[Costs of informal caregiving for people with cognitive impairment: A cost study based on the Digital Dementia Registry Bavaria (digiDEM Bayern)]

Abstract

Background: Informal care costs account for the largest share of the total costs of dementia. The informal care costs of dementia have been well researched in Germany, but the group of family caregivers of people with MCI ("mild cognitive impairment") has not been taken into account so far. The aim of this study is to evaluate the care time spent by family caregivers of people with cognitive impairment according to the severity of the disease and to estimate informal care costs.

Methods: The data is based on the multicenter, prospective registry study "Digital Dementia Regustry Bavaria - digiDEMBayern" (German title: "Digitales Demenzregister Bayern - digiDEM Bayern"). Information on informal care time was collected using the "Resource Utilization in Dementia Lite (RUD-Lite)" instrument. Informal care costs were calculated using the opportunity cost approach. Sensitivity analyses were used to determine a high and a low cost estimate and to compare them with each other. Severity-related differences were assessed using variance analyses.

Results: The survey results of 445 people with cognitive impairment and their informal caregivers were evaluated. The average care time to support activities of daily living significantly increased with greater severity (p = 0.005). The average cost of informal caregiving was between 15,057 and 30,994 EUR for people with mild cognitive impairment, between 19,785 and 38,747 EUR for people with mild dementia, and between 23,709 and 48,451 EUR for people with moderate dementia.

Discussion: Several earlier studies found an increase in the costs of informal caregiving with increasing cognitive decline in Germany. However, these studies differ in the methodologies used. There are various reasons why comparatively higher costs of informal care have been calculated in the present study.

Conclusion: It is likely that the annual costs of informal caregiving are in the range described, depending on the level of severity. The results indicate that people caring for family members with MCI bear a significant burden and that this leads to high social costs. The indirect costs of dementia increase the burden on society also from an economic perspective.

Keywords: Cost of illness; Dementia; Demenz; Informal care; Informelle Pflege; Krankheitskosten; Mild Cognitive Impairment; Mild cognitive impairment; Resource utilization; Ressourcennutzung.