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UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey

Amador, S; Goodman, C; Robinson, L; Sampson, EL; SEED Research Team, .; (2018) UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey. BMJ Supportive & Palliative Care , 8 (4) pp. 424-427. 10.1136/bmjspcare-2016-001138. Green open access

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Abstract

BACKGROUND: People living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care. METHODS: An online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics. RESULTS: 15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision. CONCLUSIONS: Recent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, 'Hospice-enabled Dementia Care'.

Type: Article
Title: UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/bmjspcare-2016-001138
Publisher version: http://dx.doi.org/10.1136/bmjspcare-2016-001138
Language: English
Keywords: Dementia, Health Services, Sustainability
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/1522533
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