Your Fiction Reading List: Dementia and Caregiving (Part Two!)


I cut my last post short so that some of you could get to the library or bookstore this weekend to check out The Bonesetter’s Daughter, and I heard that some of you did! After you finish reading that one, you might want to check out my next recommendation.

Still Alice by Lisa Genova

The author of this book was an academic studying Alzheimer’s Disease and other neurological disorders before she became a best-selling novelist. Lisa Genova earned a PhD in neuroscience from Harvard University, so you can bet that she has the scientific knowledge to back up what she writes. The beauty of what Genova has done for Alzheimer’s Disease in Still Alice (and for traumatic brain injury in Left Neglected) is that she has revealed another layer of truth about this disease, moving beyond clinical observations and scientific study to a deeply personal level of compassion and empathy.

Still Alice is written from the perspective of Alice, a Harvard professor and researcher at the peak of her career who starts having some very disturbing spells of confusion and memory loss. She receives a definitive diagnosis of early-onset Alzheimer’s Disease based on genetic testing, then has to cope with all of the life changes that come with a degenerative neurological condition.

Alice is the narrator of this novel, and the reader continues observing over her shoulder for the entirety of the novel, as we follow her through the early stages of her disease. As in The Bonesetter’s Daughter, we see many issues arise:

Early denial of a problem. No one wants a diagnosis of dementia, and it’s easier to blame it on something else until you can’t ignore the problem anymore. That happens to Alice with a work-related issue.

Deciding when to reveal a diagnosis to others. Alice has to decide when to tell her husband, her children, her colleagues and her students about her diagnosis.

Workplace issues. Before Alice does reveal her diagnosis to colleagues, they already are see problems. She has to balance her responsibilities to colleagues and students with her future financial needs.

Deciding whether to get genetic testing. When Alice tells her adult children about her diagnosis, they have to decide whether or not they want to be tested for the genetic markers that would likely lead to early-onset Alzheimer’s Disease for them, too.

Complicated family dynamics and caregiver stress. From Alice’s perspective, we see the hardship her husband and adult children experience. Alice feels the pressing need to repair strained relationships while she still can. Family members disagree on what is best for everyone involved.

Gradual changes in functioning levels. Genova does an especially masterful job of portraying Alice’s progressive decline – how she goes from reading heady literature to simpler books to watching movies to watching less complicated movies to preferring the simple company of her loved ones, for example.

The dangers of wandering. Alice has a couple of scary situations happen when she’s out of the house and no one knows where she is.

The desperation to find a cure. Trying medications currently on the market and participation in experimental trials both play significant roles in the novel.

The fact that Alzheimer’s Disease can affect anyone. Alice is clearly a high-achieving cognitive powerhouse, yet she still gets the disease that lays waste to her brain.

I can go on, but you get the idea: This book is good. As a music therapist who spends a lot of time working with folks who have Alzheimer’s Disease and related dementias, I can say that this portrayal was spot on. Everyone’s story is different, of course, but this one rang achingly true. I sincerely hope that LOTS of people read this book to gain a better understanding of what it may be like for a person with dementia and the friends and family that surround them.

Have you read Still Alice? What did you think?

P.S. Visit Amazon.com to get this book for yourself!

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11 thoughts on “Your Fiction Reading List: Dementia and Caregiving (Part Two!)

  1. kirsten says:

    I read this book earlier this summer (well, actually, listened to the audio version while driving to sessions) and LOVED it. I’m currently seeing a woman who has early-onset Alzheimer’s, and it’s totally changed the way I interact with her.

  2. redrose856 says:

    Hi – I read Still Alice..it was interesting and moving to read from perspective of person who has dementia…but was very very disappointed in how easy it seemed for her family to easily care for her….this is NOT the reality at all of caring for a person with dementia, as I have a family member with dementia, it requires that at ;least someone stop everything else they are doing and care for that person…it was disappointing from this vantage..

    • soundscapemusictherapy says:

      I can see that. Perhaps the caregiving perspective wasn’t in the forefront in the novel because almost all of it is in the early stages, when Alice is declining but still safe on her own. If I remember right, we get a glimpse into the later stages at the very end of the novel.

      Maybe someone needs to write a caregiving novel next?

  3. Carolyn Stone says:

    Hi Rachelle,
    You describe the book very well. I hesitated to read it because I thought it would be too sad, but it was so interesting and the depiction of the family dynamics was so right on, that it carried me along. Also, Genova makes it clear that there can be pleasure for Alice and her family even at the end, once they have accepted the devastation of the disease.
    Thanks,
    Carolyn

    • soundscapemusictherapy says:

      Yes, this book was much more nuanced that I expected, too. Alzheimer’s Disease is devastating for sure, but I get tired of depictions of the illness that make it seem like a death sentence from the get go. There *is* still plenty of opportunity to experience joy and togetherness – it will just look different than it did before.

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