Right off the bat, what I think is vitally important is the name of the book and the fact that it is all told from Alice's perspective. Few books about dementia are written this way, even fiction. This is in part because we really do not know what goes on in the mind of someone with dementia later in the disease, but also because the old stereotype of the disease leads us to believe that the person with dementia is no longer here and has little to contribute. It is very important that the book is called "Still Alice" because it fights the biggest stigma against dementia- the idea that the person is gone because they do not act like we are used to them acting. If you spend enough time with people with dementia, you find that they are still there, even into the very late stages of the illness.
The book starts off with Alice noticing memory problems, such as not knowing where she is in her own hometown on a run on a route she has taken for years and years. Alice goes on her own to get a diagnosis and does not tell her husband until after the diagnosis, which leads to him resisting the diagnosis until Alice gets genetic testing that confirms the illness.
Alice comes to terms with her illness, but her husband and two of her kids try to find a cure and question the diagnosis, even though their son is a doctor and should understand what a diagnosis of dementia means. One of her children though, the one Alice has the most strained relationship with, is really the only one who takes it well in the beginning and is able to be an advocate for Alice. This daughter is the more creative child, the actress. She is able to connect with Alice emotionally, which her other kids and husband have a very hard time doing. This does not surprise me since I find those of us who are more artistic, who live in the world of emotion, have an easier time connecting with people with dementia. There is a part in the book where this daughter, Lydia, actually asks Alice what it is like to have Alzheimer’s. Alice thanks her for asking because most people would not even want to know. This reminds me of many conversations I have had with my own mother, who has Lewy Body Dementia.
The book really takes a close look at what it is like inside the world of dementia. It points out clearly how when we take away agency from a person with dementia and want them to try harder, act differently, etc..., we are completely taking away their ability to function to the best of their ability, and we are denying their reality and their feelings. Below is a poignant piece of the book, a dynamic I see happen to people with dementia all the time. You will see in the piece that a few of her kids require of Alice things that are impossible and they try and take away the things that help her, the way she has found to adapt to her illness. Lydia is Alice's youngest daughter, the actress, who is really one of the only ones able to communicate well with Alice from the beginning. Tom is Alice's son and Anna is Alice's older daughter.
"Lyd, what time is your performance tomorrow?” asked Alice, her BlackBerry in hand.
“Mom, you don’t have to schedule it. We’re all here. It’s not like we’re going to forget to bring you with us,” said Tom. “What’s the name of the play we’re going to see?” asked Anna.
“Proof,” said Lydia.
“Are you nervous?” asked Tom.
“A little, because it’s opening night, and you’re all going to be there. But I’ll forget you exist once I’m onstage.”
“Lydia, what time is your play?” asked Alice.
“Mom, you just asked that. Don’t worry about it,” said Tom.
“It’s at eight o’clock, Mom,” said Lydia. “Tom, you’re not helping.”
“No, you’re not helping. Why should she have to worry about remembering something that she doesn’t have to remember?”
“She won’t worry about it if she puts it in her BlackBerry. Just let her do it,” said Lydia.
“Well, she shouldn’t be relying on that BlackBerry anyway. She should be exercising her memory whenever she can,” said Anna.
“So which is it? Should she be memorizing my showtime or totally relying on us?” asked Lydia.
“You should be encouraging her to focus and really pay attention. She should try to recall the information on her own and not get lazy,” said Anna.
“She’s not lazy,” said Lydia.
“You and that BlackBerry are enabling her. Look, Mom, what time is Lydia’s show tomorrow?” asked Anna.
“I don’t know. That’s why I asked her,” said Alice.
“She told you the answer twice, Mom. Can you try to remember what she said?”
“Anna, stop quizzing her,” said Tom.
“I was going to enter it in my BlackBerry, but you interrupted me.”
“I’m not asking you to look it up in your BlackBerry. I’m asking you to remember the time she said.” “Well, I didn’t try to remember the time, because I was going to punch it in.”
“Mom, just think for a second. What time is Lydia’s show tomorrow?”
She didn’t know the answer, but she knew that poor Anna needed to be put in her place.
“Lydia, what time is your show tomorrow?” asked Alice.
“It’s at eight o’clock, Anna.”
While we do not truly know what it is like inside the mind of a person with dementia, I feel that this book did its best to show what it might be like to have dementia. The book shows how Alice makes list and repeats words over and over again to try and remember what she needs. It also give you a good sense of what it might be like to know that you do not know things. I wrote a post about that with my own mother back in 2010 called “Knowing You Don’t Know.” Based on what Mom told me about her illness, I think this book is probably pretty accurate to the experience of many people with dementia.
Throughout the whole book we see how hard it is for Alice to feel like she is loosing who she is. She is a Harvard professor and becomes unable to teach and eventually unable to care for herself. I remember Mom often talking about how hard it was for her to not be able to be the person she identified herself as. I made her a picture to hang by the door of her house that had pictures of her on it and it said “What you do may change, but who you are will never change.” Even today, as Mom is in her last days of this illness, I still believe this to be true. I still see Mom, the essence of who she is.
As Alice gets into later stage dementia, rather than portraying a person with dementia as someone who totally forgets their loved ones and has no emotional connection, we see the opposite in this book. And, research shows that emotional connection lasts far into the stages of dementia, usually lasting until death. Alice does forget who her kids and husband are, technically, but she remembers the emotional connection. Alice's older daughter, Anna, gets pregnant and has a baby, and Alice refers to Anna now, in her mind, as "the mother." At another point, she thinks of her husband as "the man who owns the house," but she still remembers their connection. One day she sees the book they wrote together and she knows the book is important, and so is her husband. Alice says: “I wrote this book with you.” “Yes,” said her husband. “I remember. I remember you. I remember I used to be very smart.”
There is part of the book that may be controversial to some people. Alice creates a test for herself of five questions, to answer daily. She instructs herself on the test that if she has trouble answering any of the questions to go to a file on her computer. The file on her computer tells here where to find a bottle of sleeping pills and it instructs her to take them all. Of course, I knew that at some point Alice would not know if she was answering the questions wrong, which is what happened. The one time she does know and then goes to get the pills, she forgets what she was looking. While this may bother some people, that Alice would take her own life at a certain point, I know many people who would like to have this choice at a certain time in the progression of their disease. I think it is important that we know how many people with dementia feel and we have conversations about quality of life and end of life issues.
Not only does this book show Alice’s struggles with her illness, but the struggles of her family members who all represent the many different reactions family members may have to the diagnosis and the progression of the disease. I felt that the book was compassionate to all of these situations: The kids and husband who tried to deny the illness for a while. The husband who has to decide if he takes his dream job or not. The daughter who grows in relationship with her mother in part due to a disease that allows her mother to interact on a more emotional level with her daughter. The friends who grow uncomfortable around her. The colleagues who want to help but also have to keep the organization going.
This is a beautiful book with a powerful message. I encourage you to read it. I hope that the movie based on the book, which comes out tomorrow, holds true to its powerful message.