Support for people affected by dementia

There is support for everyone affected by dementia, including carers.

People with dementia and those close to them may have many questions, worries and concerns. The organisations listed here can help by answering those questions and providing support and information.

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Who is a carer?

A carer is anybody who provides care or support for someone who needs help because of an illness or disability. They might be a partner, relative, friend or neighbour.

Many carers feel they are doing what anyone else would in the same situation by being there for their relative or friend. All the care they give is unpaid, although they may be eligible for certain benefits. Anyone of any age can become a carer, and there is not always a clear-cut point when this happens.

Care workers, support workers and personal assistants are different from carers. These are people who 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.

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Finding local support

Your GP 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 singing groups.

National and local charities can provide advice and can signpost you to other organisations that can help. Many of the organisations listed here will also be able to help you find local contacts.

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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 to anyone with care and support needs. There is also a carer’s assessment that assesses the needs of carers. 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 at www.gov.uk/find-your-local-council. The website also has information on topics such as benefits, tax and pensions. Visit www.nhs.uk for details of GP surgeries and hospitals in your area.

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Dementia-specific organisations

  • Alzheimer’s Society – their National Dementia Helpline for England, Wales and Northern Ireland can be contacted on 0300 222 1122. The helpline offers information, support, guidance and signposting to other appropriate organisations.
  • Alzheimer Scotland provides the Scottish Dementia Helpline (0808 808 3000) as well as local services all over Scotland for people with dementia and their carers.
  • The Wales Dementia Helpline offers help and support to people with dementia in Wales, their carers, family members or friends. Their helpline number is 0808 808 2235.
  • Dementia NI (02890 686 768) campaigns to raise awareness of dementia and provides training and education on living well with the condition. It has groups around Northern Ireland helping people with dementia to meet and support each other.
  • Dementia UK provides mental health nurses who specialise in dementia, called Admiral Nurses. They provide practical and emotional support to families affected by dementia, as well as advice on referrals to appropriate services, and can liaise with other healthcare professionals on your behalf. To find out if Admiral Nurses are available in your area, you can call their helpline on 0800 888 6678.
  • Guideposts has services for people with long-term or degenerative conditions, including dementia. Call 0300 222 5709.
  • Culture Dementia UK supports carers and people with dementia among the BAME community. Call 0800 014 8682.
  • AT Dementia provides information about assistive technology for people with dementia. Assistive technology can be any device or system that helps someone perform a task. This includes devices like calendar clocks, automatic lighting and fall sensors.

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Support for people with specific forms of dementia

  • Rare Dementia Support runs specialist support services for people living with, or affected by, five rare dementias. For support and help regarding a diagnosis, call:
    • frontotemporal dementia (FTD) – 07341 776 317
    • posterior cortical atrophy (PCA) – 07388 220 324
    • primary progressive aphasia (PPA) – 07388 220 355
    • familial Alzheimer’s disease (FAD) – 07388 220 323
    • familial frontotemporal dementia (fFTD – 07592 540 555

    Rare dementia support also provides regular support group meetings, newsletters, telephone contact networks and access to information and advice. For general enquiries email contact@raredementiasupport.org. For support groups contact Laura King: laura.king@ucl.ac.uk

  • The Lewy Body Society and Parkinson’s UK both offer support and information about dementia with Lewy bodies (DLB). As well as supporting people with Parkinson’s disease, Parkinson’s UK can also help with questions about Parkinson’s dementia. They also provide care and benefits advice, and they have Parkinson’s disease specialist nurses who provide medical advice. For any of these conditions, you can contact a helpline advisor on 0808 800 0303.
  • The PSP Association helps people with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). It offers advice, support and information to people living with these conditions. You can call their helpline on 0300 0110 122.
  • YoungDementia UK gives information, advice and support for people under 65 diagnosed with dementia, their family and friends. Call 01865 794311.

