Lewy Body Dementia: A Manual for Staff

We hope you went to Amazon and downloaded your free digital copy of our book, Responsive Dementia Care: Fewer Behaviors, Fewer Drugs. We will be offering more of our ebooks for free as the year goes on. In fact, we have finished a "new" book, just in time for Christmas. It will likely be the next one we offer. Keep an eye out for in about February. In the meantime, it out there now, just in time for a gift for your helpers. This book is a major upgrade of our old Riding a Roller Coaster with Lewy Body Dementia. This was the very first book we wrote about LBD, and it was published the summer of 2009. A lot has happened since then and we've included it in our new book, Lewy Body Dementia: A Manual for Staff. Some of the new info:

• An expanded view of how dementia affects the emotions, thinking and behavior.
• The new 2017 Dementia with Lewy Bodies criteria, along with explanations and a discussion of brain imaging and a comparison to the older but still in use Parkinson's Disease Dementia criteria.
• Our very successful style of responding to your loved one's delusions with empathy and acceptance. This is of course, a much condensed version of what is in our Responsive Dementia Care: Fewer Behaviors Fewer Drugs book.
• Information about symptoms now recognized as being Lewy-related, such as apathy and a whole section on mood disorders.
• Information about alternative therapy options and techniques.
• New information about antipsychotics, with stronger warning by dementia experts to use non-drug remedies before antipsychotics with "all dementias" not just LBD. But also, a newer antipsychotic that may work better with LBD and the removal of Seroquel from the Beers Criteria of drugs for seniors to avoid.
• The many advantages of medical marijuana and CBD with dementia.
• Information about the LBDA's Research Centers of Excellence, which improve community knowledgeable LBD treatment and care and provide support for the care partner.
• A huge Resources section, with information about a variety of subjects like alternative therapy, brain donations, caregiver information and support, drugs, home safety, treatment, residential placement and more.
• A huge Glossary, with words in this manual and others that you might come into contact with later.

This book is a great gift for your care staff, either at home or in a facility. When you buy it bundled with our other books, you get a bargain. Click here to see the offers.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Stuck in Caregiver "Dementia"

I just read Florrie Munat's book, Be Brave, A Wife's Journey Through Caregiving, in which she tells the story of her six year care partnering journey with her husband, Chuck. I was impressed with her honesty as she shared how she'd been caught up in so much denial and "magical thinking." Intellectually, Florrie knew that Chuck's dementia was an incurable, progressive disease but emotionally, she could not accept that prognosis. She talked about how she felt that she must stand in the path of the progress of the disease, that she felt that if she did everything "right" she could stop it, change it, get their life back. Of course, this was a lost cause and so then she added guilt and failure to her other emotions.

Sadly, Florrie's story is not unusual. It is similar to that of many care partners, complete with denial, or as she calls it "magical thinking," gargantuan efforts, guilt and failure. No wonder care partners are so often burnt out and often die before their charges do!

When Jim and I talked about Florrie's story we began to look at it another way. Chuck wasn't the only one with dementia symptoms. Anyone who experiences extreme stress will also have dementia-like symptoms, not dementia itself, but the same symptoms that people with dementia have. Their thinking becomes inflexible, single-minded and obsessional.

When a person living with dementia (PlwD) has a delusion, they are stuck with it. Their limited thinking abilities do not allow them a second opinion. They must believe the delusion their brain has presented to them as fact. A care partner can explain, argue or defend but nothing will change the PlwD's belief, their reality.

In her stressful condition, Florrie's "magical thinking," caused her to believe beyond all doubt that she had to be with Chuck continually for him to be cared for properly. Even though many people whom she respected and whose advice she normally would have accepted told her to let go, to take some time for herself, she couldn't do it. It wasn't that she wouldn't. She literally couldn't.

Florrie's magical thinking was her reality and she was stuck with it just like a person with dementia is stuck with their delusions. Care partners learn that they cannot explain, argue or deny a delusion because this is their loved one's reality and it can't be changed; not by the care partner and not by their loved one. Likewise, you can't expect an overburdened, stress-out caregiver to understand the need to change their behavior. Suggesting this will simply increase their determination, adding feelings of loneliness and isolation due to your obvious lack of support for their "very necessary" efforts.

What usually happens is that something interferes. For Florrie, it was getting a definite diagnosis of LBD*, at which time she began to accept the invincibility of Chuck's deterioration and the fact that he'd never be able to live at home again. Often it is something more drastic, a fall, an illness, an injury of some sort, maybe to the care partner, maybe to their loved one. But something finally gets the care partner's attention and they have to accept that they can't do it all.

