Living with dementia with Lewy bodies: an interpretative phenomenological analysis

OBJECTIVE: To explore the subjective experience of living with dementia with Lewy bodies (DLB). DESIGN: A qualitative study of in-depth interviews using interpretative phenomenological analysis. SETTING: A memory clinic in Malmö, southern Sweden. PARTICIPANTS: A purposive sample of five male participants with DLB between the ages of 78 and 88 years and disease duration of 1.5–7 years. RESULTS: Three themes were identified in relation to the participants’ experiences of living with DLB: (1) disease impact, in terms of symptom experience and restricted participation and activities; (2) self-perception and coping strategies; (3) importance of others, such as healthcare, family and friends. CONCLUSIONS: This study provides a broad insight into the first-hand experience of living with DLB and how it compares with other dementia types. Findings highlight factors characterising the disease experience and well-being, and how persons with DLB address challenges arising secondary to disease. These findings are important for both research and clinical practice, demonstrating the feasibility of direct involvement of DLB persons in identifying important aspects of care, which include improved healthcare services.