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Dementia - decision making and capacity

You can find here resources which explain how mental capacity is defined, the legal requirements, and guidance related to this. There are also resources which offer guidance on how people with dementia and their carers can be supported in decision-making.

In other sections of this website you can also:

Resources are arranged under the following headings:

Some of the resources on this page are in PDF format - see how to access PDF files.

Mental capacity

Alzheimer Scotland (2012) Dementia: Making decisions (PDF 927.3KB)
This aims to be a practical guide for family members, partners and friends with powers of attorney, guardianship or deputyship, with reference to the legislation in England and Wales as well as Scotland. It is based on a research study which included the experience of over 100 carers who have taken on the role of proxy decision-maker for someone with dementia. The guidance is arranged in three parts which look at: decision-making and supporting the person with dementia to make their own decisions; making good decisions for the person who is unable to make decisions in their own interest; messages from the carers who participated in the study undertaken for this publication.

The main findings and recommendations of the research and development project undertaken for this project are also available as a report. The project had four main objectives: to identify issues facing lay proxies; to identity what they felt would help them as decision-makers for the person with dementia; to identify models of good practice in meeting the needs of lay proxies; to inform and influence policy and practice to ensure lay proxies are empowered to make best interest decisions. For further information see Dementia: autonomy and decision-making: putting principles into practice. Research summary and recommendations for policy and practice (PDF 732.5KB)

Alzheimer’s Society: Mental Capacity Act 2005
This factsheet discusses mental capacity and the provisions of the Mental Capacity Act 2005. This act applies to England and Wales.

Gov.UK: Lasting Power of Attorney, being in care and your financial affairs 
This webpage provides information about mental capacity and planning ahead such as setting up and implementing Lasting Power of Attorney.  

Northern Ireland Executive: Single bill approach for mental health
This news item from the Department of Health, Social Services and Public Safety sets the context for Northern Ireland’s new mental capacity and mental health legislation. A further news item updates developments around an Equality Impact Assessment (EQIA) on the key proposals in the new Mental Capacity Bill. The consultation on this closed in October 2010. See the news item at EQIA for the new Mental Capacity Bill.

SCIE: At a glance 43 (2011) The Deprivation of Liberty Safeguards
The Deprivation of Liberty Safeguards are an amendment to the Mental Capacity Act 2005 and apply in England and Wales only. This briefing provides an overview of key messages, what deprivation of liberty is and how it can be authorised. SCIE have also published an e-learning resource on the Mental Incapacity Act see the e-learning section at Learning resources.

Scottish Government: Adults with Incapacity (Scotland) Act 2000
This page within the Scottish Government website provides a short guide to the Act and the provisions for a safeguarding the welfare of a person with impaired capacity and managing their financial affairs. It discusses what capacity and what incapable mean in the context of the Act.

NHS Education for Scotland (NES) have published a learning resource on the practical applications of the provisions of The Adults with Incapacity (Scotland) Act 2000 and related legislation – see the e-learning section at Learning resources.

Resources and tools

Alzheimer’s Society: Living with dementia - Legal and financial
This section of the Alzheimer’s Society website focuses on legal and financial issues which are useful to consider while the person with dementia is able to do so. It includes information about benefits and direct payments, and frequently asked legal questions.

Health Scotland and Alzheimer Scotland (2011) Coping with dementia – a practical DVD for carers. Chapter 3: money and legal matters
This is part of a DVD that has been made for people caring for someone in the middle to late stages of dementia. The short film focuses on: planning for the future; managing everyday money matters; more legal powers to help the person and welfare benefits.

Joseph Rowntree Foundation (2010) Talking Mats® help involve people with dementia and their carers in decision making
Recent government guidance recommends that people with dementia are encouraged to express their views and be included in decisions about their care. This study reveals how Talking Mats, a low-tech communication tool, can help both parties participate fully in discussions about everyday care. For information about this communication tool see Talking Mats.

National End of Life Care Programme: Preferred priorities for care (PCC)
This patient held document is designed to facilitate patient choice in relation to end of life issues. “The explicit recording of patients/carers wishes can form the basis of care planning in multi-disciplinary teams and other services, minimising inappropriate admissions and interventions”. The PCC also records services being accessed. Guidelines for health and social care staff on using the PCC are also available. 

Royal College of Nursing (2012) Safeguarding
This resource aims to help RCN members locate information that is practical, useful, relevant and adaptable in different settings. Resources are arranged under the headings: adult; children and young people; vulnerable people; safeguarding professionals.

SCIE: Dementia gateway: Making decisions
This section of the dementia gateway brings together information and resources on: helping people to make their own decisions; making decisions in a person’s best interests; capacity and advance care planning.

Stories and good practice examples

Practitioners have shared improvements they have made in the delivery of dementia care and services describing what changes occurred as a result of their initiatives and what they learned from the experience. The stories have been arranged according to the five key ingredients in the Commitment to the care of people with dementia in general hospitals. To read these improvement stories see Best practice examples.

Department of Health (2011) Living well with dementia: a National Dementia Strategy - good practice compendium
This good practice compendium has been compiled from across the regions to support local delivery of the national dementia strategy. It brings together practice examples on a wide range of dementia care.

Healthtalkonline 
This is a database of personal and patient experiences compiled from qualitative research on different health conditions undertaken by the Health Experiences Research Group at the University of Oxford. Carers of people share their experiences on:
Difficult decisions
Carers of people with dementia talk about difficult decisions they have needed to make in their caring role or as a relative. Topics covered are: wandering; driving; money; self care; respect; living with change; complicated emotions and end of life (scroll down the page to access all of the different topics).

SCIE Social Care TV 
Social Care TV is an online channel providing video-based training resources and general interest programmes for everyone involved in the social care sector.
Mental capacity videos
This series of videos on SCIE Social Care TV demonstrates the application of the Mental Capacity Act in different situations. The series highlights various factors involved in decision making and includes a demonstration of good practice in assessing mental capacity.

Standards

For the relevant standard statements and associated guidance see:
 
NICE quality standards: Dementia standard
See statement 5.

Scottish Government: Standards of care for dementia in Scotland
As a person with dementia:
I have the right to be regarded as a unique individual and to be treated with dignity and respect.
I have the right to be as independent as possible and be included in my community.

For overarching resources and resources on other aspects of care see Supporting people with dementia