Find support

The Young Dementia Network is a collaboration between people affected by and working in the field of young onset dementia. It works to increase knowledge, understanding and awareness of young onset dementia and is an online community of over 4500 people. It connects and signposts services but does not directly provide a support service.

Our hosts, Dementia UK, and a number of our member organisations provide support and information around young onset dementia. Find out more about the ways they may be able to help you below.

Dementia UK
dementiauk.org
Dementia UK has a young onset dementia section on its website providing information about:

  • young onset dementia
  • getting a diagnosis
  • facts and figures
  • living with and adapting to the condition
  • resources including books, films and blogs
  • personal stories from people affected by young onset dementia
  • accessing support – the site contains a unique searchable database which lists young onset dementia support groups and services across the UK

They have a growing series of young onset dementia-related advice leaflets covering topics such as young onset dementia symptoms, getting a diagnosis, next steps after diagnosis, employment, finance, menopause, choosing a care home and supporting children. To download these advice leaflets, click here.

Their dementia specialist Admiral Nurses are available if you would like practical or emotional support around young onset dementia; call their Helpline on 0800 888 6678 (Monday to Friday 9am-9pm, Saturday and Sunday 9am-5pm) or email helpline@dementiauk.org. Or you can book a phone or video call appointment with an Admiral Nurse, please visit dementiauk.org/book-a-clinic-appointment

Alzheimer’s Research UK
alzheimersresearchuk.org
The leading Alzheimer’s research charity aiming to find a cure for dementia. Their website provides information about young onset dementia and links to a detailed leaflet about the condition. It also has a section dedicated to teaching children about dementia, click here.

Alzheimer’s Society
alzheimers.org.uk
Offers useful factsheets and publications about young onset dementia, including a guide to understanding your diagnosis. Their website has a dementia directory listing local support groups and services, plus an online forum, Talking Point, where you can connect to others affected by young onset dementia.

Dementia Carers Count
dementiacarers.org.uk
Dementia Carers Count provides free support courses for family and friends caring for someone with dementia, including young onset dementia. To find out more about their services, or to book onto a course or a Live Online Learning session please visit their website.

Rare Dementia Support
raredementiasupport.org
Rare Dementia Support aims to empower, guide and inform everyone affected by rare dementias including posterior cortical atrophy (PCA), primary progressive aphasia (PPA), familial Alzheimer’s disease, frontotemporal dementia (FTD), familial frontotemporal dementia and Lewy body dementia. They provide specialist support through group meetings that bring people together to share their experiences, newsletters and direct support by email and telephone.

tide
tide.uk.net
tide, ‘together in dementia everyday’, believes that carers and former carers have the experience and knowledge to improve health and social care, research, and policy development throughout the UK. They offer a number of online groups including a young onset dementia carers group which meets monthly, providing a safe space for family carers to share their experiences.