Factors Affecting Well-Being and Quality of Life From the Perspective of People With Moderate-To-Severe Dementia: A Qualitative Evidence Synthesis.

Objectives: Dementia care should meet the mental, physical, and daily care needs of people who are less able to take care of themselves. Research has been undertaken to understand the subjective perspectives of well-being and quality of life in people with mild-to-moderate dementia, but there is less clarity about the desires and influences on well-being of people with moderate-to -severe dementia. We aimed to understand what is important for well-being or quality of life from the perspective of people with moderate-to-severe dementia. Methods: We searched published literature and conducted a systematic review and qualitative thematic synthesis. We included qualitative studies that presented views on and experiences of well-being or quality of life from the perspectives of people with moderate-to-severe dementia. Findings: We included five studies. All were conducted in residential care homes, and data collection was carried out using face-to-face semi-structured conversational interviews with people with moderate-to-severe dementia. Three themes were identified: how people felt about their lives in the care home, how they felt about the care home itself, and how they felt about themselves. The overarching aspect of these three themes was the ability and opportunity to experience positive associations with past and present personal identity. Conclusions: People with moderate-to-severe dementia can communicate their preferences and wishes and need support to spend their time in ways that support their quality of life. Opportunities for positive reminiscence, daily activities that can enhance moments of pleasure, and positive reinforcement of identity can help maintain well-being and quality of life. Care home staff and family members may benefit from education and training in these aspects of care.