Last Updated: August 13, 2026
Beth Britton writes about post-diagnostic support for people with young onset dementia, and shares advice from individuals who were diagnosed as a younger person.
I have long campaigned for better post-diagnostic support for people who are living with dementia, so it’s welcome that in 2022 post-diagnostic support is the focus of World Alzheimer’s Month. With limited pharmacological interventions and no cure, learning how to live as well as possible with dementia and slow down its progression are two key aspects for most people who receive this life-changing news.
Post-diagnostic support is patchy at best. I’ve heard of people who have limitless access to programmes like Maintenance CST (Cognitive Stimulation Therapy), peer support groups and non-therapeutic interventions, and other people who get little more help than a pack of information leaflets. A lot of emphasis seems to be on people doing their own research and being proactive, which isn’t always easy in the aftermath of a dementia diagnosis.
If you are diagnosed with dementia under 65-years-old (Dementia UK and Alzheimer’s Society provide more information on young onset dementia), a key challenge is finding age-appropriate post-diagnostic support. You don’t necessarily want to join a singing group if the music isn’t of a genre or era that you relate to, or go to clubs that offer activities predominately focused on older people. You may still be working, or have dependent children to support, and for some younger people the shock of a dementia diagnosis can be even more acute than it is for an older person.
What do people with young onset dementia want from post-diagnostic support?
To understand what people diagnosed under 65-years-old want from post-diagnostic support, I asked the experts – three people who are living with young onset dementia – for their views. This is what they told me:
George:
“It depends on your circumstances, age, family, job, etc, but generally: Don’t change what you do suddenly. Keep socially engaged. Keep doing what you enjoy. And don’t change who you are. Find peer support, with younger onset people, online or in person, a DEEP group or similar. It’s so important to find people to talk to who get it because they have it. Finally, find out about your rights. Disability rights, benefits, employment rights etc.”
Teresa:
“Personally, I would love to be told that you still have a life to live and can still do things. Also, to be given information about services that are helpful, and to know where there are groups for under 70’s for peer support.”
Tommy:
“It’s very important to someone newly diagnosed, especially those with young onset dementia, that they are given hope, as well as a clear pathway of how their dementia will affect them and the importance of meeting their peers, as these will be the best people to inspire the person. It’s important to explain dementia the way I do, that is: ‘A torch needs a battery to shine bright. A battery has a positive and a negative end. If the battery had two positive ends or two negative ends it would not work, that’s why there will be positive days and there will be negative days, but that is part and parcel of dementia.’
Your brain needs exercise. A diagnosis of dementia is not the end of your life, it’s the beginning of your new one. You can still contribute to society. Remember that just because you’ve got dementia it doesn’t mean you lose your intelligence.”
Services and support for people with young onset dementia and their families
It’s very clear from what George, Teresa and Tommy have said that they value peer support immensely. They also want to promote positive messages that life goes on, and a person with early onset dementia should still continue to live their life to the full.
My Care Choices blog, ‘Living with Memory Loss – Tips for managing day-to-day’, has additional ideas around communication, environment, life story work and assistive technology. These are applicable to anyone of any age living with early dementia symptoms.
For a person with younger onset dementia, I would recommend connecting with the Young Dementia Network. They provide a range of services and support that is dedicated to people who are living with dementia under 65-years-old. Rare Dementia Support also provide advice to younger people who’ve been diagnosed with one of the less common types of dementia.
To connect with people from around the world, Dementia Alliance International have a wide-ranging membership, including many people with young onset dementia.
Family members and friends may benefit from the information and support offered by Dementia Carers Count, including the free training courses offered by their Virtual Carers Centre. TIDE (Together in Dementia Everyday) also provide peer support for carers.
For any family affected by dementia, the Admiral Nurse Dementia Helpline and associated Virtual Appointment Service offered by Dementia UK can help, as can the Alzheimer’s Society Dementia Connect support line.
