Books about Alzheimer's Disease

The book I found most helpful was Somebody I Used To Know by Wendy Mitchell.

She was diagnosed with early-onset Alzheimer's back in 2014 (?) when she was 58 or 59. It's not a depressing book, which is one of its strong points. Instead, she details what her life was like in those first years, and ways she overcame many of the hurdles that people with dementia face. Based on that book I'd describe her as determined and resilient.

It provided a really helpful background when interacting with my sister, who also was diagnosed with early-onset. Actually, I read that book to my sister (she lost the ability to read very early on), and as soon as I told her the title she said 'that's exactly how it feels - somebody I used to know.'

Wendy Mitchell has another book out titled What I wish people knew about dementia. It details how she's coping with dementia in the later stages - I think she was part way through stage 6 when this book came out. Based on this book, I stopped wearing black when I visit Memory Care to see my sister. (hey, I'm a goth, I wear black - a lot) 🙂 Wendy Mitchell described how, if you wear too much black, especially around your face, you can look disembodied to a person with dementia (which can be scary). No way do I want to scare anyone, so now when I go to Memory Care, I wear pastels.

Understanding the Dementia Experience was definitely an eye-opener for me, and very, very useful. I highly recommend it. Since I didn't know anything about any kind of dementia when I 'walked in the door', I found so many useful tools I could use. I haven't read it in awhile, but I also remember thinking that it was kind of a 'put yourself in the place of a person with dementia', so that you know how not to upset, irritate, or demean them.

I haven't been able to find a link to a free copy of it, but I think Ed (he usually posts in the spouse/partner forum) found a link to it. I haven't been able to track it down (on a quick look).

I have a few recommendations, some of which I learned about on this forum.

"Loving Someone Who Has Dementia" by Pauline Boss. In the author's words this book "is not about how to give day-to-day hands-on care; rather, it provides a new way to help you find meaning and hope in your relationship with someone you love who has dementia." She developed the theory of ambiguous loss: being psychologically absent while physically present.

"My Father's Brain: Life in the Shadow of Alzheimer's" by Sandeep Jauhar. This book came out relatively recently. Again, not a book filled with advice, but rather a meditation on watching the evolution of the disease in a parent. Dr. Jauhar is a cardiologist, and he writes effectively about balancing his perspective as a medical professional and as a son.

"Creating Moments of Joy Along the Alzheimer's Journey" by Jolene Brackey. One I'm currently reading, and only about a third of the way through, but it's an encouraging embrace of finding wonderful moments amidst the far-from-wonderful days.

'Understanding the Dementia Experience'

https://www.smashwords.com/extreader/read/210580/2/understanding-the-dementia-experience/Medium,Arial,Black,White,One-and-a-Half

I haven't read this book, but it's been on my list for awhile, so I thought I'd post.

On Pluto: Inside the Mind of Alzheimer's by Greg O'Brien

The author, an investigative reporter, was diagnosed with early-onset. I'm not sure if it's got tactics (probably not), but I thought it might be useful so that we get a deeper understanding of what's going on for our LOs with dementia.

A book I absolutely adore is "Can't we talk about something more PLEASANT?" by New Yorker cartoonist Roz Chast. It's a cartoon memoir about Roz caring for her two parents with Alzheimer's. It's funny, and poignant and insightful, and it says a lot of things that will help you through. I've read it several times.

I also loved "Bettyville: A Memoir" by George Hodgman. A bestselling account of a middle-aged man moving home to care for his very difficult mom who has descended into dementia. It's superbly written and very entertaining.

Another great memoir is "The Erratics" by Canadian author Vicki Laveau-Harvie. The story of two sisters living in different parts of the world who struggle to care for two toxic parents with Alzheimer's who live in the Canadian wilderness. Margaret Atwood called it "brilliantly-written." It's won heaps of awards.

I recently read "Winter Stars: an elderly mother, an aging son, and life's final journey" by Dave Iverson. Dave has Parkinson's and moves in with his 100-year-old mom with dementia to care for her. Lovely book.

As far as advice, I really like "Dementia with Grace: A new, positive way of dealing with behaviors in people with dementia" by Vicky Noland Fitch. Vicky has a Youtube channel where she used to post regular videos about caring for dementia sufferers in different stages of the disease. I love the videos too: https://www.youtube.com/@DementiaWithGrace

"The 36 Hour Day" tips for caregivers. Helped me with showering, not arguing, understanding.

I second the Dasha Kiper recommendation—I’m reading it now!

I enjoyed and was helped by Gail Sheehy’s Passages in Caregiving too. 🙂

Thanks! I just ordered the 2 Wendy M books. 😊

Hello Iris,

Since you requested that I post information about my journey that I wrote about, my name is Lynn Ringseis and I went on quite a wild ride and moved with my husband to Fiji. I was very blessed to have met some lovely Fijian caregivers in California and they helped me with the process of finding an incredible environment in Fiji, where they don't "incarcerate" their loved ones in an institutionalized box of a memory care facility, like the big corporations in the U.S. want us to do.

