Reading List

A curated Reading List to support and extend learning from Dementia Distress and Behaviour Change for Residential Care Staff.

This Reading List supports UK-wide practice. It includes NHS, NICE, CQC, Skills for Care, GOV.UK, Welsh Government, Scottish Government, and Department of Health Northern Ireland sources, with proportionate signposting where capacity, restrictive practice, social care regulation, and deprivation of liberty frameworks differ.

1. Distress, Behaviour Change, and Communication

• NHS - Coping with dementia behaviour changes
  A practical official guide to understanding behaviour change as possible communication and checking for triggers such as pain, constipation, infection, noise, routine disruption, and other sources of distress. It is especially useful for frontline staff in residential settings.
  https://www.nhs.uk/conditions/dementia/living-with-dementia/behaviour/

• NHS - Communicating with someone with dementia
  Useful official advice on clear speech, simple choices, allowing time, listening to non-verbal communication, and reducing distractions. Helpful for understanding how staff communication can either calm or escalate distress.
  https://www.nhs.uk/conditions/dementia/living-with-dementia/communication/

• NICE - Dementia: assessment, management and support for people living with dementia and their carers (NG97) - Recommendations
  The main NICE recommendations page for dementia. Especially relevant here for structured assessment of distress, checking for clinical or environmental causes, psychosocial approaches, pain assessment, and the careful limits around antipsychotic use.
  https://www.nice.org.uk/guidance/ng97/chapter/Recommendations

2. Care Quality and Workforce Practice

• CQC - Health and social care support for people with dementia
  A current CQC review of people's experiences of dementia care in England, including person-centred care, staffing and training, family and carer involvement, inequalities, and service quality.
  https://www.cqc.org.uk/publications/health-and-social-care-support-dementia

• CQC - People with dementia
  A current State of Care focus page showing both poor and good examples from services supporting people living with dementia. It is especially useful for seeing how staffing, environment, safeguarding, and person-centred adjustments affect safety and wellbeing.
  https://www.cqc.org.uk/publications/major-report/state-care/2024-2025/focus/dementia

• Skills for Care - Dementia Training Standards Framework
  A workforce framework showing how dementia learning spans communication, distress, person-centred care, law, delirium, and wider good practice rather than sitting in one narrow topic area.
  https://www.skillsforcare.org.uk/resources/documents/Developing-your-workforce/Other-standards-and-frameworks/Dementia-Training-Standards-Framework.pdf

• Skills for Care - Other standards and frameworks
  A useful hub page for the dementia training framework and related adult social care learning frameworks. Helpful for managers planning wider workforce development beyond this course.
  https://www.skillsforcare.org.uk/Developing-your-workforce/Other-standards-and-frameworks.aspx

3. Acute Change, Delirium, and Safer Decisions

• NICE - Delirium: prevention, diagnosis and management in hospital and long-term care (CG103)
  A valuable official source because sudden behaviour change in a person with dementia may reflect delirium or acute illness rather than routine dementia progression. Particularly relevant to nursing homes and residential care services escalating deterioration.
  https://www.nice.org.uk/guidance/cg103

• GOV.UK - Making decisions: a guide for people who work in health and social care
  A practical Mental Capacity Act guide for health and social care workers in England and Wales, including care staff, support workers, care home managers, and other frontline workers.
  https://www.gov.uk/government/publications/health-and-social-care-workers-mental-capacity-act-decisions/making-decisions-about-your-health-welfare-or-finances

• GOV.UK - Mental Capacity Act Code of Practice
  A key official source for England and Wales on decision-making, best interests, and least restrictive practice. Useful background reading when distress, restrictive responses, or complex consent issues are affecting care planning.
  https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice

4. Nation-Specific Legal Signposting

• Welsh Government - Dementia action plan progress update March 2025
  Useful Wales-facing context on the dementia action plan and the All Wales Dementia Care Pathway of Standards, which promotes a whole-system approach to dementia care.
  https://www.gov.wales/dementia-action-plan-progress-update-march-2025

• Scottish Government - Dementia in Scotland: Everyone's Story
  Scotland's 10-year dementia strategy, developed with people with lived experience and partners, setting the direction for dementia support and policy in Scotland.
  https://www.gov.scot/publications/new-dementia-strategy-scotland-everyones-story/

• gov.scot - Adults with Incapacity (Scotland) Act 2000 capacity guidance
  A Scotland-facing source for social work and health care staff because the legal framework for incapacity and related decisions differs from England and Wales.
  https://www.gov.scot/publications/adults-incapacity-scotland-act-2000-communication-assessing-capacity-guide-social-work-health-care-staff/pages/2/

• 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 capacity and deprivation of liberty materials.
  https://www.health-ni.gov.uk/articles/mental-capacity-act-code-practice-and-other-key-documents

Use this Reading List to deepen understanding of distress, behaviour change, communication, delirium, workforce standards, and the legal context that may affect safer decision-making in different UK nations.