Palliative care services for people with dementia: A synthesis of the          literature reporting the views and experiences of professionals and family          carers

Raymond, Mareeni; Warner, Alex; Davies, Nathan; Iliffe, Steve; Manthorpe, Jill; Ahmedzhai, Sam

doi:10.1177/1471301212450538

Cited by 34 publications

(38 citation statements)

References 23 publications

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“…There are few published studies of educational programmes for improving palliative care for people with dementia, and where educational impact has been measured, no positive effects were demonstrated [38]. There was weak evidence [50] that those caring for patients with dementia felt they needed more training on the subject of palliative care, death and dying, and that learners felt that education changed their attitudes [51].…”

Section: Discussionmentioning

confidence: 99%

“…Themes from this synthesis informed the design of a semi-structured interview schedule, together with themes from a review of the ‘grey literature’ (see below). Search strategies and findings of reviews on family carers’ perspectives of palliative care for people with dementia, and evaluations of professional education projects on palliative care for people with dementia, are reported elsewhere [38,39]. …”

Section: Introductionmentioning

confidence: 99%

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Modelling the landscape of palliative care for people with dementia: a European mixed methods study

et al. 2013

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BackgroundPalliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made.To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care.DiscussionA generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement.SummaryThe co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Modelling the landscape of palliative care for people with dementia: a European mixed methods study

et al. 2013

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“…The interview guide for the semi‐structured interviews (Box ) was developed from reviews of the literature (Raymond et al . ,b) in consensus‐seeking discussions across the research team (Davies et al . ).…”

Section: Methodsmentioning

confidence: 99%

Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals' experiences

Davies

Maio

Vedavanam

et al. 2013

Health Soc Care Community

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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.

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“…The case studies [24] and the education gap analysis [25] therefore supported the lack of palliative care education and knowledge of the late stage of dementia which is reported in several studies [434445464748]. The case studies [24] supported the literature, in that often needs of people with dementia and their families are not met [4749505152] care experiences were fragmented and the place of palliative care for people with dementia ranged from the family home, to hospital and care homes.…”

Section: Interpretation Of Findingsmentioning

confidence: 60%

Achieving Prudent Dementia Care (Palliare): An International Policy and Practice Imperative

Tolson¹,

Fleming²,

Hanson³

et al. 2016

International Journal of Integrated Care

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This paper examines the provision of integrated advanced dementia care within seven European countries and critically reviews the potential contribution of the Prudent Healthcare perspective as a starting point for reform. Progressive efforts to innovate, promote quality and integrate care are tempered with the reality of resource constraints. Some policy makers in Europe and North America have turned their attention to the principles of Prudent Healthcare as a potential mechanism to maximise benefits for patients within available resources. As dementia progresses, living well requires increasing levels of support and care, people living with advanced dementia have complex health and social care needs, are highly dependent on others but are not yet at the terminal end stage of the condition. People with advanced dementia can benefit from a dementia specific palliative approach to care (Palliare), that helps them to live the best life possible for the months and often years they live with advanced dementia. It is also highly desirable to align policy innovations with integrated palliative care practice models and the education of the dementia workforce to accelerate informed improvements in advanced dementia care. There may be some coherence, at least superficially between Prudent Healthcare and integrated palliative care models such as Palliare. It is argued that for successful implementation, both require practitioners to be equipped with knowledge and skills and be empowered to deliver high quality care often within impoverished care environments. Adoption of the prudent perspective will however require development of a repertoire of approaches to hear the voice or proxy voice of people living with advanced dementia and to commit to the development and implementation of new evidence for advanced dementia practice. Evidence informing this policy debate draws upon contemporary literature and policy and the findings from research activities undertaken by the Palliare project supported through the Erasmus+ K2 Strategic Partnerships funding programme.

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Palliative care services for people with dementia: A synthesis of the literature reporting the views and experiences of professionals and family carers

Cited by 34 publications

References 23 publications

Modelling the landscape of palliative care for people with dementia: a European mixed methods study

Modelling the landscape of palliative care for people with dementia: a European mixed methods study

Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals' experiences

Achieving Prudent Dementia Care (Palliare): An International Policy and Practice Imperative

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