Thursday, June 5, 2014

Books about Dementia

Books by Mace/Rabins, Stettinius, & Shouse.
Even though my approach to aging is pretty broad, I have a persistent interest in cognition.

Not only do I read about healthy, normal, age-related changes to the brain, I also read about change caused by disease.

I am particularly interested in how dementia changes a person's cognition and how caregivers respond. 

I have read more than a dozen books ranging from memoirs to reference books, and I hope to read many more. 

Here are some quick reviews of some of these books with links to longer reviews.  Most recent releases listed at the top of each category (aka reverse chronology). I heartily welcome recommendations of related titles in the comments section.

Last Updated February 2017 to add Campanella's Motherhood: Lost and Found (2013).


Fiction with a Narrator / Main Character Who Has Dementia.

Elizabeth Is Missing (2014) by Emma Healey.  The protagonist is a 82-year-old Maud whose dementia moves  her back-and-forth between the present and her childhood.  She can't find her friend Elizabeth, which makes her relive the 1940s when her newly married big sister Susan goes missing. Goodreads Review.

Blue Hydrangeas: An Alzheimer's Love Story (2013) by Marianne Sciucco.  The book depicts a long-married couple, Jack and Sara, who are trying to respond to Sara's Alzheimer's Disease.  The events take place over nine years with a focus on the question of whether to have Sara move to an assisted living center.  Goodreads Review.

Night Guest (2013) by Fiona McFarlane.  A widowed pensioner lives in a seaside cottage in Australia, trying to make do on her own.  One day a caregiver (aka carer) comes to the door to offer her some extra help around the house.  Can she learn to accommodate another person after being set in her ways?  And should she? Goodreads Review

Turn of Mind (2011) by Alice LaPlante. The author was caregiver to her mother before writing a murder mystery where the narrator and suspect (same person!) has dementia.  Goodreads Review


Please Look After Mom (2011) by Kyung-sook Shin.  This Korean novel has four narrators from the same family: an adult daughter whose mother became lost, her brother (the oldest son), their father, and the lost mother herself--who has dementia.  As each person tells their story, it's apparent that the mother's life was more complex than her family members realized.  Goodreads Review

The Last Days of Ptolemy Grey (2010) by Walter Mosely. The protagonist is a 91-year-old black man living alone in Los Angeles and trying to get by.  He has a few relatives and acquaintances who interact with him, but can Ptolemy trust them as his memory falters?  Goodreads Review.

Still Alice (2009) by Lisa Genova. The author, a Harvard-trained neuroscientist, writes a novel about a woman adjusting to her diagnosis and symptoms of early onset dementia and about her family members who also must adapt. Goodreads Review.


The Leisure Seeker (2009) by Michael Zadoorian.  Take a road trip with John and Ella Robina, a mature couple traveling on Route 66 from Chicago to LA. They run into a few snags due to Ella's weakening body and John's advancing Alzheimer's Disease.  Goodreads Review and Blog Review

Scar Tissue (1993) by Michael Ignatieff. Canadian author-politician drew on his own mother's dementia to write this novel that features a philosophy professor serving as his mother's caregiver. This novel was shortlisted for the Booker Prize. Goodreads Review and  Blog Review
The Stone Angel (1964) by Margaret Laurence.  The protagonist of this Canadian classic is nonagenarian Hagar. She's trying to conduct a life review, starting with her childhood in rural Canada, but she has a number of age-related challenges that interfere with her task. Goodreads Review.


Dementia Memoirs by Family Members / Family Caregivers

The Theft of Memory: Losing My Father, One Day at a Time (2015) by Jonathan Kozol. The author is a nationally recognized educational reformer. His father is a nationally recognized psychiatrist.  Together they respond to the elder Kozol's Alzheimer's Disease. A smart and heartfelt story. Goodreads Review and Blog Review.


Somebody Stole My Iron: A Family Memoir of Dementia (2014) by Vicki Tapia.  The author chronicles the challenges her parents face in late life.  A small portion of the memoir is about her father's struggles with Parkinson's Disease. A larger portion is about her mother's dementia.  Goodreads Review.

9 Realities of Caring for an Aging Parent (2014) by Stafanie Shaffer.  While the book has elements of a guidebook, the author conveys a lot of personal detail so that it reads largely like a memoir.  Shaffer has several practical tips, but the relationships and emotions are the most salient elements. Goodreads Review  and Blog Review

Alzheimer's Daughter: A Memoir (2014) by Jean Lee. Some details--such as names and places--have been changed, but the book is based on the author's experience of caring for both parents who were living with Alzheimer's Disease and died a year apart. Goodreads Review.
Slow Dancing with a Stranger (2014) by Meryl Comer. It takes years for Comer to get her husband an accurate diagnosis of early-onset dementia. Harvey also has a behavior disorder, which makes him agitated and violent.  A no-nonsense description of the hardships of caregiving. Goodreads Review.


