Research on the perspectives of people affected by dementia with Lewy bodies: a scoping review
Bibliographic record
Abstract
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.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.028 | 0.117 |
| Meta-epidemiology (narrow) | 0.002 | 0.002 |
| Meta-epidemiology (broad) | 0.005 | 0.004 |
| Bibliometrics | 0.026 | 0.026 |
| Science and technology studies | 0.002 | 0.003 |
| Scholarly communication | 0.009 | 0.009 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.005 | 0.003 |
| Insufficient payload (model declined to judge) | 0.004 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".