Abstract
Approaches to palliative care that were originally developed for people with cancer are now being adopted for people with dementia, as a response to many reports of poor-quality care for people with dementia at the end of life. This study explored perceived barriers to the delivery of high-quality palliative care for people with dementia using semi-structured interviews. Recordings were transcribed verbatim and analysed using thematic analysis with an inductive approach and a coding strategy. To improve the trustworthiness of the analysis, independent reading and coding of the transcripts were undertaken, followed by discussions among the four researchers to reach agreement and consensus of the themes. Two group interviews (n = 7 and n = 6), 16 individual interviews and five interviews of pairs of professionals were conducted in 2011/2012 with participants from backgrounds in palliative care, dementia services, palliative care research and policy making. Four themes were identified as barriers to providing high-quality palliative care for people with dementia: (i) ambivalence towards the systematisation of palliative care; (ii) disconnection between services; (iii) different assumptions about training needs; and (iv) negotiation of risk. Understanding these barriers to providing high-quality palliative care for people with dementia could help in the development of a dementia-specific palliative care pathway.
Highlights
The number of people in need of palliative care is steadily growing as the world’s population grows and people live longer
Palliative care for the purposes of this study was defined using the World Health Organization’s (WHO) definition: Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the
If you could recommend anything in your country that works well for people with dementia who are dying, what would that be? If you can think of any area of care for people with dementia who are dying that needs to be improved the most, what would it be? If you can think of something you would not recommend to other countries in relation to palliative care for patients with dementia in your country, what would that be? How well do you think professionals collaborate with one another in palliative care for patients with dementia?
Summary
The number of people in need of palliative care is steadily growing as the world’s population grows and people live longer. Within this ageing population, the prevalence of age-related conditions such as dementia will rise. Palliative care for the purposes of this study was defined using the World Health Organization’s (WHO) definition: Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the
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