New exhibition reveals stories of caring for loved ones dying with dementia

Photo of Tia King © Allie Crewe

Dementia is the most common cause of death in the UK, but access to good end of life care is highly unequal.

Empowering Better End of Life Dementia Care (EMBED-Care) is a six-year research collaboration between King’s College London’s Cicely Saunders Institute and University College London that aims to generate a step-change in how care is provided. Now as part of the project, a new exhibition reveals the human stories of what it’s like to care for a loved one with dementia at the end of their life.

“Looking back at it now, obviously at the time it was stressful because you’re in the moment, but I would do it all over again. I just feel like we could have done with more support from social services.” Tia King is speaking on Zoom from the north London flat where she cared for her nan Cherry until she passed away in 2022. Tia is one of three people featured in the exhibition DEMENTIA JOURNEYS, whose stories highlight the complexity of needs to ensure comfort and dignity for people at the end of their lives.

Cherry was already receiving daily visits from carers when she was diagnosed with vascular dementia. “We started to notice things that were just not like her; she would be asking for things that she had as a child, or she would repeat herself. But we never realised that she had dementia until social services got involved and put in a safeguarding referral. That was in 2018.”

Tia described the battle to keep Cherry at home. “She had always made it very clear to all of us, no matter what happens to me, don’t put me in a home. She was adamant. But social services insisted that I couldn’t give her the care that she needed, which confused me, because I’d been working alongside her carers and there had never been a problem. So it was a year of back and forth - we had about two or three different social workers. The district nurses were on our side, funnily enough. Eventually we got there with the carers package: four times a day, plus me.”

Tia, aged 22 at the time, gave up work. “In all honesty, it wasn’t that hard looking after her. The only thing that was a strain was having to turn her over in bed every half an hour, because her body and her legs had seized up over time. Eventually, they said that she couldn’t eat solid food. That was hard because she was a big foodie. She used to love food, love cooking.”

Once the decision had been made not to move Cherry into residential care, social services left them alone. “This is why I felt that she was neglected, not by us, but by them, because they didn’t bother coming around to check on her. They didn’t ask if I needed any help.”

Tia’s story also highlights failings of their local authority housing provider. “The unfortunate thing was what she passed away from. We had been suffering from a lot of damp, her room was affected the most. She caught pneumonia in the summertime.”

The stories of Tia and the other carers portrayed in the exhibition are told through comic strips illustrated by graphic novelist and doctor Ian Williams, and through portraits by award-winning photographer Allie Crewe.

“This is the first time I’ve done anything like this,” Tia said. “I think my nan, she’s in spirit somewhere, pushing me towards it. I thought I’ve got to do it. I was afraid of meeting Allie because I hate getting my picture taken. But she made it very easy.”

Allie also has direct experience of caring for family members with dementia, so there was a personal connection to the project. Two times winner of the BJP Portrait of Britain prize, she describes transformation as a key theme in all her work.

“I think transformations are the most optimistic things in life,” Allie said. “There’s a sense that often when we’re going through difficult times, that is transformation. It’s often a painful process. I had a really strong sense that Tia is going through that transformation. She’s so articulate, so passionate. She feels like a woman who’s on the cusp of finding her power. I wouldn’t be surprised if she becomes a campaigner, there’s that strong sense that it’s her time to make a difference.”

Allie continued, “I felt her story was about love. Tia described caring for Cherry as a privilege. And it’s humbling when somebody tells you that story of their life: if somebody has loved them, then it becomes a privilege to care for them at end of life.”

And what does Allie hope that visitors will take from the exhibition? “If we don’t have academics doing this kind of research, we’re never going to change the narrative of dementia. It seems to me that’s what the families all want to see. The social workers, the hospitals, the care system... they want it to change because they feel they understand their loved-one the most, and that they are a valuable resource in letting this person live with dignity at their end of their life. The women in these portraits are helping to change the narrative.”

Tia herself is now training to become a carer. “I’ve now come to realise that’s what I want to do, I literally found my purpose from it. So my aim now is to get into the care sector and make a difference in people’s lives. And this is why I feel like this exhibition got sent, or my nan is sending it my way.”

DEMENTIA JOURNEYS: TOWARDS BETTER END OF LIFE DEMENTIA CARE is on display in Gallery 2 from 3 April – 22 June