Abstract
Background:
Dementia with Lewy bodies (DLB) is one of the most common degenerative dementias, and it is associated not only with cognitive symptoms, but motor, neuropsychiatric, sleep and autonomic symptoms. There is increasing emphasis on the involvement of patients and their representatives in dementia research, but little is known about the extent and nature of surveys and qualitative research methods capturing the views of those affected by DLB. The objective of the scoping review is to determine the extent and nature of published literature that uses surveys and qualitative methods to elicit the views of people diagnosed with DLB and their care partners.
Methods:
The electronic databases MEDLINE ALL, EMBASE, CINAHL Plus, PsycINFO and Web of Science will be searched for relevant publications (from inception onwards). Papers using qualitative and survey-based research methods to investigate the view of patients and caregivers affected by DLB on any aspect of their healthcare or research will be included. Google Scholar and The Networked Digital Library of Theses and Dissertations will be searched for additional literature. The search strategy for published peer-reviewed articles will be limited to qualitative and survey-based study designs. Reviews, scoping reviews, narrative reviews, research reports, grey literature and editorial, reflection or perspective articles written by a person with DLB or their caregiver will be considered. An established methodological framework will guide the scoping review process. Two reviewers will independently screen all citations, full-text reports and abstract data. Data analysis will involve descriptive numerical analysis and qualitative content analysis.
Expected Outcomes:
It is anticipated that the extent of qualitative and survey-based research in this context is limited in quantity. It is expected that work will predominantly focus on the importance of post-diagnostic support and general information and support needs with relatively little work around individual symptoms, drug therapies or trials.