Member showcase: Young Minds Dementia Group

Changing the journey for people with young onset dementia

Having waited ten years to receive her dementia diagnosis, Karen Barber shares why she founded the Young Minds Dementia Group and her hope of ensuring that younger people living with dementia feel seen, supported and are never left to face the journey alone.

From personal experience to purpose

I knew something was wrong long before I had a name for it. When I sought help, I was repeatedly told I was too young to have dementia. For years, I lived without the answers, specialist testing and support I needed.

The impact reached every part of my life. I had spent ten years building a career in the civil service, with an exemplary record, promotions and outstanding appraisals. Yet I was dismissed for poor performance before receiving the diagnosis that finally explained what had been happening.

I felt relief when I finally received a diagnosis, but I could not stop thinking: how many more people go through the same traumatic experience. I decided to use my skills and experience to help others living with young onset dementia. I am determined that no one else should struggle in the way I did.

My diagnosis brought relief, but it also exposed a painful gap in support. Younger people diagnosed with dementia may still be working, raising families, managing financial pressures and planning for the future. Too often, however, services are designed around older adults and retirement-age needs.

Without age-appropriate support, people can lose far more than a diagnosis explains. Careers, confidence, independence, relationships and identity can all be affected, while families are left trying to understand where to turn for help. It is no wonder that so many people reach crisis point. If you are diagnosed and then left without information, support or direction, you are forced to fight for help at the very time when you should be receiving it.

I founded Young Minds Dementia Group in February 2026 because I did not want others to face the same ten-year wait, the same uncertainty or the same experience of being dismissed because they were considered too young to have dementia.

Our groups provide a safe, welcoming space for people living with young onset dementia and their families. We aim to reduce isolation, improve wellbeing and help people remain connected, informed and active in their communities.

We plan to offer face-to-face community support alongside digital groups across the UK, so that geography does not prevent anyone from finding connection. I am proud of the experienced trustees, volunteers and community partners who are helping to build an organisation that is strong, meaningful and lasting.

People diagnosed with young onset dementia deserve better. They deserve recognition, specialist support and services built around their lives. It should never be a postcode lottery that decides who receives help and who is left behind.

Our vision is simple but powerful: to improve the lives and wellbeing of people living with young onset dementia by ensuring they receive information, guidance, friendship and support from the beginning, rather than being left forgotten, invisible or alone.

It is time for change. It is time for recognition. It is time for young onset dementia to be seen, heard and supported properly. Through peer support, social activities, education and partnership working, Young Minds Dementia Group is helping to build a future in which younger people with dementia are recognised, valued and properly supported.

Our weekly face-to-face groups currently meet across Essex and in County Durham, find out more here.

To find out more about the Young Minds Dementia Group visit its website or email Karen Barber at karenbarber@ymdg.org

Registered Charity Number 121965