Family Caregiver Perspectives on Suffering of Persons With Severe Dementia: A Qualitative Study

Dementia involves suffering. Assessing the experience of suffering among persons with severe dementia is instrumental to delivering quality end-of-life care to them and their caregivers.

We aimed to assess dimensions of suffering from the perspective of family caregivers and the resulting impact on their decisions for the care of persons with severe dementia.

Between July 2018 and February 2019, we conducted qualitative in-depth interviews with 27 family caregivers of community-dwelling persons with severe dementia with Functional Assessment Staging Test staging 7. We asked caregivers if they perceived persons with severe dementia to be suffering and explored reasons for their perceptions. We analyzed data using principles of reflexive thematic analysis.

We conceptualized five dimensions of suffering among persons with severe dementia from the perspective of their caregivers: 1) untreated physical or behavioral symptoms, 2) emotional pain, 3) loss of agency, 4) loss of engagement with society, and 5) loss of personhood. Suffering among persons with severe dementia influences their caregivers' expression of a wish for their death and caregivers' decision regarding the use of life-prolonging interventions for them.

Findings suggest that suffering among persons with severe dementia can occur independent of physical symptoms and requires provision of person-centered care. The study adds to the understanding of end-of-life care in persons with severe dementia and their caregivers.