How heart wrenching testimony about impact of pandemic on people with dementia has been turned into a play which echoes High Court ruling on unlawful discharges from hospitals to care homes

University researcher Dr Andrea Capstick turned work on how the pandemic was impacting people with dementia into a heart-wrenching play. Grace Hammond reports.

When University of Bradford researcher Dr Andrea Capstick began looking at how the Covid-19 pandemic was affecting people living with dementia, she never expected her work would end up on stage. But so powerful was the testimony, that she decided to turn her research into a play.

Voices from the Frontline includes firsthand accounts of heart-wrenching loss, of relatives separated by social distancing rules, and of the silent suffering of tens of thousands of care home residents.

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Speaking ahead of National Dementia Awareness Week (May 16-22), Dr Capstick said she and her colleagues, Dr Giorgia Previdoli, Dr Ana Barbosa and Clare Mason carried out research into the experiences of care home staff working with people with dementia during the pandemic.

The play being performed at Theatre in the Mill, University of Bradford campus

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They also had input to their study from relatives of people who were living with dementia in care homes. “The material was so powerful”, Dr Capstick recalls. “We didn’t just want to publish it in the usual academic journals. We thought it needed a wider audience. So I started to turn it into a play script.

“We used an approach called verbatim theatre, which means the stories care home staff told us were reproduced word-for-word by actors."

Several research participants spoke about the impact of people being discharged from hospital into care homes, accounts made all the more poignant by the recent High Court ruling that Government policies on the matter at the start of the coronavirus pandemic in early 2020 were “unlawful”.

Patients were discharged into care homes without testing, despite the risk of asymptomatic transmission, with Government documents showing there was no requirement for this until mid-April.

One research participant explained that initially they were told admissions would be isolated on one unit, but they were spread across the whole home. An outbreak of coronavirus quickly followed. A manager talked of being put under pressure to accept admissions from hospital and how the words ‘It’s business as usual’ were used to her when she protested.

The 25-minute play also includes the story of a woman who admitted her husband to a care home at the beginning of the pandemic thinking he would be safer there than at home, and never saw him again before his death from coronavirus several weeks later.

“There is a terrible irony here”, says Dr Capstick. “At the same time as the government was pushing care homes to accept hospital discharges, they were banning family members from visiting on the grounds of infection risk.

“Those relatives would have crawled over hot coals, tested every hour, and bathed in disinfectant just to be allowed to spend half an hour face-to-face with their loved ones. But they were barred, and people with hospital-acquired infections were allowed in.”

The play, which is performed by a cast of six non-professional actors and directed by local care home worker Kathryn Carmichael, was performed at the university’s Theatre in the Mill at the end of March.

That show was in memory of Kevin Scanlan, a long-stranding member of the University’s Centre for Applied Dementia Studies’ Experts by Experience panel prior to his death in a care home in September 2020.

Kevin had previously acted as an advisor to Emmerdale actor John Middleton, when his on-screen character Rev Ashley Thomas was diagnosed with dementia in 2015.

“We were really lucky that John Middleton agreed to come along and chair the performance of Voices from the Frontline,” says Dr Capstick.

Several members of Kevin’s family were in the audience to hear a moving tribute from the former Emmerdale actor, including his wife Karen, one of the advisors on the project.

Voices from the Frontline was also performed at another University festival (Pint of Science). Discussions with other event organisers are underway about further performances.

“We hope that if we can really get this into the public eye it will help to influence next year’s inquiry into the government’s handling of the Covid-19 pandemic,” Dr Capstick says. “It’s a story that was given far too little attention at the time, and one that desperately needs to be told.”

She adds: “We need assurances about what the public inquiry will cover, because the section on care homes in the draft terms of reference recently circulated did not mention dementia, yet this was a key factor in how Covid-19 played out in care homes.

“Our play is all about ensuring that people who didn’t have a say in all of this now have the chance to be heard. The government must listen to them.”