I thought we could begin again a thread of books that might be useful or interesting for Alzheimer's disease and other dementia patients. 

I am reading "The Alzheimer's Answer" by Marwan Sabbagh, M. D.  published in 2008. 

It is primarily about reducing risk factors but it explains well the pathology of Alzheimer's disease in easy to understand lay language. 

There is a very good section on what to eat. 

The foreward is by Justice Sandra Day O'Connor, whose husband has Alzheimer's disease.

Iris L. 

I have found, for myself, that "What If It's Not Alzheimer's?: A Caregiver's Guide To Dementia" , although it's written as a caregiver's book, it's also been an extremely helpful resource book for me, the person who actually does have frontotemporal dementia.  It's edited by Lisa Radin and Gary Radin, whose husband and father, Neil, had frontotemporal dementia.  It's chapters include The ABC's of Neurodegenerative Dementias; Frontotemporal Dementias from a Clinical Perspective; The Role of Genetics; Finding the "A" Team of Health Professionals; Therapeutic Interventions, both medical and non-medical; Rehabilitation Interventions; Understanding Stages of the Disease; Donation of Human Tissues and Research; Self-Expression and Safe Eating (speech, swallowing and nutrition); Exercise and Mobility; Challenging the Mind: Activities and Socialization; Fostering Personal Care: Hygiene, Dressing and Eating; Creating a Safe and Supportive Environment; Adapting to Emotions and Behaviors; Maintaining General Medical Care Practices; Coping With End Of Life Concerns; Using Community Health Services; Nursing Home and Assisted Living Options; Creating Helpful Support Networks; Securing Financial and Legal Readiness; Respite and Personal Care for the Caregiver; Managing Emotions and Grief from Caregiver's Perspective; WHEW!  I know I gave a lot of information, but I wanted you to know how in-depth it is.

On another note: I have gone through a very tough week, since last Wednesday, dealing with a major life upheaval involving my very best friend of 34 years; she's like a sister to me.  Well, now that it seems to be turning a positive corner for her, everything is "coming to a head" for me.  I haven't been able to sleep in days, even though I am on a sleep medication, it hasn't worked.  The other day I never got to sleep until 11: 00 the next morning and last nite I couldn't get to sleep until 6:00 this morning.  Then I slept until 9:00 a.m.  I have been crying uncontrollably and my headaches are horrendous.  I know that this is exacerbating my FTD and my head is so jumbled and cluttered that I have so much trouble thinking and trying to verbalize my thoughts, even typing them.  I can't tell you how many times I'm correcting this message.  I pray, pray, pray that I can get sleep tonite.  Sleep deprivation is awful!  I have a call in to my therapist; normally she calls me back right away but I haven't heard from her yet.  I've called different friends but have had to leave messages but no one's called me back yet.  I'm very anxious inside and, like I said, very emotional and crying.  It reminds me of when I was in the earlier stages of FTD before I was put on my meds: I got my days and nights reversed and was very emotional.  Since medical intervention and therapy I've really been able to keep things in check, but this past week has been too much for me, obviously.  Must go, starting to get choked up again.  Thanks for listening.

Hi Nomeno, Yes, do follow Myriam's advice. Do let us know, we do care.

The help line is: 1-800-272-3900

Please give us an update so we will know how you are doing today, and if you have gotten rid of your headaches and have been able to get some sleep.

Have you tried calling back after a certain period of time when your therapist doesn't call you back?  Sometimes, messages for call backs are not always received.

Maybe you could discuss with your therapist about what to do when you desperately need help and cannot get in touch.  Don't let them get by with telling you to call 911.

If the therapist can't call, then ask her to give you a name and number who you can call.  This can be worked out.

My book recommendation is An Essential Guide: Living Your Best with Early-Stage Alzheimer's by Lisa Snyder, MSW, LCSW.

My DH has EOAD and is identifying with so much in this book.  It is really helping  him to understand why he acts and feels the way he does.

It also helps me as well to understand what is going on with him.  I also think the book helps us to better communicate with each other.

Iris, thanks for starting this thread.

