Know Your Rights

Your rights as a person with dementia

Dementia is recognised as a disability under the Equality Act 2010 . That means:

• It is against the law to discriminate against you because of dementia at work, in shops, in healthcare or anywhere else that serves the public.
• Employers, public services and businesses must make reasonable adjustments so you can use their services on the same terms as anyone else.
• You have the right to be treated with dignity, to be listened to, and to be involved in decisions about your own life and care.

A diagnosis of dementia does not automatically mean you lose the right to make your own decisions, to drive, to manage your own finances or to live in your own home. Those things are looked at individually not assumed.

Your rights as a carer

If you regularly give unpaid support to someone who could not manage without you, the law recognises you as a carer. Under the Care Act 2014 you have the right to:

• A free Carer's Assessment from your local council (in Halesworth, this is Suffolk County Council) separate from any assessment the person you care for has.
• Practical and emotional support based on what that assessment identifies for example breaks from caring (respite), training, help with transport, or a small personal budget.
• Information and advice, regardless of whether you qualify for funded support.

You don't have to live with the person you care for, and you don't have to be a family member, to ask for a Carer's Assessment. Working carers also have rights at work, including time off in an emergency, the right to request flexible working and, since April 2024, up to a week of unpaid carer's leave each year.

Mental capacity and making decisions

The Mental Capacity Act 2005 is the law that protects people whose ability to make decisions may be affected by dementia. It is built on five guiding principles:

1. Assume capacity. A person is presumed to be able to make their own decisions unless it's proved otherwise.
2. Support first. Everything practicable must be done to help someone make their own decision before concluding they can't.
3. Unwise is not incapable. A person has the right to make a decision others think is eccentric or unwise.
4. Best interests. Any decision made for someone must be in their best interests.
5. Least restrictive option. The choice should be the one that least restricts their rights and freedoms.

Capacity is decision-specific and time-specific. Someone may have capacity to choose what to have for lunch but need more support to decide about a house sale. This matters: it protects the right to keep making decisions for as long as possible.

Planning ahead

Putting a few simple things in place while capacity is not in doubt is one of the kindest gifts you can give yourself and your family. It means your wishes are known and respected, even if a time comes when you can no longer speak for yourself.

Lasting Power of Attorney (LPA)

An LPA lets you choose one or more people (your attorneys) to make decisions on your behalf if you are no longer able to. There are two types, and most people set up both:

• Property and financial affairs LPA paying bills, managing bank accounts, selling property.
• Health and welfare LPA where you live, your medical treatment, day-to-day care.

You can make an LPA yourself through the Office of the Public Guardian at gov.uk/power-of-attorney , or ask a solicitor to help. You must have mental capacity at the time you make it, which is why doing it early matters.

Advance decisions and advance statements

An advance decision (sometimes called a living will) lets you refuse specific medical treatments in the future. If written correctly, it is legally binding on doctors.

An advance statement is different. It sets out your wishes, preferences and values the food you like, the music that soothes you, whether you prefer a bath or a shower, your faith, the people who matter. It is not legally binding, but it must be taken into account when decisions are made for you.

Wills

If you don't already have a will, consider making one while your wishes are clear. A solicitor can help, and Age UK runs a free wills service in some areas.

Benefits you may be entitled to

A diagnosis of dementia often opens up benefits that help with the extra costs of care. Many people miss out simply because they don't know to apply. These are the main ones to look at.

Attendance Allowance (state pension age and over)

A non-means-tested benefit for people over state pension age who need help looking after themselves because of illness or disability. It is not affected by savings or income, and what you spend it on is up to you.

Personal Independence Payment (PIP) (under state pension age)

PIP helps with the extra costs of a long-term health condition or disability if you are between 16 and state pension age. Again, it is not means-tested.

Carer's Allowance

If you care for someone for at least 35 hours a week and they receive a qualifying disability benefit, you may be entitled to Carer's Allowance. There is an earnings limit, and it can affect other benefits, so it's worth a short phone call to Citizens Advice before you claim.

Pension Credit

If you are over state pension age and on a low income, Pension Credit tops up your weekly income and opens the door to other help, including housing costs, Council Tax and a free TV licence (for over-75s).

Other benefits worth checking

• Universal Credit (for carers under state pension age)
• Housing Benefit / help with housing costs
• NHS Low Income Scheme, help with dental, optical and travel costs
• Warm Home Discount and Winter Fuel Payment

Council Tax, Blue Badge and other everyday help

Council Tax discount or exemption

Many people with dementia are entitled to a Council Tax reduction . If someone has been medically diagnosed as severely mentally impaired (the legal term used on the form) and receives a qualifying benefit, they are disregarded for Council Tax.

• If they live alone, the bill can be removed entirely.
• If they live with one other adult, there is usually a 25% discount.
• This can often be backdated to the date of diagnosis.

Suffolk residents can apply through East Suffolk Council. Ask your GP or memory clinic to sign the medical part of the form.

Blue Badge

People with dementia who have significant difficulty walking, or who experience overwhelming psychological distress in busy places, may be eligible for a Blue Badge. Apply online at gov.uk/apply-blue-badge .

Disabled Facilities Grant

A means-tested grant from your local council to help pay for home adaptations, grab rails, a walk-in shower, a stair lift, so someone can stay safely in their own home.

Direct Payments

If the council has agreed to fund care, you can ask for it as a Direct Payment and arrange the care yourself, rather than accepting the council's choice of provider.

NHS Continuing Healthcare (CHC)

If someone's needs are mainly health needs rather than social care needs, their care can be fully funded by the NHS , whether at home or in a care home. This is called Continuing Healthcare.

CHC is not means-tested. It does not matter how much money or savings the person has. It is assessed against the nature, intensity, complexity and unpredictability of their needs.

Many families never hear about CHC, or are told they will not qualify without a proper assessment. You have the right to ask the NHS for a checklist assessment. If you are refused, you can challenge the decision. Age UK and Dementia UK both publish excellent plain-English guides.

If something goes wrong

Everyone has the right to good, respectful care. If that isn't happening, there are things you can do.

• NHS care: speak first to the service involved. If that doesn't resolve things, contact PALS (Patient Advice and Liaison Service) at the hospital or trust. After that, you can complain to the Parliamentary and Health Service Ombudsman.
• Council-funded social care: follow the council's complaints process first, then go to the Local Government and Social Care Ombudsman.
• Care homes and home care agencies: raise concerns with the provider, and if they aren't resolved, with the Care Quality Commission (CQC).
• Discrimination: the Equality Advisory and Support Service (EASS) gives free advice on Equality Act issues.

Complaining isn't rude, it's how services get better for the next family.

Useful contacts

Some of the organisations we most often point people towards:

• Alzheimer's Society Dementia Support Line 0333 150 3456, alzheimers.org.uk
• Dementia UK Admiral Nurse Helpline 0800 888 6678, dementiauk.org
• Age UK Advice Line 0800 678 1602, ageuk.org.uk
• Citizens Advice 0800 144 8848, citizensadvice.org.uk
• Carers UK 0808 808 7777, carersuk.org
• Suffolk Family Carers 01473 835477, suffolkfamilycarers.org
• Office of the Public Guardian (LPAs) 0300 456 0300, gov.uk/power-of-attorney
• Care Quality Commission 03000 616161, cqc.org.uk

This page offers general information, not legal or financial advice. Rules and benefit rates change, please check the latest details on gov.uk or ring one of the helplines above before acting on anything important.