Background: Dementia is recognised as one of the greatest global public health challenges. A central tenet of national health and social care policy is to ensure that services support people in achieving their personal well-being and outcomes, defined as the things important to people in their lives, also people with dementia. The aim of this study is to explore what matters to nursing home residents with dementia based on their perceptions of nursing homes as home.
Methods: There were conducted 35 interviews with people with dementia in nursing homes. We conducted the in-depth unstructured qualitative interviews. Thematic analysis was applied to analyse the data.
Results: The analysis resulted in one over-arching theme "tension between the experiences of a nursing home being a home and an institution" and five themes; "myself and my relationships with fellow residents", "creation of individualised living spaces", "single rooms with personal decor that enhances a sense of connectedness", "transition between the old home and the new home" and "significant activities providing meaning". The participants stated that the transition to the supported, structured living environment in nursing homes to be a clear need based on immediate, serious safety concerns. They went from being masters of their own lives to adhering to nursing home routines. Fellow residents could be both resources and burdens, creating feelings of security and insecurity. A home-like environment was created by allowing the participants to bring their important personal belongings into private spaces. The participants said they needed to be able to decorate their rooms to their own specifications. They wanted involvement in meaningful activities.
Conclusions: The findings showed that 'home' was an emotive word that awakened many associations. The participants reported mixed feelings and stated that they could thrive even if they missed their old homes. What mattered was that the participants felt safe, had single rooms where they could retire from the community, their own belongings and did activities. The participants wanted greater possibilities for meaningful relations. They appreciate that nursing home were similar to their previous homes. They desired opportunities to continue some activities they did in their former home.
Keywords: Dementia; Nursing home; Patient and public involvement; Thematic analysis.