This publication provides evidence of the benefits and effectiveness of rehabilitative palliative care, and includes guidance and tools to support its implementation.
Download Hospice enabled dementia care: the first steps.
About this publication
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This is a guide to assist hospices consider their contribution as local players in the provision of care for people living with, and affected by, a diagnosis of dementia.
The majority of hospices do relatively little to reach out and support people with dementia, their families and carers. Some hospices are understandably anxious about the level of need and also about whether they are skilled sufficiently to respond. Many are concerned about the implications on resources, which are already increasingly strapped. Some have simply not really considered the opportunities to extend care to people with dementia in any serious way to date, or have not yet engaged their governing bodies in discussion about taking this agenda forward as a strategic priority.
The authors of this guidance believe the best way to proceed on the part of the hospices is to adopt a facilitative role, working in partnership with their local community and care providers, to ensure people affected by dementia have access to the necessary care and support wherever they live and whenever they need it. They have termed this ‘hospice enabled dementia care’.
While hospices may be unclear about what this would look like in practice, there is well developed knowledge within dementia care about what constitutes high quality care for people with this diagnosis, their families and carers.
Drawing on a description of hospice care fit for the future, this publication confirms hospices are well placed to adopt a role in providing hospice enabled dementia care.
Hospices must adopt key characteristics to provide effective end of life care to people affected by a diagnosis of dementia. These include:
a corporate commitment to engage with the agenda of dementia care
efforts to establish new partnerships
creativity in the provision of care and services to meet the specific needs of people with dementia
an evidence-based approach to care and the care environment
investment in training of staff and volunteers.
A checklist of questions in relation to each of these characteristics is included in the guidance along with a list of resources and useful references hospices may wish to access to guide their work locally to develop new services and partnerships.
Acknowledgements
Hospice UK would like to thank Hope for Home for funding the Dementia Project and for members of the steering group who gave generously of their time and provided ongoing support to the project.
Steering group
Dr Heather Richardson, Chair, (formerly Hospice UK National Clinical Lead) Joint Chief Executive, St Christopher’s Hospice
Dr Adrian Treloar, Trustee of Hope for Home and Consultant and Senior Lecturer in Old Age Psychiatry, Oxleas Trust
Thelma Harvey, Trustee of Hope for Home
Linda McEnhill, Family Support Services, The Prince and Princess of Wales Hospice, Glasgow and member of the Hospice UK Care Strategy and Support Team
Dr Karen Harrsion-Dening, Director of Admiral Nursing, Dementia UK
Siobhan Horton, Director of Clinical Services at St Luke’s (Cheshire) Hospice
Gemma Jolly, Information Officer at the Alzheimer’s Society
Project leads
Marie Cooper, Practice Development Lead at Hospice UK
Dr Jacqueline Crowther, Dementia Care Expert, University of Liverpool and End of Life Partnership Cheshire
