Supporting People with Dementia: From Diagnosis to the End of Life

20 July 2012

As a member of National Council for Palliative Care (NCPC) section on older people I went to the All Party Parliamentary Group (APPG) meeting on supporting people with dementia from diagnosis to the end of life on July 11th at the House of Commons.

The Chair of the All party group, Fabian Hamilton MP, welcomed everybody. He stressed the importance of social care and housing in end of life care. He said that the way we, as a society, care for the dying is a litmus paper of society. He welcomed the Prime Minister's challenge on Dementia and re-iterated that early diagnosis was essential. He introduced the National Council for Palliative Care on "Starting end of life care Conversations with people affected by Dementia".'Difficult Conversations' is a publication designed to help professionals and carers of people with dementia to open up conversations about end of life wishes, especially early on in the disease, and to provide support. More than 35 million people worldwide and over 800,000 people in the UK have dementia, but people with the disease often receive unequal access to palliative care  in part because of problems discussing end of life issues with someone once they have dementia.

The guidance, which has been supported by the Government¹s National End of Life Care Programme and developed following conversations with 50 patients,carers and former carers, provides practical advice to carers on a range of issues. It also provides a list of useful resources on issues such as advanced care planning and peer support for carers.

There was then a presentation by Sam Turner, NCPC, illustrating the importance of treating individuals, with Dementia in the acute hospital setting, and their next of kin with dignity, respect and humanity. Through the use of two case histories the speaker demonstrated that effective communication can improve the outcome for both the patient and the next of kin. She underlined the value of understanding, kindness and empathy.

There were then short presentations by Paul Burstow, Minister of State for Care Services, Professor Mike Richards, National Director for End of Life Care, Jeremy Hughes, Co-Chair, Dementia Friendly Communities Champion Group and Chief Executive Alzheimer's Society, Professor Mayur Lakhani, Royal College of General practitioners and NCPC as well as Hazel Blears, Member of the All party parliamentary Group on Dementia.

They reminded the audience that the goal in hospitals of 100% dementia awareness would change hospital culture, that people with a diagnosis of Dementia had better care and those still with capacity had the ability to shape where and how they received it. This ought to prevent last minute admissions to hospital and crisis intervention. They also mentioned theNICE end of life care quality standard, as well as the NICE dementia quality standard.

There was agreement that there was a need to change societal and cultural attitudes as well as the need to support carers and educate, train and support staff particularly around dementia as well as in effective communication.

There was mention of The Voices Survey which describes the key finding of the first National Bereavement Survey (VOICES) 2011.  This achieved a response rate of 45.7 per cent, a comparable response rate to other postal surveys of the bereaved exploring end of life care. The overall quality of care across all services in the last three months of life was rated by respondents: 12 per cent as outstanding, 30 per cent as excellent, 33 per cent as good, 14 per cent as fair and 10 per cent as poor. Being shown dignity and respect by staff was highest in hospices (87 percent all the time¹ for hospice doctors and 80 per cent for hospice nurses) and lowest in hospitals (57 per cent all the time¹ for hospital doctors and 48 per cent for hospital nurses) (VOICES was published in July 2012).

There was then a discussion about the importance of continuity of care and the need for a more coordinated model of care between health and social care as well as the increasing need for integrated health and social care. At present the use of multiple registers means that people are bounced around the system. There was a shared understanding that there ought to be a whole system approach. There was agreement that there was a need for a strategic direction through the introduction of Electronic Palliative Care Coordination systems ( EPaCCS)

The meeting ended with generalised agreement and support for the need to develop and improve end of life care for people with Dementia.

Jackie Morris, British Geriatrics Society Dignity Champion