Suffering and loss in Lewy body dementia: Applying a palliative care lens to a longitudinal narrative study

Abstract

Abstract Objectives This study aims to explore the everyday experiences of people living with Lewy body dementia and their families, to deepen understanding of their care needs. Lewy body dementia is a neurodegenerative condition associated with shorter life-expectancy and poorer quality of life than other forms of dementia. Cognitive fluctuations, visual hallucinations, falls, and motor features of Parkinsonism gives rise to complex and debilitating symptoms. Other prominent features include behavioral and emotional problems, rapid eye movement sleep disorder, and autonomic dysfunction. Improving palliative care for people with dementia continues to be an international priority; however, little is known as to how a palliative care approach could support people living with Lewy body dementia and their families.

Methods Drawing on narrative theory of self and personhood, a qualitative, longitudinal narrative approach provided unique insights into 5 couples’ experiences of living with Lewy body dementia. Analysis was conducted using Murray’s levels of narrative analysis in health psychology to explore stories at the personal, interpersonal, positional, and societal level.

Results Participants with Lewy body dementia described losses associated with communication, continence, and energy leading to a progressive loss of independence. For their family caregivers a loss of companionship was particularly salient. These losses, compounded by a perceived lack of clinical support, resulted in suffering both for the person with Lewy body dementia, and for those close to them.

Significance of results There has been a societal and political shift to move beyond loss in dementia, to a focus on abilities and living well. However, acknowledging loss, while supporting symptom management is an important aspect of Lewy body dementia care. Providing person-centered, palliative supportive care throughout the disease trajectory could reduce suffering and enhance well-being.