Dementia is a life-limiting condition, and a palliative care approach can improve both quality of life and quality of care for people living—and dying—with dementia. Research has consistently shown that, compared with other terminal conditions such as cancer, dementia is under-recognised and under-treated within palliative care systems. Considerable attention has been paid to this overall underrepresentation; however, further inequities exist within palliative dementia care research and practice itself. This position paper draws on an in-depth conversation with a person living alone with Alzheimer’s disease and vascular dementia, alongside a critical engagement with existing literature. Using lived experience as a starting point, we identify two untapped dimensions of palliative dementia care: (1) barriers in palliative care conversations when a person with dementia attends clinical appointments unaccompanied; and (2) intersectional disadvantage arising from dementia, living alone, and health and social care systems that overly rely on informal carers or supporters. These contribute to exclusionary research practices that marginalise people living with dementia without close care partners. While the involvement of carers and supporters in shared decision-making should be encouraged when they are present, high-quality palliative care and research must not depend on their presence and should be equally accessible to people living with dementia who attend services alone. We argue that addressing this neglected area requires the meaningful involvement of people with lived experience in shaping both research agendas and clinical practice.
Williamson et al. (Thu,) studied this question.