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  norbert
2/3/08 1:14 PM
FAQ48 - Books about Alzheimers

From information originally compiled by Liz (Gabbys-granny) and Jean (2104) and suggestions from members.

I will post other suggestions from members here. However, I will not include any book claiming to have an Alzheimers cure. ----------------------------------------------------------/

**** Early Stage ****

What To Do When the Doctor Says It's Early-Stage Alzheimers by Feinberg and YU - Wifey

Alzheimers Early Stages, by Daniel Kuhn

Learning to Speak Alzheimer's : A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste Joanne was requested to write this book. It helps new caregivers formulate a healthy attitude for alzheimers caregiving, and how relate to their LO. -Norbert I found the book "Learning to Speak Alzheimer's" by Joanne Koenig Coste to be very helpful. - mtndewmama

Speaking Our Minds: Personal Reflections from Individuals with Alzheimer's by Lisa Snyder Based on interviews and work with people in the earlier stages of Alzheimers.

**** Caregiving ****

The 36 Hour Day The first and still the current bible. Some people recommend the 36 hour day, but I didn't care for it. The thing is, all AD people are different. If you see one AD person, you've seen one AD person. Some just have memory problems, some get mean, some wander, there are just so many different ways they get. - Sis2 Some people find it overwhelming - Norbert I did read the 36 hour day. I didn't like learning some of the things I learned from it, but it did prepare me. It is the kind of book you can read only sections at a time, and skip around. Love, Caring (Caring4sd) - "Do not let the 36 Hour Day overwhelm you or depress you. It gives us information so we can be prepared to deal with the disease". Liz

"Alzheimer's Disease - A Guide for Families" by Lenore S Powell with Katie Courtice. This is about 350 pages of information dealing with "What is Alzheimer's and what it is not; all the way to the end stage. This book covers just about every emotion from diagnosis, denial, anger, depression, guilt, and fears; Understanding and dealing with the patient's problems - this section breaks down to several sections including the psychological toll of memory loss, everyday life, the nursing home dilema, death and bereavement; and Taking care of yourself - this goes into safeguarding your own health, excercises for a healthy mind and help for troubled caregivers. I have not completely read this book as yet but well into it as this book was loaned to me recently by a person who has an adult home for Alzheimer's and dementia that we are considering placing my Mother in as soon as an opening comes up. I have been reading sections of it and it is a down to earth type book easily read but full of information. Every area is well explained and how to deal with it. This is a book more for the family to help with understanding Alzheimer's, what to expect and how to cope with the changes of our loved ones as the AD progresses. - Judy (MiniAppys)

Mayo Clinic on Alzheimer's Disease by Mayo Clinic; Petersen. The Mayo clinic book is really good too. - Liz

Courage to Care: A Caregiver's Guide Through Each Stage of Alzheimer's by JoAnne Parrent

Alzheimer's Essentials, by Bretten, C Gordeau and Jeffrey, G Hillier (Paperback - May 31, 2007) 152 pages (129 pages of text) A very concise book that is accurate and sometimes technical (ie - is not short because it is dumbed down) One early caregiver review on Amazon was estatic about this book because he could read it in only an hour or two. I shudder at the thought of a caregiver who is only willing to spend 2 hours learning about the disease - Norbert

"Creating Moments of Joy" by Jolene Brackey. Another good book. The title says it all--that's what you try to do with a LO with AD--create moments of joy for them and for you. As the disease progresses it's more and more difficult to communicate, what to say, what not to say, how to handle bath times, etc - mybabi and caring4sd

Courage to Care: A Caregiver's Guide Through Each Stage of Alzheimer's by JoAnne Parrent. There's Still a Person in There : The Complete Guide to Treating and Coping with Alzheimer's by Michael Castleman,

Staying Connected While Letting Go: The Paradox of Alzheimer's Caregiving by Sandy Braff, Mary Rose Olenik

There's Still a Person in There : The Complete Guide to Treating and Coping with Alzheimer's by Michael Castleman,

"Understanding Difficult Behaviors", Robinson, Spencer and White. I got it from the Alzheimer's Assoc. Aprox $20. One to five pages on each of the following issues: Angry/agitated behavior, Hallucinations/Paranoia, Incontinence, Bathing, Dressing, Eating, Sleeping, Wandering, Repetitive actions, Screaming/Verbal actions, and Wanting to go home.

