We all have had first-hand experience with the diagnosis and treatment of those with dementia but we may be less familiar with the personal experience of those with this illness. Still Alice is an inspiring, insightful novel which leads the reader on a journey through the experiences of memory loss and its tragic ramifications. It explores the desperate need of the protagonist initially to control it by understanding the illness, resolve relationship issues and re-prioritize her life. For the main character it even means making grave and final plans for the end stage of the illness.
Lisa Genova is a Harvard neuroscientist graduate who has written a clinically realistic story. The treatments, clinical trials and genetic testing are also well researched albeit a little dated now. Still Alice is a compelling must-read for those patients and caregivers living with dementia.
Alice is a 50-year-old Harvard professor of neuropsychology. She is a passionate lecturer and researcher and travels the world presenting at international conferences. She is happily married to an equally devoted researcher and they have three adult children. The tragedy of early onset Alzheimer's disease is painfully outlined as it can strike even the brightest of high achieving adults. The pattern of the cognitive decline is consistent with early onset Alzheimer's disease and we see Alice go through the bewildering and alarming experiences of getting lost on her previously familiar jogging route and her escalating disorganization and forgetfulness. Alice's academic career has a very public and embarrassing decline as she stumbles over words in lecture theatres, constantly repeats herself and fails to perform as a supervisor and researcher. The pity and avoidance of her colleagues do not go unnoticed and finally she is humiliatingly sidelined and resigns from her position.
The shock and despair following the diagnosis is convincingly articulated and the frank denial and avoidance of her husband is glaringly obvious to all. Alice becomes gripped with anxiety about the state of her relationships with her adult children and is forced to reprioritize her expectations for the lives of herself, her husband and her children. Alice is stricken with terror at the uncertainty of her future and is sickened by thoughts of being unable to read, write or speak. Alice experiences the horrifying march of her own inexorable decline towards infancy where she is finally incontinent, disoriented and but a mere ghost of her former self.
At the outset of the diagnosis Alice constructs an apparently failsafe plan to end it all when she can no longer answer the most basic of questions she repeats on a daily basis. The novel raises the dilemma of the advance directive. When Alice finally reaches the stage she had feared and abhorred, she finds the simple pleasures of eating ice cream and letting her grandchild play with her face wonderful. Alice finds her life does have meaning in having only this moment alone; she is not her past or her future. The novel is both poignant and confronting but ends with hope and reconciliation. In particular, the daughters shine with their determination and will to ensure she is surrounded by a loving and supportive family and in the process help to create a meaningful and pleasurable existence.
Still Alice is an intelligent must-read, with which patients and their care givers are sure to identify.
