Informal caregivers of older persons with dementia in eight European countries. Experiences, support, well-being and burden

Abstract: The overall aim was to investigate informal caregivers providing care for older persons with dementia (≥ 65 years of age) in eight European countries. Focus was on their experiences of formal care, access to support and factors that were associated with caregivers’ psychological well-being and burden. Caregivers’ experiences of formal care were investigated in a qualitative study with four focus groups interviews with 23 caregivers of older person with dementia living at home or in a nursing home in Sweden (Study I). The interviews were analysed with content analysis. The result of the caregivers’ experiences of formal care when caring for a person with dementia was captured in the theme ‘Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia’. Access, i.e. availability and utilization of support including providers of the support was a quantitative, cross-sectional study conducted in eight European countries (Study II). A mapping system was used to estimate availability, utilization, and professional providers of support to caregivers caring for a person with dementia. Data was collected for each country nationally. The findings showed that counselling, caregiver support, and education were highly available in six of the participating European countries but were rarely utilized. Countries with national guidelines for dementia care seemed to be more aware of the importance of professionals specialized in dementia. In Study III and IV, factors associated with caregiver well-being and burden was investigated, prospectively with 1223 caregivers, caring for an older person with dementia living at home. The caregivers were interviewed based on questionnaires, at baseline and follow-up after three months. Logistic regression analysis was performed of factors associated with caregivers’ psychological well-being and burden at baseline and 3 months later. Factors associated with presence of psychological well-being and burden and over time were the caregivers’ experience of caregiving, the quality of care and amount of caregiving for the person with dementia.This thesis emphasize that formal care needs to be proactive and deliver available care and support early in the course of the dementia disease. Mapping the health care and social service systems is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making. Professionals should be aware about what factors are associated with caregivers’ psychological well-being and burden to provide proper care and support and promote a healthy transition in the caregiving role and through the course of the dementia disease.