The perspectives of older people living with dementia regarding a possible move to a nursing home

Abstract

Background/Objectives Moving into a nursing home is often an unavoidable life event for older people living with dementia. It is associated with negative emotions and outcomes. Research capturing their perspectives is scarce. This study aims to identify how older people living with dementia perceive a potential life in a nursing home and to understand their (future) care wishes. Materials and methods This study is part of the European TRANS-SENIOR research network. The study followed a qualitative phenomenological methodology. Semi-structured interviews with 18 community-dwelling older people living with dementia were conducted between August 2018 and October 2019 (METCZ20180085). A stepwise interpretive phenomenological analysis was performed. Results The majority of community-dwelling older people feared the idea of potentially moving to a nursing home. The participants associated a possible move with negative perceptions and emotions. Additionally, this study emphasized the importance of knowledge of current and past experiences with care when identifying the participant’s wishes. They wanted to remain (a) individuals, who are (b) autonomous and have (c) social contacts if they would move to a nursing home. Discussion/Implications This study showed how past and current care experiences can educate/inform healthcare professionals on the future care wishes of older people living with dementia. The results indicated that listening to the wishes, and life stories of people living with dementia could be a way of identifying ‘a suitable time’ to suggest a move to a nursing home. This could improve the transitional care process and adjustment to living in a nursing home.