Books about Alzheimer's Disease
I want to start a thread for books regarding Alzheimer's Disease and caregiving. I invite anyone with a pertinent book about Alzheimer's Disease or the other dementias to post.
If someone has the link for Understanding the Dementia Experience, please post it here, so new members can readily find it.
The first book I want to suggest is "The Gap Between--Loving and Supporting Someone with Alzheimer's" by Mary Moreland.
Mary was a single mother of two young boys when she became a caregiver to her mom with AD after her dad died suddenly. Her story is about being in the sandwich generation. Everything she talks about is what is discussed on these boards. In fact, she does mention Alzconnected as a resource. I can recommend this book for careiving families.
Comments
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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).
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I second your Wendy Mitchell recommendation, Gothic! A super resource for helping me figure out how Mom might be experiencing the world.
Iris and all, there is the AlzAuthors website to check out: https://alzauthors.com/
It's books, podcasts, blogs, by dementia people, family caregivers - novels and true stories. I don't have specific ones to recommend, but it's certainly chock full of every kind of story you could want!
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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.
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The best book I have read on this topic is Dasha Kiper's "Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver and the Human Brain." Kiper is a clinical psychologist who cared for a PWD for a year. Her book explores the ways in which the workings of a "healthy" brain -- the caregiver's -- prevent us from adapting and truly understanding the cognitively impaired one. It can't stop us from making those same mistakes -- trying to reason, etc. -- but it explains why it is so hard. It found it truly helpful.
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'Understanding the Dementia Experience'
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I hope this is ok--Not books, but some You tube & Tam Cumming's links that I've found helpful.
I insert the links in a lot of my posts-it's nice to have them here in one spot.
What a great idea, Iris! Thank you!
Teepa-10 early signs: https://www.youtube.com/watch?v=pqmqC-702Yg
Teepa-multiple videos: https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX
Tam Cummings assessment tools/ Alz Disease tools and checklist https://www.tamcummings.com/tools
Perceptions and communications: https://www.youtube.com/watch?v=ilickabmjww
MC/AL/Nsg Placement?: https://www.youtube.com/watch?v=Cetf0Q566Hc
OT discusses IADL's and dementia changes: https://www.youtube.com/watch?v=zkKi9_-tYbQ
5 other losses besides memory: https://www.youtube.com/watch?v=awBm4S9NwJ0
Advance directives https://www.youtube.com/watch?v=ii73c8k63Ag
Anosognosia https://www.youtube.com/watch?v=5nw3YUDQJuY
Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg
Stage 3: https://www.youtube.com/watch?v=TIkTO4d8YyI
Moderate stage changes: https://www.youtube.com/watch?v=6cZTgG6kDjs
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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.
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I haven't read this book either (but I think it just came out). It's called One Last Thing: How to Live with the End in Mind by Wendy Mitchell.
I've read her other two books (listed above in this thread). I'm sure I'll read this one as well.
Here's the interview with Wendy Mitchell and a discussion about how she's doing now, and her new book:
'We need to talk about the end": Wendy Mitchell on living positively with Alzheimer's
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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
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This book was recommended to me. I have not read it yet. But the title resonates with me.
Essential Strategies for the Dementia Caregiver: Learning to Pace Yourself
by Tami Anastasia
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"The 36 Hour Day" tips for caregivers. Helped me with showering, not arguing, understanding.
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Sailor girl posted more about her caregiving journey with her DH who passed in 2019. She wrote about what she learned, some from these message boards. I suggested that she post her published book here.
Iris
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I just finished a great memoir from a man who cared for his quirky mom. It was about the family dynamics and how much he really gained from her all of his life. Much of his story is what members post about here. The book is called Tasha, a Son's Memoir by Brian Morton. I got my copy from the library.
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bookmarked this thread! will give some of these a read/watch
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I second the Dasha Kiper recommendation—I’m reading it now!
I enjoyed and was helped by Gail Sheehy’s Passages in Caregiving too. 🙂
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When my Dad was hastily given a dementia diagnosis in the ER following a fall and then struggling in subacute rehab I bought about 10 dementia/home caregiving/Alzheimers books. I haven't made my way through all of them yet, so I may come back to leave another comment when I make more progress.
For my book collection, I was looking for practical how-to information -- how to deal with conflicts with your LO, how to support them through the progression, how to deal with behavioral challenges, etc. My Mom and I know that my Dad ultimately wants to be at home and we are doing that for as long as we're able - so I've dedicated myself to the Pursuit of Knowledge.
- I started with "The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss" by Nancy L. Mace and Peter V. Rabins. I've found it to be a great starting point, it's relatively comprehensive and has a lot of practical advice/insight into the intricacies of caring for and interacting with a PWD.
- I'm also working my way through "The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer's and Other Dementias" - Nancy Feil developed the technique is the 1960s when she became dissatisfied with the way dementia patients are treated and communicated with. The copy I have is a little repetitive (it feels like it's trying to win you over on the technique), but the anecdotes and technique itself is good. I think it would be particularly helpful for someone with a LO who has delusions/hallucinations/confusion. It also is helpful for cultivating a (possibly) new perspective toward dementia and its progression.
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Thanks! I just ordered the 2 Wendy M books. 😊
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The Wendy books (as well as Understanding the Dementia Experience) have been my guiding lights for how I communicate with my sister. I've used them almost since the beginning.
@Lola V I hope you find Wendy's books as useful as I have!
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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.
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New Members: please post if you have a book recommendation.
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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
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"Chicken Soup for the Soul, Living with Alzheimer's and Other Dementias" was mentioned yesterday.
The geriatric nurse Stephanie wrote a book but I don't remember the name of it. It was about her time as a supervising nurse of a Memory Care facility. She posted about ten years ago. Does anyone remember?
Iris
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"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:
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:
"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.
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Though not a book, when I shared this elsewhere, Iris suggested I share this here. There are a number of youtube videos from the James L West Center for Dementia Care by the same presenter. I found these helpful to share with our siblings when we were learning what was likely ahead for our DB on his dementia journey.
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Please post if you have a book or video members may find helpful.
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I found "Forget Me Not" by Debra and Olivia Kostiw very helpful, with practical things to do for various situations.
Edit to add - thank you very much to @hogladyrider for recommending this one for us.
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I’ve read the book and it’s very well written. Thank you for sharing your journey.
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My DH was diagnosed two weeks ago with MCI due to Alzheimer's. What books do you all recommend for someone like me just beginning this journey?
I'm looking for books with practical ideas about what I should be doing at this early stage of the disease - when and how to bring up his wishes/living will, his bucket list, driving issues, etc. I don't want to overwhelm him so early on, but obviously these things need to be discussed before the disease progresses very far. I'm also interested in books that provide information on the stages, and address how a caregiver can best prepare for them.
Thank you!
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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.
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That book seems to be exactly what I'm looking for. And I'll check out the videos. Thank you so much!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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