"A Curious Kind of Widow - Loving a Man with Advanced Alzheimer's" by Ann Davidson. A book I have recently read, that I really appreciated. If you are a caregiver of your spouse and have begun to think about day care or placement in a facility, this book is outstanding. - Sailingsaint

"Coping with Alzheimer's - Caregivers Emotional Survival Guide" by Rose Oliver and Frances Bock. Another book I found. This one deals directly with the caregiver and how to handle situations and your response. They give some great helps. - Nancy (Sailingsaint)

"WHEN LOVE GETS TOUGH, THE NURSING HOME DECISION". Nominated by SailingSaint. I am currently at the stage of considering placement. An excellent book on topic. It is not specific for Alz, but is is excellent on all the areas.

**** Activities ****

Sunshine and Joy's Big Book of Alzheimer's Activities. The activities are amazing! They are unlike anything I've found in other Alzheimer's activity books. My mom is only able to speak a word here and there and yet I've been able to make her laugh and smile and respond. - "LizPat" 6/07

Best Friends Activities, Based on suggestions from professional activity directors.

** Letting Go - Late stage** There is a booklet called 'Hard Choices For Loving People' written by a hospice chaplain which you can either read on line or download from the web site.

Dying Well by Ira Byock, MD My children and our older granddaughter were struggling with their Dad. The Hospice nurse suggested the book.,,Dying Well by Ira Byock, MD and it really helped them a lot and they were more at peace about everything. -Alice

**** Books by Caregivers ****

A Caregiver's Guide to Alzheimer's Disease 300 Tips for Making Life Easier by Callone, Kudlacek, Vasiloff, Manternach, and Brumback - Maria in WI (Wifey)

, "A Curious Kind of Widow - Loving a Man with Advanced Alzheimer's", by Ann Davidson. One of a couple books I really Appreciated. If you are a caregiver of your spouse and have begun to think about day care or placement in a facility, this book is outstanding. - SailingSaing

"Into the Mist, When Someone You Love Has Alzheimer’s Disease" by Deborah Uetz with Dr. Anne Lindsay - (suggested by Sailingsaint ) from website "answers the questions that come along with an Alzheimer’s diagnosis. ...What are the symptoms of the early stages of Alzheimer’s disease? When should someone stop driving? Why is my loved one becoming withdrawn and insecure? Are hallucinations an occurrence with Alzheimer’s disease? Does Medicare or Medicaid cover expenses? How do I cope with the stress of constant care giving? Is Alzheimer’s disease fatal? "The book began as a personal journal but grew into a comprehensive resource for Alzheimer’s caregivers as well as a compilation of information from researchers, psychologists, Aging experts and families coping with this devastating illness all over the world. As you walk into the mist of Alzheimer’s disease this book serves as a roadmap because of the life lessons of others who have traveled this road before you."

"Caring for my mother: a daughters long goodbye" - written by Virginia stem Owens. I got it at the library. The book just came out and it was really good. She does have dementia and goes into a NH. - Rene

“He Used to Be Somebody, 1995: A Journey into Alzheimer's Disease Through the Eyes of a Caregiver” by Beverly Bigtree Murphy (check out Bigtree Murphy website)

Marshall's Journey: The Power Of Understanding Alzheimer's by Vailia Dennis

Dancing with Rose: Finding life in the land of Alzheimer's, by Lauren Kessler (also available as CD 2007) For those of you who haven't read "Dancing with Rose", do so. It tells a lot about nursing homes and what goes on. It really says a lot about the caliber of employees in these homes. I enjoyed the book tremendously.(gnendl5) Written by a journalist who took a job in a NH to see for herself what goes on.(2104)

**** Books by people with Alzheimers , or giving them a voice****

Young Hope The Broken Road. By Tracy Mobley, who belongs to this board and posts as younghope2 The recap of a young woman that was diagnosed with EOAD at 38 years old. The pain and laughter she shares with this disease along with here family. A must for anyone trying to understand the disease. - Tracy

My Journey into Alzheimer's Disease by Davis, Robert

Voices Of Alzheimer's: Courage, Humor, Hope, and Love in the Face of Dementia by Betsy Peterson I received "voices of Alzheimer's" by Betsy Peterson as a gift. It is a very heart warming book that I am glad I own and read portions of it periodically. It has little paragraphs written by AD patients, by spouses etc. I recommend it to all of you - gendl5