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Organisations for carers

  • Carers Direct has a national helpline service for carers, offering confidential information and advice. This service is part of the NHS and can be contacted on 0300 123 1053. A webchat is available on the website.
  • The Carers Trust, previously The Princess Royal Trust for Carers and Crossroads Care, provides access to breaks for carers, information and advice, training and employment opportunities. Call 0300 772 9600 (02920 090 087 for Wales, 0300 772 7701 for Scotland).
  • Carers UK provides advice and information to carers, including advice on benefits and accessing care and support. This is available through the website, booklets, factsheets and their Adviceline, 0808 808 7777.
  • Care Information Scotland is a telephone and website service, offering information about care services for older people in Scotland. This service is funded by the Scottish government and run by NHS 24. Their helpline number is 0800 011 3200.
  • The Counselling Directory brings together the information required to help people find a qualified counsellor or psychotherapist in their local area. Please note, the professionals listed on this website will charge for their services.
  • There are a number of websites providing help and advice for young carers. These include:
    Young carers hub (NHS Choices)
    Young carers (Barnardos)
    Include programme (Children’s Society)
    Action for Children.

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Organisations for older people

  • The Age UK advice line, 0800 169 2081, offers information and advice, services, products and training for older people. Local services can include: information, advice and advocacy services; day centres and lunch clubs; home help and ‘handyperson’ schemes; IT and other training. (0800 022 3444 in Wales, 0808 808 7575 in Northern Ireland, 0800 12 44 222 in Scotland).
  • Independent Age provides information and advice for older people, their families and carers. They focus on advice regarding social care and support, healthcare, mobility issues, money and benefits. The helpline can give advice on home care, care homes, NHS services and housing. Their helpline number is 0800 319 6789.
  • The Silver Line offers confidential telephone support for older people including emotional support, information, advice and friendship schemes. Call 0800 470 8090.

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Accommodation, housing and care homes

  • The Relatives and Residents Association provides information and support to family and friends helping their loved ones move into a residential home. They can also advise if you have concerns about care in a residential home. You can call their helpline on 0207 359 8136.
  • The Elderly Accommodation Counsel helps older people make choices about housing and care. They run the FirstStop Advice service. This service, on 0800 377 7070, offers advice and information to older people, their families and carers about housing and care options.

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Help finding care providers

There are a large number of care providers. Some agencies will offer care through the local council, as well as privately.

A good place to start looking for services is the Care Quality Commission. They are the regulator for health and social care services in England. There are equivalent regulators in the other countries of the UK. 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. Call them on 03000 616 161 (0300 790 0126 for the equivalent regulator in Wales, 0289 536 1111 in Northern Ireland, 0345 600 9527 in Scotland).

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Emotional support and mental health

  • Mind provides information and advice on mental health problems and accessing support and treatments. As well as its Infoline (0300 123 3393), Mind has local teams that offer support including advocacy and counselling services. They also have a legal line (0300 466 6463) that offers information and general advice on mental health law and rights.
  • Scottish Association for Mental Health (SAMH) has over 60 services across Scotland providing mental health, addiction, homelessness and employment services. Call 0141 530 1000.
  • Inspire (Northern Ireland) offers a range of services providing support to people with mental health problems in the country. Call 02890 328 474.
  • Cruse Bereavement Care offers support, advice and information to people when someone dies, through their helpline, 0808 808 1677. They also provide training for those who may encounter bereaved people in the course of their work. They have a website specifically for children and young people. A separate helpline operates in Scotland, on 0845 600 2227.
  • You can contact the Samaritans on 116 123 at any time about anything that’s troubling you, no matter how small. This could be loss of a friend or a family member through bereavement, financial worries, loneliness and isolation, depression or painful/disabling physical illness.
  • Relate is the UK’s largest provider of support for people experiencing a range of relationship problems, offering counselling and therapy over the phone, online and in person. They charge for some of their services. Call 0300 00 30396.

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Other useful contacts

  • The British Red Cross can help people following a short stay in hospital by providing extra support and care at home. Call 0344 871 11 11.
  • The Disabled Living Foundation advises on daily living aids and assistive technology for people with disabilities including those caused by dementia. Call 0300 999 00004.
  • Tourism for all helps to make travelling and tourism (both abroad and within the UK) accessible for everyone regardless of illness or disability. Call 0845 124 9971.

This information was written in July 2018 and is due for review in July 2020. Please contact us if you would like a version with references.

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