What is important at the end of life for people with dementia? The views of people with dementia and their carers

Abstract: Approaching end of life is often a time of vulnerability; this is particularly so for people with dementia and their families where loss of capacity and the ability to communicate make assessment and shared decision-making difficult. Research has consistently shown that improvements in care and services are required to support better quality and more person-centred care for people with dementia towards and at end of life. However, the views of people with dementia about what factors contribute to high quality care at this time is a neglected area.
Aim: The aim of this study was to identify the aspects of end of life care for people with dementia that are most important to them and their carers.
Design: Q-methodology, a mixed method combining qualitative and quantitative techniques to study subjectivity, was used to identify the views of people with mild dementia, their family carers and bereaved carers on end-of-life care for people with dementia. Fifty-seven participants were included in the study.
Results: Four distinct views were identified: family involvement, living in the present, pragmatic expectations and autonomy and individuality. Some areas of consensus across all views included compassionate care, decisions being made by healthcare professionals and information availability when making decisions.
Conclusions: Our findings reveal several different views on what is important about end-of-life care for people with dementia; therefore, a ‘one-size-fits-all’ approach to care is unlikely to be most appropriate. Notwithstanding the differing viewpoints could provide a framework for service providers and commissioners for future care.