There are few studies concerning adult children of persons with dementia, and generally their situation is a neglected area in the research field. The objective of the present study is to explore how adult children with a parent with dementia experience the development of their parent’s disease, and it has a specific focus on their emotions, coping strategies, and need for support. The study also focuses on the outcome of group meetings, where adult children can share about their experiences and emotions toward having a parent with dementia.
The primary empirical research is semi-structured interviews with five adult children between the ages of 23 and 32 years, where four of the parents have early onset dementia; both Alzheimer and Frontotemporal. This research was analyzed using the inductive content analysis, and participating observation has been used as a method for analyzing the outcome of group meetings. Based on the informants’ stories the emerging categories were divided into themes that demonstrated the impact dementia had on the adult children’s lives and their different ways of coping before and after the diagnosis. Their coping methods include problem-focused and emotion-focused coping. The adult children experienced great responsibility during the development of their parents’ dementia as they offer practical and emotional support to the primary care giver and the parent with dementia. The adult children emphasized the need for personal assistance because they felt neglected as they experienced lack of support by health and social services. Some of the adult children had difficulties managing all of the responsibilities and had to slow down their own daily life with social activities and study.
The conclusion of the study strengthens the notion that the adult children have a need for person-centered care. In addition, group meetings and contact with other young people in the same stage of life has a positive impact for some, and a general need for more available services and an access to specific information about the diagnosis can help to provide a better understanding of how to deal with their parent’s disease.