Exploring experiences of times without care and encounters in dementia: Findings from a living evidence map

Abstract

Background

People with dementia often spend most of the day without care, without encounters, and usually without activity. There is a knowledge gap on how people with dementia experience these periods of time.

Objective

We aimed to map studies on times without care and encounters of people with dementia, including Alzheimer's disease, in the institutional or domestic long-term care setting.

Methods

We performed a living evidence map with four search cycles (each May and November from 2023 to 2024) and considered PubMed, CINAHL, PsycInfo, Web of Science Core Collection, citation searching, and web searching. We included studies from the institutional or domestic long-term care setting, published as journal article with no restriction on the study design or publication year. Key characteristics and results were narratively summarized.

Results

We included 28 studies. Sixteen studies (57%) were conducted in the UK or Ireland. Twenty-one studies (75%) had a cohort design and 7 (25%) were qualitative studies. Twenty-five studies (89%) used observations as the primary data collection method. Between two and 78% of the observed time, people with dementia experienced times without care and encounters. Only eight studies (29%) explored their experiences during these times. However, none of the studies were specifically focused on that.

Conclusions

Our results demonstrate that the duration of times without care and encounters is highly variable. The findings highlight the need for primary studies exploring times without care and encounters from the perspectives of people with dementia.