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Moving Story dementia project improving aged care for all by celebrating lives – then and now

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“Rejoice in the infinite beauty of this moment of now.”

Penned by his beloved mother Judy, it is a sentiment that Chris Mead absorbs each time he visits her memorial plaque at Emu Valley Rhododendron Garden, upon which the eloquent phrase is engraved.

Whilst the death of a parent is one of life’s toughest inevitabilities, for Mead, this bitter rite of passage 12 years ago was the inspiration for a transformative new aged care programme.

Co-founding and stepping into the role of creative director of Tasmanian charity Arts Health Agency, his experience caring for and eventually losing his mother, who lived with dementia, inspired a determination to improve the quality of life of all older persons in a similar position.

“The boxes just keep getting smaller until I reached the six-footer,” Judy wrote, and whilst her words were laced with humour, Mead says that he was astounded by how aptly his mother summed up the loss of personhood and agency experienced by those moving into residential aged care.

I think it’s curious that we quite often have a celebration of life at an aged care facility after a resident has passed away. It’s a way of closure, and I understand it, but can you imagine celebrating somebody’s life as they’re actually coming into the facility?

Arts Health Agency co-founder and creative director, Chris Mead

“You can really picture it, the houses we live in and the boxes that just get smaller, and here she was going into her second last box, which was this empty room in an aged care facility.”

“It’s an emotionally distressing time, to have your loved one transition into care,” he tells Aged Care News.

However, any idea of what he could do to help remedy or ease the emotional heartbreak of this challenging period in one’s life remained illusive to Mead, until his mother’s funeral.

Chris Mead is a director, producer and consultant in promoting the arts for social and economic change. His Moving Story dementia documentary project provides personal insights, love and life stories to inform and assist care teams to provide the best life possible for their clients.

The process of organising the eulogy piqued Mead’s curiosity into the rationale behind communities only coming to fully understand and celebrate the course of people’s lives after they’ve died.

“Sometimes we think we really know the person that we love and are honouring, but it’s always the stories of others that are like threads of connection that draw all of us together … we really feel like we get the whole of the person when you hear all these other stories,” he says.

A variety of aged care workers who cared for Mead’s mother attended the funeral, and they expressed to him how they wished they had known all of this when she was alive and in their care.  

This is not this is not feeling sorry for people with dementia and just making a film. It’s none of those things. These stories, at any stage of a person’s life, are a keepsake, but it’s also an enabler to meaningfully connect people: residents, family and staff.

Chris Mead

“So when they came up to me and said, ‘we really didn’t know a lot of those stories and those things about your mum, I certainly didn’t respond in a finger-pointing way,” Mead says.

“I was curious to ask, ‘well, what if you did? Would that have had an impact on the care of Mum in any way— any small way, tangible or intangible?’.  

“I think it’s curious that we quite often have a celebration of life at an aged care facility after a resident has passed away.

“It’s a way of closure, and I understand it, but can you imagine celebrating somebody’s life as they’re actually coming into the facility?”

Chris Mead believes that if aged care workers can have a clearer picture of their residents’ identities, through his mini-documentaries, they can instinctively then be able to provide more tailored care.

“So my daughter and I looked at each other and we just said: ‘should we start an aged care revolution?’.”

Storytelling as a vehicle for gold-standard care

Along the way, Mead says that he has learnt that aged care, when done right, requires comprehensive engagement of three parties: the older person themselves, their family and care staff.

But Mead noticed that the vital linkages between these stakeholders were most often undernourished, wilting amidst a rushed and impersonal style of institutional care.

“And this is not to say that my mother didn’t receive excellent clinical care,” Mead is keen to emphasise.

“[But] she did notice carers asking things of her, or interacting with her, in ways that she knew just didn’t connect … and it would be frustrating for Mum to be always asked to come down to bingo when that just wasn’t for her.”

It gives them [the family care-giver] a time to have a voice, so they will explain what it’s been like, but they can also tell you what a good day is for their loved one and the tricks and tips that they have to get through the day and to reduce times of agitation… that’s really good information for the carers.

Chris Mead

This is where story-telling comes into the picture; if only care staff could have a clearer picture of their residents’ identities, perhaps they would instinctively provide more bespoke care.

In June 2021 this idea truly came to fruition, as the Moving Story project.

Supported by Arts Tasmania and facilitated through Meercroft Care and the Munnew Day Centre, two dementia-specific care facilities in Devonport, Moving Story has involved the creation of short documentaries featuring aged care residents living with dementia.

Participating residents have had the opportunity to share key moments and memories of their lives, as well as personal accounts of their experiences dealing with dementia.

With carers ‘incredibly pleased by the results of the project’ in Tasmania, Arts Health Agency is now seeking expressions of interest from parties who can assist in expanding the program nation-wide.

Moreover, the elder’s family and professional carers are also provided the opportunity to sit down and discuss their own experiences as allies in their care journey.

“The key point is that we value the three of them, so this is not finger-pointing at the care industry,” Mead says.

“This is not this is not feeling sorry for people with dementia and just making a film. It’s none of those things.

“These stories, at any stage of a person’s life, are a keepsake, but it’s also an enabler to meaningfully connect people: residents, family and staff.”

The process is one of establishing relationships and giving agency for the residents and their families to tell their stories by their own estimation. So there is a real craft in aiming to honour and capture the true essence of the person in front of you.

