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 isan 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.
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@example.com. 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 leafletabout 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, ‘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.