Keith Oliver waited for his wife Rosemary to go out and then, with his nerves rising, he laid out chocolates and wine in the living room and waited. Soon, his new friends started to arrive – two clinical psychologists and three psychology students from the local memory clinic – and together they watched Still Alice, Julianne Moore’s depiction of a highly successful, family-orientated woman who is diagnosed with early-onset dementia and loses almost everything.
Keith was head teacher of a primary school in Canterbury, Kent, when a doctor gave him the same news on New Year’s Eve in 2010. He was 54. “But I’m a positive person and I didn’t feel any fear,” he says. After the diagnosis, he walked with Rosemary along Margate beach, where he told her: “One door closes and another will open.” Now, he says, his biggest fear is being left on his own.
Rosemary could not bring herself to watch the film, but he felt he had to. “The film confronted each stage I’ve gone through, like a checklist,” Keith says. “It captured how dementia crept up on me, how it knocked my self-esteem and brought doubts into my mind before I even knew what I was dealing with. It captured how insidious the disease is, how it can subtly eat away at you. It captured how I tried to fight it, how I found coping strategies, how I tried to hide it. But her decline happens so quickly – I found that very difficult to come to terms with.”
Still Alice is directed by Wash Westmoreland and Richard Glatzer, who has the neurodegenerative condition Lou Gehrig’s disease. The film, an adaption of Lisa Genova’s acclaimed 2007 novel, was shot fast last March, the only time Moore was free from her commitments on the Hunger Games films. Moore, whose performance has won her a Golden Globe, a Bafta and an Oscar nomination, prepared for the part by speaking with activists from the Alzheimer’s Association, women given early-onset diagnoses, and doctors who treat the disease.
Still Alice, says the actor at the London premiere of the film, is motivated by misconceptions about Alzheimer’s, which causes up to 70% of dementia cases. “I don’t think there’s enough information,” she says. “I think an idea still stands that Alzheimer’s is all about memory. One of the things I found is that people often simply feel lost. Alzheimer’s is more akin to an ongoing panic attack where suddenly nothing has any reference. It’s like having to cut through fog every day.”
What can be done? “There’s very little awareness,” says Moore. “But 30 years ago, there was little awareness of cancer. With cancer, we’ve spent the money needed to properly research it and we’ve talked about it openly. That’s really changed things. I can only hope that happens with Alzheimer’s.”
Hovering just behind Moore, with a grin on her face, is Wendy Mitchell, who has made the trip from York to see the premiere. Wendy was diagnosed with Alzheimer’s last July. She was 58, a teetotaller who ran every other day and worked as an NHS manager. “I came out of my office one morning, which had been the same old office for a couple of years, and just stood there not knowing where I was,” she says. “I would hear voices in the corridors and not have a clue who they belonged to.” Like the fictional Alice, she’s now deeply reliant on her mobile phone to keep her connected and organised. “It’s proved a life-saver,” she says.
Wendy, who Moore thanked in her Bafta speech, still works full-time and is supported by her two daughters: Gemma, 31, and Sarah, 34. “The guilt I feel for my daughters will never go away,” she says and worries about “the day I look at the two most precious people in my life and don’t know their names”. She’s been surprised at how many difficult conversations she’s had with people she thought she could rely on. “I felt dismayed at many people’s perception of the illness,” she says. “For a lot of people, it’s a very embarrassing conversation. They seemed willing to simply write me off, or appeared to have a stereotypical image of someone at the end of the disease rather than the beginning.”
What did she think of the film? “I was left with a feeling of helplessness and a sense of inevitability that reached deep down into the pit of my stomach. It was a shockingly accurate reflection of my own experience. It felt like I was being shown my own future.”
Hilary Doxford, from Yeovil, was 52 when she was told she had dementia. She said the signs had existed a full seven years before she was diagnosed, but her doctors kept giving her an all-clear. After the last all-clear, she married her husband, Peter. When she was eventually told she had dementia, she felt relieved to finally have an explanation. “Then I panicked about how much time I had left,” she says, “and I wondered what to do next.” So she started researching the disease, which left her feeling “sad and guilty about what impact it would have on Peter”.
For Hilary, the film was like looking into a mirror. When she first told Peter she had dementia, he said: “Whatever happens, I’m going to be here for you.” As the disease worsened and her memories started to go, she told her husband she’d rather have cancer, just as Alice does. “But we’re still capable of making each other very happy,” she says. “I’d do anything for him and he’d do anything for me.”
Hilary was struck by a scene in which Alice’s daughter, played by Kristen Stewart, reads her the Elizabeth Bishop poem One Art that talks about “an art to losing”. Hilary says: “There is an art to losing and you need to master it. I’m losing my memories, my abilities, my happiness – and one day I will lose being me.”
Keith, Wendy and Hilary are three of the 42,000 people living with early-onset dementia in the UK, out of a total of 850,000 people with dementia. Over 1m people will have the disease by 2025 and over 2m by 2051, according to the Alzheimer’s Society. It currently costs the UK economy over £26bn every year, which works out at around £30,000 per person with dementia.
“The research we carried out last year showed there are twice as many young people living with dementia than we thought,” says Jeremy Hughes, chief executive of the AS. “We find people go to their GP time and time again before dementia is considered – they are told they have depression, or they’re overworked, or it’s a lifestyle problem. There’s very little training and very little support for families.”
Dementia is not just about memory loss. For many, the disease can manifest itself through a change in their nature, their emotional disposition. “Things still go into my brain and I still process them in the same way,” Hilary says. “It’s the recall I don’t have.” Without it, people are more at the mercy of their moods, of how a certain environment or person makes them feel at that moment. As Julianne Moore says: “I wanted to understand how, as she loses her intellectual capabilities, Alice moves toward a very profound emotional connection with her family.”
Keith singles out intellect as a big factor. “I worked as a teacher for 33 years,” he says. “So I know how we assess intellect in kids from the age of three onwards – and a big part of intellect is memory. If memory is compromised, so is your intellectual capacity. I try to convince myself those two things are separate; I feel as intellectual as I was four years ago, but cognitively I’m not a patch on what I was. It means I’m much more emotional. I have a lot of foggy days and a lot of sunny days.”
How much will he be able to remember of this interview? “I’ll remember we talked, I’ll remember feeling relaxed, and I’ll remember we talked about this wonderful film called Still Alice,” he says. “But the detail that once would have been so important to me will have almost completely gone.”
He pauses and adds: “But that just means I can look forward to reading it in the paper. So there’s a silver lining in everything, you know?”
