Why Julianne Moore's sensitive portrayal of dementia breaks taboo
The film Still Alice depicts early onset Alzheimer's. Joy Watson, from England, and Tommy Foster, from Co Antrim, reveal what it's really like to live with the debilitating illness.
There's a wealth of memorable lines in Still Alice, the Julianne Moore vehicle about early-onset Alzheimer's that opens in cinemas across Northern Ireland tomorrow.
Such as this one: "Live in the moment," I tell myself. "It's really all I can do." So says Alice, the esteemed 50-year-old linguistics professor played by Moore, in one of the most poignant scenes in a highly emotional film that follows Alice and her family's journey through diagnosis and beyond. "And that's absolutely how it is," says Joy Watson, who was diagnosed with the disease two years ago at the age of 55.
"When you can't remember what someone said to you an hour ago, or what you walked into the room for, you have no choice but to live entirely in the here and now, and Julianne Moore portrays this beautifully. In fact, Alice felt so much like the women I know at my early-onset dementia support group that I felt myself getting really cross with Alec Baldwin for leaving her to her own devices too much, and for putting his business first. Several times I had to remind myself that it was just a film."
Like Alice, Joy first noticed symptoms when she was around 50. "I found myself dropping things, bumping into things and getting my words muddled up. At first, I put it down to clumsiness, but it got worse. One time, I got lost for so many hours that it took a search helicopter to find me."
Tony, her husband, who is 12 years Joy's senior, realised what was going on, largely because both his parents had had dementia. And although the condition, which affects 850,000 people in the UK, is usually associated with the elderly, he was aware of the statistics that more than 40,000 of them are under the age of 65. Soon Joy, who had spent much of her life as a carer working with people with dementia, started to suspect it, too.
However, like many people who report symptoms of memory loss to their doctors in mid-life, nobody took them seriously. "So we spent the next five years knocking on doors, constantly being turned away, as doctors put it down to stress, depression and frankly anything they could think of that wasn't dementia," explains Tony.
Eventually, on Joy's 55th birthday, they got a diagnosis. "Happy birthday, Mrs Watson," the consultant said, before telling Joy that the scan not only showed she had Alzheimer's, but that it was "quite progressed".
"I didn't hear a word she said after that," recalls Joy. "She could have said I'd won the lottery and I wouldn't have taken any notice."
Tony, however, remembers the moment as one of relief. "It wasn't that we had the diagnosis we wanted, it was that we had an answer," he says.
In the film of Still Alice, filmmakers Richard Glatzer and Wash Westmoreland, adapting the bestseller by Lisa Genova, take this life-changing moment of diagnosis and then track the rapid progress of the disease and its fallout for the family, as some try to dodge responsibility and others attempt to beat the unbeatable. "It's so true that the moment of diagnosis changes everything, with me no longer trusting myself to look after the grandchildren, for example," says Joy, although she points out that, for her, things have been slower.
"I certainly forget more things - everyday things like turning on the wrong taps - and while I used to remember things for a couple of hours, I am now lucky if I remember things from a few minutes ago. But I still live a good life."
The film is also spot on in showing that everyone within a family deals with dementia in such incredibly different ways, says Joy.
For Tony, who was thankfully retired and therefore able to support Joy on a daily basis - which is not all that common with early-onset dementia - the biggest challenge is to restrain his urge to take over from her. "I want Joy to have as much independence as possible, but there are things I have to do, such as the cooking, because Joy might forget to put the gas on or, worse, to turn it off," he admits.
Meanwhile, their sons are a world apart in their approach to their mother's condition. "The eldest one, now 33, has always been very matter of fact and a strong coper about it all, while the younger one, who is 30 and was living with us when the symptoms came on, saw things gradually getting worse and has taken things quite to heart," says Tony.
That said, it's not always obvious to strangers that Joy has dementia. Actually, sometimes the only clue is the odd word in conversation being filled in with silence ("I can see the words hanging in front of me and I can't reach them," explains Alice in the film). But the fact that her dementia isn't always obvious is not necessarily in Joy's favour. "I used to get a lot of tutting and negative comments in shops when I became slow or confused," she explains.
So, together with Tony, she decided to take action. The couple put together a booklet for counter staff, which they printed off and distributed in shops in the centre of Eccles, in Greater Manchester, where they live. "We'd go back a while later to see if they were interested in displaying a sign that they were dementia friendly and, out of all the ones we visited, only two businesses weren't interested," explains Tony.
