Support for people affected by dementia: organisations that can help
Dementia information
On this page you’ll find information and contact details for helpful UK based organisations that provide information, care and support for people with dementia, their carers and loved ones.
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Support for people affected by dementia
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Living with dementia
Emergency support and respite care
If you need urgent help now
Every council has a duty to provide emergency care if a primary carer is suddenly unable to provide care. Contact your local council’s Adult Social Care team. During evenings and weekends, ask for the Emergency Duty Team.
If there is an immediate risk to someone’s safety, call 999.
The Carers Trust offers emergency planning services and local grants to help fund short-term respite breaks for carers who need support.
Dementia UK provides an Admiral Nurse Dementia Helpline, offering specialist advice for families facing a sudden crisis or challenging behaviour.
Alzheimer’s Society offers a Dementia Support Line to help you navigate local emergency respite options and social care rights.
Who is a carer?
A carer is anybody who provides care for someone who needs help because of an illness or disability. They might be:
- a partner, relative, friend or neighbour, known as informal carers
- or paid professionals, known as formal carers.
Many informal carers feel they are doing what anyone else would in the same situation by being there for their relative or friend. Although the care they give is unpaid, they may be eligible for certain benefits.
Anyone of any age can become an informal carer.
There is not always a clear-cut point when someone becomes another person’s carer.
Formal carers such as care workers, support workers and personal assistants are different from unpaid carers. It is their job, and they are paid for a specific service.
This might be for domestic tasks like cleaning or shopping, or help with personal care, such as washing, dressing, or managing medication.
Caring for someone with dementia
People who provide unpaid care or support for someone with dementia may experience a range of different feelings.
Caring for someone can be rewarding. You may be supporting someone you love very much and may gain new skills and build closer relationships in the process.
But caring can also be challenging. At times it may be physically and mentally exhausting, and the needs of a person with dementia will usually increase over time.
It’s important that carers access support for themselves and those they care for when they need it and know that they are not alone.
There is a range of support available for people affected by dementia, including carers.
Often people affected by dementia have many questions, worries and concerns. The organisations listed on this page can help to answer those questions as well as provide support and information.
Finding local support
Your GP surgery and local council should be able to help you find local sources of support.
As well as medical and social care support, there may be other helpful services in your area, such as befriending services, memory cafés, and social and peer support groups.
National and local charities can provide advice and signpost you to other organisations that can help. Many of the organisations below will also be able to help you find local contacts for services available in your area.
Help from your local council, authority or trust
In England, your local council has a duty under the Care Act (2014) to carry out, when requested, a care needs assessment for anyone with care and support needs.
There is also a carer’s assessment that looks at what support carers might need.
These are usually done at the person’s home, face-to-face.
You can request an assessment from your local council’s Adult Social Services Team for yourself or for someone else by phone, in writing or online.
In Scotland, Wales and Northern Ireland, carers and those they care for are also entitled to a needs assessment.
- In Scotland and Wales, contact your local council's Social Services office.
- In Northern Ireland, contact your local Health and Social Care Trust.
A GP or hospital doctor can also arrange an assessment for you.
The assessments will find out if someone is eligible and which care and support services they need.
Support may include:
- help in the home
- adaptations and equipment
- help with personal care
- access to day centres
- residential or respite/replacement care.
After a care needs assessment, a care plan should be agreed and written up. You can request a copy of your care plan in writing.
The local council has a duty to meet a person’s needs when they are eligible. However, they can charge for services.
A financial assessment is used to determine whether charges are made or not. The council should provide a breakdown of how they calculate any costs.
Find your local social services department number in the phone book or online. The website also has information on topics such as benefits, tax and pensions.
Dementia-specific support
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UK-wide support and information
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Alzheimer’s Research UK
Alzheimer’s Research UK is the UK’s leading dementia research charity and offers free information about dementia.
You can order free booklets about dementia diagnosis, symptoms, risk, treatments, and taking part in research.
The Dementia Research Infoline can answer your questions about dementia and dementia research and can help you to take part in dementia research studies across the UK.
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Dementia UK
Dementia UK is a specialist dementia nurse charity. Their nurses, called Admiral Nurses, provide ongoing support to families facing dementia. The Admiral Nurses:
- offer tailored clinical advice
- provide practical and emotional support
- advise people about benefits and financial issues
- help build links with other health and care professionals.
Alongside their free Helpline they also offer video calls via their virtual clinics service.
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Guideposts Trust
Guideposts has support services for people with long-term or degenerative conditions, including dementia.
Local dementia support in England, Wales and Northern Ireland
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Alzheimer's Society
Alzheimer's Society provides practical care advice and emotional support for people with dementia, carers and anyone affected by dementia across England, Wales and Northern Ireland. They can help you find local dementia groups offering activities and support. They also provide legal and financial information about dementia care.
Their Dementia Connect support service offers information, support, guidance and signposting to other organisations.
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Wales Dementia Helpline
This service offers help and support to people with dementia, their carers, family members or friends living in Wales.
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Dementia NI
Dementia NI campaigns to raise awareness of dementia and provides training and education on living well with the condition.
