Find support

The Young Dementia Network is an online influencing community and works to increase knowledge, understanding and awareness of young onset dementia. It connects and signposts to services but does not directly provide support.  

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 symptoms, getting a diagnosis and next steps  
  • employment and finances 
  • supporting children when a parent has young onset dementia 
  • menopause and dementia 
  • learning disabilities and dementia 
  • choosing a care home for a younger person with dementia 
  • personal stories of 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  

Dementia UK has a growing series of young onset dementia-related advice leaflets, you can read or download them 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.