Lisa Genova is a neuroscientist and a keen observer of the human condition. She brought these two skills wonderfully together in her 2007 novel ‘Still Alice’. This was adapted into a movie of the same name and earned Julianne Moore the 2015 Academy award for her poignant portrayal of Alice who suffered from Alzheimer’s Disease.
As a researcher in neuroscience who doesn’t deal with patients, it is often difficult for me to imagine the reality of people living with the disease. This movie impacted me in a big way and made me appreciate how vital the work, us folks in the lab conduct, really is. The statistics for impending disease burden for dementia are staggering. In the UK, 1 in every 4 people is likely to develop some form of dementia in their lifetime. Which means half of us are likely to care for a first-degree relative with the disease.
‘Still Alice’ is the story of a professor of linguistics, who in a dark twist of fate starts losing her words. Her diagnosis is stark and shocking. She has early onset Alzheimer’s disease, which means she is amongst a rare population of people who carry a defect in one of their genes. This defect renders them extremely susceptible to develop cognitive decline. The impact of this information is devastating not just for her, but also for her family and especially her three children. Alzheimer’s disease is a collection of pathologies, which result in debilitating cognitive decline and eventually the sufferers are unable to care for themselves. The first sign is most famously memory loss, but sometimes the early disease manifests as changes in behaviour, which are not related to memory. It is a disease of the mind, and robs the patient of their personality and the family of their companion.
Alzheimer’s disease is a multi-spectrum disease and the answers to the pathology are unlikely to lie in one molecular mechanism. A large concerted effort needs to occur with solid support from political forces and awareness in the public. The ageing population is on the one hand a great testimonial to the success of medicine and public health policy at keeping people alive for longer and longer; on the other hand, age-related diseases such as Alzheimer’s have reared their ugly head. The solutions lie somewhere ahead in the collective efforts of scientists, clinicians and medical heroes – the patients and families who volunteer to help uncover how to battle this new frontier of medicine.
And what of Alice? Now she knows, she has the disease, she knows there is no cure; only palliative and lifestyle changes to manage some of the symptoms and fight to have an independent life as long as possible. And what of her family; her children who must now decide whether to be tested for the gene that Alice carries? And once they know… what will they do with this information? And what of her husband who must learn to live with a changing Alice? Alice, whose professional identity is linked to her intellectual ability, must lose her profession too. How does this family live with dignity and keep the love? These answers don’t lie in the lab or the clinic; they lie in our collective conscience. We have to create a society, which makes things just a little bit easier for families who are living with Alice and Alzheimer’s.
Radha Desai is a neuroscientist who works on mitochondrial dysfunction in neurodegenerative disease.