Reading List

A curated Reading List to support and extend learning from Advanced Dementia and End of Life Care for Residential Care Staff.

This course is written for residential and nursing care staff across the UK. The resources below include UK-wide clinical principles and nation-specific sources where law, care-home systems, funding, capacity, or service arrangements differ.

1. Core Dementia and End of Life Guidance

• NICE - Dementia: assessment, management and support for people living with dementia and their carers (NG97)
  The main NICE dementia guideline. Particularly useful here for palliative care in dementia, best-interests decision-making, hospital admission risks, eating and drinking support, speech and language therapy referral, and the advice not to use enteral feeding routinely in severe dementia.
  https://www.nice.org.uk/guidance/ng97/chapter/Recommendations

• NHS - Dementia and end of life planning
  A practical official overview of planning ahead, place of care, palliative support, family involvement, and the NHS continuing healthcare fast-track pathway when health is deteriorating quickly near the end of life.
  https://www.nhs.uk/conditions/dementia/living-with-dementia/palliative-care/

• NICE - End of life care for adults: service delivery (NG142)
  A valuable NICE guideline on identifying adults approaching the end of life, holistic assessment, advance care planning, communication between services, coordinated care, transfers, and out-of-hours support. Especially relevant to care homes trying to avoid fragmented end of life care.
  https://www.nice.org.uk/guidance/ng142/chapter/recommendations

2. Last Days of Life, Comfort, and Symptom Care

• NICE - Care of dying adults in the last days of life (NG31)
  The main NICE source for recognising possible last days of life, communication, shared decision-making, hydration, mouth care, medicine review, symptom control, and the need to check for reversible causes of agitation or delirium. Highly relevant for nursing homes and care homes supporting people to die in place.
  https://www.nice.org.uk/guidance/ng31/chapter/Recommendations

• NHS Standards Directory - Palliative and End of Life Care Standard
  A current NHS England information standard, UK-wide in scope, showing the importance of having reviewed, shareable palliative and end of life plans that reflect the person's wishes and can be used across health and social care settings.
  https://standards.nhs.uk/published-standards/palliative-and-end-of-life-care-standard

• CQC - End of life care planning and medicines optimisation
  A practical provider-facing CQC page covering anticipatory medicines, clear administration directions, records, medicine review, controlled drugs, syringe drivers in nursing homes, and the importance of care planning and communication in the final days of life.
  https://www.cqc.org.uk/guidance-providers/adult-social-care/end-life-care-planning-medicines-optimisation

3. Decision-Making, Planning, and Care Home Coordination

• NICE - Decision-making and mental capacity (NG108)
  A key source for sensitive advance care planning, involving family appropriately, assessing capacity for specific decisions, best interests, and recording and sharing plans clearly. Essential background reading for later-stage dementia planning in England and Wales.
  https://www.nice.org.uk/guidance/ng108/chapter/recommendations

• NHS England - Providing proactive care for people living in care homes: Enhanced health in care homes framework
  A useful official framework for care home practice, especially around joined-up personalised care and support plans, recording normal observations and soft signs of deterioration, and sharing information between care home and NHS teams.
  https://www.england.nhs.uk/long-read/providing-proactive-care-for-people-living-in-care-homes-enhanced-health-in-care-homes-framework/

• NHS England - My future wishes: Advance Care Planning (ACP) for people with dementia in all care settings
  A dementia-specific NHS England guidance document focused on creating opportunities for people living with dementia to develop advance care plans before crisis decisions arise.
  https://www.england.nhs.uk/publication/my-future-wishes-advance-care-planning-acp-for-people-with-dementia-in-all-care-settings/

• NHS - NHS continuing healthcare
  A public NHS guide for England explaining continuing healthcare eligibility and the fast-track pathway for people whose health is deteriorating quickly and who may be nearing the end of life.
  https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/

• NHS - Do not attempt cardiopulmonary resuscitation (DNACPR) decisions
  A clear NHS explanation of DNACPR, including the important point that DNACPR relates to CPR only and does not mean that other appropriate care, treatment, and support should stop.
  https://www.nhs.uk/tests-and-treatments/do-not-attempt-cardiopulmonary-resuscitation-dnacpr-decisions/

• GOV.WALES - Continuing NHS Healthcare: how it is organised if you are eligible
  A Wales-facing source explaining continuing NHS healthcare arrangements, including the fast-track process when someone is deteriorating quickly and may be approaching the end of life.
  https://www.gov.wales/continuing-nhs-healthcare-how-it-organised-if-you-are-eligible-html

4. Care Quality and Four-Nations Signposting

• CQC - Good practice in caring for people with dementia
  A current CQC research summary highlighting person-led care planning, meaningful activity, and the need to build support around the individual and their family rather than around generic routines. Useful context for the whole dementia pathway, including advanced dementia.
  https://www.cqc.org.uk/about-us/transparency/external-reports-research/good-practice-caring-dementia

• CQC - End of life care: inadequate
  A concise CQC page showing what poor adult social care end of life support looks like, including failure to plan with people, failure to respect cultural and religious needs, and failure to support families and staff after death.
  https://www.cqc.org.uk/guidance-providers/adult-social-care/end-life-care-inadequate

• gov.scot - My Health, My Care, My Home: palliative and end of life care
  A Scotland-facing care home framework section on palliative and end of life care, including anticipatory care plans, staff learning, specialist palliative care links, and bereavement support.
  https://www.gov.scot/publications/health-care-home-healthcare-framework-adults-living-care-homes/pages/10/

• Department of Health Northern Ireland - Enhancing Clinical Care Framework in Northern Ireland Care Homes
  A Northern Ireland care-home framework on timely, integrated, person-centred clinical care for adults living in residential and nursing homes, including palliative and end of life care context.
  https://www.health-ni.gov.uk/articles/enhancing-clinical-care-framework-eccf-northern-ireland-care-homes

• Law Wales - Key legislation (social care)
  A helpful Wales-facing signpost to the wider legal context affecting adult social care, including the Mental Capacity Act 2005 and Welsh social care legislation.
  https://law.gov.wales/key-legislation-social-care

• gov.scot - Adults with Incapacity (Scotland) Act 2000 code materials
  A practical Scotland-facing source because legal arrangements for incapacity decisions differ from England and Wales, even where end of life care principles are similar.
  https://www.gov.scot/publications/adults-incapacity-scotland-act-2000-code-practice-local-authorities-exercising-functions-under-2000-act/

• Department of Health Northern Ireland - Mental Capacity Act Code of Practice and other key documents
  A Northern Ireland entry point for the Mental Capacity Act (Northern Ireland) 2016 and related guidance affecting future care decisions and lawful decision-making.
  https://www.health-ni.gov.uk/articles/mental-capacity-act-code-practice-and-other-key-documents

Use this Reading List to deepen understanding of advanced dementia, later-stage decline, advance care planning, comfort care, symptom review, care coordination, and the legal context that shapes end of life decisions in different UK nations.