UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey.
BMJ Support Palliat Care
; 8(4): 424-427, 2018 Dec.
Article
in En
| MEDLINE
| ID: mdl-27742606
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'.Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Palliative Care
/
Terminal Care
/
Dementia
/
Hospice and Palliative Care Nursing
Type of study:
Evaluation_studies
/
Prognostic_studies
Limits:
Humans
Country/Region as subject:
Europa
Language:
En
Journal:
BMJ Support Palliat Care
Year:
2018
Document type:
Article
Affiliation country:
United kingdom