1.5 Summarise the rights of carers

This guide will help you answer 1.5 Summarise the rights of carers.

Caring for someone with dementia can be demanding. Carers have legal rights in the UK that help them receive support, guidance, and recognition. These rights are important for both paid carers and unpaid carers such as family members. Understanding them helps protect the carer’s own health and wellbeing, and ensures the person with dementia receives safe and compassionate care.

Legal Framework Protecting Carers

The Care Act 2014 is the main piece of legislation that sets out the rights of carers in England. It applies to unpaid carers and gives them similar recognition to the person they care for. In Scotland, the Carers (Scotland) Act 2016 offers similar provisions, and in Wales there is the Social Services and Well-being (Wales) Act 2014. Each law recognises the role of unpaid carers and their right to an assessment.

These laws require local authorities to assess carers’ needs. The assessment looks at how caring affects the carer’s life, including health, work, and social activities. The focus is not only on the person with dementia but also on supporting the carer so they can maintain their own quality of life.

The Right to a Carer’s Assessment

A carer’s assessment is free and can be requested by any carer who feels they need help. It is carried out by the local council’s adult social care team. You can request this whether you live with the person with dementia or not, and regardless of the number of hours you provide care.

The assessment focuses on:

• The impact of caring on your health and wellbeing
• Whether you are able and willing to carry on caring
• The outcomes you want in your day-to-day life
• Support or services that could help you

The results can lead to a support plan. This may include practical help, financial assistance, or advice on other services.

Right to Support Services

Following the assessment, a carer may be eligible for support. This could include:

• Respite care services, giving the carer a break
• Specialist dementia training to improve care skills
• Emotional support such as counselling
• Carer support groups in the local community
• Equipment or home adaptations to make caring tasks easier

Local councils must provide this support if the carer meets the eligibility criteria set out in law.

Right to Information and Advice

Carers have the right to clear information about dementia and local services. Local authorities must provide details about:

• What dementia is and how it progresses
• How to manage symptoms and behaviours
• Who to contact in a crisis
• Benefits and financial help available
• Respite and community services in the area

Having accurate information can reduce stress and improve the quality of care.

Employment Rights for Working Carers

Many carers for people with dementia also have paid jobs. The law safeguards their rights at work. The Employment Rights Act 1996 gives carers the right to request flexible working. This can include different start and finish times, remote working, or job sharing.

Carers are also entitled to take a reasonable amount of unpaid time off work for dependants in an emergency. This can be used if the person with dementia suddenly becomes unwell or needs urgent help.

Some carers may also qualify for Carer’s Leave or Parental and Carer’s Leave regulations, depending on their workplace policies. Trade unions, ACAS, or HR departments can give advice on employment rights.

Right to Financial Support

Caring for someone with dementia can affect income. Carers may have the right to claim benefits such as:

• Carer’s Allowance if they provide care for at least 35 hours a week and meet eligibility rules
• Universal Credit with a carer element for those on low incomes
• Pension Credit with a carer addition for older carers
• Help with council tax through local reduction schemes

Understanding benefit entitlement can make a real difference to a carer’s financial situation. Advice centres, charities, and the Department for Work and Pensions offer free guidance.

Protection Under Anti-discrimination Law

The Equality Act 2010 protects carers from discrimination by association. This means that you cannot be treated unfairly at work or in services because you care for someone with a disability, such as dementia.

For example, an employer cannot refuse you flexible working purely because you care for a person with dementia. Similarly, service providers cannot deny you access to goods or facilities due to your caring role.

Access to Health and Wellbeing Support

Local services and the NHS recognise that carers’ health can suffer over time. Many GP surgeries offer carer registers. Being on the register means you can access free flu vaccinations, health checks, and referral to local support groups.

Mental health support is available through the NHS and voluntary organisations. Caring can lead to stress, anxiety, or depression. Talking therapies or peer support can help carers manage these feelings.

Rights Under the Mental Capacity Act 2005

The Mental Capacity Act 2005 protects people who cannot make certain decisions for themselves. This law is important for carers of people with dementia, because cognitive decline often affects decision-making.

A carer who holds Lasting Power of Attorney (LPA) can make decisions in the best interests of the person with dementia. This can include decisions about health, medical treatment, and finances. Even without an LPA, carers have the right to be consulted about day-to-day care decisions when the person lacks capacity.

The Right to be Involved in Care Planning

Health and social care teams should involve carers in decisions about care. This includes hospital discharge planning, setting up community support, and reviewing care needs over time.

Being included in planning means carers can share important information and agree on the best outcomes for the person they look after. NHS guidelines state that carers’ input should be valued and acted on.

Training and Education Rights

Carers can ask for training to help in their role. Training might include:

• Understanding dementia and how it affects behaviour
• Safe moving and handling to prevent injury
• First aid and emergency response
• Communication skills to support someone with dementia
• Managing challenging situations or distress

Local authorities, NHS trusts, and charities run free or low-cost training sessions.

Young Carers’ Rights

Young carers who support a family member with dementia have special rights under the Children and Families Act 2014. Councils must carry out a young carer’s assessment to identify support needs. Schools and colleges can provide help with homework, study time, and emotional support.

Young carers may be entitled to respite activities, mentoring, and dedicated youth worker support.

Rights to Respite Care

Respite care is a temporary break from caring duties. It helps prevent burnout and protects the health of the carer and the person with dementia. Rights to respite care mean the local authority must consider providing it if the carer’s assessment shows it is needed.

Respite can be:

• In-home care from a paid carer
• Short stays in a care home
• Day services at a community centre
• Overnight sitting services

These breaks can be planned or used in emergencies.

Advocacy Rights

Carers may have the right to an advocate during assessments or when their needs are being discussed. An advocate is an independent person who speaks on behalf of the carer. This helps ensure that carers’ views are heard, especially if they find it difficult to express their opinions or feel intimidated in meetings.

Local councils have a duty to provide advocacy services in certain circumstances.

Protection from Abuse or Neglect

Carers are protected under safeguarding laws. If a carer is at risk of abuse from the person they care for, other family members, or anyone else, safeguarding procedures can be triggered. This could involve the local safeguarding adults board and police to protect the carer.

In some cases, carers themselves may be accused of abuse or neglect. The law ensures a fair investigation and offers support during this process.

Involvement in Research and Policy

Many carers want a say in how dementia services are shaped. Carers have the right to be involved in consultations and research projects if they wish. This can influence national policy, shape training programmes, and improve services for future carers.

Organisations such as the Alzheimer’s Society run panels and advisory groups where carers’ contributions are valued.

Access to Legal Advice

Carers can seek free or low-cost legal advice on issues like power of attorney, benefits disputes, and housing rights. Charities and Citizens Advice offer support, and legal aid may be available in some cases.

This right is important if the carer is facing debts, eviction risk, or disputes over care arrangements.

Final Thoughts

Caring for someone with dementia is challenging, but knowing your rights gives you options and protection. The law in the UK recognises that carers need direct support. This support covers financial help, workplace flexibility, health services, and training.

Many carers do not realise what they are entitled to, which means they miss out on help that could make life easier. If you are a carer, you have the right to ask questions and request assessments. Speaking up is not selfish; it is a way to safeguard your own wellbeing and to continue caring safely for the person you support.

By using the rights available, carers can reduce stress, maintain their own health, and provide the best care possible for people living with dementia.