Continuity, change and ‘living well’ for older people with dementia: longitudinal qualitative findings from the IDEAL cohort study

‘Living well’ is an important concept across national dementia strategies, where qualitative research has contributed to understandings of living well for people with dementia. Longitudinal, qualitative approaches are fewer but can explore potential changes in accounts of living well, psychological coping and adaptation to dementia, and if or how people with dementia maintain continuity in their lives. The aim of this longitudinal qualitative study was to gauge what is important for ‘living well’ with mild-to-moderate dementia and whether this changes over time in a group of older people with mild-to-moderate dementia living at home. Semi-structured, qualitative interviews with 20 people with dementia from the IDEAL cohort study were conducted in 2017 and again one year later and analysed using longitudinal thematic analyses. The overarching narrative was largely that of continuity and adaptation, with incremental not disruptive change. Continuing participation and meaningful occupation were important to maintain living well over time, where individuals pursued new as well as previous interests. As a key psychological coping strategy to support continuity in their lives, individuals emphasised their capabilities to maintain activities in spite of dementia, compartmentalising specific areas which had become more challenging. Maintaining social networks and accommodating changes in social relationships were also central to living well over time including managing the psychological impacts of changes in spousal relationships. People in the earlier stages of dementia emphasise continuity and their capabilities, reporting change over time only in certain aspects of their lives. However, small, incremental changes in their social relationships and opportunities for meaningful occupation may still afford key areas for supporting capability to ‘live well’.