6 Feb 2015

Art meets life: two tales of early-onset Alzheimer’s

There is a moment in the film Still Alice where the main character’s daughter – played by Julianne Moore – asks her mother asks what does it feel like to have dementia.

“I have always been so defined by my intellect, my language, my articulation, and now sometimes I can see the words hanging in front of me,” Alice says, “and I can’t reach them and I don’t know who I am and I don’t know what I am going to lose next.”

This is  the story of Alice that takes us from the diagnosis of early-onset Alzheimer’s – she’s only 50 – ​to the loss of her memory and her words,  right up until the end where there is just the smallest glimmer of who she once was.

This is a film, of course – a story based on a book of the same name by Lisa Genova. But it is a story being played out in real life. Every day, everywhere, if you think 850,000 people in the UK have dementia and the most common form is Alzheimer’s.

Seven months ago, Wendy Mitchell (above) was diagnosed with early-onset Alzheimer’s at the age of 58. We met at her home in York. Her response to her diagnosis has been remarkable. She says she is fiercely independent and she wants to maintain that for as long as she can.  She is intelligent, still working, although she plans to retire at the end of March.

She gives talks on dementia, she sits on advisory panels.  She writes a blog. And for the Alzheimer’s Society she reviewed Still Alice.

“I knew it would be a difficult film to watch – because it would be like seeing my future unfold before me,” she said.

And then she joked that she’d read the book three times, which was the advantage of having Alzheimer’s. “It’s brand new each time,” she said. “But you are reading book over a week. The power of this film is seeing it all develop over 90 minutes, from start to end, and that was shockingly powerful in watching your future unfold before you.”

Moments of blankness

It is the subtle depictions of Alzheimer’s that are so strong in this film. There is a scene in which Alice is out for a run – this is just before she is given a diagnosis – and suddenly she doesn’t know where she is.

Wendy, too, had been warned of these moments of terrifying blankness.

“I just remember freezing, not knowing where I was or who all the voices were I could hear. I just walked down the corridor and locked myself in the washroom for three to four minutes. After three or four minutes the fog lifted and I was aware of my surroundings again. It certainly makes your heart beat faster.”

The strength of this film is obvious. It is raising awareness of a disease that has had too little attention. Jeremy Hughes, chief executive of the Alzheimer’s Society, said: “The fact that Hollywood even wanted to make such a film, that fact that Julianne Moore is up for a Bafta and an Oscar, shows that people are now opening their eyes to needing to do something about Alzheimer’s, needing to help people better, needing to talk about it.

Moments of struggle

There is another important consideration, too. This is not a disease where the person is diagnosed and is immediately incapable and incoherent. Its progress is different in every case, so where Alice deteriorates fairly rapidly, Wendy may have far longer.

When you talk to her now, there are moments when you can see a struggle to speak but it is fairly subtle. Around the house and on her phone are notes and reminders and alarms. In the film, Alice repeatedly asks herself: “What is the name of your oldest daughter? What is my address?”

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Julianne Moore in Still Alice

Wendy has the same note on her fridge. “What’s my address? What month are my daughters’ birthdays? What month is it today? How many children do you have?”

And what happens when she cannot remember? In the film, Alice has what she calls the Butterfly Folder. In it she has recorded a message from her lucid self to the self she knows she will become. In it are instructions on how to kill herself when she feels the moment is right. It doesn’t happen – there is even a semi-comical moment when she has to go up and down the stairs because she keeps forgetting the instructions telling her where the pills are and what she should do with them.

Slipping over the line

It was a hard question to ask Wendy, but did she have a butterfly folder? “I have friends with dementia who have booked to go to Switzerland. I haven’t formulated where I want to be and what I want to do. But what the film highlights is that there is no black and white line. You may not know when you slip over that line.”

This is a film, too, about loss. Loss of memory and loss of the person you once were. Wendy says she did lose friends at the beginning, but because she has written a blog it has shown them she is Still Wendy.

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“There is an ignorance about the disease,” she said. And she agrees with a scene in the film when Alice says: “We become ridiculous, incapable, comical. But this isn’t us. It is a disease.”

Alice also says:  “I am not suffering, I am struggling.”

That is what Wendy says, too. “I’m not suffering, I’m not in pain, I don’t have an illness. I don’t want pity.”

‘We never lose our emotions’

But what about the title of the film: Still Alice? I ask Wendy if she believes that Alice is not Alice?

“One thing we never lose is our emotions. It’s portrayed well in the film. At the end, her daughter reads to her and she asks her mother what it was about.

“Alice says: ‘Love.'”

And she says there are three things she fears: going over the edge into “becoming the person I’m not now, losing my independence, and not recognising people who mean the most.

“There is a moment in the film when she had to be reminded it was her daughter. That was stomach-churning.”

Click here for a link to Wendy’s blog, which she has kept since her diagnosis in July 2014.

Still Alice appears in UK cinemas from 6 March

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8 reader comments

  1. Maggie La Tourelle says:

    Thank you for bringing Alzheimer’s to the news. It is important to bring greater awareness to the general public about this disease. I am familiar with the issues raised and have written about this in my book, The Gift of Alzheimer’s. Alice and Wendy both say emotions live on and love remains at the heart of the person. Neuroscientists can confirm this. They have found that emotional memory seems to remain in tact and people continue to learn emotionally even when short-term memory has been lost. There is so much more I could say about the hidden potential in people with Alzheimer’s. As well as the negative side, people need to know the positive side. ‘Love never dies.’ Pat (my mother who had Alzheimer’s)

  2. Karen Rippon says:

    My mum died with alzheimer’s in August last year. She loved me until the end even though she couldn’t recognise me as her daughter. She also had moments of lucidity when she seemed to know what was happening to her. It was sad to see such a vital, independent and intelligent woman become a shell of who she was but I could still see her.

  3. Helen Roberts says:

    Excellent interview. Wendy Mitchell inspiring! Not sure she’d relish being described as a “sufferer” though…

  4. Damian Murphy says:

    http://dementiavoices.org.uk/resources/deep-guides/
    Victoria, a great newspiece on the telly but what are you thinking of in perpetuating the negative self fulfilling prophecy of ‘sufferers’ on this page.
    Above is the link to the DEEP guides please read the guide on language. It is directed specifically at journalists.
    But did you really need that when Wendy herself tells you, ‘I’m not suffering ..’
    Have you learnt anything from this very human encounter? I’m sure you must have, but the thoughtless adherence to clichés and damaging stereotypes is an indicator of the power of an all-too embedded (yet misguided) journalistic desire to sensationalise or spice up a story that is already beautifully seasoned.

  5. Julie Joyce says:
  6. Justin Mazzotta says:

    I just wanted to comment that I don’t think it will help to change attitudes if people are put down and condescended as Damien seems to have done. I think it is a good article with lots to learn from.
    I tend to say a ‘person with dementia’ or something like that when we refer to a person with dementia or Alzheimer’s disease etc. in my role as a dementia support worker as people seem to experience dementia in a great variety of ways.

    1. Damian Murphy says:

      please don’t let any unintended condescension detract from a point that needs making with a link to a very practical DEEP guide!

  7. James says:

    Great documentary short on a young woman with Early Onset Alz at 36
    http://youtu.be/alFphwiTn44

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