Examining the lived experience of dementia with Lewy bodies through qualitative research: A systematic review

Dementia with Lewy bodies (DLB) is inadequately diagnosed and treated, which negatively influences patient outcomes.

This systematic review evaluated qualitative studies of lived experiences from DLB patient and caregiver perspectives to identify gaps and define future research directions.

The review included 27 studies. Most reported caregiver experiences (67%). Few focused solely on people with DLB.  Three themes emerged: (1) symptoms and impacts; (2) caregivers' care challenges; and (3) needs and priorities for education, support, and research. Gaps in qualitative literature included small DLB sample sizes, inconsistent diagnostic criteria, variably reported characteristics, merged data across dementia types and stages, and under-representation of informants and diverse groups.

This review provides the first qualitative evidence synthesis in DLB, highlighting profound impacts of DLB symptoms, but also gaps in understanding direct experiences. Additional qualitative work regarding the lived experience in DLB is needed to inform clinical management and therapeutic development.

Symptoms in dementia with Lewy bodies (DLB) vary greatly across individuals. Existing qualitative studies, though limited, show profound personal impact in DLB. Rigorous, systematic qualitative research in DLB symptom science is needed. Identifying what matters to people with DLB is essential for guiding treatment.