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A Practical Approach to Palliative Care for People with Dementia in Care Homes Dr Gillie Evans is a part time GP Principal at the Jenner Health Centre in Whittlesey. She is responsible for the care of 50 residents at The Gables, Eastrea, a BUPA Specialist nursing home in which the majority of the residents have advanced dementia. In 2005, the Peterborough Palliative Care in Dementia Group was founded by Dr Evans and a local Consultant in Palliative Medicine after a shared experience looking after a resident at The Gables who was dying with advanced dementia. Health professionals from primary and secondary care and the care home sector were invited to join. The Group now has sixteen members whose shared expertise covers a wide range of disciplines. The aims of the Group are to develop and disseminate good practice in the care of people with dementia at the end of life, with a particular focus on nursing and residential homes, but also in hospital wards and community settings. The Group has adopted an education and training role by running conferences and also provides a local focus for leading on and supporting the implementation of National Strategies in relation to palliative care in dementia. The Group has concentrated on the development of practical tools to improve end of life care for people with dementia. Discussion about the experience of looking after patients with dementia in the care home setting, and reviewing significant events, has been the driver for many of the areas covered. These include an Advance Care Plan, the introduction of a Pain Assessment Scale, a modified End of Life Care Pathway appropriate for people with dementia, an Allow a Natural Death Form and a guideline for the assessment and treatment of Acute Agitation. Each document has been adapted so that it can be used in the day to day life of a busy care home and is supported by a written protocol for its use. There is also a medication review tool for GPs with a worked example (the ICARUS grid). The need for medical advance care planning for care home residents and recognition of the palliative care stage of dementia has been addressed by the development of The RICH (Remain in the Care Home) Plan. This uses an algorithm developed by the National Council for Palliative Care and included in the Power of Partnership publication in 2009. http://www.ncpc.org.uk The documents, and protocols, are attached below and available free of charge for downloading and further adaptation to suit local needs. In 2010, the Group published a Compromised Swallowing Guide, written by the specialist dietician, speech and language therapist and GP and with medication advice from the Consultant in palliative medicine. This booklet provides advice for carers, nurses and doctors on maintaining nutrition and hydration in advanced dementia when swallowing may be severely compromised. It also provides guidance on alternatives to oral medication for symptom control in advanced dementia, with appropriate dosages for the frail elderly, including at the end of life. (available at http://www.endoflifecareforadults.nhs.uk/publications/compromised-swallowing-a-practical-guide) A shortened version suitable for relatives and carers is available in the document list below. Recipes for homemade nutritional supplements in the form of high energy drinks and desserts, with calorie content and cost, are also available in the document list. The group has been integral to the development of a locally enhanced service contract between NHS Peterborough (PCT) and city GPs which aligns GP practices with specific care homes. The alignment aims to enable better holistic care and a more proactive approach to GP care of care home residents with the potential for raising standards and facilitating advance care planning and improved end of life care. Support for this proposal from the British Geriatric Society is documented below. Dr Evans and the staff at The Gables have featured as a case study in the 2011 Centre for Social Justice report on transforming the lives of older people in poverty. http://www.centreforsocialjustice.org.uk/client/downloads/20110629 The report recommends that: ... single GP practices are aligned with specific care homes, committing to visiting on a regular basis and proactively to ‘case manage’ the often complex medical conditions of residents. CONFERENCES held by the Group have attracted delegates from a wide range of health professionals and care homes and have featured nationally recognised speakers.
The Group was awarded NHS Team of the Year 2010 at the International Dementia Excellence Awards in October 2010, as judged by the Dementia Services Development Centre at the University of Stirling. The members of the Group hope that by raising awareness of the particular difficulties of providing effective end of life care for people with dementia, by emphasising the value of pooling skills and experience and by providing practical tools to support the delivery of high quality care, they may continue to make a difference for individuals dying with dementia and their families. Documents:
PUBLICATIONS by members of the Group include: Gillie E Evans, Louise Robinson. The role of the family doctor in supportive care for people with dementia Chapter 15 Supportive Care for the Person with Dementia. OUP 2010 Gillie Evans. Improving end of life care for the person with dementia: A practical approach from general practice. Dementia The international journal of social research and practice Vol 8 Number 3, August 2009 Evans, G. Factors influencing emergency hospital admissions from nursing and residential homes: positive results from a practice-based audit. Journal of Evaluation in Clinical Practice, no. doi: 10.1111/j.1365-2753.2010.01471.x Alison Smith. Hydration and nutrition at end of life in advanced dementia. Out of the Shadows: End of life care for people with dementia. National Council for Palliative Care February 2009 Alison Smith. Nutritional management of Alzheimer’s disease. Network Health Dietitian. March 2010 Dr Gillie Evans. Provision of appropriate care. Chapter 20, Dementia. From Advanced Disease to Bereavement. OUP 2011
MEMBERS:
For further information contact Dr Evans at gillie.evans@nhs.net |
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