Dementia: the Musical

Killick J (2025) Dementia: the Musical. Journal of Dementia Care 33(1)20-22.

From the show: (left above) Kirsty Malone, Fiona Wood and Ross Allan; (right above) Pauline Lockhart and Fiona Wood. Photos by Kelman Greig-Kicks

John Killick sings the praises of a ground-breaking production written by
Ron Coleman and involving three founder members of the Scottish Dementia
Working Group. The show played two sell-out performances in Edinburgh, then
went on to tour throughout Scotland. Its message has wide relevance, and artistic
experiences of this quality are a powerful way to influence hearts and minds

On 6 June 2001 in Glasgow the first Scottish presentation on dementia by people with the condition was given. I know, I was there.

So was James McKillop, one of the three protagonists of this musical. Agnes Houston and Nancy Macadam joined later, and the Scottish Dementia Working Group (SDWG) was formed. This may have been the first homegrown pressure group of its kind in the world; it was certainly the first movement of its kind in the UK. Over the next twenty years or so the Group grew in size and influence and has had a profound effect on the debate and the provision of services in Scotland and, through its speaking engagements, across the world.

On 12 October 2024 in Edinburgh the premiere of Dementia: the Musical was given to the first of two full houses. I know, I was there. So were all three of the subjects. Further performances have happened across Scotland, the last of which was in Paisley on 9h November.

So was this fundamentally, a historical account of an important social and medical occurrence? Well an awareness of an eventful couple of decades was certainly there, but this of itself would have lacked dramatic impetus.

The decision was taken by the author of the book (Ron Coleman, a man with the diagnosis from Stornoway) to adopt an activist scenario in which the three characters, James, Agnes and Nancy (who incidentally are today still living in their own homes) are facing the prospect of being taken into care. The state does not recognise the contribution to society they have made, and an interlocutor has been appointed to cross-question them about their attitudes. The European Bill of Human Rights has been replaced by a British Bill of Rights and this is being used by society, including care homes, to control all aspects of the lives of people with dementia. At the end the audience is invited to pronounce judgement on the case.

Author Details

 John Killick is a poet and author.

Acknowledgement and thanks to the following for permission to use material in this article:
Ron Coleman and Howard Gordon for the lyrics of Loud and Clear.

Sophie Bancroft for the lyrics of Rigid System, The Enemy of the High-Backed Vinyl Chair and Nancy, How Does Your Garden Grow. Kelman Greig-Kicks for photographs

In the panel opposite, writer Ron Coleman and director Magdalena Schamberger describe how the production was conceived, grew and came to fruition.

The spirit and message of the drama

To enable readers to enter into the spirit of the event, I will quote some lyrics from the musical. Here is part of a chorus that encapsulates the overall message of the drama:

 Upon their shoulders we stand tall
 Held by them we cannot fall
 Because they chose to answer the call
 That’s the reason we are here.

 The story’s theirs alone to tell
 Ten per cent heaven, ninety hell
 They kept upright when they should have fell
 That’s the reason we are here

 James McKillop, high command
 First activist to voice our demands
 Fearless fighter, dedicated man
 He’s the reason we are here

 Nancy McAdam, Agnes Houston
 Giants of the revolution
 Fought the systemic order
 They’re the reason we are here

 HEAR THEIR VOICES, HEAR THEIR VOICES
 LOUD AND CLEAR, LOUD AND CLEAR
 HEAR THEIR CHOICES, HEAR THEIR CHOICES
 LOUD AND CLEAR, LOUD AND CLEAR

A key character is played by Rigid System. She comments throughout and attempts to counter the individual songs of the three protagonists and also their group contributions. Here is part of her song:

 How can you tell me that I’m wrong
 Can’t you see my motivation to help is strong
 I don’t want you telling me what you need
 I know exactly what you need
 So let me be
 I wear a suit ‘cos I know what’s right
 I’m educated, liberated, held in tight
 I believe in the system I represent
 A technocrat, a bureaucrat from your government.

And here is the musical reaction of the three people with dementia to the charge:

 We need a plan
 We need a plan
 We need a plan
 To fight the man in the suit

 And the system
 The rigid system
 She’s in cahoots
 With the man in the suit   

 Must be quick
 Can’t miss a trick
 They’re devious in the way
 That they do things

 Steal our rights
 In the middle of the night
 And put us on the back foot
 We’re the enemy
 Of the high backed vinyl office chair.

