OPINION: For many of us, memories are our most precious possessions; they makes us the people we are. Consider how you would feel then if your memories were stripped from you, as they are from people diagnosed with dementia. This is exactly what happens to the central character of Still Alice, a film opening today nationally.
Directed by Wash Westmoreland and Richard Glatzer, the film is based on the eponymous novel by Lisa Genova. Julianne Moore has been tipped to win the Best Actress Oscar for her portrayal of Alice Howland, a distinguished linguistics professor at Columbia University.
Still Alice captures the emotional upheaval that results from a diagnosis of dementia and provides a compelling insight into the world of people living with the condition.
The shock of diagnosis
When the film opens, Alice Howland appears to have it all. At 50 years of age, she is the picture of elegance and good health, exercising frequently, cooking elaborate meals and maintaining a world-class academic career as well as a happy family life.
But it quickly becomes clear that Alice’s memory is failing. Fleeting moments of disorientation and confusion begin to punctuate her life. Wondering if she has a brain tumour, Alice consults a neurologist only to find she is in the early stages of Alzheimer’s disease.
Current estimates suggest approximately 7.7 million new cases of dementia are diagnosed worldwide each year. The disease typically evokes images of the frail elderly, but younger-onset dementia, which is what affects Alice, strikes people under the age of 65.
Estimates suggest younger-onset dementia affects approximately 54 in every 100,000 people aged between 30 and 65 across the population. There are now even calls for care facilities to adapt so they can cater for these often physically healthy people.
The diagnosis of dementia affects Alice and her family in profound and different ways. The implications of Alice’s condition dawn on her husband as he begins to comprehend the care she will need. Her children move from shock to sadness and, ultimately, fear as they grapple with the decision to undergo genetic testing for Alzheimer’s disease.
A fifth of younger-onset Alzheimer’s disease is familial, meaning there is a genetic cause for the condition. Currently, we have genetic tests for three causative genes – presenilin 1 and 2 and amyloid precursor protein (APP). If someone has one of these genetic mutations, they will usually show clinical signs of dementia before the age of 65 years, and have a 50% risk of passing the gene on to their children.
A rare glimpse
Alzheimer’s disease was first described and named in the early 1900s; its causative proteins (amyloid and tau) were described in the 1980s. There’s no cure for the disease, but there are a few treatments that slow disease progression. And diagnosis is often met with stigma and embarrassment.
The film provides a glimpse of the daily struggles of people living with younger-onset Alzheimer’s disease. In a poignant scene, Alice says she wishes she had been diagnosed with cancer, as there would be less stigma and more support for her and her family.
Until recently, most research (and funding) was focused on medical conditions, such as cancer, which cause many deaths. But with the growing awareness of our ageing population, research money is now targeting Alzheimer’s disease and other neurodegenerative conditions.
The idea of suicide is also raised as Alice plans to end her life when she can no longer answer basic questions about herself. Research shows that suicide attempts are not uncommon among people with Alzheimer’s disease.
Alice remains eloquent and insightful throughout her struggles, most notably when she delivers a powerful speech at the Alzheimer’s Association carers’ meeting. The scene is particularly moving as the thoughts, feelings and wishes of individuals living with dementia are rarely articulated in this manner. It is a powerful reminder that people with dementia still retain hopes, dreams and wishes for the future.
Still Alice is a poignant window on the world of the millions of people living with Alzheimer’s disease. It’s an important reminder for society as a whole of our responsibility to plan for and manage this rapidly growing condition.
For those of us working in the field of dementia research, the film is a sobering reminder of why we entered this speciality area, and serves as powerful motivation in our quest for an eventual cure.
Muireann Irish is a Senior Research Officer at Neuroscience Research Australia. Rebekah Ahmed is a consultant neurologist & PhD student at Neuroscience Research Australia.
This opinion piece was first published in The Conversation.