Another book recommendation.  The Alzheimer's Action Plan (what you need to know...and what you can do...about memory problems..from prevention to early intervention care.

Written by P. Murali Trisomy, M.D. and Lisa P. Gwyther with Tina Adler  

Dr. Doraiswamy is a renowned expert on brain aging and mental health, and is head of Duke University's biological psychiatry division and a Senior Fellow at Duke's Center for the Study of Aging.  He has also been director of clinical trials at Duke for nearly ten years.  

Lisa Snyder's book would make a great present for someone diagnosed within the past several months. 

An older book, written by someone with the disease is: Losing My Mind by Tom DiBaggio. He actually wrote two books. I believe reading that book was the first thing that gave me a Reason to Hope  after my diagnosis.

Another book of fiction, which reads as autobiography is: 

I'm Still Alice by Lisa Genova. Keep the tissues handy and do keep reminding yourself that it is fiction. Lisa interviewed many people in the Early Stage of the disease in preparation of writing the book. Be warned; some people felt the book hit too close to home. So, if reading it upsets you, put it away.

Also worth the price is: A Woman's Nation Takes on Alzheimer's edited by Maria Shriver. This is sort of something for everybody. (Full discloser, there is an essay of mine in it.) There are essays written by caregivers and those with the disease. Essays by just plain citizens and the high and mighty. The photography is fantastic, especially if you get the print edition. There are several pictures of our own Lisa428, including a wonderful two page spread of her mom and herself. There are also articles about the disease and stats. It's also available on e-book.

Also good is:

Nomeno. Good news!

You live in PA?  Tell me where, if you wish.

We have a monthly Early Stage Support group via phone. You can call the help line 1-800-272-3900 and ask to be put in touch with Candy Y., the Early Stage Coordinator from PA. Any others from PA, we'd love to have you on-line.

Fantastic. You, for sure are part of the Greater PA chapter and you might be part of the Wilkes-Barre office.

If so, we are bound to meet.  

I am ordering Alzheimers from the Inside Out by Richard Taylor.  Lots of reviews to  read on Amazon.

You're right, Alz+, the message boards offer more hope, inspiration and support than anything you'll find in the outside world.

I'm a bit tired today after my busy week.  I went to Camera Class every morning and had an outside activity every afternoon.  I'll start a new book thread next week.

Iris L.

Iris,

Tell us about your camera class. Sounds interesting.

Alz+: Not every book is for every person. Lots of people do like the book. Many people who were diagnosed with the disease at a young age could not read the book. Why? It was too realistic. It hit too close to home.

Before she wrote the book, she did more than have casual observations of those with dementia. With the cooperation of the Alzheimer's Association, she met and had long conversations with many living with Younger Onset.

Authors are often told to write about what they know about. The life she knows best is the Boston academia and so that's the setting of her book. It belies the common myth that folks with superior intelligence don't get dementia. 

Lisa spoke at a meeting at the DC Alz. Assoc. Forum many years ago. One of the criticisms of the book is that the disease proceeds much faster than typical. She acknowledged that, but stated that made the length of the story doable. Not every publisher will print a book the length of War and Peace.

I know I was only able to read with the box of tissues at hand. I would get so angry at members of her family. I had to keep reminding myself that this was a work of fiction.

reminding myself 

I still feel it is a good read for those of us with the disease. Those younger onset need a warning to stop reading if it hits too close to home.

 And with any book. Stop reading when it upsets you.

I deeply appreciated the book "Deeper into the Soul" (Beyond Dementia and Alzheimer's Toward Forgetfulness Care) by Nader Robert Shabahangi PhD and Bogna Szymkiewicz PhD. 

Some excerpts from introduction are:

 "In this book we highlight a basic attitudinal shift:

* Dementia is our teacher.     

* Rather than simply a disease, dementia has purpose and meaning.

* Rather than being people simply in need of our care, people who forget can teach us about life and living.

* Rather than a burden, people with dementia offer us an opportunity to deepen ourselves, to go deeper into our souls. ..." 

And later: "Being with forgetfulness indeed takes us deeper into the soul. Whether we experience forgetting in others or glimpse it in little moments within ourselves, forgetfulness offers us a gift, if only we are capable of seeing it as such. Perhaps loss is always a gateway to the real gains ..." 