Can We Talk about Something More Pleasant? (2014) by Roz Chast. New Yorker cartoonist finds herself serving as a caregiver to her parents, one of whom has dementia. She brings her anxiety-filled wit to the task of sharing the journey the three of them took as her parents grew frailer and frailer. Goodreads Review and  Blog Review

Motherhood: Lost and Found (2013) by Ann Campanella.  This memoir described the dual challenges of infertility and caring for aging parents, particularly a mother with Alzheimer's Disease. Campanella finds comfort and solace while caring for her horse, Crimson.  Tenderly told. Goodreads Review and Blog Review

Leaving Tinkertown. (2013) by Tanya Ward Goodman.  The author describes her father's life with early-onset Alzheimer's disease yet manages to contextual that seamlessly with a narrative about his family's love for him as a nonconformist, free-spirited artist. Goodreads Review and Blog Review

Love in the Land of Dementia: Finding Hope in the Caregiver's Journey. (2013) by Deborah Shouse. The author provides one of the best demonstrations on how to adjust your own thinking and behavior in response to a loved one's dementia. Goodreads Review and Blog Review.

Inside the Dementia Epidemic: A Daughter's Memoir. (2012) by Martha Stettinius. The author provides the most detailed account of a person's progression through early and mid-stage dementia I've read to date. (The book was published before her mother moved into late-stage dementia and then passed away.)  Goodreads Review and Blog Review.

All Gone: A Memoir of My Mother's Dementia, with Refreshments. (2012) by Alex Witchel. This food critic describes her life-long relationship with her mom, framed by her mother's dementia and punctuated with family recipes.  Goodreads Review and Blog Review

The Long Hello: Memory, My Mother and Me. (2010) by Cathie Borrie.  The book's style contains carefully selected dialogue between mother and daughter presented as poetry. These snippets are set inside a painful but beautiful quest the author makes for meaning while she cares for her mother.  Goodreads Review and Blog Review.

The Story of My Father (2004) by Sue Miller. The author primarily focuses on her father's life story and their relationship over the decades, but there are some details about having to adjust to cognition changes and the resulting changes to their relationship. Goodreads Review and Blog Review

Death in Slow Motion (2004) by Eleanor Cooney.  The author alternates between describing her mother's glamorous life as an author, editor and model and her mother's altered personality due to Alzheimer's.  Cooney tries various interventions, but they fail to help her mother.  Cooney feels duty, guilt and anger in response. Goodreads Review and Blog Review.

Dementia Memoirs by Medical Professionals / Professional Caregivers

Making the Rounds with Oscar (2010) by David Dosa. The author describes residents of a skilled nursing center who are moving into late-stage dementia and how their loved ones are responding to the challenges.  Goodreads Review.


Nasty, Brutish and Long: Adventures in Old Age and the World of Eldercare. (2009) by Ira Rosofsky. The author is a psychologist serving residents living in assisted living facilities and skilled nursing facilities.  While at times a bit pessimistic, the author has a clear passion for his work. Goodreads Review

Dancing with Rose: Finding Life in the Land of Alzheimer's. (2007) by Lauren Kessler. The author shares stories of working in a skilled nursing facility with residents who have dementia.  Goodreads Review and Blog Review.



Reference Books, Guidebooks and Science-based Books

Connecting in the Land of Dementia (2016). Shouse compiles an inspiring list of activities that care partners can organize for their loved ones living with dementia. She draws on the work by activity directors, researchers, activists and others who use nature and the arts as media for greater engagement and self-expression.   Blog Review


Caring for a Husband with Dementia: The Ultimate Survival Guide (2015). Angela G. Gentile, MSW, RSW brings her many years of experience to a support group of 8 women whose husband's are living with dementia. The result is a book that is both caring and practical.  Goodreads Review and Blog Review


A Dignified Life: The Best Friends (TM) Approach to Alzhiemer's Care (2012). Bell and Troxel draw on decades' experience in dementia care to describe a person-centered, respectful method of helping people with dementia connect with their care partners. Goodreads Review and Blog Review.
The 36-Hour Day: A Family Guide to Caring for People with Alzheimer's Disease, Other Dementias, and Memory Loss in Later Life. (2006). Nancy L. Mace & Peter V. Rabins. I own this, but I have not reviewed it. It's a reference book, and I haven't read it cover-to-cover yet. But it's widely accepted as a very helpful resource.

Aging with Grace: What the Nun Study Teaches Us about Living Longer, Healthier, and More Meaningful Lives. (2002) by David Snowdon. The author provides an accessible narrative behind the research he has done on the lifestyle choices that mitigate the clinical presentation of Alzheimer's Disease. Goodreads Review.

How We Die: Reflections on Life's Final Chapter. (1995) by Dr. Sherwin Nuland.  The author describes a half dozen of the most common diseases that claim people's lives,  including Alzheimer's Disease. The book actually is a mix of memoir and science since he talks about his grandmother and shares several anecdotes about patients. Goodreads Review and Blog Review

Related:




39 comments:

  1. These are great suggestions. I work with the elderly, many of them memory impaired, so I am always wanting to know more.

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    1. How wonderful that you get to interact regularly with older adults. I just volunteer, so my time is limited, but I enjoy being friends with people who are older than I am. Thanks for stopping by the blog.

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  2. I have witness what Alzheimer's steals away with my husband's family. These are all valuable tools to help delay the process or deal with its effects.

