A Book Worth Reading – A Novel About Alzheimer’s

Still Alice

 

I just finished Still Alice, by Lisa Genova.   The book tells the story of a 50 year old Harvard Psychology professor who has early onset Alzheimer’s disease.  It is a novel, but it is evident that the author did her homework.  This opinion is purely my own, but I feel it is an educated opinion.

A little over 20 years ago, as a student in the Music Therapy program at CSULB, I worked as an activity coordinator at the John Douglas French Center for Alzheimer’s Disease.  At that time, the center was a privately owned, exclusive and expensive facility for people with Alzheimer’s Disease.  The people who resided at the center were doctors, neuroscientists, movie directors, bankers, lawyers – very accomplished people who no longer recognized their own families and worried about laboratory experiments and important meetings that they had completed 50 years prior, but were sure they were late for.  I worked with people who were in their 70’s and 80’s but believed they were 25 years old and I was their friend who lived across the fence.  It was heartbreaking, fascinating and very rewarding to work with these remarkable people who were struggling with a brutal, unforgiving and undiscriminating disease.

I have family members who have struggled with dementia and Alzheimer’s disease.  My Dad’s grandfather very likely had Alzheimer’s disease or some other form of dementia, but all those years ago,  he was declared to be insane and demented.  He was institutionalized  in a state mental hospital in South Dakota where I am sure he did not get the care or treatment that he should have gotten.  My mother’s first cousin died from complications of Alzheimer’s disease as well.  Now my mother-in-law is struggling with what her doctor’s describe as Alzheimer’s type dementia.  My husband, his brother and sisters are doing what they can to provide her with as much independence as possible for as long as possible.  It is a nearly daily struggle for all of them to provide the support that she needs to remain in a senior living apartment with various care givers coming in to provide care.  This is complicated by the fact that she lives about 300 miles away from any of her children and is resistent to moving closer.

The John Douglas French Foundation describes Alzheimer’s Disease  (AD) as a “slow, progressive brain disease characterized by changes in behavior and personality and a decline in thinking abilities that cannot be reversed. AD is currently responsible for over 100,000 deaths each year in the U.S.”  The Alzheimer’s Association says “Alzheimer’s is the most common form of dementia, a general term for memory loss and other intellectual abilities serious enough to interfere with daily life. Alzheimer’s disease accounts for 50 to 80 percent of dementia cases.”

While the information provided by the John Douglas French Foundation and The Alzheimer’s Association is  interesting and telling, it does not depict the toll dementia/Alzheimer’s Disease takes on the affected person and the family of that person.   Still Alice  does a good job of doing just that.

I highly recommend Still Alice to anyone who has a family member, friend, loved one who is struggling with dementia.  I think that the book is a very good representation of what a person with dementia or Alzheimer’s experiences.  Ideally it will foster compassion and empathy for those struggling with this terrible disease.