"Alzheimer's from the Inside Out", Richard Taylor, 2007 - A retired psychologist, shares a courageous account of his growing divide between his reality and the reality of others. - Sailingsaint

There are a couple of books written by Thomas DeBaggio, Losing my Mind and When it Gets Dark. They were interesting but I did not get as much out of them and I did the other ones. -- Gaggys-granny You can also listen to archived interviews with Thomas DeBaggio on NPR - Norbert

**** Written for children ****

I also received "What's happening to Grandpa" by Maria Schriver. It is actually supposed to be for children but is good to let anyone know what is going on with your loved one. (in non technical words) - gendl5

Explaining Alzheimer's To Kids (Web article) http://alzheimers.about.com/od/kids/a/Explain_alz.htm

Just for Kids and teens (web article) http://www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp

What’s Happening to Grandpa? By Maria Shriver

What's Wrong With Grandma?: A Family's Experience With Alzheimer's (Hardcover) by Margaret Shawver

Alzheimers Bibliography for children and teens http://www.zarcrom.com/users/yeartorem/AlzBibKids.html

*** Misc *** The Forgetting, Dale Schenk This book is Alzheimers as literature. It is not a how to book. It explores the history of Alzheimers and evolution of alzheimers research, plus alzheimers in historical literature, and ties into some current interest stories. - Norbert

**** CD Audio books ****

The Alzheimers Dialogues - Sherril Bover, Nancy Graham ISBN 0-9771625-1-6 - barbkd

Dancing with Rose. I don't remember the author's name. I listen to it on my MP3. -barbkd Dancing with Rose: Finding life in the land of Alzheimer's, by Lauren Kessler

**** video **** Complains of a Dutiful Daughter

**** movies **** Elegy for Iris The Notebook The Savages (2007)


[This Message was Edited on 04/12/2008]
[This Message was Edited on 05/08/2008]



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  Sailingsaint
2/3/08 5:58 PM
Thank you, Norbert

Thank you so much for consolidating this book information. The year of publication is helpful in evaluating them also.

I would also suggest Richard Taylor, "Alzheimer's from the Inside Out". 2007 - A retired psychologist, shares a courageous account of his growing divide between his reality and the reality of others.

Thanks again, Norbert, for all you do for our messages board with your accurate and compassionate responses to all the postings. Nancy (Sailing Saint)



  MiniAppys
2/4/08 8:37 AM
Another book you may consider

Hi Norbert, I will be looking for some of these books. Another book that you might consider for your list is "Alzheimer's Disease - A Guide for Families" by Lenore S Powell with Katie Courtice. This is about 350 pages of information dealing with "What is Alzheimer's and what it is not; all the way to the end stage. This book covers just about every emotion from diagnosis, denial, anger, depression, guilt, and fears; Understanding and dealing with the patient's problems - this section breaks down to several sections including the psychological toll of memory loss, everyday life, the nursing home dilema, death and bereavement; and Taking care of yourself - this goes into safeguarding your own health, excercises for a healthy mind and help for troubled caregivers. I have not completely read this book as yet but well into it as this book was loaned to me recently by a person who has an adult home for Alzheimer's and dementia that we are considering placing my Mother in as soon as an opening comes up. I have been reading sections of it and it is a down to earth type book easily read but full of information. Every area is well explained and how to deal with it. This is a book more for the family to help with understanding Alzheimer's, what to expect and how to cope with the changes of our loved ones as the AD progresses. Judy



  rockgor
2/7/08 8:21 PM
Very nice

of you to post all this info, Norbert. Thanks.

Rock



  Sailingsaint
5/8/08 11:04 AM
Another stage

I am currently at the stage of considering placement. An excellent book on topic is "WHEN LOVE GETS TOUGH, THE NURSING HOME DECISION". It is not specific for Alz, but is is excellent on all the areas.



  norbert
5/8/08 12:15 PM
Thanks SailingSaint

I added it to the list

Norbert



  2104
3/12/09 6:55 AM
Other books...

1) "Still Alice" by Lisa Genova (excellent reviews on amazon.com)

....I just read a new book that's fiction, but is related to Alzheimer's.
The author does a fantastic job showing what it's like for the professor/mom
affected with EOAD and her family members.
Two thumbs up for this book. Posted by Busyasabee (Erin)


2) The family found the book "Sunset" by a RN , Deborah Howard very helpful.
It is a reflection of the final journey. Posted by Alice

[This Message was Edited on 05/09/2009]



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