It’s wonderful to have someone who understands the challenges associated with this illness - to have them there at the end of an email to share occurrences.
- Miranda, whose husband Peter was diagnosed with frontotemporal dementia, aged 62
Sharing your thoughts with someone who understands your situation can be extremely helpful. We have listed some of the websites and forums we know about that allow you to chat and make connections. If you know of others that younger people and their families could find useful, please let us know via email. Please take care to keep your personal information secure when communicating with people you meet online.
A specific section of the Society’s online forum for younger people with dementia and family members.
A UK-based Facebook group helping to spread awareness and share issues. A closed group and is for people of all ages, but you can join if you or one of your family or friends has a form of dementia.
Runs weekly online peer-to-peer support groups. For more information email firstname.lastname@example.org
An open Facebook group sharing information for anyone diagnosed with a dementia, their families, caregivers and professionals. Run by Chris Roberts who is living with young onset dementia.
Run 5-6 virtual social gatherings a month for people living with dementia, it is like attending a social group but from the comfort of your own home.
A Facebook group for people aged under 21 who have a family member affected by young onset dementia.
Memory for Two
A Facebook group set up to share helpful tips, ideas and suggestions primarily about young onset dementia. For people with a positive outlook.
Posterior Cortical Atrophy awareness
A closed Facebook group for people whose lives are affected by Posterior Cortical Atrophy (PCA).
Too Young For Dementia
An online support network for young adults 18 - 35, who support / care for a parent with young onset dementia. It aims to connect young adults in similar situations to provide support and learn from each other.
tide (together in dementia everyday)
tide offer a number of online groups to help keep carers connected. Their UK-wide young onset carers group meet (virtually) on the first Tuesday of every month at 10am. They provide a safe space for family carers to share their experiences. The group is free to attend for tide members.
Young Adult Children with Parents with Younger-Onset Alzheimer's / Dementia
Facebook group based in the United States.
Young Dementia Oxfordshire Community Group
A private Facebook group, exclusively for Young Dementia Oxfordshire members or for people who live outside Oxfordshire but are supporting a person affected by young onset dementia in the area. The group can be used to seek advice and information from others, to share personal stories and experience, to converse with others in similar situations and to post useful and interesting things that may be helpful.
Young Onset Dementia & Alzheimer's
Facebook group originally for people in the Calderdale area, but has grown to provide a place where people living with young onset dementia can share what they are going through and support one another.
Young Onset Dementia Support Group
An Australian Facebook based support group that provides an opportunity for people who are experiencing the impact of dementia before the age of 65 to share stories and support.
You will also find a list of young onset dementia blogs and websites in our Resources section which may also be of interest.