They have groups around Northern Ireland helping people with dementia to meet and support each other.
Local dementia support in Scotland
Support for specific types of dementia
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The Lewy Body Society
The Lewy Body Society offer information about dementia with Lewy bodies (DLB) and can signpost you to other organisations that can help.
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Parkinson’s UK
Parkinson’s UK can help with questions about dementia in Parkinson’s disease and dementia with Lewy bodies.
They can also provide care advice, emotional support, financial and legal information.
They also have Parkinson’s disease specialist nurses who provide medical advice and support.
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The Young Dementia Network
The Young Dementia Network is hosted by Dementia UK.
It is a free-to-join influencing community of people with young onset dementia, their families and professionals from health and social care, and the voluntary sector.
Members work to improve support through creating resources, sharing information, offering opportunities for involvement and collaboration, and promoting a better understanding of young onset dementia.
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The PSP Association
The PSP Association helps people with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) which are rare causes of dementia.
They offer advice, support and information to people living with these conditions.
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Rare Dementia Support
Rare Dementia Support runs specialist support services for people living with, or affected by, five rare dementias.
- frontotemporal dementia (FTD)
- posterior cortical atrophy (PCA)
- primary progressive aphasia (PPA)
- familial Alzheimer’s disease (FAD)
- familial frontotemporal dementia (f-FTD)
The charity also provides regular support group meetings, newsletters, telephone contact networks and access to specialist information and advice.
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Down’s Syndrome Association
People with Down’s syndrome have a higher risk of developing dementia, particularly Alzheimer’s disease, at a younger age.
The Down’s Syndrome Association provides information, advice and resources for people with Down’s syndrome, their families and supporters, including guidance on dementia, diagnosis, and changes in support needs.
Organisations for carers
The organisations in this section offer help and advice on finding and paying for care, legal and financial information about care and support for carers, including replacement care (respite care).
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Carers Direct
Carers Direct provides a confidential national helpline service for carers, providing information and advice. This service is run by the NHS.
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Care Information Scotland
Care Information Scotland offers information about care services for people in Scotland. This service is funded by the Scottish government and run by NHS 24.
The website includes a ‘Find my council’ section so you can locate services local to you.
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TIDE (together in dementia everyday)
TIDE provides support for dementia carers and past carers, providing a carer development programme, an opportunity to join up with other carers and also champion the rights of carers within the UK.
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Carers UK
Carers UK provides advice and information to carers, including advice on benefits and accessing care and support available through their website, booklets, factsheets and Carers UK’s Adviceline.
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Carers Trust
Carers Trust provides access to breaks for carers, information and advice, training and employment opportunities.
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Down’s Syndrome Association
People with Down’s syndrome have a higher risk of developing dementia, particularly Alzheimer’s disease, at a younger age.
The Down’s Syndrome Association provides information, advice and resources for people with Down’s syndrome, their families and supporters, including guidance on dementia, diagnosis, and changes in support needs.
Support for young carers
There are a number of websites providing help and advice for young carers.
Emotional and mental health support
If you are in emotional distress or despair call Lifeline on 0808 808 8000 or Samaritans on 116 123 to speak to someone immediately.
For immediate assistance ring 999.
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Samaritans
You can contact the Samaritans at any time about anything that’s troubling you, no matter how small, including:
- loss of a friend or a family member through bereavement
- financial worries
- loneliness and isolation
- depression
- painful or disabling physical illness
suicidal thoughts or intentions.
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Mind
Mind provides information and advice on mental health problems and accessing support and treatments. As well as its Infoline, Mind has local teams that offer support including advocacy and counselling services.
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Scottish Association for Mental Health (SAMH)
SAMH has over 60 services across Scotland providing mental health, addiction, homelessness and employment services.
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Inspire (Northern Ireland)
Inspire offer a range of services providing support to people with mental health problems in Northern Ireland.
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Family Action
Family Action offers free support and guidance on all aspects of family life, including relationship support previously provided by Relate.
They provide services by phone, text, online and in person. They charge for some of their services.
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Marie Curie
Marie Curie provides care and support for people living with a terminal illness, including advanced dementia, and for the people close to them.
Their services include nursing care, hospice care, emotional support, and practical information about end‑of‑life care and bereavement.
They also run a free support line for anyone affected by terminal illness, whether you are the person who is ill, a carer, family member or friend.
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Cruse Bereavement Care
Cruse Bereavement Care offers support, advice and information to people when someone dies. They also provide training for those who may encounter bereaved people in the course of their work.
There is a freephone national helpline and local services, and a website specifically for children and young people.
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Cruse Scotland
Cruse Scotland is a separate, sister charity to Cruse Bereavement Care, covering Scotland. They provide support, counselling and advice to people when someone dies.
Organisations for older people
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Age UK
Age UK offers information and advice, support services, products and training for older people. They provide local services including:
- information, advice and advocacy services
- day centres and lunch clubs
- home help and 'handyperson' schemes
- IT and other training.
Their helplines can provide information, support and advice on how to access such services.
