Formal and informal support of patients with dementia at home: A mixed methods study within the Actifcare project

Background: Formal care services are less often used in dementia care than in care for people without dementia. The Actifcare project, in which eight European countries participated, emphasized the point in time in the trajectory of dementia when formal care becomes more and more important for supporting caregivers at home. A mixed-method study conducted over 12 months aimed to improve the understanding of care needs and the influencing factors for using informal and formal support for care at home. This report focuses on the German sample of the cohort study. Methods: People with dementia with their informal caregivers from the German federal states of North Rhine-Westphalia, Saxony-Anhalt and Saxony were interviewed between January 2015 and July 2016. A set of validated questionnaires was used for the baseline interviews and two follow-ups. Additional guideline-based semi-structured interviews were conducted with a subgroup of informal caregivers at the last follow-up interview. The standardized questionnaires were analyzed using a descriptive approach, and the semi-structured interviews were subjected to qualitative content analysis. Similar to the data collection processes, the results of both analyses were synthesized using a data triangulation approach. Results: A total of 52 people with dementia and their informal caregivers participated in the standardized interviews. A subsample of 12 informal caregivers was included in the qualitative interviews. At baseline, 28 out of 51 informal caregivers cared for their relatives with dementia without additional informal support (T2: 22 of 41). The social network of approximately half of the informal caregivers included three to four relatives, who were ready to help if necessary. On average, 3.4 support services were used (T2: 3.6). During the study period, the interest in educational, informational and counselling services decreased (T0: 11 of 52 informal caregivers; T2: 5 of 41). Formal care was more often rejected by people with dementia than by informal caregivers. Sometimes, the available services were considered insufficient in terms of personal needs of formal support, which should be flexible, unbureaucratic and tailored to the needs of the individual patient's situation. It is important for people with dementia and their informal caregivers to be involved in the decision-making processes of caregiving. Since dementia is a progressive disease, early participation is a prerequisite for making shared decisions about healthcare services. Conclusion: People with dementia and their informal caregivers should be informed about formal care services and involved in decision-making processes as early as possible. To this purpose, account must be taken of the various informal social networks. This could improve the use of formal care services and the further development of these offers and thus prolong care at home.