Abstract Body

Background and purpose: Although people with dementia often prefer to live at home until the end of life, they often die in a nursing home. The aim our study was to obtain insight into circumstances that contribute to or hamper living at home until the end of life with advanced dementia.

Methods: Qualitative interviews were done with family caregivers, general practitioners (GPs) and case managers. The interviewees were involved in cases of persons with severe dementia that preferred to live at home until the end of life. We included both cases in which it was realized to remain at home and cases in which the person with dementia eventually moved to a nursing home.

Results: The interviews indicate that cases in which a person with dementia lived at home until the end of life are characterized by a committed family caregiver as well as the involvement of a case manager or a GP. The interviewees expressed that support from other family members or friends, neighbors, volunteers and respite care contribute to maintaining care at home. However, dropout of the primary family caregiver and a strong physical or mental decline of the person with dementia were mentioned as reasons for admission in a nursing home.

Conclusions: Available support of a family caregiver, of the broader social network and of professionals contributes to remaining at home until the end of life. When any of these three types of support are not available, remaining at home until death is complex to achieve.