Unterstützungsmaßnahmen für pflegende Angehörige von Menschen mit Demenzerkrankung. Evaluation bestehender Entlastungsangebote und deren konzeptionelle Weiterentwicklung

Currently there are more than 1.4 million people with dementia living in Germany. Demographic change and the limited medical options for therapy suggest a continuous increase in the number of dementia patients . The vast majority of people with dementia are cared for by family members at home who typically experience this demanding task as a heavy burden. To provide relief to home carers, the care system has developed a variety of support offers over the last decades. Yet, so far, these offers are rather infrequently made use of or only late in the care process . The present dissertation addresses the subject of support offers for family caregivers of persons with dementia. The first part (chapters 1–4) presents the theoretical foundations for the empirical study. Chapter 1 gives an overview of the social and medical aspects of dementia. Chapter 2 provides an account of the caregiving situation of people with dementia who are cared for at home. It focuses on characteristic features of home care as well as the burden on family caregivers and how they experience this situation. Chapter 3 introduces various support offers for people with dementia and their caregiving relatives and explains problems in how they make use of these offers or why they do not. Chapter 4 addresses selected conceptual approaches to dementia care, reviews research findings related to these approaches and discusses the viability of these approaches in the home-care setting. The second part of the dissertation (chapters 5 and 6) presents the empirical study. Chapter 5 describes the planning, methodology and analysis of the empirical study and its findings. The main objective was to gain insight into the factors that have a positive impact on the subjective burden of family caregivers. The following areas were investigated: personal characteristics of the home-care setting, use and assessment of support offers, reasons for making use or not making use of support offers, desired support offers, and knowledge and practical implementation of conceptual approaches to dementia care. The data was collected via a written survey of family members who provide care to relatives with dementia (n=136). The results show that the subjective burden in the investigated population was comparatively high. The analysis identified eight variables that displayed a significant correlation with a lower subjective burden among family caregivers. These variables were (1) less time spent on care per day, (2) greater autonomy of the person receiving care, (3) higher levels of caregiver competence, (4) making use of and (5) a positive rating of the support provided by the caregiver’s social environment, (6) making use of the support provided by the medical system, (7) easier acceptance of support, and (8) a less pronounced desire to receive support in the caregiver role. Only approximately 38% of the respondents had knowledge of the specific conceptual approaches to dementia care and about 60% often felt helpless and overwhelmed in dealing with the demented person and had difficulty understanding the behaviour of the person cared for. The areas most frequently turned to for support were the medical system and the caregiver’s social environment, whereas the sources least frequently turned to were counselling and training offers as well as offers provided by the Alzheimer Association and care services. Those that made use of support offers typically assessed them positively. An exception in this respect was support provided by the medical system. Although it was mentioned most frequently, it received the poorest evaluations. The main reason for making use of support offers was to avoid forms of inpatient care and maintain home care. The primary reasons mentioned for not making use of support offers were their high costs and the substantial organizational effort involved along with difficulties in finding offers suitable to individual needs. In almost all areas surveyed, the respondents expressed the wish to receive more support. This wish was particularly pronounced when it came to greater financial support, more dementia-specific support offers, and more free time. The research results are discussed in chapter 6. On the basis of these findings, the study identifies starting points for further conceptual development and presents a theoretical model (family doctor-counselling-model) to improve the structural conditions of care provision.