Still Alice helped trigger 'global conversation about Alzheimer's' giving people with dementia a voice and a face

Lisa Genova wrote the best-selling novel Still Alice, about a woman with early-onset dementia, back in 2007. There are now over 2.6m copies in print, and it has been translated into 37 languages. In 2014, the book was made into a Oscar-winning film starring Julianne Moore.

Remarkably Ms Genova was forced to self-publish the book about Alice Howland, a 50-year-old Harvard professor and linguistic expert, which traces her journey from being diagnosed with early-onset dementia to her gradual decline, as no publishers were interested. It was later acquired by Simon and Schuster.

Spreading awareness

Now nine years on, the book and film have played a huge role in spreading awareness of the impact this awful disease can have on the person and their family and friends.

Lisa Genova told homecare.co.uk: “I think Still Alice has facilitated a global conversation about Alzheimer’s, a disease that has long been too frightening and has carried too much stigma to talk about. That conversation is lifting the stigma, bringing people back into community, raising compassionate awareness.”

In fact it is not only with awareness that the book and film have had an impact but it has also led to a boost in funding for research and resources for care, according to Ms Genova. She took the decision to base the story on early onset dementia rather than dementia in an older person as she says: “For too long, Alzheimer’s has been depicted as a disease of the dying elderly. What about the millions of people in their 40s, 50s, 60s, 70s living with Alzheimer’s? I wanted to give these people a face and a voice”.

Reducing risk of dementia

In the past she has said there is not enough information out there on dementia and how it affects people.

This is now improving, according to Ms Genova, who said: “There used to be the sense that there was nothing you could do about dementia, so people felt helpless and scared and stuck their heads in the sand. Now we know there is a lot we can do to reduce our risk of dementia, and if we have symptoms of dementia, there is much we can do to maximize our quality of life.”

Both the book and the film have been a phenomenal success and Ms Genova attributes this to Still Alice aiming to “understand what it feels like to experience Alzheimer’s from the perspective of the person who has it. Most of what is out there about Alzheimer’s is told from the perspective of the caregiver, the doctor, the scientist, the social worker.

Understanding the disease

“I think we’ve been needing Alice’s perspective. It gives us a chance to understand this disease, which is so baffling and heart breaking, from the inside.” Since writing Still Alice, Ms Genova has written three other novels about neurological disorders. Inside the O’Briens is about a policeman who is diagnosed with Huntingdon’s disease and how it impacts on him and his family, Left Neglected is about a career-driven super mum who suffers a traumatic brain injury and Love Anthony features a boy with autism who dies and reveals how his mother copes with the loss.

Ms Genova deliberately decided to focus on writing fiction about neurological disorders so she can spread awareness and information in a way that is easy for people to understand. “Most people aren’t going to read the Journal of Neuroscience to learn about Alzheimer’s or autism or Huntington’s disease. But they might read a novel. Fiction is an accessible way for the general public to learn about neurological disorders.”

Her fifth book is inspired by the co-director of Still Alice, Richard Glatzer, who had ALS (amyotrophic lateral sclerosis) – a fatal motor neurone disease, which often robs people of the ability to speak, eat, move, and breathe.

Mr Glatzer was battling the disease while directing “Still Alice.” He died in March 2015, just after Julianne Moore was awarded an Oscar for the way she portrayed Alice.

The main protagonist in her new book is called Richard and is a concert pianist who has ALS.

Ms Genova has a PhD in neuroscience from Harvard University and originally planned to spend her life researching diseases of the brain.

'Vehicle for empathy and social change'

However when her grandmother was diagnosed with Alzheimer’s, she decided to write an accessible story that would be a “vehicle for empathy and social change”.

Ms Genova was originally forced to self-publish Still Alice because publishers and agents told her it was too specific and the audience would be too small. Nine years on, there is a global awareness of Alzheimer’s and Lisa Genova has been crucial in boosting the amount of accessible information about dementia that is out there.

Alice is still Alice

She wanted to show that family and friends need to try and see beyond the dementia and see that Alice Howland is ‘still Alice’

Actress Julianne Moore reiterates this by saying when talking about the film "What I think is so compelling about this movie for me is that it's really about who we are, essentially. There is a reason it's called 'Still Alice.' In the face of anything affecting your life in this way, who are you essentially? In the face of a terrible disease, who are you to your loved ones, your children, your husband, your job? Who are you to the world? It's not that someone disappears. I think it's a misnomer that someone with Alzheimer's goes away. The person is there, they are just there in different capacities.”