When someone is diagnosed with dementia, they should be encouraged to remain as independent as possible, and to continue to enjoy their usual activities and occupations.
It is important to encourage the person with dementia to make arrangements for the future including future care options. They may wish to prepare for a time when another person may need to help with their affairs.
- 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.
- Mental Health Act 1983: Code of PracticeJanuary 16 2015The revised code of practice shows professionals how to carry out their roles and responsibilities under the Mental Health Act 1983, to ensure that all patients receive high quality and safe care.
- Mental Capacity Act Code of PracticeNovember 21 2014This guidance published by the Office of the Public Guardian explains to people working with or caring for adults who lack capacity to make decisions for themselves the legal responsibilities that must be considered under the Mental Capacity Act 2005.
- Making decisions: who decides when you can’t?April 20 2009This guidance published by the Office of the Public Guardian explains how the Mental Capacity Act 2005 affects anyone who is unable to make some or all decisions for themselves. It provides advice to help people to plan ahead in case they are unable to make and understand decisions in the future.
- 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.
- Making decisions: a guide for people who work in health and social careApril 1 2009This guidance published by the Office of the Public Guardian explains to health and social care workers how the Mental Capacity Act 2005 affects anyone who is unable to make some or all decisions for themselves.
- 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.
- The Care Bill: factsheetsJanuary 10 2014These factsheets will help practitioners to better support patients and carers to get the care and support they need, following the changes introduced by the Care Bill, published in 2013.
- The dementia guideFebruary 22 2014This guide produced by the Alzheimer's Society is for anyone who has recently been told they have 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.
- Mental Capacity Act 2005March 5 2014The Mental Capacity Act 2005 came into force in 2007 and affects all those working in health and social care involved in caring for people over the age of 16 who are unable to make some or all decisions for themselves.
- 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.
- Advance decisionsMarch 5 2014Advance Directives (also referred to as advance decisions to refuse treatment, ADRTs, or living wills) may be drawn up by any person with capacity to do so who is over the age of 18, to determine what treatment they might receive in the event of them losing capacity to make decisions under the Mental Capacity Act 2005.
- 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.
- Deprivation of Liberty Safeguards (DoLS)March 5 2014This factsheet published by the Alzheimer's Society explains the Deprivation of Liberty Safeguards (DoLS), which are part of the Mental Capacity Act 2005. It also outlines the process for getting authorisation for a deprivation of liberty and how to get it reviewed.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- National Audit of Dementia – third reportJuly 13 2017The National Audit of Dementia (NAD) (care in general hospitals) measures the performance of general hospitals against criteria relating to care delivery which are known to impact upon people with dementia while in hospital. The third audit collected data between April and November 2016.
- Admiral Nurse Dementia HelplineThe Admiral Nurse Dementia Helpline is for anyone with a question or concern about dementia. From looking out for the first symptoms of Alzheimer’s, to understanding the challenges of living with someone with vascular dementia, Admiral Nurses have the knowledge and experience to understand the situation and suggest answers that might be hard to find elsewhere.2nd Floor, Resource for London, 356 Holloway Road, London, N7 6PA0845 257 firstname.lastname@example.org://www.dementiauk.org/information-support/admiral-nursing-direct/
- Alzheimer’s SocietyAlzheimer's Society is a membership organisation, which works to improve the quality of life of people affected by dementia in England, Wales and Northern Ireland.Devon House, 58 St Katharine's Way, London, E1W 1LB020 7423 email@example.com://www.alzheimers.org.uk/
- Dementia UKDementia UK is a national charity, committed to improving quality of life for all people affected by dementia. The charity provides Admiral Nurses, specialist dementia nurses who provide practical and emotional support to family carers of people with dementia.2nd Floor, Resource for London, 356 Holloway Road, London, N7 6PA020 7697 firstname.lastname@example.org://www.dementiauk.org
- Carers UKCarers UK is a national membership charity for carers, that is both a support network and a movement for change.20 Great Dover Street, London, SE1 4LX0808 808 email@example.com://www.carersuk.org/
- National Council for Palliative CareThe National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland.The Fitzpatrick Building, 188-194 York Way, London, N7 9AS020 7697 firstname.lastname@example.org://www.ncpc.org.uk/
- Gold Standards Framework CentreThe National Gold Standards Framework (GSF) Centre in End of Life Care is the national training and coordinating centre for all GSF programmes, enabling generalist frontline staff to provide a gold standard of care for people nearing the end of life.Victoria Mews, 8-9 St Austin's Friars, Shrewsbury, Shropshire, SY1 1RY01743 291 email@example.com://www.goldstandardsframework.org.uk/