In Lisa Genova’s book we meet Alice in her early 50s, a very successful Harvard professor, still excited by research and sought after for her opinions, who initially blames the symptoms she experiences on the menopause. This brings home that dementia is no respecter of education or position, but also allows the author to present some of the science behind the condition into the natural flow of the book giving the account some weight.
Genova has based the story on real accounts that she had collected, and we really felt this gave a ring of truth to Alice’s experience. The book gives a real insight and empathy into how the world is experienced through the filter of Alzheimers and she cleverly finds ways of presenting some events as Alice experienced them, and then replaying them so we (and sometimes Alice) realise what really happened.
A range of emotions are conjured: anxiety that some of the early symptoms seemed so close to what we experience ourselves; the fear engendered by getting lost in a familiar place; the loneliness and isolation the condition brings as friends and colleagues withdraw not knowing how to react to the condition; the loss of position and status. It also brings out that the loss of memory in the initial stages doesn’t mean the loss of other intellectual faculties such as logic. AS the book progresses Alice’s thought processes become foggier – at one point Alice wants to join in conversation, knowing what she wants to say, but isn’t able to process the thoughts into speech, and later on she is unable to follow the thread of a conversation but becomes very sensitive to the underlying emotions of the people around her. At one point Alice says poignantly “I miss myself”.
Alice’s husband and children react in different ways. John, a scientist, finds the little struggles that indicate her condition difficult to witness and is unwilling to compromise his future career plans so that they can spend time together before she is too disabled. Lydia, her youngest daughter developing a career in acting, finds it easier to bridge the gap – she reacts in a sensitive way without challenging Alice, understanding that she can still read emotions. This lead to a discussion about the change in how we relate to those with dementia – a few years ago reality orientation was regarded as the way to help, but now it is accepted that it is better not to challenge their distorted view – the struggle to process contradictory information can lead to disorientation and panic.
The end of Still Alice has a serene feel to it – Alice is ‘living in the moment’ cared for by her daughters.
Other good reads based around the experience of dementia include:
Wilderness (2010) by Samantha Harvey
Jake has Alzheimer’s. As the disease takes hold of him, Jake struggles to hold on to his personal story, to his memories and identity, but they become increasingly elusive and unreliable.
A stunning composition of human fragility and intensity (Guardian )
Iris (1998) 296 pp. by John Bayley
Critically acclaimed memoir of the great philosopher and novelist Iris Murdoch, who had been suffering from Alzheimer’s disease since 1996. At times unbearably moving, at times poignantly comical, this memoir provides a fitting memorial to Dame Iris. It is an enchanting portrait of a remarkable marriage and an inspiration for anyone whose life is affected by Alzheimer’s.
Elizabeth is missing (2014) by Emma Healey
An investigation into a seventy year old crime, through the eyes of the most likeably unreliable of narrators. But the real mystery at its compassionate core is the fragmentation of the human mind. (Emma Donoghue)
The Memory Book (2014) by Rowan Coleman
“I frequently felt parts of me were seeping away. But I told myself not to be so melodramatic. And I felt like this for years before, one day, I really knew I couldn’t hide from it anymore. It was the day I forgot which shoe belonged to which foot …”
Keeper, by Andrea Gillies
A very honest account of the experience of caring after the author and her husband choose to give a home to Gillies’ parents-in-law. What comes over is a sense of the frustration, boredom and rage that it can engender. Part of her way of coping is to read extensively about dementia, memory and identity. Her reflections on these themes run through the book creating a rich backdrop to the everyday coping.
Any books by Oliver Sacks about the neurological processes of the brain e.g. ‘The man who mistook his wife for a hat’.
Other titles by Lisa Genova
It tells the story of a woman who suffers from hemispatial or unilateral neglect caused by a traumatic brain injury. As she struggles to recover, she learns that she must embrace a simpler life. She begins to heal when she attends to elements left neglected in herself, her family, and the world around her.
This is a story about a mother dealing with the death of her son, who was diagnosed with autism at age three, and ultimately, finding the courage to start over.
Still Alice (UK release 6/3/15); Away from her; Iris