Informal Caregivers of People with Dementia in Germany: Psychosocial Characteristics and Unmet Needs

Abstract

Background: Caregivers of people with dementia living at home (CPwDh) are likely to be affected by a range of health problems. However, CPwDh are often regarded as accompanying persons and receive less attention in research and care. Little is known about this population and their needs in Germany. However, better knowledge of CPwDH is needed to design effective interventions. Objective: The objective of this report is to describe the situation of CPwDh and highlight differences based on sex and living situation. Methods: This was a cross-sectional analysis of the psychosocial characteristics of participants in the GAIN trial, a cluster-randomized, controlled intervention trial investigating the effectiveness of a care management program. A total of n = 192 CPwDh were recruited in GP offices, memory clinics or through public campaigns in the German federal state of Mecklenburg-Western Pomerania. The inclusion criteria were an age of 18 years or above, being a CPwDh, written informed consent. In a comprehensive digital assessment, psychosocial variables, burden, and care needs were assessed. Results: Partners, women, and people living in the same household represented the majority of caregivers, and their mean number of needs was 8.7. Overall, participants indicated a mild to moderate burden. There are differences in burden based on sex and living situation, with caregivers living with people with dementia showing less burden and different psychosocial demographics. Conclusions: There is a need for interventions to reduce caregivers’ unmet needs in the CPwDh. Such interventions should consider differences in sex and living situation to better address individual caregiver needs.