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Independent Age
Independent Age provides information and advice for older people, their families and carers. They focus on providing advice about social care and support, healthcare, mobility issues, money and benefits.
The helpline can give advice on accessing home care, care homes, NHS services and housing.
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The Silver Line
The Silver Line offers confidential telephone support for older people including emotional support, information, advice and friendship schemes.
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AbilityNet
AbilityNet helps older people and disabled people use technology.
They offer free advice on computers, smartphones, tablets and assistive technology, which can help people with dementia and carers stay connected and access services online.
Organisations that can help with accommodation, housing, and care homes
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Care Rights UK
The Relatives and Residents Association provides information and support to family and friends helping their loved ones to move into a residential home. They can also give advice if you have concerns about care in a residential home.
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The Elderly Accommodation Counsel
The Elderly Accommodation Counsel helps older people make choices about housing and care.
They run the FirstStop Advice service. This offers advice and information to older people, their families and carers about housing and care options.
Help finding care providers
There are a large number of care providers. Some agencies will offer care through your local council, as well as privately.
A good place to start looking for services is through the Care Quality Commission (CQC).
They are the regulator for health and social care services in England. There are equivalent regulators in the other countries of the UK, contact details are listed below.
They publish reports on care homes and care services in the home (domiciliary care), that highlight the quality of care provided. You can search for local care services on their websites.
Legal and financial information and advice
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Citizens Advice
You can search their website for your nearest Citizens Advice centre, or call one of the numbers below for details.
The website provides advice on a wide range of subjects including finance, benefits, legal rights and healthcare.
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Office of the Public Guardian (OPG)
The Office of the Public Guardian is a government body that is responsible for protecting people living in England and Wales who lack the mental capacity to make their own decisions.
There are different government departments for Northern Ireland and Scotland.
The OPG is also responsible for registering Lasting Powers of Attorney (LPA) and can be contacted for any information about LPA and the application process.
You can also report concerns about an attorney or deputy to the OPG.
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Court of Protection (COP) (England and Wales)
The COP appoints and supervises deputyships for people who no longer have the mental capacity to appoint an attorney for themselves.
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Advance care planning (NHS)
Advance care planning helps people think about, talk about and record their wishes for future care, in case there comes a time when they are unable to make decisions for themselves.
This can include preferences about medical treatment, daily care, who should be involved in decisions, and what matters most to the person.
Advance care planning is not legally binding but can help professionals and family members understand and respect a person’s wishes.
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Compassion in Dying
Compassion in Dying provides free, confidential information and support to help people plan for the end of life.
They offer clear, practical guidance on topics such as advance decisions (sometimes called living wills), Do Not Attempt CPR (DNACPR), choosing a healthcare proxy, and talking to loved ones about future wishes.
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Solicitors for the Elderly (SFE)
SFE is an independent organisation of lawyers and solicitors who specialise in areas of law concerning later life issues, including making wills, living wills, powers of attorney, managing assets and funding care.
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Society of Later Life Advisers (SOLLA)
SOLLA puts people in contact with accredited financial advisers with expertise in later life financial needs.
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Beacon CHC
Beacon provides advice for people who are applying for NHS continuing healthcare funding, a type of funding where the NHS pays for a person’s social care package.
There are lots of resources on Beacon’s website that can help, and they also provide up to 90 minutes of free telephone advice (after which fees apply).
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Shelter
Shelter offers legal services, support and advice to anyone experiencing housing issues or facing homelessness.
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ACAS
ACAS provides independent advice and information on rights in the workplace, including advice for people with illnesses and disabilities and carers who are in work, who may need extra support from their employer, need to take leave, reduce hours, or consider their options if they wish to leave work.
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Advice UK
An online hub signposting to organisations advising on benefits, legal matters, financial and other issues.
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LawWorks
Connects volunteer lawyers with people in need of legal advice who are not eligible for legal aid and cannot afford to pay.
Other useful contacts
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British Red Cross
The British Red Cross can help people following a short stay in hospital by providing extra support and care at home.
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Disabled Living Foundation
Disabled Living Foundation advises on daily living aids and assistive technology for people with disabilities including those caused by dementia.
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Royal National Institute of Blind People (RNIB)
RNIB provides information and support for people with sight loss, including advice for people living with both dementia and visual impairment.
This includes help with communication, adapting the home environment, and using assistive technology.
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RNID (formerly Action on Hearing Loss)
RNID offers support and information for people who are deaf or have hearing loss, including practical advice for people with dementia and hearing impairment.
This includes communication tips, technology advice and guidance for families and carers.
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Tourism for all
Tourism for all helps to make travelling and tourism (both abroad and within the UK) accessible for everyone regardless of illness or disability.
Downloads
Dementia information
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PDF, 4.5 MB, 21 pages
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PDF, 1.5 MB, 17 pages
Order health information
Alzheimer's Research UK has a wide range of information about dementia. Order booklets or download them from our online form.
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This information was updated in June 2026 and is due for review in June 2028. It was written by Alzheimer's Research UK's Information Services team with input from lay and expert reviewers. Please get in touch if you'd like a referenced copy.
This information is produced with support from The Perfume Shop who had no input into the content.
