from our four dementia trials using the same measures were combined, allowing the inclusion of 604 participants. Participants were followed up for 2 years or until death for their use of health and social services. Use of all services was retrieved from medical/social records. We also included the costs of lost productivity of those caregivers who were not retired.

The total mean cost of services and lost productivity was €22,068/person-year (pyrs). Participants living alone had a mean cost of €45,156/pyrs, whereas those living with a spouse had a mean cost of €16,416/pyrs (mean cost ratio 2.99, 95% confidence interval 2.64-3.39). Participants living alone and having <15 Mini-Mental State Examination points had higher costs than people with dementia in institutional care.

Detailed data of service use and characteristics of people with dementia showed that from a societal perspective, living alone is a very strong determinant of service use in dementia. Informal caregivers do invaluable work for society.