Chris Mead

Following residents closely through their every day lives, Mead explains that the final products are a combination of candid everyday moments and pointed, sit down interviews.

“Sometimes we see extraordinary things happening with us that their family don’t see, so we collect those little cutaways, but a lot of the film may very well be about the family caregiver actually having an opportunity to talk about their experience.

“It gives them a time to have a voice, so they will explain what it’s been like, but they can also tell you what a good day is for their loved one and the tricks and tips that they have to get through the day and to reduce times of agitation … that’s really good information for the carers.”

A key example Mead refers to is that of an older gentleman named Ted Hicks, who clearly expresses his thoughts about living with dementia.

“He talks about it and he says what he needs: he needs music, and he tells his wife, ‘you can’t leave me alone in my room.’

“And then there’s a couple of little behavioural things that his wife says, that he’s pedantic and it takes ages to wash and clean and get ready, but that it’s really important to him.”

The Moving Story project involves the creation of short documentaries featuring aged care residents living with dementia. This superb example is about passionate musician, Ted Hicks.

Importantly, Mead says the process is self-directed, with the elder themselves dictating the direction of the film.

“The process is one of establishing relationships and giving agency for the residents and their families to tell their stories by their own estimation.

“So there is a real craft in aiming to honour and capture the true essence of the person in front of you.

“It’s very risky and it can take you down all sorts of rabbit holes.”  

But it’s a risk that, when managed through an ethical framework that places the older person at the centre of the creation process, pays off in droves, with all parties appreciating the finished product.

It’s actually drawing their family much closer together to this loved one … sometimes we need that little broker of seeing someone on film and capturing them in the here and now, that actually brings the family back together.

Chris Mead

“They just feel listened to and valued,” Mead says.

And this brings us back to Judy’s original quotation, reminding us to embrace the infinite beauty of now.

Whilst diagnosis of dementia often thrusts a person and their family into forward projections of loss and mourning, these films, Mead says, are a reminder to embrace all that is still appreciable about the present.

“It’s actually drawing their family much closer together to this loved one … sometimes we need that little broker of seeing someone on film and capturing them in the here and now, that actually brings the family back together.”  

Lyn Arnold shares her story and how she’s come to terms with having to live in an aged care environment.

Films have ongoing therapeutic benefit

Not only are the films a time-capsule of the present moment; they have been serving as a calming resource to be drawn on in times of high stress.  

“Can it be used as a therapeutic resource for someone? I already have evidence that this does work,” Mead says.

“[One participant], if she’s feeling agitated, depressed or morose, the staff actually go ‘why don’t we just watch your film again?’.”

Mead says that, on the ground, overall, carers are incredibly pleased by the results of the project.

“They are reporting changes in the way that they care for people as a result: they’re feeling more respect and understanding for the person and they also discussed that they’ve appreciated a non-clinical insight into residents that the paperwork could never provide.”

The films are also creating an unprecedented rapport between care staff and residents’ families.

They [carers] are reporting changes in the way that they care for people as a result: they’re feeling more respect and understanding for the person and they also discussed that they’ve appreciated a non-clinical insight into residents that the paperwork could never provide.

Chris Mead

“They are a conversation starter; when you have one of the family members say: ‘I went to visit my husband last week and the care staff came up and recognised me instantly’, and then they started talking about the film.

“That’s automatically a relationship that’s flourishing.”

Mead is proud that his project has begun to influence a shift in the culture of aged care facilities.

“It influences us to act with reciprocity… I receive your gift — a story — and then you honour that by watching and learning about this new client.

“So it has the potential to bring change if it was embedded in the culture of the workplace, as part of welcoming a new client into their home.”

Expansion reliant on more funding, academic backing

The program, while still mostly local in its application, is beginning to receive wider recognition.

Mead was thrilled to present his program to advocacy circles at the 7th National Elder Abuse Conference 2022, which was hosted in Hobart on February 14 and 15.

Advocates across the country were impressed by the project’s promising results thus far.

“The responses from the conference focused on to two key things,” Mead recalls.

“Firstly, the value for carers to see the person behind their dementia and then, simply, a one word description, which was that it simply speaks of ‘humanity’.

We [Arts Health Agency] need to extend the expertise that we have in our not-for-profit charity, so it’s an invitation for anyone, anywhere in the country that wants to sit on a board or has those skills to be able to move us forward.

Chris Mead

Furthermore, the University of Tasmania is conducting a qualitative study on Moving Story, with a final report to be released in due course, which will hopefully provide empirical verification of the anecdotal success perceived on the ground.

Does Mead have his sights set on expanding the program to the mainland?

He tells Aged Care News that this is definitely of interest but, humble by nature, he is still learning to market himself and his program more broadly.

“I’m usually the director hiding behind the artists… I’m not very good at pride, but I’m getting very proud of the work now and for it to be recognised, it’s just amazing.”

Arts Health Agency is now seeking expressions of interest from parties who can assist in expanding the program nation-wide.

“We need to extend the expertise that we have in our not-for-profit charity, so it’s an invitation for anyone, anywhere in the country that wants to sit on a board or has those skills to be able to move us forward.”

To view Arts Health Agency’s full collection of short films, follow this link.

And, you can read more about the agency’s work and donate via this link.  

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