Caring for people with dementia at end-of-life: The clinical decision-making process of healthcare professionals within community care

Smith, Cathryn 2025. Caring for people with dementia at end-of-life: The clinical decision-making process of healthcare professionals within community care. PhD Thesis, Cardiff University. Item availability restricted.

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Abstract

Dementia is recognised as a leading contributor to global ill health and with no known cure, individuals with dementia will inevitably require end-of-life care. The decision-making processes surrounding end-of-life care are complex, highly individualised, and continually evolving, and whilst widely established for life-limiting illnesses, evidence shows this is less likely to be the case for a person with dementia. There remains a notable gap in the literature addressing how healthcare professionals navigate end-of-life care decisions for people with dementia in the context of community care. Aim The study aimed to explore the factors informing healthcare professionals’ clinical decision-making when providing end-of-life care to patients with dementia in primary care. Methodology and methods This ethnographic study purposively sampled community healthcare professionals (n=21) from one University health board in Wales, covering three demographic areas. A multiple-methods approach was used that included non-participant observation, semi-structured interviews and the review of key documents. Data analysis was iterative, utilising reflexive thematic analysis. Findings The study findings indicated that healthcare professionals perceived end-of-life care decision-making for individuals with dementia as challenging. Three themes were developed; (1) collaboration, relationships and the end-of-life care process; (2) the impact of the environment, geographical location and health and social care services on care delivery; (3) missed opportunities. The study findings also revealed that while there were pockets of diligent care provision, inequitable access to services and wide disparities existed. An ecological theory was adopted to interpret the study findings in a social context, applying a whole system approach. Conclusion The study emphasises the complexity and importance of effective decision-making for this patient group within the community environment. There is a specific need for specialised dementia end-of-life care during the last year of life. Further research is urgently required to further understand this clinical area and enhance care at the end-of-life for people living with dementia.

Item Type:	Thesis (PhD)
Date Type:	Completion
Status:	Unpublished
Schools:	Schools > Healthcare Sciences
Date of First Compliant Deposit:	20 May 2026
Last Modified:	20 May 2026 15:10
URI:	https://orca.cardiff.ac.uk/id/eprint/187134

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