“Everything changes”—Everyday Life with dementia from the caregivers’ perspective

Abstract

Background: Most people with dementia live in private homes and are supported by their relatives. Current figures estimate that the number of people with dementia will continue to increase over the next years. In comparison to other groups of people that care for their relatives, those taking care of people with dementia face a substantially higher burden due to changes that are typically associated with dementia. Relatively little is known on how relatives of people with dementia manage their support arrangements, which strategies they follow and which structures are perceived as helpful or obstructive in their daily routine. Objective: The aim of this study was to provide insights into the structure of support arrangements from the perspective of the main caregiver. The results show in which areas of life the main caregivers experience the greatest cuts and which strategies they use to overcome these problems. Material and methods: In this context 14 in-depth interviews were carried out with relatives who were the main caregivers of people with dementia. The interviews were evaluated in a research group using the techniques of grounded theory. Results: All aspects of life were affected by the decision to take care of people with dementia. To what extent the caregivers are affected by these decisions subjectively differs from individual to individual. All interviewees reported that the biggest challenge was to find a balance between taking care of others and self-care; however, such a balance does not always succeed for the caregivers’ health and sustainability of support arrangements but nevertheless is of enormous importance. At the same time there is evidence of the circumstances under which caregivers make use of professional help and thus contribute to the sustainability of the support arrangements. Conclusion: The findings show that unsustainable support arrangements cannot only be seen as a lack of adaptability on the part of the caregivers to the progression of dementia. The realization of sustainable arrangements is multidimensional and multicausal.