When her mother was diagnosed with vascular dementia and Parkinson's disease, our critic's life was turned upside down – she reviews the low-budget, Oscar-winning film that reflects her real world experience
The saddest thing my mum ever said to me was, 'There’s something going on in my head.'
This was 18 months after her diagnosis of vascular dementia and Parkinson’s disease. While we had told Mum about her illness and tried to explain it to her, a number of times, the nature of vascular dementia – the second most common type of dementia after Alzheimer’s disease, whereby lack of blood flow to the brain starts killing off brain cells and their associated functions – means that it is hard for her to remember, never mind understand what is happening to her. This makes the moments when she does realise something of what is going on all the more difficult.
While every case of each type of dementia is different and manifests itself in vastly different ways, in our case, despite the immense restrictions imposed on Mum by her vascular dementia, the person we always knew is – for a lot of the time – still there. She is still smart, still funny, still caring, she still loves the arts and is still able to get out and about, with our help, she just has an illness which sometimes affects her ability to remember and communicate.
At times Mum doesn’t talk, which can be frustrating or difficult, but mostly it’s fine – I just ask her if she’s 'gone fishing', she nods and I either read her another poem or do something else while sitting with her, waiting for her to come back.
As a family, we made a decision early on in Mum’s diagnosis not to hide away but to do fun things with her while we still can. We’ve had afternoon tea in Castle Leslie, been for walks on the beachfront and had a Donegal picnic in the sun, have been to the ballet and to numerous concerts, exhibitions, lunches and dinners together.
Given my family experience, therefore, I approached Still Alice – featuring Julianne Moore’s Oscar-winning performance as a high achieving academic who is diagnosed with Familial Early Onset Alzheimer’s at the age of 50 – with both trepidation and great interest.
Based on the best-selling novel by Lisa Genova, the film focuses on the impact of Alice’s diagnosis on her career, her family and her marriage. Alice is a professor of linguistics, who is studying the relationship between memory and computation – the very essence of communication – just as she has to deal with the start of the failure of these faculties in herself.
The film was made for $4 million and shot in just 23 days, the only time Moore had available between her commitments on The Hunger Games. This stripped down approach – Moore noted in her Academy Award acceptance speech that she even brought her own food to the set – coupled with the insight that co-writer and co-director Richard Glatzer brings to the project from his own experience of living with Lou Gehrig’s Disease, is hugely beneficial and makes for a much more personal, humane film. There are no distractions, just a powerful story compellingly told.
As you would expect from an actress of Moore’s intelligence and integrity, she did her research, talking to activists in the Alzheimer’s Association, women with similar early-onset diagnoses, doctors and clinicians who diagnose and treat the disease, as well as visiting a long-term care facility for significantly declined patients. Her physical embodiment of the various stages of dementia is remarkable, right down to the tiniest, panicked, side to side movement of her eyes when she is struggling to express herself.
As one form of communication fades or fails, dementia patients and their families will find new ways to keep connected to themselves and each other. In the film, Alice becomes dependent on her mobile phone and its infallible memory to prompt her to answer basic questions about her life and to play ‘Words with Friends’ online with her daughter Anna. Early in her diagnosis she also records a video on her laptop, containing her wishes for what will happen when she becomes incapacitated.
In one of the most beautifully played scenes in the film, Alice’s youngest daughter Lydia (played by Kristen Stewart), asks her what it feels like to experience Alzheimer’s. Alice’s response is that on a good day she could 'pass for a normal person', while on a bad day, 'Sometimes I can see words hanging in front of me and I can’t reach them and I don’t know who I am and what I’m going to lose next.'
One of the things that the film depicts very well is the extremely stressful process that Alice’s family undergoes in adjusting to the new, evolving reality of her illness and her new ‘self’. From making very difficult decisions about care provision, to inter-sibling bickering, to the change in relationship dynamics between husband and wife, mother and children, it is all portrayed very honestly and not everyone comes out of it well.
If there is one message that I hope people take away from this film, it is simply that people with dementia are people first, dementia patients second.
Dementia is not a normal part of the ageing process – it is a disease and it needs a cure. According to figures from the Alzheimer’s Society, there are currently 15,770 people living with dementia in Northern Ireland, 396 of whom are aged 30-64. This is expected to rise to 20,549 people in 2017, with 460 of those being aged 30-64. If you would like to donate to the Alzheimer’s Society, please visit the society's online donation page now.
Still Alice runs at Queen’s Film Theatre, Belfast until March 19.
In order to maintain the privacy of her family, the writer has chosen to remain anonymous and has donated her fee for this piece to the Alzheimer’s Society.