I wish to help others. I am not here to try to promote anything for my personal gain, I simply have an inspirational story to tell.

If anyone is interested in reading my story, type in my name wherever you like to purchase books. My thoughts are with all caregivers of loved ones with any type of dementia.

Hello, everyone. Iris advised me to post this over here. I posted it yesterday on the Spouse Caregiving board, (Thank you, Iris). And I'm glad I found this specific thread. Love me some books!

The Social Worker, Tessa, at The Memory Center Clinic (Dept of Neurology) at the University of Chicago Medicine recommended these 2 books to me, at Ray's appt last Fri.

Have any of you checked these out? I read the reviews over at Amazon.com. I ordered these. I'm a retired dinosaur RN.

"Travelers to Unimaginable Lands" by Dasha Kiper

"Loving Someone Who Has Dementia" by Pauline Boss

"Loving Someone who has Dementia" by Pauline Boss is mentioned above. Pauline Boss's exploration of ambiguous grief helped me understand the devastating grief I was feeling as my DH slips away into his own world of dementia. She has written another book, "Ambiguous Loss: Learning to Live with Unresolved Grief" which is out of print but is available used. I haven't read it yet.

The Alzheimer's Society of Canada has a good brochure about ambiguous loss and grief in dementia. It is available at this link: https://alzheimer.ca/en/help-support/i-have-friend-or-family-member-who-lives-dementia/managing-ambiguous-loss-grief

The Greater Missouri Chapter of the Alzheimer's Association has a good handout entitled "Guilt and Grief When Moving Your Loved One to a Care Facility" at this link: https://www.alz.org/media/greatermissouri/guilt_and_grief_when_moving_your_loved_one_to_a_care_facility.pdf

"Caring for a Loved One with Dementia" by Marguerite Manteau-Rao. The author offers a guide for dementia care based in mindfulness for the caregiver. This book introduced me to mindfulness practices that have helped me deal with anxiety and grief in my caregiving journey.

"Creating Moments of Joy Along the Alzheimer's Journey" by Jolene Brackey (Fifth Edition). Many examples of caregivers creating and celebrating moments of joy and connection with people in their care who have dementia.

"Hospice" by Rebecca Malcolm Schubert and Jean Bayview (2023). Patients' stories told from a hospice chaplain's point of view. Schubert was a hospice chaplain for over 30 years. The book shows how compassionate hospice care can enrich the patient's and loved ones' journey.

"The 36-Hour Day" by Nancy L. Mace, MA and Peter V. Rabins, MD, MPH. (2021). The ultimate "how-to" guide to hands-on care for PWD in the home. A must-read, even if your LO is in a facility.

"Making Tough Decisions about End-of-Life Care in Dementia" by Anne Kenny, MD. (2018) The author covers everything from legal and placement decisions to the needs of the PWD in late dementia and the dying process. Additional chapters address loved ones' grief and loss.

"Final Gifts" by Maggie Callanan and Patricia Kelley. (1992) Written by experienced hospice nurses, this book illustrates how loved ones can help the dying prepare and live fully to the very end. Does not address dementia patients specifically, but is relevant for anyone caring for someone who has a terminal illness.

"Gone From My Sight: The Dying Experience" by Barbara Karnes, RN. This small pamphlet was given to my by our hospice chaplain. It lays out what to expect in the three months or so leading up to death.

"Being Mortal: Medicine and What Matters in the End" by Atul Gawande. This book has been recommended by a number of people in this forum. The author, a practicing surgeon, goes into the focus and limits of modern medicine and the disconnect between the medical industry and the inevitability of death. He proposes that it is possible to live a good and fulfilling life to the very end and to die with dignity on one's own terms.

"Daily Comforts for Caregivers" by Pat Samples. A non-religious meditation a day. Written for caregivers in various situations and addresses many common themes and struggles in caregiving. My first-thing-in-the-morning read every day.

I’ve read the book and it’s very well written. Thank you for sharing your journey.

Welcome to the board, though I am sorry for the reason you need to be here.

The most often recommended book of practical advice about caring for a loved one with dementia is "The 36-Hour Day" by Nancy L. Mace, MA and Peter V. Rabins, MD, MPH. (2021). The ultimate "how-to" guide to hands-on care for a person with dementia (PWD) in the home. A must-read.

YouTube videos by Teepa Snow explain the world from the point of view of a person with dementia and offer practical advice for dealing with problem situations.

This discussion board is an excellent resource for information and support. Topics have covered anything and everything about dementia. Use the search feature to find what you're looking for. At the top of this page, there is a "Groups" button where you will find the "New Caregiver Help" group. It contains links to lots of information to get you started, including links to Tam Cummings DBAT chart of the stages of Alzheimer's and other useful documents.