Getting support is often the first step and most important step after a diagnosis of early onset dementia. Support can take many forms, from charities and organisations who can help you access services in your area, to peer to peer groups who can provide emotional and practical support from other people who are in similar situations.
We have published a list of some of the main groups operating locally and nationally below. The Alzheimer’s Society also manages a database of over 5000 services, including local support groups, which can be found through their Dementia Connect services search tool.
We have also created information for people living in the South West London region which is available to read or download in our Your guide to local support section.
The Alzheimer’s Society
The Alzheimer’s Society offers support and information for all areas of the UK for carers and people with dementia. You can use their Dementia Connect services search tool to find support services available in your area.
The Alzheimer’s Society support forum covers a wide range of topics for people with dementia and their families, friends and carers. The support forum is an online community of people with dementia and their carers and families to share experiences, to read about how others have dealt with difficult situations and to raise questions. The Alzheimer’s Society also runs the National Dementia Helpline on 0300 222 1122.
Dementia UK is a charitable organisation which runs the Admiral Nurse service. They offer support and and guidance for people with dementia and their carers. They offer a helpline service on 020 7874 7200. For more information please contact firstname.lastname@example.org. You can also search for services in London and the South East.
YoungDementia UK provides information, advice and support for people under 65 diagnosed with dementia, their family and friends. They have a list of Young Dementia UK support groups and services available for London and the South East.
Familial Alzheimer’s Disease (FAD)
The FAD support group is for families affected by autosomal dominantly inherited Familial Alzheimer’s Disease (FAD). The group offers information, advice and social opportunities for people with familial Alzheimer’s disease and their families. For more information please contact email@example.com.
Frontotemporal Dementia Support Group
The Frontotemporal Dementia Support Group (formerly The Pick’s Disease Support Group) is for carers who are coping with behavioural changes due to frontotemporal dementia. For more information please contact firstname.lastname@example.org or call 07592 540555.
The group also runs the Ftdtalk website providing jargon free research updates for the whole frontotemporal dementia community.
The Lewy Body Society
The Lewy Body Society, in partnership with Parkinson’s UK, provides support and advice to people with Dementia with Lewy bodies, their families and carers. The Lewy Body Society also has a Facebook site. You can talk to a helpline advisor on 0808 800 0303.
Posterior Cortical Atrophy Support Group
The Posterior Cortical Atrophy Support Group provides information and support to people with posterior cortical atrophy, and their families, friends and healthcare professionals. For more information please contact email@example.com.
Primary Progressive Aphasia (PPA) Support Group
The Primary Progressive Aphasia (PPA) Support Group offers people with PPA and their families the opportunity to meet and share their experiences. For more information please contact Jill Walton on firstname.lastname@example.org.
Progressive Supranuclear Palsy (PSP) Association
The Progressive Supranuclear Palsy (PSP) Association helps people with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). They offer advice, support and information to people living with PSP and CBD. They can be contacted on 0300 0110 122.
Therapy Directory is a national database of professional therapists – including occupational therapists. Occupational therapists are trained to find solutions to everyday difficulties. Therapy Directory provides detail on the type of support an occupational therapist could offer. They can be contacted on 0844 8030 245 or online, here. All therapists listed have provided their qualifications and insurance cover or proof of membership with a professional body.
Most of the national charities will usually offer some type of local support group or service in your area. Your local Alzheimer’s Society will be able to signpost you to these groups or you can use their Dementia Connect services search tool to find support services available locally. Staff at your local Alzheimer’s Society branch will also be able to signpost you to the most appropriate support groups.
To find out about the support groups available in your area we have created guides for people living in South West London which is available to read or download in our Your guide to local support section.
If you are caring for or supporting a person with young onset dementia you can contact one of the national dementia charities listed above or a specialist organisation specifically helping carers.
The Carers Trust
The Carers Trust works to improve support, services and recognition for both professional carers and anyone caring for family members or friends. They can be contacted on 0844 800 4361.
Carers UK provides advice and information to carers. This is available through the website, booklets, fact sheets and their Adviceline. They can be contacted on 0808 808 7777.
Carers Direct offers a national helpline for carers. The service is confidential and offers a range of information and advice for carers. They can be contacted on 0300 123 1053. Carers Direct provide a webchat service between 9am – 6pm Monday to Friday on the website.
The Guideposts Trust runs the Dementia Information Service provides information, advice and support to carers. They can be contacted on their National Information Line 0845 120 4048.
Counsel and Care
Counsel and Care is a charity giving advice and information to older people and their carers across the UK. They can be contacted on 0845 300 7585.
Other sources of help and support
Your local authority may offer services and support to carers. You can search for the contact details of your local authority on gov.uk.