2.1. Summarise legislation and frameworks in relation to dementia care

This guide will help you answer 2.1. Summarise legislation and frameworks in relation to dementia care.

Providing care for individuals affected by dementia requires adherence to specific laws, regulations, and frameworks to ensure their rights, dignity, and well-being are safeguarded. In the UK, several pieces of legislation and guidance frameworks set out the principles and practices that must be followed when delivering high-quality dementia care. These laws promote equality, protect vulnerable adults, and guide care practices.

Mental Capacity Act 2005

The Mental Capacity Act 2005 (MCA) applies to England and Wales. It protects people who may lack the capacity to make specific decisions for themselves, including many individuals with dementia. The Act highlights the importance of empowering individuals to make their own choices wherever possible and provides a framework for making decisions in their best interests when they are unable to do so.

Key principles of the MCA include:

Presuming an individual has capacity unless proven otherwise.
Supporting them to make decisions by providing information in a way they can understand.
Allowing them to make decisions, even if those decisions seem unwise.
Ensuring that any decisions made on their behalf are in their best interests.
Making decisions in the least restrictive way to their rights and freedoms.

The MCA also introduced Lasting Powers of Attorney (LPA), which allows an individual to appoint someone trusted to make decisions about their health, welfare, or finances in the future, should they lose capacity.

Care Act 2014

The Care Act 2014 sets out the legal duties of local authorities to provide care and support to adults, including those with dementia, in England. It emphasises the importance of promoting well-being and independence, recognising that everyone’s needs are different.

Key aspects include:

Assessing the care needs of individuals and creating personalised care plans.
Providing carers with the support they need, ensuring their well-being is also considered.
Emphasising prevention to delay or reduce the onset of needs arising from dementia.
Protecting individuals from abuse or neglect under safeguarding responsibilities.

The Act ensures that people with dementia receive the right level of support, resources, and services to maintain their quality of life.

Equality Act 2010

The Equality Act 2010 promotes equality and protects individuals with dementia from discrimination. It treats dementia as a disability, offering legal protection to ensure fair treatment in employment, access to services, education, and housing.

Key provisions include:

Public and private organisations must make reasonable adjustments to ensure accessibility for people with dementia.
Preventing discrimination based on age, disability, or mental health status.
Promoting inclusivity in all public services.

For individuals with dementia, this legislation supports equal opportunities and helps reduce stigma.

Human Rights Act 1998

The Human Rights Act 1998 provides fundamental rights to all individuals in the UK, including those living with dementia. Care providers must respect these rights when delivering services.

Key relevant rights include:

Right to life (Article 2): Ensuring access to necessary medical treatment and care.
Right to freedom from inhuman or degrading treatment (Article 3): Protecting individuals from neglect, abuse, or poor care standards.
Right to respect for private and family life (Article 8): Maintaining dignity, privacy, and autonomy wherever possible.

This Act ensures that individuals with dementia are treated with dignity and respect at all times.

Mental Health Act 1983 (Amended 2007)

The Mental Health Act allows individuals with severe dementia to receive treatment without consent, but only in very specific circumstances. For example, if someone poses a risk to themselves or others because of their condition.

Key points include:

The Act applies mainly when dementia causes significant behavioural challenges or serious risk.
Deprivation of Liberty Safeguards (DoLS) were added as part of the amendments in 2007. These protect individuals in care settings when restrictions are needed to keep them safe.

A newer system known as the Liberty Protection Safeguards (LPS) is set to replace DoLS but has not yet come into full force (as of 2023).

Children’s and Families Legislation

For young-onset dementia, which occurs under the age of 65, additional support may fall under the Children and Families Act 2014, especially if dependents such as children are involved. This ensures that the family of an individual with dementia, including young people, can access appropriate support services.

National Dementia Strategy

The National Dementia Strategy for England was introduced in 2009 to improve dementia care across the country. While not legally binding, it provides a framework for best practices in dementia care, which include:

Increasing awareness and reducing stigma around dementia.
Providing early diagnosis and support.
Improving the quality of care in all settings, including hospitals, care homes, and in the individual’s own home.

This strategy highlights the importance of person-centred care, tailored to the individual’s specific circumstances.

Standards and Guidance Frameworks

Apart from legislation, several frameworks guide the delivery of dementia care:

NICE Guidelines

The National Institute for Health and Care Excellence (NICE) issues evidence-based guidelines for dementia care. Recommendations include:

Early diagnosis and intervention to ensure timely treatment and support.
Support for carers, recognising the immense role they play in the individual’s well-being.
Delivering person-centred care that prioritises the person’s preferences, abilities, and life history.
Multi-agency collaboration among health, social care, and voluntary sectors.

Dementia Statements

The Dementia Statements were developed by people living with dementia and their families in collaboration with Alzheimer’s Society. These statements reflect the needs and rights of individuals with dementia and promote inclusion. Examples include:

The right to a timely diagnosis.
The right to be recognised and respected as an individual.
The right to personalised care and support.

CQC Regulations

The Care Quality Commission (CQC) monitors and assesses health and social care providers in the UK. Organisations delivering dementia care must meet the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, which include:

Safeguarding vulnerable adults
Meeting fundamental standards of care quality
Ensuring consent and decision-making processes comply with the MCA

Care providers must deliver safe, effective, and compassionate care to remain compliant with CQC standards.

Safeguarding Adults Policies

Local authorities and care providers must implement safeguarding adults policies under the Care Act 2014. These protect individuals with dementia from abuse, neglect, and exploitation. Safeguarding practices may involve:

Multi-agency collaboration to assess and reduce risk.
Investigating concerns promptly and efficiently.
Providing training to staff on recognising and responding to signs of abuse.

Safeguarding is essential to ensure the safety and dignity of people living with dementia.

Data Protection Legislation

The Data Protection Act 2018 and the UK General Data Protection Regulation (UK GDPR) regulate how personal information about individuals with dementia is handled. Key points include:

Confidentiality of medical and care records must be maintained.
Information should only be shared with authorised persons or in the individual’s best interests.
Protected health data must be stored securely.

This ensures individuals’ privacy is respected, even as their capacity diminishes.

Final Thoughts

The legal and regulatory framework around dementia care is vast, but its overall aim is clear: to protect the rights of individuals with dementia, promote their welfare, and ensure safe, high-quality care. Key legislation—such as the Mental Capacity Act, Equality Act, and Care Act—provide legal safeguards, while frameworks like NICE guidelines and the National Dementia Strategy promote best practices in care delivery. Together, they ensure that dementia care is inclusive, respectful, and person-centred.