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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  • Dementia Atlas: Putting a focus on dementiaThe 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.
  • Care of dying adults in the last days of lifeThis 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.
  • The dementia profileThe 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.
  • What can I expect from good quality services if I have dementia?A guide for providers of services and people who use services about what support to expect with dementia. This guide was put together by the “Improving Quality of Care Working Group, London Dementia Strategic Clinical Leadership Group”  dem-carers-leaflet
  • Dementia core skills education and training frameworkThis 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 Advice Service – Andover MindDementia Advice Service for: Andover, Basingstoke, Deane and Alton, Eastleigh, Hart and Rushmoor, Romsey and Winchester www.andovermind.org.uk/dementia-advice/ 01264 353363  Dementia Contact list 2015 (and see below) How can we help? We are a consistent point of contact and support from first diagnosis throughout your journey We ...
  • Duty of Candour: Information for all providersThis 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.
  • Pain in People with Dementia: A Silent TragedyThis 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.
  • Grief, loss and bereavementThis 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.
  • Planning for your future careThis 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.
  • Marie Curie End of Life Care AtlasThe 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.
  • Life After Death: Six steps to improve support in bereavementThis briefing paper published by the National Council for Palliative Care identifies six steps to address bereavement as a major public policy issue.
  • ICD deactivation at the end of life: Principles and practiceDesigned 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.
  • QS30: Supporting people to live well with dementiaThis quality standard, published by the National Institute for Health and Care Excellence (NICE), covers the care and support of people with dementia.
  • RCGP Commissioning Guidance in End of Life CareThis 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.
  • How would I know? What can I do?This 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.
  • Advance care planning toolkitThis 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.
  • Commissioning person-centred end of life careThis 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.
  • Matters of Life and Death: Helping people to live well until they dieThis 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.
  • NICE quality standard QS13: End of life care for adultsThis 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.
  • Gold Standard Framework Prognostic Indicator GuidanceThis 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.
  • Committed to carers: Supporting carers of people at the end of lifeThis 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.
  • Commissioning End of Life Care: Act & EarlyThis 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.
  • Loss and bereavement in people with dementiaThis 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.
  • Treatment and care towards the end of life: good practice in decision makingThis 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 and benchmarking toolThe 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.
  • End of life care for people with dementia commissioning guideThis 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.
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