Support for carers

Being a carer can cause a mix of feelings. It can be both rewarding and challenging. If you look after someone with dementia, you may have many questions and worries.

There is support for everyone affected by dementia – this includes people who look after someone with dementia. It’s important to remember that you’re not alone. The organisations listed below provide information, support and care services to people with dementia as well as their families and carers.

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Who is a carer?

A carer is anybody who looks after a family member, friend or neighbour who needs help because of illness, frailty or disability. All the care they give is unpaid, although they may be eligible for certain benefits. Anyone, of any age, can become a carer.

Many feel they are doing what anyone else would in the same situation – looking after their relative or friend. Usually, carers don’t choose or plan to become carers. It can come suddenly out of a crisis, or it can be a role that develops slowly over time.

Care workers, support workers and personal assistants are distinct from carers. These are people who are paid for a specific service. This might be for domestic activities like cleaning or shopping, or help with personal tasks such as washing or dressing.

Finding local support

Your GP should be able to help you with local sources of support, and many of the organisations on this page will also be able to help you find local contacts. You can contact your local council or authority, which may have details of organisations in your community that can give help and support. As well as formal support services, there may be other activities in your area, such as befriending services, memory cafés or singing groups. Details of local groups like these can often be found in libraries and town halls.

Help from your local council, authority or Health and Social Services Trust

In England, your local council has a legal duty to carry out a care needs assessment once they know that someone may need help. Both carers and those they care for are entitled to a needs assessment. You can request an assessment 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.

This assessment is to find out what help and support you need. This might include:

  • healthcare
  • equipment
  • access to day centres
  • help in your home
  • residential and respite care.

The local council must then provide services to meet those needs. However, each council has its own policy about what needs it will meet. This means services can vary across the UK.

The local council can charge for the services it provides. The person needing care will be financially assessed to see what, if anything, they can contribute. The council will provide you with a breakdown of how they calculate any costs.

Find your local social services or social work department contact number in the phone book or online. 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 Scotland provides the National Dementia Helpline 0808 808 3000 in Scotland as well as local services all over Scotland for people with dementia and their carers.
  • Alzheimer’s Society provides the National Dementia Helpline in England, Wales and Northern Ireland on 0300 222 1122.  It offers information, support, guidance and signposting to other appropriate organisations.
  • 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 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. They can also provide advice on referrals to appropriate services and liaise with other healthcare professionals on your behalf. To find out if Admiral Nurses are available in your area, you can call their helpline – 0800 888 6678.
  • Guideposts provides services for people with long-term or degenerative conditions, including dementia. They also provide an online and telephone information resource called HERE which helps people to find out about support and care services. 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.

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: frontotemporal dementia (FTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), familial Alzheimer’s disease (FAD) and familial frontotemporal dementia (fFTD). They provide regular support group meetings, newsletters, telephone contact networks and access to information and advice. Contact Jill Walton, Support Group Coordinator on 07341 776 316 or contact@raredementiasupport.org.
  • The Lewy Body Society and Parkinson’s UK both provide 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. The helpline service for both is provided by Parkinson’s UK. 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 provides information, advice and support for people under 65 diagnosed with dementia, their family and friends.

Organisations for carers

  • Care Information Scotland is a telephone and website service. They provide 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.
  • Carers Direct provides 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 works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. Call 0844 800 4361.
  • Carers UK provides advice and information to carers. This is available through the website, booklets, factsheets and their Adviceline 0808 808 7777.
  • 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:
    Babble (Carers Trust online community for carers under 18)
    Young carers hub (NHS Choices)
    Young carers (Barnardos)
    Include programme (Children’s Society)
    Action for Children.

Organisations for older people

  • The Age UK advice line, 0800 169 2081, provides information about help available through social services, as well as advice about other issues faced by older people. Local services can include: information, advice and advocacy services; day centres and lunch clubs; home help and ‘handyperson’ schemes; and IT and other training.
  • Independent Age provides information and advice for older people, their families and carers. They focus on social care, welfare benefits and befriending services. The helpline can give advice on home care, care homes, NHS services and housing. Their helpline number is 0800 319 6789.
  • Solicitors for the Elderly is an independent, national organisation of lawyers who provide specialist legal advice for older and vulnerable people, their families and carers. They can help with a wide range of issues including lasting power of attorney, elder abuse and paying for care. For help finding a solicitor, visit their website or call 0844 567 6173 during office hours.

Accommodation, housing and care homes

  • The Relatives and Residents Association offers information and support to family and friends having to help 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 FirstStop Advice. This telephone service, on 0800 377 7070, offers advice and information to older people, their families and carers about housing and care options.

Commercial care providers

There is a large number of providers of care and social services. Some of these providers will offer care through local councils as well as privately.

A good place to start looking for services is the Care Quality Commission. They are the care services regulator 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), which highlight the quality of care provided. You can search for local care services on their websites. Call them on 03000 616 161.

Advice services and other help

  • Citizens Advice has a self-help website for advice on subjects such as finance, benefits, legal rights and healthcare. You can search on the main website for your nearest branch, or call them on 08444 111 444 for details. Local branches should also be listed in your phone book.
  • Cruse Bereavement Care offers support, advice and information to people when someone dies, through their freephone national 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.
  • 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.
  • Advice UK is an online hub signposting to organisations advising on benefits, legal matters, financial and other issues.
  • 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.
  • LawWorks connects volunteer lawyers with people in need of legal advice who are not eligible for legal aid and cannot afford to pay.
  • Contact the Office of the Public Guardian on 0300 456 0300 for information and advice about Lasting Power of Attorney.
  • Some solicitors provide free information on their websites about mental capacity and Lasting Power of Attorney. For example, Wright Hassall has produced a ‘Legal guide to dealing with dementia‘ which you may find useful.

This information was written in July 2016 and is due for review in July 2018. Please contact us if you would like a version with references.

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