DementiaRoadmap

Helping primary care to support people with dementia

End of life care

All people who develop dementia will have dementia at the end of their lives, either as the condition they die from or as a factor that may complicate the care of a different condition.

Diminishing capacity means that it is important for the person with dementia to consider the type of care they would want and where they would want to be at the end of their life as early as possible.

Problems with capacity and communication can also contribute to undignified treatment and the under treatment of pain in people with dementia at the end of their lives.

Significant, co-ordinated and holistic support is needed to ensure that all people with dementia end their lives with dignity, free from pain and in the place of their choosing.

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Resources

  • Dementia core skills education and training frameworkOctober 29 2015This framework published by Skills for Health, Health Education England and Skills for Care sets out the essential skills and knowledge necessary for all staff involved in dementia care.
  • Dementia Atlas: Putting a focus on dementiaAugust 16 2016The Dementia Atlas is an interactive map that plots data about dementia care and support, allowing people to compare the quality of dementia care across the country.
  • NICE quality standard QS13: End of life care for adultsNovember 17 2011This quality standard published by the National Clinical Institute for Health and Clinical Excellence (NICE) defines clinical best practice in provding end of life care for adults.
  • Care of dying adults in the last days of lifeMarch 21 2016This guideline published by the National Institute for Health and Care Excellence (NICE) covers the clinical care of adults (18 years and over) who are dying during the last 2 to 3 days of life. The guideline contains specific advice relevant when caring for people with dementia.
  • Grief, loss and bereavementSeptember 22 2014This factsheet published by the Alzheimers Society looks at some of the feelings carers may experience in caring for someone living with dementia and suggests ways to cope. It also looks at supporting a person with dementia to cope with grief and bereavement.
  • Loss and bereavement in people with dementiaFebruary 22 2011This leaflet published by Alzheimer Scotland addresses the lack of help and information available for formal and informal carers of people with dementia who are bereaved.
  • Duty of Candour: Information for all providersMarch 15 2015This document published by the Care Quality Commission sets out how meeting the Duty of Candour regulation will be central to both registration and inspection for NHS bodies and all other care providers regulated by the CQC.
  • Planning for your future careSeptember 16 2014This guidance published by the National Council for Palliative Care explains advance care planning to the public. It outlines the different options available to people when planning for their end of life care.
  • ICD deactivation at the end of life: Principles and practiceSeptember 30 2013Designed for any health professionals involved in caring for patients with an Implantable Cardioverter Defibrillator (ICD), this document discusses issues relating to ICDs in the management of advanced heart disease.
  • The dementia profileMarch 1 2016The dementia profile developed by the Dementia Intelligence Network collects new and existing data on dementia at both Clinical Commissioning Group and local authority level. This will assist the local planning of services and support areas to make sustainable improvements from an easily accessible online platform.
  • Pain in People with Dementia: A Silent TragedyJanuary 7 2015This report, published by Napp Pharmaceuticals, draws on a survey of interviews with experts, major providers of care, and on desk research. It quantifies the problem and sets out the issues in recognising, assessing and managing pain in people with dementia.
  • QS30: Supporting people to live well with dementiaApril 3 2013This quality standard, published by the National Institute for Health and Care Excellence (NICE), covers the care and support of people with dementia.
  • Marie Curie End of Life Care AtlasJuly 4 2014The Marie Curie End of Life Care Atlas is an information portal that gives people who plan and commission end of life care new insight into care provision in their local areas.
  • Committed to carers: Supporting carers of people at the end of lifeJuly 30 2011This report published by the Marie Curie Cancer Care draws on the direct experiences of people caring for someone at the end of life and on Marie Curie Cancer Care’s years of expertise of caring for carers.
  • RCGP Commissioning Guidance in End of Life CareMarch 4 2013This guidance offers a logical six-step framework and overview to support GP commissioners to deliver practical improvements in end of life care, aligned with national policy and quality standards.
  • Commissioning End of Life Care: Act & EarlyJuly 4 2011This guidance published by the National Council for Palliative Care aims to help healthcare commissioners to prioritise early action on end of life care to ensure people’s choices are met and to avoid unnecessary emergency hospital admissions.
  • Matters of Life and Death: Helping people to live well until they dieAugust 4 2012This guidance aims to support practitioners to implement the End of Life Care Patient Charter, jointly produced by the Royal College of General Practitioners and the Royal College of Nursing.
  • How would I know? What can I do?December 6 2012This guide, developed by the National Council for Palliative Care (NCPC), provides advice for carers and those who work with people with dementia on how to help with pain and distress in people with the condition.
  • Gold Standard Framework Prognostic Indicator GuidanceOctober 4 2011This guidance aims to help GPs, clinicians and other professionals in earlier identification of those adult patients nearing the end of their life who may need additional support.
  • End of life care for people with dementia commissioning and benchmarking toolJune 25 2010The commissioning and benchmarking tool helps you to assess local service requirements using the indicative benchmark as a starting point. With knowledge of your local population and its demographic, you can amend the benchmark to better reflect your local circumstances.
  • Treatment and care towards the end of life: good practice in decision makingNovember 4 2010This guidance provides a framework for good practice aimed at doctors when providing treatment and care for patients who are reaching the end of their lives.
  • End of life care for people with dementia commissioning guideJune 8 2010This commissioning guide provides support for the local implementation of NICE clinical guidelines through commissioning, and is a resource to help statutory and voluntary health and social care professionals in England to commission integrated end of life care (EOLC) services for people with dementia.
  • Commissioning person-centred end of life careOctober 17 2012This toolkit published by the National End of Life Care Programme identifies the main elements involved in the commissioning process, explains the commissioning cycle in practical terms and offers a four-stage approach across all sectors.
  • Advance care planning toolkitOctober 19 2012This toolkit developed by the National End of Life Care Programme (NEoLCP) aims to help care providers approach the advance care planning process with confidence and knowledge.
  • Life After Death: Six steps to improve support in bereavementJanuary 30 2014This briefing paper published by the National Council for Palliative Care identifies six steps to address bereavement as a major public policy issue.
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