I should begin this blog by giving a very sizable ‘spoiler’ alert! If you haven’t yet seen Still Alice, then you may want to save this blog to read after you’ve watched the film, and by way of encouragement to view this multi award-winning movie, I would highly recommend it, albeit with a few caveats that I am going to explore in a moment.
Still Alice, based on the novel by Lisa Genova, has wowed critics and collected a series of gongs for its portrayal of how the world of 50-year-old Professor Alice Howland is affected by a diagnosis of younger-onset (early-onset) Alzheimer’s Disease. Alice is married with three children, and has built up a career as a cognitive psychology professor at Harvard and is a world-renowned linguistics expert. Such is the devastation Alice feels at her diagnosis that she admits to her husband that she would have rather been diagnosed with cancer, an admission that isn’t uncommon.
Cancer v dementia
The comparisons between cancer and dementia are stark. In the UK, the government invests eight times more in cancer research than dementia research. When a person is diagnosed with cancer, a uniform package of post-diagnostic care and support wraps around the individual. When a person is diagnosed with dementia they may get some support, they may not, but there isn’t a uniform model of post-diagnostic support and it’s often subject to a postcode lottery. Particularly notable in relation to a younger person like Alice being diagnosed is that specialised younger-onset post-diagnostic services are even harder to find.
Even the stigma attached to cancer is less than dementia, and most significantly of all many cancers, if diagnosed early enough and treated, are curable, whereas no matter which form of dementia you are diagnosed with, it’s terminal. This reality has made dementia the most feared disease in people over 50, and in the UK, dementia is now the leading cause of death amongst women.
Diagnosis and beyond
What Still Alice shows brilliantly is the pain of diagnosis, and the way in which the layers of the diagnosed individual’s life are stripped away. Julianne Moore’s performance is extremely compelling, and I applaud her for the huge amount of research that she obviously put into depicting Alice to make the struggles that the character has so believable, so emotional and so heart-breaking.
If anything, though, there is almost too much loss and trauma in Still Alice. Specifically, what disappointed me about the film was the apparent lack of support given to Alice and her family, making the prospect of living well almost impossible. A diagnosis of Alzheimer’s Disease given to a person of Alice’s age is obviously personally devastating given the implications on the career she has so studiously built up, but two factors made this diagnosis painful beyond belief.
Firstly, Alice’s Alzheimer’s is one of the rare types of younger-onset Alzheimer’s that is familial, so there is a 50/50 chance Alice’s three children will also have the gene, and if they do, they are certain to go on to develop the same form of Alzheimer’s as their mother. Learning that was, for me, the first really heart-breaking moment of the film. I was expecting Alice and her family to be offered counselling, but we only ever see Alice interacting with her neurologist.
The second particularly painful realisation is that the form of Alzheimer’s Alice has is likely to progress rapidly, and even allowing for the artistic licence of the film-making world there is no doubt that Alice deteriorates at an alarming rate. Given her and her family’s comfortable lifestyle and connections, not to mention the fact that they are articulate and capable of asking for help or searching for examples of good practice, I was really surprised to see almost no support mechanisms to help Alice as she lives with her dementia.
A missed opportunity to show living well
I would have expected someone to advise Alice and her family on coping mechanisms, and specifically someone to work with Alice to help her live as independently and actively as possible. Clearly she comes to rely very heavily on her mobile phone and we see her using a computer and Skype, but there is no other technology that is obvious to the audience.
Even more simple than that I would have expected some signage around the home and their beach house to help Alice navigate her way around. Instead, she is left to panic when she can’t remember where the toilet is, resulting in her eventually wetting herself, a highly poignant and very upsetting moment in the film.
Combined pictorial and word signs, plus pathways to important places like the toilet – signified by footsteps or lights – can really help a person with dementia to remain independent for longer in their own home and avoid embarrassing and upsetting accidents. Likewise, prompts in the kitchen, bedroom and bathroom can help a person with dementia to complete daily tasks, and in relation to the bathroom, mirrors are often removed to avoid the person with dementia feeling distressed or confused by reflections.
Given Julianne Moore’s phenomenal performance it is easy to overlook some of the other characters in the film but one particular character drew me in. Alice’s husband, John, is a formidable figure who, like his wife, has a successful career. When Alice first discusses her concerns about her brain, he completely dismisses them, and questions her neurologist when Alice’s diagnosis is confirmed.
From that moment on, however, he is obviously caught in two worlds, much like so many other partners of people who are living with dementia. On the one hand he wants to be her husband and reassure and protect Alice, but he also feels a need to continue his successful career and to provide financial support. There is a particularly tender moment between Alice and John when he is supporting her to get dressed – a scene that so many family carers will recognise.
In the end it seems he almost admits defeat, and when younger daughter Lydia moves back home to look after her mother, her father poignantly breaks down and praises Lydia’s ability to put her career on hold to care for her mother, suggesting it is a commitment he could not make.
Highs and lows
The most uplifting moment of the film arguably comes when Alice stands up in an Alzheimer’s Association conference and talks candidly about her experiences of living with dementia. I have been fortunate to see many people who are living with dementia in the UK do likewise and the effect on audiences is really beyond words – it’s almost as if you can see people’s perceptions changing before your eyes.
For me, the darkest moment of the movie is when Alice, fairly soon after her diagnosis, makes a film leaving herself instructions on how to end her life. When she later discovers that film she tries to enact the instructions and is disturbed, leaving the audience to ponder the long-debated arguments over euthanasia and the right of a person with a terminal illness to end their own life.
What Still Alice has done brilliantly is to break down stereotypes – dementia isn’t just something older people develop, which Alice’s diagnosis clearly shows. It also depicts the struggles between intellect, articulation and the degeneration associated with dementia very accurately. It shows the turmoil that family relationships go through when a loved one is diagnosed with dementia and, particularly notably for younger people, it shows how the loss of your job and career strips away so much of how the person sees themselves and experiences their life.
That said, (call me greedy), but I’m left wanting more. I wanted to climb into the screen and gently help to guide Alice, giving her support and some hope, enabling her to find the strategies that could have made her day to day life easier, helping her and her family to find the things to do that create special moments, and giving Alice and her loved ones some ideas around the opportunities to live well.
Currently there isn’t a cure for Alice’s Alzheimer’s, but the real achievement for me is to make the life of a lady who has had such a rich and rewarding 50 years prior to her dementia diagnosis as rich and rewarding as possible in her last years with Alzheimer’s. If Still Alice had managed to do that, it would have been a film that left me with more hope than sadness for the future of everyone diagnosed with dementia.
Beth Britton is a Freelance Campaigner and Consultant, Writer and Blogger specialising in issues affecting older people, health and social care and specifically dementia. Beth’s dad had vascular dementia for approximately the last 19 years of his life. She aims to provide support and advice to those faced with similar situations, inform and educate health and care professionals and the wider population, promote debate and create improvements in dementia care. Her work has been described as “Terrific,” “Amazing. REAL story of dementia,” “Insightful, heartfelt and truthful,” “Moving and inspiring.”