The kernel of the show is the three songs given to the three protagonists. Nancy lives in a cottage on the Black Isle and hers is a rural life style:

 I plant flowers, sow some seeds
 Prune roses, remove the weeds
 Find ways to make my garden bloom
 People always ask, people always ask me
 Nancy, how does your garden grow?

Ron Coleman gives this account of how
the show came about:

It did not start its life as a musical, but as a play about James, Nancy and Agnes. Very early on in the writing of the play I gave the title of ‘The Ballad of the Dementia Activists’, and it was at this point it moved away from being a play towards being a musical. It promises to celebrate not just the activism of James. Nancy and Agnes but of every person with a diagnosis of dementia to change the dominant perception of dementia and show the world we are much more than people think we are.

Magdalena Schamberger, director of the show, writes:
I became involved in ‘Dementia the Musical’ in 2022, following its first reading on the Island of Lewis. Ron was in search of a director with experience of working with people with dementia. He was aware of my passion and commitment to working creatively with people living with dementia for the past 25 years, initially by creating Hearts and Minds’ Elderflowers programme (see Killick 2003) and more recently by creating collaborative performances for people living with dementia, namely Curious Shoes, In the Light of Day and Framed, the third part of my dementia-responsive trilogy which is currently in development.

 My performance projects are tailored for high quality engagement with small audience numbers. With support from the Creative Scotland Touring Fund, Dementia the Musical was able to embark on a National Tour to larger theatre venues, achieving higher audience numbers and overall reach. This has played an important part in spreading the word and encouraging activism and change.

I guess you could say that Dementia the Musical chose me. I realised from the outset that the play had an important story to tell. I have known and worked independently with James, Agnes and Nancy. the three activists at the centre of the story, as well as Willy Gilder, the reporter, for a number of years. This was particularly useful when directing the filmed segments incorporated in this production.

In terms of challenges – the project was unsuccessful the first time we applied for funding and we had to wait an entire year to resubmit our application. Overall, I felt a huge responsibility to do justice to Ron’s script, while at the same time incorporating contributions from all collaborators and drawing on my directing experience to enhance the theatricality of the piece, without losing its intention. As with staging any new play, there was a lot to balance – the juxtaposition of dementia activism with the theme, with a musical as the chosen style for the piece; keeping the political message clear, while incorporating a strong sense of fun and humour and letting the beauty of the music by Sophie Bancroft and the life stories of James, Agnes and Nancy unfold. I hope that we have achieved this celebration of lives, creativity and political activism, whilst not shying away from the challenges a diagnosis of dementia brings.


Verdict

This is very much a musical with designs on the audience. Does it succeed? The answer I would give is: triumphantly! It is very much a company effort. The actors and the technical staff are at one in putting the message across. Sophie Bancroft the composer, Magdalena Schamberger the Director, and Gemma Greig-Kicks the producer, are at one in maintaining consistency. And sound and lighting (Tom Lyne and Colin Grenfell) contribute massively to the overall effect. The show is always on the move with sharp projections underlining the meaning at all times. You cannot avoid absorbing the ethos of this production. I also think that because the show started out as a play and not a musical this has given it a focus and a tension which it might otherwise have lacked. The four professional actors – Ross Allen, Pauline Lockhart, Kirsy Malone and Fiona Wood – are fully in command of their acting and singing roles. There is a fifth actor in Willy Gilder, who actually has dementia, and plays the part of Reporter; he appears mid-set on a tv screen linking scenes and giving historical information.

Ron Coleman as the instigator of all that we see and hear is clearly a force to be reckoned with. Since his diagnosis in 2017, he has established Deepness Ltd, an organisation run by people with dementia with opportunities for workshops and performances. He has thrown himself into writing of all kinds, and has been helped in this endeavour by his association with the arts centre ‘San Lanntain’ in Stornoway where he lives.

Conclusion

The clear trajectory of the musical is that the three individuals on which it is based both solely and communally earn a positive verdict from the audience, which will carry away an impression of the achievements of the SDWG movement, but be in no doubt that there is far more to be done: we all need to remain vigilant in our dealings with institutions (care homes, day centres and hospitals), and the staff who run our NHS (specialists, doctors and nurses) and the administrators of those services, that the personhood of their clients must be maintained and enhanced at all times.

It is a shame that this production has only been seen in Scotland. Its message is relevant to the population of the whole of the British Isles, and I have no doubt that an artistic experience of this quality is the best way to influence hearts and minds.

Reference

Killick J (2003) Funny and sad and friendly: a drama project in Scotland. Journal of Dementia Care  11(1) 24-26.