Kallur Suresh on the portrayal of young onset Alzheimer’s disease in Still Alice

Generation Q 12 June 2012Imagine you’re a world renowned professor of linguistics at New York’s Columbia University. You’ve written game changing books on how children develop their language proficiency in early life and are regularly invited to give scholarly lectures in academic institutions worldwide. You’re at the peak of your academic career, but start to notice that you struggle to find crucial words during your lectures and get lost while jogging on the familiar campus. It’s a very scary experience, one that you don’t necessarily want to acknowledge to yourself or share with others.

Then you start becoming repetitive in conversations and have subtle short term memory lapses. You forget you just met your son’s girlfriend, forget familiar recipes, and say the same things again and again at the dinner table, at times causing embarrassment to others. You become terrified of “losing” words and test yourself whether you can remember random words from the dictionary after a few minutes. You write yourself some questions to answer on your smartphone. Being very intelligent and insightful, you plan for what to do if you can no longer answer these simple questions and how to get to that plan stored on your computer…….

Julianne Moore’s moving portrayal of Professor Alice Howland with young onset Alzheimer’s disease is technically flawless. The story is based on Lisa Genova’s 2007 novel of the same name. The director, Wash Westmoreland, has handled this difficult subject sensitively and sympathetically. One particularly poignant scene is where Alice and her husband John (Alec Baldwin) tell their grown-up children about her diagnosis and its implications for her and for them. Her eldest daughter Anna, a lawyer trying for a baby, tests positive for the Alzheimer’s gene, son Tom—training to be a doctor—negative, and the other daughter Lydia, struggling with an acting career, does not want to know. This is a common issue facing many patients and their families with familial young onset Alzheimer’s disease—balancing the cost of knowing if the children carry the mutation and will get the disease against the uncertainty of living with the risk of being affected.

Alice herself feels that she cannot make others understand what she is going through as not many people know about young onset Alzheimer’s and find it difficult to empathise with her experience. At one point, she even tells her husband she wishes she had cancer. The film deftly portrays the stigma associated with the disease and Alice’s growing inability to manage her work and the household as before. It tracks her journey through the disease until, ironically, the linguistics professor can no longer articulate her thoughts and loses all meaningful language. She can only say one word.

The latter part of the film reveals how Alice’s strategies for coping with her failing cognitive functions are overwhelmed by her rapid decline. Her symptoms cause friction with her husband and children, who struggle to attribute her behaviours to her illness. Her description of the subjective experience of illness is spot-on: “I have good and bad days. On a bad day, I can’t find myself. I have always been so defined by my intellect, my language and my articulation, but I sometimes see the words hanging in front of me and I can’t reach them and I don’t know who I am. I don’t know what I’m going to lose next.”

With a lot of encouragement and some difficulty, she manages to give a moving speech at the Alzheimer’s Association conference, sharing her experience of the illness and how it has slowly eaten away at her intellect, engagement with her world and personality. She becomes just a shadow of her former self. “I rail against myself for not being able to remember things, but I still have moments in the day of pure happiness and joy. I am not suffering, I am struggling…struggling to be a part of things, to stay connected to who I once was. So, all I can do is live in the moment. My greatest ambition is to still remain the Alice I once was.”

Although the film is quite melancholic at times—it can’t be anything else given the nature of the disease it depicts—it has the uplifting message of Alice struggling to fight the symptoms of Alzheimer’s, and celebrating her life and achievements.

Watching the film made me relive the human cost of such a devastating illness. For professionals dealing with such a cruel disease on a regular basis, it is easy to become somewhat detached from the human and experiential side of it, and hide behind our role as doctors focussed on the technical side of diagnosis and treatment. It is also perhaps one of our coping mechanisms, helping us maintain a sense of objectivity and control in the face of our helplessness in treating the disease and its inevitable progression.

Moore has won several awards for her performance as Alice, including the BAFTA, a Golden Globe, and an Oscar. She has put a lot of effort into her role and really gets into the skin of the patient with Alzheimer’s. The film has been endorsed by patient groups as “shockingly accurate” and will no doubt help advance public understanding of Alzheimer’s Disease—particularly the young onset variety. One of the benefits of such an enhanced awareness is likely to be patients seeking help sooner if they develop symptoms and feeling less stigmatised in doing so.

Kallur Suresh is a consultant psychiatrist in dementia/frailty service at the North Essex Partnership University NHS Foundation Trust.