A dementia diagnosis is not a final curtain. It can even be an opening act

Two years ago, my father was diagnosed with dementia. As a family, we were at a loss for what to do or what this even meant. There were so many questions and so few answers.

A friend then sent me an article about a group of people living with dementia, who had just recorded a punk/new wave album. I read in a newspaper article about how the group didn’t want to go into a care home and listen to Val Doonican, they were determined to make music where they could truly express themselves. The spokesperson for this group was a man called Ron Coleman, who called himself The Demented Poet. 

I set out to meet Ron, and it was at this point that I picked up my camera and began shooting a documentary film. The film not only tells Ron’s story, but also the story of the dementia activist movement in Scotland as Ron and others put on Scotland’s first Dementia Arts Festival.

In doing so Ron encouraged a generation of people living with dementia across Scotland to see themselves as artists and to create. It was deeply inspiring and beautiful to watch, and Ron even got my dad involved in clowning. Ron sadly passed away this year on 12 October. His huge heart finally had no more left to give. 

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Since receiving his dementia diagnosis, Ron created all types of art, poetry, theatre and cinema like a man possessed. All of his work was raw, honest and incredibly powerful. This is a man who hadn’t created any work at all before the diagnosis.

His creative talents weren’t merely noticeable; they were a testament to the fact that a dementia diagnosis is not a final curtain. It can even be an opening act. His passion and creative output defied the stigma that tells over 980,000 people living in in the UK with the condition that their lives are over. 

We made two films. One was a documentary film called The Demented Poets, which focused on dementia, art, family and activism. The other was a short film called Caught in This Moment in Time, which was based on Ron’s stage play of the same name. In this film, Ron played the central character. True to style, Ron gave a brilliant, raw, intense performance as a writer with dementia struggling to overcome writer’s block, with Alexa as his only companion. 

Read more:

• Breaking the stigma of a dementia diagnosis
• This orchestra is giving dementia sufferers something to sing about: ‘Music changes lives’
• What can I do to reduce my risk of dementia?

Ron personally got so much from doing the film and acting work, and he wanted to help other people living with dementia to have similar experiences. His dream was to create a company of creatives made up predominantly of people living with dementia, and this idea gave birth to his last film idea, The F Ward.

In this film, Ron wanted to focus on what happened to people with dementia during the Covid-19 pandemic. When Ron told me about the idea, I could immediately see how important this film was. People living with dementia accounted for 28% of all mortalities in Scotland. We set up a small production team and began a six-month period of development.

We interviewed a huge range of people and then ran acting workshops in some of the dementia friendly meeting centres in Angus. We then brought in some experienced actors from the Scottish soap opera River City to play care home staff and family members. We had characters, scenes and the first draft of the script. 

Sadly, this is when Ron’s much-worn heart gave way. Ron asked to have a Zoom call with me from his hospital bed just before he passed. We spoke about the incredible journey we had been on together and tearfully said goodbye to each other. Ron made me promise to finish making The F Ward, and there are now a group of us fully intent on keeping that promise.

I was so lucky to be given the experience of collaborating with Ron. He became such a dear friend and will be missed by me and many others. With the projections for the number of people in the UK living with dementia to reach 1.4 million by 2040, we can all be thankful for the incredible work he has done and make sure that we all carry on where he left off.

There still is a huge amount of stigma surrounding dementia, and we as a society must increase education and awareness. There are actually a lot of demented poets out there, and they deserve a chance to be heard.

Find out more about Dementia Arts here.

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