Can the creative arts help people living with dementia?
by Portia Ladrido
There are 46.8 million people in the world today who are living with dementia. But, even after decades of research, there is still no possible cure.
A report by CNN states that one of the reasons why dementia is particularly hard to treat is that it has no singular cause, that it is a complex health problem which can actually stem from over 50 different causes. Dementia, ultimately, just becomes a term that encompasses a myriad of conditions that makes the brain deteriorate.
Because of this seemingly incorrigible fate that’s bestowed upon millions of people, it has all the more empowered humanity to invest, research, and support this sector. Bill Gates, for instance, just announced that he along with other philanthropists is investing $30 million (approximately £23 million) on Alzheimer’s research. Earlier this year, the UK also pledged to invest £40 million on dementia research.
The aforementioned investments could well usher in the cure for dementia. But, there are also small pockets of initiatives that have provided support for people suffering from the disease over the years. In Brighton, UK, an enterprise called Story Chaplain – a series of creative art projects aims to help people living with dementia and their carers.
Story Chaplain’s founder, Charlotte Overton-Hart, talks to INKLINE.
INKLINE: What nudged you into creating Story Chaplain? Why this particular initiative?
Charlotte Overton-Hart: I worked in Adult Social Care for five years, and while I really enjoyed the work, I felt that there wasn’t too much scope for much quality time with the people I was supporting, let alone finding opportunities to share ideas and good practice.
To be clear, this isn’t a criticism of the sector, so much as a reflection on the reality of heavy workloads, staff shortages and squeezed budgets. I have huge respect for health and social care workers and continue to be in touch with colleagues in these sectors.
I: Can you course us through how the social enterprise works? Also, why you named it Story Chaplain?
C: Overall, I use a subsidy model, which means typically I would charge organisations and [then use the money to] support individuals and families for reduced or no cost. In reality, it doesn’t always work like that. For example, some organisations may not have the budget, or rather, they haven’t yet discovered that dementia inclusion is something they may need to allocate a budget for, or families are able and happy to pay for support, so I really work on a case by case basis.
The name Story Chaplain? I think a good chaplain is someone who commits to listen to another person’s life experience. It’s about love in action, through a commitment to seeing life from another person’s perspective. And I think we’re all made of stories.
I’m often asked if Story Chaplain is a faith-based organisation. As a Christian, I don’t mind the ambiguity, but it’s far more universal than that: we all believe in something, and as humans are inherently meaning-makers. By finding out what matters to someone, I’ll automatically be in a better position to support them.
I: You started working in Adult Social Care, first as a support worker, and then later as a care manager. What was that experience like and what were some specific moments that may be, shaped Story Chaplain?
C: Working in Adult Social Care was a great privilege and equally really hard work. I absolutely loved visiting people in their homes – such a humbling experience – and spending time with people, finding out what next steps I could support someone to take to move forward. That said, the paperwork was often cumbersome and disproportionate. The caseloads were heavy and the budgets tight.
The journey out of social care and into Story Chaplain was pretty organic. I reduced my hours at work to take an apprenticeship to become an accredited Reminiscence Facilitator, and I started running dementia-related projects and workshops in my spare time.
I: Why did you want to focus on the creative arts? How important do you think this is?
C: The creative arts often allow moments of connection, and often beyond language. In any workshop or session I run, the outcome is never primarily artistic. Rather, the goal is to spend quality time with people living with dementia and their carers, and the creative arts often facilitate this, in a low key, gentle way. For example, if a person’s dementia means that they are no longer able to communicate through language, they may still be able to enjoy sensory rich activities like smelling lavender, picking flowers, or arranging shells.
I hope that in some way I will contribute to altering the contours of public discourse, to look beyond dementia and see the person.
I: What are the usual challenges that you face as a social enterprise? How do you address these challenges?
C: I think one challenge is not knowing what will come next because in a very real sense that’s down to me. Having said that, I think this is equally something that encourages me to keep going.
I: How do you wish to scale your enterprise? What steps are you taking in that direction?
C: From the start, I considered the possibility of developing Story Chaplain as a franchise or developing products, but I think those routes would take me away from what I love most, which is spending quality time with people who are living with dementia.
As time goes by, I feel most comfortable with sharing stories, ideas and good practice which will encourage creative responses towards dementia inclusion in contexts beyond my own. In this way, I think it’s more like organic growth rather than scaling as such.
I: What has been the most satisfying thing about running Story Chaplain? And what do you hope for it to become?
C: Rather than satisfying, I would say it has been encouraging to become part of a growing movement — spearheaded by people themselves who are living with dementia and their carers — which believes that there is more to a person than their diagnosis of dementia.
Beyond diagnosis, with help and support, it is wholly possible to continue living a life of meaning. And people living with dementia still have a great deal to contribute, even if these contributions are different from those made during the course of their life so far. This is not to say that living with dementia won’t be the most difficult chapter in a person’s life, but that there can also be hope alongside this challenge. Each person is precious and has value, and dementia in no way diminishes that.
What do I hope for Story Chaplain? I hope that in some way I will contribute to altering the contours of public discourse, to look beyond dementia and see the person.
Portia Ladrido is a multimedia journalist specialising in social justice, culture, and the arts. She is a human rights journalism fellow at the Philippine Human Rights Information Center and the Metro Manila hub coordinator of the Solutions Journalism Network. She currently writes speeches for the Philippines’ first female socialist senator. Previously, she worked as an editor and writer at CNN Philippines.