 And last but not least, this excerpt: "For those who can truly lay aside their aversion or discomfort and learn to accept what is, the gifts of the soul await; equanimity, intimacy with the dream-world and its magical ways, slowing down to the speed of soul essence."

It took several tries for me to understand the text of this book, but even on the first try I could understand the brief blurb-balloons for the cartoon explanations that go with each page.  VERY much appreciated the positive perspective offered by this book.

Truthful L. Kindness (yes it is my legal name) with probable Lewy Body Dementia at 56yo

I came across this book by a patient.  It was published in 2003, so it's a bit older.  here is some info about it:

 

 

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I did not read this book. I believe it was mentioned by someone on another board, and I posted it here because it is written by a patient.

Iris L.

I've read I'm Still Alice and just ordered I'm Losing My Mind. I was happy to hear there is a book written from a first hand account and experience!

Thanks, Mimi

No I'm. Just Losing My Mind. He also wrote a follow up.

Maria Shriver: A Woman's Nation Takes on Alzheimer's. A bit of everything, from professionals, caregivers and patients. I have an essay in it. Lisa 428 has lots of photos, including a double spread of herself with her now deceased mom.

And a reminder. Please, short paragraphs. Try control/return.

5.0 out of 5 stars Review – Michael Ellenbogen’s book: From the Corner’s Office to Alzheimer’s, July 16, 2014

By 

ecce - See all my reviews 

This review is from: From the Corner Office to Alzheimer's (Kindle Edition) 

I’ve been in the aging field for 20 years, the last 10 of which solely focusing on various issues related to improving the quality of care and life of persons with dementia. Nothing has taught me more about the lived experience, struggles, and hopes of persons with Younger-Onset Dementia than this book.

Many people think they understand dementia but they don’t really have a nuanced understanding of what it actually means to live with it. This book is precious because it helps bridge this major gap.

You often learn about discrete aspects of the lived experience of persons with dementia but rarely have an opportunity to get a holistic and ongoing picture of a person’s journey through the early stages of dementia.

The best educational materials usually come from persons living with dementia. The knowledge from inside out is unparalleled in value and could be an effective vehicle for change in our culture and approach towards persons living with dementia.

With this book, Michael gives us a rare opportunity to come closer to understanding the avalanche of losses and emotional pain caused by dementia. As importantly, it demonstrates how misinformed perceptions about persons living with dementia can have tremendous effects on the person’s psychological well-being.

Through his persistent commitment to detailed documentation of his daily experiences, Michael teaches us about the emotional roller coaster commonly experienced by persons with dementia on a daily basis.

Through his experiences we learn about serious gaps in services, programs, and policies that cause tremendous frustration and suffering to persons with dementia. These often under-recognized issues in our communities and society limit these individuals’ ability to reach their full potential and preserve their dignity. They also prevent family members from getting the support and respite they sorely need.

The insights and lessons shared in the book (such as the long and excruciating journey for getting a diagnosis) will prove critical for many others who currently experience early signs of dementia as well as for those who will develop dementia in the future. They will substantially reduce the suffering of these individuals and their family members, save precious years of life, and help minimize loss of income.

The book could also be used as an excellent teaching tool for various health professionals who are committed to truly understanding the lived experience of persons with Young-Onset Dementia and the wide spectrum of cognitive disabilities caused by this set of conditions. This, as Michael points out, while taking into account that every person is impacted by the disease differently and Michael’s experience may not be representative of all persons with similar conditions.

If used to inform educational materials and training programs, the heartbreaking examples in the book could help improve practices, skills, and sensitivities of diagnostic centers / memory clinics and ensure that clinicians will always listen to persons with dementia and take their concerns seriously.

The struggles experienced by Michael also include numerous frustrations at home in general and with loving, caring, and dedicated family members. The insights shared about these struggles will go a long way in educating family members in dealing with these issues (e.g., denial of dementia, misperceptions, helpful communication techniques, finding joy, and safety issues). They will increase sensitivity among family members to the person. The book also shows how the power of love can sustain persons with dementia in their constant efforts to maintain hope.