From there, things spiralled, and last year Joy and Tony were involved in launching Eccles as the first dementia-friendly town in Salford.
For the occasion, Joy dyed her hair bright purple (the colour of the dementia awareness campaign), and still sports it with pride as she and Tony continue to join forces with businesses, local fetes, organisations, universities and - most recently - schools, to help bring an end to the discrimination and social exclusion that people with dementia still regularly experience.
"So many people see dementia as frightening, and talk in hushed and fearful tones," explains Joy, who was given a Champion Award for her work in raising awareness in the Alzheimer's Society Dementia Friendly Awards last May.
What's required, she thinks, is action - which is why her latest project involves fundraising for a local community centre with attached bungalows, specifically for people with early-onset dementia and their families.
This week, she and Tony will be among a group of people taking their knowledge to their local Odeon cinema, where Still Alice audiences can talk to them after seeing the film. But in spite of Joy's cheery nature, she won't be telling them that living with dementia is a breeze.
Just as Alice relies on her iPhone and blackboards to remind herself of everyday facts, Joy has a "who's who" book that she's made, with photos and names of everyone in her life. And just as Alice has moments of being terrified of the future, Joy has moments of dread, not least because there is no known cure for dementia.
"But we will also be able to tell people that - while in the film, Alice has a familial form of Alzheimer's, which is passed down through families - this is, in fact, very rare," says Tony. "And perhaps most importantly, we will be able to tell them that, while it is a horrible disease, we cringe when people use the term 'suffering with dementia' because, with the correct support, you can live well.
"Joy is still Joy. In fact, one of her favourite T-shirts is one I had printed for her that says, 'Don't Forget the "Me" in Dementia'. It's something she has said more than once."
- Alzheimer's Society National Dementia Helpline runs seven days a week and can be reached on 0300 222 1122, or by email email@example.com. Or visit alzheimers.org.uk
'Just because you have it doesn't mean you're ready for the scrapheap'
Retired Department of Environment lorry driver Tommy Foster thought his life was over when he was diagnosed with dementia six years ago.
Instead, Tommy (72) found a whole new world of opportunity and friends when he joined his local Alzheimer's Support Group.
He says he has learned to take his illness one day at a time and not worry about what the future might hold.
The father-of-three and great-grandfather has coped with the support of his wife Elizabeth (70) and three sons, as well as many new friends he has made through the various classes he attends organised by his support group. Tommy does suffer from memory loss and one of the toughest aspects of his illness has been losing his independence.
But he has a positive attitude and enjoys a quality of life which he says he could not have imagined was possible when he was first diagnosed.
He says: "It is frightening to be told you have dementia. When I was first told, I asked people what was the quickest way of dying. I thought my life was over.
"I have learned that, just because you have it, doesn't mean you are ready for the scrapheap.
"I've also learned to keep my mind occupied. I go to a gardening group through the Alzheimer's Society and a painting group. We've also set up a choir which meets on a Friday morning. We've made a DVD and a seed calendar and the people you meet with dementia, once they learn to trust you, are the best friends you will ever have. I have made some great new friends."
While he values new friendships, Tommy also found that having dementia meant losing some old friends, something which still baffles him and which he laments.
He adds: "I don't know whether it's because they don't want to talk to you, or they don't know how to talk to you, but you do lose friends. I've had people avoiding me, but the way I look at it is if they don't want to talk to me, then there's nothing I can do about that."
Tommy, who lives in Ahogill, Co Antrim, does struggle with his memory.
Large chunks of his past have been wiped out and he has no memories of his boys' school years. He also found it difficult coming to terms with the loss of his independence.
He used to enjoy getting the bus into Ballymena on his own for a walk around the shops, which he can no longer do.
"You do lose your freedom for a while. I loved going on my own into Ballymena and I think I still could, but my family are too worried that I might get lost, so I don't go anymore," he says.
"I understand that they are a bit wary of letting me do things. I can't really go very far unless my wife or one of my sons is with me, but I'm what you would call a bit of a homer, so I don't really mind.
"I have a six-year-old dog, Prince, and he is my best friend and I love to take him for a walk on my own around Ahoghill.
"My sons tell me that I used to draw birds for them and other pictures, but I don't have the concentration to draw now. I really enjoy the painting classes with the support group, though.
"I think the only way you can live with dementia and be happy is to take it day by day."
By Stephanie Bell