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    1. Alzheimer's presents so many challenges for the entire family. It is exciting to see more attention given to AD and other dementias. I am hopeful that new interventions will be developed over the next few decades.

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  3. I love that I can come to one place and find all kinds of options. No question I'll find a good place to start here.

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  4. wow, what a wonderful list. my mil is just now experiencing memory issues, and we're all concerned about what's next. i may be dipping into these.

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    1. I hope you find a book that serves you. All my best to you and your MIL.

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  5. What a great list. I will definitely check out some of these. I'm still reeling from Still Alice.

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    1. Still Alice was core-shaking. I'm tempted to rearead it because it's so rich. Thanks for bringing it to my attention.

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  6. These are always hard for me to read, since my father had it.

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    1. Dementia makes everything so complicated for all those affected directly or indirectly. Hugs.

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  7. Oh, wow. This is an important topic in my life right now as my husband and I do our best to come to terms with his mother's dementia. I'm definitely adding a few of these to my list. (Love Sue Miller; may start there.) Thank you!

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    1. All my best to you, your husband and your MIL. I hope one of these books serves your needs.

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  8. This is quite the comprehensive list. Wow. Thanks so much for sharing!

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  9. Can I add one more terrific novel? The Memory Board by Jane Rule.

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    1. Yes, recommendations are always welcomed. Thanks!

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  10. Wow, what a great list Karen. Thank you!

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    1. As a retired English teacher, I'm a bit driven to explore aging issues by reading, reading, reading. Thanks for stopping by. I know you are a big reader, too!

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  11. Great list, will be sharing with friends.

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    1. Thanks for sharing. I am hoping to help others with the same interest. I love it when others share what they've learned. It's win-win!

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  12. Karen, what a terrific resource you have created by listing all of these books. I like the fact that you offer personal experiences via memoir alongside the medical. There is so much to be gained from both.

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    1. Yes, I think it's vital to have both the sciences and the liberal arts share their perspectives. They balance each other out and complement each other. Thanks for your comment.

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  13. Thank you for adding to my growing list of must reads. Dementia has touched so many people so deeply and for those of us who deal with the related issues professionally, it is gratifying to see dementia dealt with in a frank and honest way in print. Interestingly enough, I most interested in reading the pieces of fiction you listed! Thank you so much Karen!

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    1. Ruth: Before I was a gerontologist, I was a college English teacher. So I am always on the hunt for fiction that depicts elements of the aging process. I think a multidisciplinary approach is vital. Sciences, social sciences and the humanities all offer important viewpoints that help people address aging challenges. I am glad you find this list helpful to your aims!

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  14. What a great list. As a caregiver I am always looking for information on how people deal with disease and aging.

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    1. I hope (at least) one of these books is a good fit for your needs. Hugs to you.

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  15. Wow what a great list of books! I'd love to read some of them. Thanks!

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  16. As caregiver to, with and for my Mother, I truly appreciate your providing such a comprehensive list of relevant reading material. Our time is not often our own, so it is a wonderful gift that you have taken the time to compile this information in one place for us as a resource point. Thank you so much! I am excited to start shopping for e-books or ordering in print on-line!

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    1. All my best to you, Teri, and your mother on your journey together as you care for her.

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  17. Thank you for posting this. This is a wonderful resource for those who care for a loved one with Dementia.

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    1. You're welcome. All my best to you, Jeanette.

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  18. That's an amazing selection of helpful books! There's a variety of approaches on how someone can support or care for people who are suffering from dementia. Sharing that selection can help the ones who are struggling with giving care and support to the people they love to shine a brighter light on how to deal with the matter in a more cautious and effective way.Thank you so much for sharing that, Karen! All the best to you! :)

    Michelle Simmons @ Comfort Keepers®

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    1. Thanks for coming over and commenting. All my best to you in your work in the caregiving field.

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  19. Check out Elinor Fuchs' Making an Exit (daughter's story of a mother's dementia). So rare to have positive stories. You might also check out my book :) Forget Memory: Creating Better Lives for People with Dementia.

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  20. How many more memoirs do we really need? They are mostly selfies in print. As professional caregiver, I find little new information about caring for my clients. I am sure they are therapeutic for their authors. Possibly "therefore the grace of God go I" for others?
    Almost everyone needs a better understanding of how the brain and functioning is literally destroyed by Alzheimer's. People need empathetic towards families where a person has ALZ. You don't learn about the brain or the disease or how to be empathetic from selfies in print. I am confident my post will be viewed as unsympathetic. But so be it.

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  21. Ann: I totally agree that pursuing medical / scientific solutions is paramount. However, I think an interdisciplinary response is vital. I have worked in a university setting for over 30 years, and complex problems are best addressed by a combination of hard sciences, applied sciences, social sciences and the liberal arts. If we all work together as a team, we can clarify problems, pursue answers, communicate new knowledge effectively, design effective public health programs / policies, and persuade people to take action. I would not wish the world to be entirely populated by artists. Nor would I wish the world be entirely populated by scientists. It is cricial to invite people with a diversity of vocational perspectives to the table. We are all enriched by so doing. Karen

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