Daily Life Experiences of People with Dementia with Lewy Bodies: A Qualitative Study

Dementia with Lewy bodies (DLB) is the second most common cause of dementia and is associated with unique difficulties due to its characteristic symptoms. This study aimed to identify daily life changes experienced by people with DLB due to characteristic symptoms other than visual hallucinations. Semi-structured interviews and content analyses were conducted on 13 people with DLB and their 17 family members. Qualitative content analysis identified three categories of difficulties experienced by people with DLB in daily life: body discomfort, obstacles in daily life, and psychological pain. Participants experienced not only physical changes due to symptoms such as cognitive fluctuations, parkinsonism, and rapid eye movement sleep behavior disorder but also psychological pain related to daily life difficulties. This suggests the need for care that appreciates the unique experiences of people with DLB and includes psychological care to develop appropriate individual coping strategies, rather than focusing solely on alleviating physical symptoms.