Research on the perspectives of people affected by dementia with Lewy bodies: a scoping review.

Background: Dementia with Lewy bodies (DLB) is associated with specific challenges, including heterogeneity in clinical presentation and a less favourable prognosis relative to other dementia subtypes. These challenges necessitate person-centred care informed by the perspectives of those affected by DLB. This scoping review aimed to map the extent, type, and nature of research focusing on the perspectives of individuals with DLB and their care partners.

Methods and results: We searched six databases and two grey literature sources to identify all types of work providing information on the perspectives of individuals with DLB and/or their care partners. Two reviewers independently applied study selection criteria. Data from eligible articles were extracted, charted, and summarised using descriptive numerical analysis and basic qualitative content analysis. The review included 140 sources, of which 89.3% were research articles. Excluding non-structured reflections and commentary articles (n = 4), 68.4% of sources were quantitative and 65.4% were cross-sectional. The most common method of collecting perspective data was standardised measures assessing multidimensional concepts, such as caregiver burden. In total, 13 topics were identified, with 'emotional and psychological well-being' (n = 64) being the most widely investigated. There was a significant gap before the next most common topic: 'perspectives related to the symptom and illness experience' (n = 34).

Conclusion: While a range of methods was identified in this review, the evidence base is characterised by a predominance of standardised measures, with comparatively less use of qualitative approaches or non-standardised tools incorporating bespoke questions tailored to the study population. There was a disproportionate focus on specific topics, leading to research gaps. We recommend exploring novel methods to systematically capture perspectives in DLB cohorts, particularly on topics of highest priority to those affected.