From lived experience to lasting impact: Keith Oliver is helping shape the future of compassionate post-diagnostic support

Written by Melissa Melville with Keith Oliver
9 July 2026

Keith Oliver's recent feature in The Telegraph offers a powerful reminder that a dementia diagnosis does not define a person's future. Fifteen years after being diagnosed with young-onset Alzheimer's disease, Keith continues to challenge perceptions of dementia, not only through his advocacy, writing and public speaking, but by working alongside researchers at University College London and North East London NHS Foundation Trust to help shape the Compassion Focused Therapy for Mood in Dementia trial.

 "Our whole approach to dementia needs to change. There is so much negativity in the way it's handled. We need to stop writing off people living with Alzheimer's so quickly."

Diagnosed at the age of 55, Keith has spent the past 15 years showing that while dementia changes your life, it does not diminish your identity, your purpose or your ability to make a difference. Through volunteering, writing, research and public engagement, he has become one of the UK's leading advocates for improving life after a dementia diagnosis.

Yet Keith's story also reflects something many people living with dementia experience. A diagnosis can bring uncertainty, fear, anxiety and loss, but emotional support after diagnosis is often limited, leaving people and their families to navigate these challenges largely on their own.

For Keith, learning to live well with dementia has been about much more than medication. Staying connected, finding purpose, contributing to his community and receiving compassionate psychological support have all played an important role in helping him adapt. As he explains in his Telegraph article, the engagement, connection and meaningful activities in his life have become just as important as the medication he takes.

One of those experiences was receiving Compassion-Focused Therapy through the NHS.

Initially, Keith found some aspects of the therapy surprisingly challenging. One exercise in particular, writing a compassionate letter to himself, felt uncomfortable and unfamiliar. Like many people, he found it much easier to show kindness to others than to himself. Yet over time, Compassion Focused Therapy helped him begin responding to himself with greater compassion and understanding, rather than frustration or self-criticism, changing the way he related to the emotional challenges of living with dementia.

The experience left a lasting impression.

"My only hope is that more people can have access to it."

That hope has become a driving force behind Keith's involvement in research. Over the past several years, he has worked alongside our research team to help develop the Compassion Focused Therapy for Mood in Dementia trial, ensuring the study reflects what matters most to people living with dementia and their families.

Developed in partnership with people with lived experience, the study is exploring whether a group-based Compassion Focused Therapy programme can improve wellbeing for people living with dementia who are experiencing anxiety or depression. Rather than focusing solely on memory problems or cognitive symptoms, the trial recognises that adjusting to a dementia diagnosis is also an emotional journey. It aims to help people respond to difficult thoughts and feelings with greater compassion, reduce self-criticism, strengthen resilience, and foster meaningful connections with others.

Keith has always believed that research should focus not only on developing new treatments, but also on helping people live well with dementia. Reflecting on the months after retiring from teaching, he wrote:

"I didn't want to be a 'sufferer' or 'service user', I wanted to be useful."

His partnership with the research team embodies exactly that philosophy. His lived experience has informed the development of the study and continues to shape a more compassionate approach to post-diagnostic support.

The value of this approach is already being reflected by participants who have taken part in the study. One participant described how meeting others with similar experiences transformed the way they felt:

"I'm not the one on my own anymore... They changed my attitude towards things... I'm not the only person on the earth who hurts."

Experiences like these highlight why emotional support matters. Living with dementia can feel isolating, but it does not have to be faced alone.

The trial is now recruiting across 14 NHS sites throughout England and aims to offer group Compassion Focused Therapy to around 120 people living with dementia who are experiencing symptoms of anxiety or depression. By working in genuine partnership with people who have lived experience, the research team hopes to build the evidence for psychological support that complements existing dementia care and helps more people live well after diagnosis.

Keith's story reminds us that while a dementia diagnosis can bring significant challenges, it does not define a person's identity, potential or future. His experiences reflect a growing recognition that post-diagnostic support should do more than help people manage symptoms, it should help people navigate the emotional impact of dementia with compassion, build on their strengths, and support them to continue living meaningful lives. This is the vision underpinning the Compassion-Focused Therapy for Mood in Dementia trial.

As Keith concludes in his Telegraph article:

"An Alzheimer's diagnosis is life-altering, but it doesn't have to be life-ending."

Interested in taking part?

The Compassion-Focused Therapy for Mood in Dementia trial is currently recruiting across 14 NHS sites across England.

If you or someone you know has a diagnosis of dementia and is experiencing symptoms of anxiety or depression, you may be eligible to take part.

To find out more, visit this webpage: Compassion Focused Therapy Study , or email cft@nelft.nhs.uk   or melissa.melville@nelft.nhs.uk  

More about Keith Oliver

Keith Oliver has lived with young-onset dementia since 2010. He is an author, campaigner and long-standing research partner with UCL and NELFT. Keith has worked alongside Mel on the CFT research team throughout the development of the trial, helping ensure it reflects the priorities of people living with dementia.

You can read Keith's Telegraph article online, but please be aware this is behind a paywall.