Ian Baxter performed ‘The Purple List…A Gay Dementia Venture’ at the most recent Admiral Nurse Forum. It is a 35 minute, one-man play revolving around the relationship between Sam and Derek. It is told from Sam’s point of view as Derek’s dementia progresses. The play captures the challenges which exist for LGBTQ+ people as they navigate through the care system.
There is a Q&A session as the end, with Ian staying in character.
Tell us a bit about your background
I’m a gay man. I “came out” over 40 years ago. I’ve been with my partner Noel for about 35 years. We got married in 2016 because the law changed and we could! At the time, when asked what he thought about our upcoming nuptials, my 98-year-old dad said “I think it’s ridiculous!” This was followed a bit later by, “I just wish I could be there.” On the day, his carers sent us a video of him dressed up and drinking a toast to us. It still makes me weep!
I’ve got three step children and grandchildren aging from five years to adult age, who all call me “Grandpa Ian.”
I’ve been an actor, role-player, facilitator and teacher since graduating in 1983. I love using theatre to get people to discuss, reflect, think, and ultimately to help influence their hearts and minds.
What was your inspiration behind the play?
Libby (Libby Pearson, the playwright) and I were noticing how much dementia was being discussed in the media and began to consider what it might be like for me and my friends if we had to use the care system. We wanted to open up the discussion about how a diagnosis, use of residential and domiciliary care might have further ramifications for certain minority groups. We also wanted to make a piece of work that might influence training and good practice for those working in and around care.
The play developed through sharing events to LGBT groups and general audiences until we reached a point where we felt the play was representative of many experiences.
What was the number one issue which came out from your discussions with general audiences? And from LGBT groups?
Carers do not necessarily know where to turn to for support and information as they are going through such personal trauma, it is difficult to take a step back and see the bigger picture and who is there to guide them. As such, they often make rushed, uninformed decisions and feel very isolated and frustrated.
In terms of LGBT issues, the number one comment is a fear of how we will be treated and accepted by carers, other residents and the growing number of strangers you come in contact with when you have an illness.
Every diagnosis of dementia is as unique as the person who receives that diagnosis. Was there a conflict in presenting this but also in ensuring that the play would be accessible to lots of people?
The story is generic, not only in terms of dementia but in illness and conditions too. To narrow down a specific type of dementia would perhaps have lost the ‘this could be anyone’s story’ dimension. However, we wanted to make Sam and Derek as rounded as possible and therefore tell a very personal story over the underlying one.
Carers and people with dementia can struggle to be heard in society. Did this inform your decision to perform this as a one-man play, in order for Sam and Derek’s voices to be heard? And also the fact that there was a Q&A session at the end with you staying in character?
When a carer is in the thick of things, their perspective changes as does every aspect of their life. As such, they are often unheard and unseen yet they provide one of the most valuable services to society imaginable. Giving voice to a carer and their experiences was vital to the thrust of the play and we hoped very much to bring an awareness to the personal struggle carers endure. The Q&A reinforces how living grief and then grief after death affect carers so deeply and how important it is to recognise and support these key members of our society.
From reading the reviews on your site, the play has resonated with so many people. The feedback from health and social care professionals has been great in particular. To what extent can theatre training or watching performances help the health and social care workforce carry out their roles? Is there a case for embedding theatre within their training programmes more?
Yes, and they’re beginning to do so. A performance of “The Purple List” followed by a workshop, is now part of the curriculum at Hull and York Medical School (HYMS), and following performances at other universities they’re looking at including us in their curriculums too. We’ve been working extensively with “Skills for Care” and now also with The Care Quality Commission.
There are so many different ways people take on information, learn and understand, that traditional methods of say chalk and talk, personal research and lectures can never suit everyone. Even if you react well to traditional teaching and learning methods, new styles and formats enthuse and enliven learning experiences. Bringing a piece of accessible theatre into a learning environment can allow people to react in different ways to stimuli and can therefore have a huge impact on developing better practice. Seeing a real-life representation of life experiences can help students reflect on how they have treated patients and clients and how they may treat them in the future.
The benefits that the arts can have on people living with dementia has been well documented. What importance do the arts have for you in this respect?
Art is our tool; it is our communication method. Words and emotions are inextricably linked and allow us to connect with those we are trying to reach. We made Derek a visual artist because we wanted audiences to consider how important all art forms can be to individuals, especially those with physical and emotional impairments and how the arts can help them to hold on to their identity when illness is apparently stripping them of that.
What would be your advice for anyone who is considering holding a theatre performance for people with dementia?
In our experience, make sure they are comfortable with the space, a pre-visit works well. However, the advice is more for theatre makers and venues, and that would be to be patient, open to a range of reactions and consider how visual and audible stimuli might affect those watching the play.
What’s next for Purple List Theatre?
We go from strength to strength, performing to a wide variety of audiences and organisations. We are working with the CQC again and a range of care providers and commissioners. While we have performed extensively in England (also in Australia and Italy), we have never performed in Wales, Scotland or Northern Ireland and we would love to do so. So, Scotland, Northern Ireland and Wales (and England if we’ve not reached your neighbourhood yet) please do get in touch.
What’s your favourite play of all time and why?
That’s such a hard question!! Libby says hers is ‘A Streetcar Named Desire’ because it teems with passion, desire and loss – it’s about raw human emotion.
Of course, I’m going to say ‘The Purple List…A Gay Dementia Venture’ because I love performing it, I feel privileged to be performing it, and I feel passionately about the issues that it raises.
As an audience member, I want to see a play that packs a punch with passion and soul. So for me, it’s most productions from Knee High Theatre Company, like ‘Troilus and Cressida’, or directed by Emma Rice such as ‘Nights at The Circus.’ I can usually rely on them to be exciting, challenging, magical, passionate, hilarious, devastating and… inspirational.
You can find out more information and contact details for ‘The Purple List…A Gay Dementia Venture’ here.
If you have any perspectives you’d like to share as an LGBT person affected by dementia, or as a professional supporting this demographic, please get in touch with LGBTGroup@dementiauk.org.