There is support for everyone affected by dementia, including carers.
- Who is a carer?
- Caring for someone with dementia
- How to find local support?
- How can the local council, authority or trust help?
- Dementia organisations
- Sources of support for people with specific forms of dementia
- Organisations for carers
- Organisations for older people
- Accommodation, housing and care homes
- Help finding care providers
- Legal and financial information and advice
- Emotional support and mental health
- Other useful contacts
Support for people affected by dementia
This booklet is for people affected by dementia, including family, friends and carers. It lists organisations offering help, advice, information and support.
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. 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 someone becomes another person’s carer.
Care workers, support workers and personal assistants are different from unpaid 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.
Caring for someone with dementia
People who provide 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.
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 groups.
National and local charities can provide advice and signpost you to other organisations that can help. Many of the organisations in this booklet 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 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 https://www.nhs.uk/service-search for details of GP surgeries and hospitals in your area.
- Alzheimer’s Society – the Dementia Connect Service for England, Wales and Northern Ireland can be contacted on 0333 150 3456 or email firstname.lastname@example.org. The helpline offers information, support, guidance and signposting to other appropriate organisations.
- Alzheimer Scotland provides the Scottish Dementia Helpline on 0808 808 3000 or email email@example.com 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. The 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. They can be contacted on 02896 931 555
- 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 or email firstname.lastname@example.org
- Guideposts has services for people with long-term or degenerative conditions, including dementia. Call 0800 048 7035.
- 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.
Sources of 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)
- posterior cortical atrophy (PCA)
- primary progressive aphasia (PPA)
- familial Alzheimer’s disease (FAD)
- familial frontotemporal dementia (fFTD
For support and help regarding a diagnosis you can email email@example.com or call 020 3325 0828. Leave a message and you will be referred to the most appropriate team member.
- The charity also provides regular support group meetings, newsletters, telephone contact networks and access to specialist information and advice.
- The Lewy Body Society offer information about dementia with Lewy bodies (DLB) and can signpost you to other organisations that can help. Call 01942 914000 or email firstname.lastname@example.org
- Parkinson’s UK offers support and information for people with Parkinson’s disease, dementia in with Lewy bodies (DLB). 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 or email email@example.com
- 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 or email firstname.lastname@example.org
- YoungDementia UK gives information, advice and support for people under 65 diagnosed with dementia, their family and friends. Call 01865 794311 or email email@example.com
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 or 0292 0090 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 or email firstname.lastname@example.org.
- 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.
- Together in dementia everyday (TIDE) is a UK wide network connecting carers and former carers of people with dementia to create real change together. England 0151 237 2669 or Scotland 0141 353 5607 or email email@example.com
- 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.
Organisations for older people
- The Age UK advice line, 0800 678 1602, 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 055 6112 for all UK enquiries, 0800 022 3444 in Wales, 0808 808 7575 in Northern Ireland, 0800 124 4222 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 or email firstname.lastname@example.org
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 or email email@example.com
- The Elderly Accommodation Counsel helps older people make choices about housing and care. They run the FirstStop Advice service which offers advice and information to older people, their families and carers about housing and care options. Call 0800 377 7070 or email firstname.lastname@example.org
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).
Legal and financial information and advice
- The Citizens Advice website provides advice on a wide range of subjects including finance, benefits, legal rights and healthcare. You can search on the website for your nearest Citizens Advice, or call one of the numbers below for details. In England or Northern Ireland call 0344 411 1444. In Wales call 0344 477 2020. Scotland has its own website, or you can call 0800 028 1456
- The Office of the Public Guardian is the government body responsible for protecting people living in England and Wales who lack the mental capacity to make 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 this office. Call 0300 456 0300.
- The Office of Care and Protection (which covers Northern Ireland) can be contacted by phoning 0300 200 7812.
- The Office of the Public Guardian (for Scotland) can be contacted on 01324 678398.
- Solicitors for the Elderly (SFE) is an independent, national organisation of lawyers who specialise in areas of law concerning later-life issues, including making wills, living wills, powers of attorney, managing assets and funding care. For help finding a solicitor, visit their website or call 0844 567 6173
- Society of Later Life Advisers (SOLLA) puts people in contact with accredited financial advisers with expertise in later life financial needs. Call 0333 202 0454.
- Beacon CHC 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). Call 0345 548 0300.
- Shelter offers legal services, support and advice to anyone experiencing housing issues or facing homelessness. Their helpline is 0808 800 4444 and they have an emergency helpline too, 0808 1644 660.
- 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 in regard to leaving work. Call 0300 123 1100.
- Advice UK is an online hub signposting to organisations advising on benefits, legal matters, financial and other issues.
- LawWorks connects volunteer lawyers with people in need of legal advice who are not eligible for legal aid and cannot afford to pay.
- 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‘ that you may find useful.
There are also some helpful resources here.
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 0344 800 0550
- 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 003 0396.
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 1111.
- The Disabled Living Foundation advises on daily living aids and assistive technology for people with disabilities including those caused by dementia. Call 0300 999 0004.
- 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.
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