The devastating financial impact of the disease on Michael and his family is an underlying theme throughout the book. This knowledge could be used to inform initiatives that will transform federal and state agencies’ decision-making processes, practices, guidelines – and eventually laws that govern and oversee operations of these agencies – to ensure that lifelong hard work of citizens will not be forgotten during times of dementia-related disability and that their rights for financial security will be protected.

The book could be used to increase sensitivity among employers to employees who gave their heart and soul for many years to ensure the financial stability and success of their companies. No dedicated and honest employee should go through what Michael has gone through when he was fired from his 18-year job. We must find ways to ensure that employers will become dementia-friendly and treat their employees with dignity during times of disability.

An excellent chapter in the book is dedicated to important considerations and suggestions pertaining to the process of applying for disability benefits (written by an experienced attorney – John Tucker, Tucker & Ludin, Legal Solutions).

The book addresses other important issues such difficulties with short-term memory, reading and writing, reaching desired destinations, the impact of the physical environment (e.g., noise), driving; dementia work-up for doctors; and assisted suicide. It also provides a strong reminder that persons with dementia may experience other health conditions that tremendously impact their quality of life.

Using numerous examples, Michael teaches us about how he copes (often creatively) with the many functional, cognitive, and psychological losses and challenges along the way. The book contains dozens of concrete suggestions, tips, and helpful resources for dealing with the limitations imposed dementia and those caused by others’ misperceptions, lack of awareness, and insensitivities.

The book also highlights the urgent need of our society to develop dementia-friendly work and volunteer opportunities to ensure that the wealth of life experience, knowledge, professional skills, and wisdom of persons with dementia will be used wisely and creatively to benefit our local communities and give life-sustaining meaning and purpose to these individuals.

The book could inform efforts to reduce the harmful stigma commonly held about persons with dementia and in so doing increase the likelihood that these individuals will be approached with empathy and respect.

It is a powerful, honest, and inspiring testament of the strength and resiliency of the human spirit despite a cruel disease, its many devastating and heartbreaking impacts, and the lack of awareness and sensitivity in our society to this condition.

I highly recommend you to receive this precious (if not life saving) gift Michael has given us. It was an extremely frustrating process for Michael to write the book with his cognitive limitations and we should be grateful that he found the inner strength to complete the writing with the help and support from his wife and his family.

In the words of the late Prof. Tom Kitwood, author of the groundbreaking book Dementia Reconsidered: The Person Comes First,

“People with dementia may have something important to teach the rest of humankind. If we make the venture one of genuine and open engagement, we will learn a great deal about ourselves.”

Reading this book will bring us one solid step closer to the realization that at the end of the day we are all interdependent on each other and that only with this deep understanding we will be in a position to realize Michael’s vision for a truly dementia-friendly society.

Yours sincerely,

Eilon Caspi, Ph.D.

Gerontologist & Dementia Behavior Specialist

I am so glad you posted this book. I bought it, read it and am singing its praises to anyone who will listen. What a treasure! So positive and encouraging! It has a permanent place on my nightstand, and I consult it often.

Truthful L. Kindness--what a lovely name. Many blessings on your journey. It is a sacred one.

Bela, from the Caregivers Board, posted a link to the Colorado chapter's Recommended Reading List.  Most of the books are directed towards care partners, but a few of the books are directed towards patients.   

One of them that I had not heard of before is "A Personal Guide to Living with Progressive Memory Loss", by Sandy Burgener and Prudence Twigg, from 2007.  Has anyone read this? 

A Personal Guide to Living with Progressive Memory Loss
by Sandy Burgener & Prudence Twigg ©2007
Useful advice for people with early stage dementia and insight for family and friends.  Real-life examples of people in the same situations show both positive and negative ways of dealing with possible problems and challenges

Here is the link:
http://www.alz.org/co/in_my_community_alz_books.asp   

Iris L.

I have given this book to many.

Living Your Best With Early Stage Alzheimer's, by Lisa Snyder of the University of San Diego's Shiley-Marcos Alzheimer's Disease Research Center.