Irene’s story

“It gives me topics to talk about with Irene, the information I need to do my job well…I know her better…..”

When we met Irene, she was already living in St Mary’s Residential Care Home in South West London and her dementia had progressed to mid-stage. This meant her care workers sometimes struggled to communicate with her and give her the high-quality care they wanted to, particularly within the constraints of a heavy workload and limited contact time with each resident.

Her care worker Betty told us, “The only thing I knew about Irene was what she had said and what the care workers had briefly told me. Unfortunately, on a day-to-day basis, we don’t get time to interact for too long with a person about themselves and their past. It’s more about the practical demands of day-to-day care.”

Once our filmmaker had created the Film Package with Irene, there was an immediate impact on her quality of care. Betty says, “Having the film was so enlightening about what her life had been like…they’re a benefit to carers because you see them as a different person.” Another care worker, Sonja, says, “It gives me topics to talk about with Irene, the information I need to do my job well…I know her better.”

Tom’s Story

In 2016, Tom was diagnosed with HIV Associated Neurological Disorder (HAND), which had caused dementia. He experienced a long period of minor cognitive impairment from 2005-2011, culminating in disciplinary measures at work for failing to perform to his full ability. His condition then deteriorated until he was diagnosed.

Things were then at a low both for Tom, who was presented with a life-changing health condition, and for Mike, his partner and only full-time carer. Mike describes the deterioration of Tom’s wellbeing: “Tom coped with the changes heroically, but it was clear that with deficits affecting speech and decision-making so profoundly and rapidly, he became withdrawn and shied away from contact with friends and family. Possibly there was some embarrassment, fear of not being able to fully engage in company, feeling less valid – it’s difficult to know.”

In early 2017, Mike and Tom were told about My Life Films from a friend in the dementia community. Mike describes initially feeling hesitant, before going ahead with the service: “I prevaricated a while before contacting this amazing company, initially, as I felt some concern about how it might make Tom feel to see himself on film in his condition. After eventually contacting My Life Films one of the team came to visit us at home and explained to us how the films would be put together, and I was convinced. After the film was delivered, we contacted all our relatives to either visit them with the films or give them on-line access, all in very disparate parts of the UK. The feedback has been astounding and for the first time I believe some of them began not only to understand our situation better but became more sensitive to Tom’s needs and how they could engage with him more successfully.”

Mike’s words about Tom’s response to the films speak for themselves: “Tom’s reaction to seeing himself on film was enchanting. Despite very limited vocabulary, Tom whispered to me about the things he was watching as well as pointing and smiling. Indeed, every time we take time to watch the film together his reaction is the same. The wonderful thing is that this is now available to us (and others) forever: a constant at a time when, sadly, things are otherwise changing and slowly fading.”

“Tom’s demeanour following the film has improved, in part I believe because it has given us a reference point in our lives. By showing his film to friends, family and many other people as well as co-carers, we have ensured understanding and awareness and closer support. Tom is now very happy in group situations, even among complete strangers and large crowds. I think the film has given him confidence both in recognising himself as someone who is loved and understood by many, as well as showing him how it has validated his wonderful life and contribution to our relationship, his family and the many other people he has touched in his life.”

Mary’s story

“It’s like it resets me and makes me feel able to do things. It has brought me so much joy.”

When we first met Mary, 84 years old and diagnosed with dementia, she regularly had what she would describe as “bad days” where she became forgetful, disorientated and anxious, and didn’t know what to do.

After Dr Woodgate at Barnes Hospital in South West London recommended Mary contact us, we made two films about her life. Our filmmaker Josh met Mary and her family at home to learn about her life, browse through her photos and choose her favourite music. He also filmed interviews with her, which she was happy to take part in. Josh then produced and edited two films, our full Life Story film and a shorter Carer introduction film, which he gave to Mary during a premiere screening at her home.

The impact was instant and transformative. Mary now watches the Life Story Film several times a day; it boosts her wellbeing and helps her manage her moods. When she becomes forgetful, the film helps her remember. When she feels disorientated, it focuses her. When she’s anxious, it calms her down. Mary says, “It’s like it resets me and makes me feel able to do things. It has brought me so much joy.”

The film has made her more active, enabled her to live independently at home for longer, and given her the confidence to be more sociable. She now meets friends at a local centre for older people and talks to them about her life.

Mary and her family are keeping the shorter Care Introduction film for when Mary requires care at home or eventually needs to move into a care home. They are confident that she will receive good quality, person-centred care as a result.