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.
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 firstname.lastname@example.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.
What is young onset dementia?
Dementia is described as ‘young onset’ when symptoms develop before the age of 65, usually between 30 to 65 years of age