Sarah Amador1, Claire Goodman2, Louise Robinson3, Elizabeth L Sampson1. 1. Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK. 2. Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK. 3. Newcastle University Institute for Ageing and Institute for Health and Society, Newcastle University, Newcastle upon Tyne, UK.
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'. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
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'. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Entities:
Keywords:
Dementia; Health Services; Sustainability
Authors: Jenny T van der Steen; Natashe Lemos Dekker; Marie-José H E Gijsberts; Laura H Vermeulen; Margje M Mahler; B Anne-Mei The Journal: BMC Palliat Care Date: 2017-04-28 Impact factor: 3.234
Authors: Elizabeth L Sampson; Bridget Candy; Sarah Davis; Anna Buylova Gola; Jane Harrington; Michael King; Nuriye Kupeli; Gerry Leavey; Kirsten Moore; Irwin Nazareth; Rumana Z Omar; Victoria Vickerstaff; Louise Jones Journal: Palliat Med Date: 2017-09-18 Impact factor: 4.762