Transitions to long-term care for people living with dementia: social death and social (dis) connections

Abstract

Background/objectives: Dementia is the most common cause for long-term care placement for people over the age of 65 years. The decision and the transition are often very difficult for families and the type and timing of effective support not well understood. In this exploratory study, we aimed to gain a better understanding of the experience of this transition to a long-term care setting and its impact on social connections. Methods: We conducted virtual in-depth interviews with a sample of spouses (N = 5) who had identified their partner’s move to a nursing home as particularly distressing. Interview data were analyzed using thematic analysis. Results: We identified that the transition process involved a particular disruption for dyads’ social health, although there was rarely a consideration in planning or support provision. For the person living with dementia, the unacknowledged loss of their social world reinforced their social death. Their grieving partner was explicitly and implicitly encouraged to recover a new social world as a means of healing from the loss. Conclusions: Our findings reinforce the need for evidence-informed support during the transition to long-term care for someone living with dementia and their partner.