Dementia Project

NCPC's dementia project started in at the beginning of 2007 and is now well underway. The project builds on NCPC's early dementia work which highlighted the palliative care needs for people with dementia and presented current findings. This led to the publication of Exploring Palliative Care for People with Dementia followed by two highly successful workshops in October 2006 and January 2007.

In recognition of this early work, NCPC has been awarded funding by the Lloyds TSB Foundation for a project to promote increased and better quality palliative care for people living with dementia. Alison Blight has been appointed to manage the project within NCPC's Policy Unit.

NCPC have forged a close working relationship with 'for dementia' during this project. Karen Harrison, Consultant Admiral Nurse, has been seconded to work alongside Alison Blight to provide the project with complementary skills in management and clinical expertise.

NCPC's Older People Policy Group has overall responsibility for the dementia project and has approved the formation of a Dementia Working Group (DWG) to steer direction of the work. The DWG's first task was to approve terms of reference for the project. A wider reference group will ensure access to specialised advice. The project will be highly collaborative; NCPC will work closely with other national bodies who have knowledge in the area.

The Project's Objectives

• map current provision of palliative care services for people with dementia
• highlight gaps in provision within different care settings
• understand user and carers’ needs of palliative care services
• identify and share notable practice
• develop practical guidance to promote palliative care for people with dementia.

Progress with Dementia

Progress with Dementia was published in August 2007 and reports on the latest developments in the two year project by providing a summary of the key issues in palliative care with dementia and outlining some of the early findings and emerging themes. For further details including how to get a copy, please click here.

What Next

In the next stage of the project, NCPC has developed an approach to gather the views of people with dementia and their family carers about their needs of palliative and end of life care services. This includes:

• an NCPC questionnaire to be circulated to the membership of 'for dementia'
• NCPC facilitation of a number of workshops for carers
• using NCPC's format, facilitation by Admiral Nurses of groups of users and carers
• an online survey via NCPC's website

This work is a crucial part of the NCPC project and underpins its development. In a rolling programme of work, findings will be reported in the publication 'Creative Partnerships - Improving Quality of Life at the End of Life for People with Dementia' which will be launched at the national event Palliative Care and Dementia - Moving Forward in Partnership on 23rd January 2008.

Examples of Good Practice

NCPC has received examples of local practice in palliative and end of life care services for people with dementia and we are in the process of evaluating and publicising these - it is a key part of the project. If you are involved with a local project or service we would like to hear more about it. Please click here to download the template here and return to Alison Blight.

		Members of the Dementia Working Group
		Sharon Blackburn, Executive Director – Older People, Heart of England Housing and Care Ltd
		Mary Casey, Joint Professional Advisor Palliative Care, Healthcare Commission/CSCI
		Rachael Dutton, Research Manager, Dementia Voice and Housing 21
		Clive Evers, Director of Information and Education, Alzheimer’s Society
		Barbara Stephens, Chief Executive, For Dementia
		Dr Victor Pace, Consultant in Palliative Medicine, St Christopher’s Hospice
		Lucy Sutton, National Policy Lead, NCPC
		Alison Blight, Dementia Services Project Manager, NCPC

Presentation at the Alzheimer's Society Workshop on 15th September 07

Please click here to download Alison Blight's presentation.

Presentation at the Help the Hospice Conference on 3rd October 07

Please click here to download the presentation by Lucy Sutton and Clive Evers.

Presentation at the Primary Care Conference Birmingham on 22nd May 08

Please click here to download the presentation and here for the reference and reading list by Alison Blight and Karen Harrison.

See Also: Dementia Survey