Real stories

A musical about dementia activism, created by people living with dementia

Successful musicals are often based on unexpected subjects – just think of Cats (about poetic felines) or Joseph and the Amazing Technicolor Dreamcoat (Old Testament epic). 

Now you can add Dementia the Musical, a new production that toured across Scotland in October and early November. 

The show was written by Scottish poet Ron Coleman, himself living with vascular dementia. 

It’s inspired by three of Scotland’s longest serving dementia activists and their work to ensure that people with dementia have a voice in their own lives. 

Inspired to write 

‘When I was diagnosed, I became really depressed, as you do. It’s quite a shock to the system,’ Ron says. 

Then he met campaigner and activist Agnes Houston MBE. 

The way she was living her life was really inspirational, so I thought to myself, ‘If she can do it, then I can do that. I can just get on with living.’ 

Through Agnes, Ron met Nancy McAdam BEM and James McKillop MBE. 

‘I saw the campaigning work they’d done, and I guess I became an activist myself. 

‘I started writing poetry, then I wrote a first play, Caught in This Moment of Time. Then after that, I thought it would be good to celebrate their lives.’ 

The power of music 

What started as another play, however, soon evolved into a musical, especially once he teamed up with jazz singer and composer Sophie Bancroft. 

‘I guess nobody would think of doing it as a musical because we tend to take things like dementia really seriously. 

‘That’s not the reality of what dementia is,’ he says. ‘Dementia is a condition, but it doesn’t stop us having fun and laughing and doing things a bit different.’ 

He accepts that songs can be more powerful than speech alone. The show’s opener, The Enemy of the High Backed Vinyl Chair, is a case in point. 

‘That was something one of my friends said when we were talking about what it was to be activists,’ Ron says. 

‘The high-backed vinyl chair became the figure of the care home.’ 

System on trial 

The show’s narrative puts the three activists on trial by the self-confident Rigid System, both prosecutor and judge. The audience – at least in theory – are the jury. 

‘I was writing this when there was a really big clamour, in some parts of our politics, to replace the European Convention on Human Rights,’ says Ron. 

I could see a position where – using a ‘British Bill of Rights’ – we would be denied things like our family life, when and where we wanted it.

Which is why Ron ensures that the three campaigners ultimately face being found ‘guilty’, ‘very guilty’, or ‘not innocent’ of causing trouble. This underscores the musical’s point that ‘power is never given, it must be taken’. 

Media reports 

The show’s director, Magdalena Schamberger, has many decades experience working with people with dementia. On this occasion, actors who don’t have dementia were cast. 

Nevertheless, Ron wanted to ensure that people like himself were part of the performance. So, during the show there are regular on-screen news reports about the ‘trial’, performed to camera by Willy Gilder. 

‘Willy was a reporter in his past life, and it really made sense to me for him to play that role,’ says Ron. 

‘At the very end, he says, “I’m Willy Gilder. I have Alzheimer’s disease and I’m a dementia activist.” 

‘I think that’s a really powerful moment because I don’t think people seeing Willy would think, “Oh, he’s got dementia as well,” when they see him performing.’

Great audiences 

‘We’ve been getting a lot of reactions from audiences,’ says Ron. 

‘One of the wonderful reactions for me was when a woman in her 70s came up to Magdalena and asked, “How do I become a dementia activist?” 

‘That really said, to me, that she got it. That’s been one of the really enjoyable things – anybody can watch it and get something out of it. 

‘And the audiences have been great. We’ve even had situations where people have booed the character Rigid System. 

That just says to me that Pauline Lockhart, who plays the character, is doing it really well!