Exploring the experiences of living with Lewy body dementia: An integrative review

Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers.

Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification.

Medline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020.

Twenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's 'Weight of Evidence' framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software.

Four themes were identified: living with an uncertain diagnosis and prognosis; fear of the now - worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life.

Delayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them.

This review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families.