A month after Chuck's LBD diagnosis, Florrie was taking more time for herself and she was able to write in her journal that it was a privilege and blessing to take care of Chuck. When she let go of the full responsibility for something she couldn't control, it greatly reduced her level of stress. Then, unlike true dementia symptoms, her stress-related dementia-like symptoms decreased and she was able to enjoy life, and Chuck, again, but in a more accepting way.

Most people don't even want to consider the possibility of dementia before they have to. Denial is not only possible, it's the norm! But treat the need for self-care like insurance. When you buy a car, you don't plan to have a wreck, but you buy the insurance anyway. And you don't wait until you need it, because then, it's too late. You buy it as soon as you get the car, so that no matter what happens or when, you are protected.

It's the same with dementia. No one plans for their loved one to have dementia. But "buy the insurance." At the first hint that dementia might be in your future, start thinking about self-care. That's as important as finding out what kind of treatment is best for your loved one. Find out what you need to make routine to avoid caregiver burnout and put it into practice now even if you don't feel the need of it. These are the things like taking an hour for yourself that get lost, forgotten and dropped as the caregiving gets more demanding. By making your own care a priority right from the first and setting up routines to protect it, you will give your loved one a much happier, relaxed and just plain better care partner.

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

We love and welcome comments but we will not publish any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures and marijuana.

* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Lewy Body Phrase for 10-31: Our Upcoming Book

What better day than Halloween to talk about a book that helps care partners deal with the frightening and bewildering behavioral and psychological symptoms of dementia (BPSD) that start showing up far too early with LBD but eventually show up with most dementias?

We plan to have our upcoming book published in time you to use it as a Christmas gift. If you've been following daily October blogs, you already know what it is about. Each of these blogs is a tiny sample of the information in the book.

Of course, since these blogs were kept very short, they contained only a few of the items covered in the book under each subject and seldom included the many quotes that make the book so much more personal.

We plan to offer versions of the book: one for care partners and one for care staff. You can get one for yourself and one as a gift for your helper. We will list it on LBDtools.com and on Amazon so watch for a notice!

For information about Lewy body disorders, read our present books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Honoring the 2016 World Parkinson's Congress

The 4th World Parkinson's Congress (WPC) is in Portland Oregon, from September 20-23, 2016 and we are there! If you see us, do stop and say “Hi.” We are also excited that all three of our books will be on display in their Book Nook.

Parkinson’s disease (PD) and Lewy Body Dementia (LBD) are very closely related. Well over half of those with PD go on to develop LBD, and the percentage increases the longer a person lives with PD. For a long time, PD was considered a “movement disorder” but now there’s a lot of interest in its “non-movement symptoms,” symptoms that are also symptoms of LBD, like hallucinations, active dreams, low blood pressure on rising, drug sensitivity and of course, cognitive problems.

In honor of the WPC, we are offering you this great 3 for 2 special:

Purchase both of our published, award-winning, books and get a FREE manual for staff. 

Just click "Buy Now" below! 

Offer good til November 1, 2016 or until our limited supply of books runs out!

Award Winners:

“A Caregivers Guide to Lewy Body Dementia”

and

“Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia”

are paired with our staff manual,

“Riding a Roller Coaster with Lewy Body Dementia”

in this special TRIO Pack WPC offer.

Bought separately these books cost $62.50
The Trio Pack regulrly sells for $49.95
This month only, get it for $42.90

Buy Now!

For more about our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

A Special For Our Blog Readers Only!

Click here to buy

We are proud to announce that our newest book, Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders, is being well received by readers. In celebration, we are offering it to our blog readers at a special discount. Just click on the photo to go to buy this book that normally sells for $22.95 for only $19.95. All we ask in return is that you submit a review to Amazon.

Managing Cognitive Issues adds to the information in A Caregiver's Guide. Like the Guide, it is easy to read, filled with facts and illustrated with personal experiences. It describes the symptoms that precede LBD and offers many ways to slow the progress of this degenerative disorder using alternative therapies, and limiting the use of Lewy-dangerous drugs.

Click here to buy Trio

If haven’t yet read A Caregiver’s Guide to Lewy Body Dementia, or if you want another one for a gift, Whitworth Trio. This includes Managing Cognitive Issues, A Caregiver’s Guide, and Riding a Rollercoaster with Lewy Body Dementia, a Manual for Staff. This set of three books by Helen and James Whitworth are worth $62.95 separately but for a limited time you can get them all for only $49.95. 

A Caregiver’s Guide to Lewy Body Demetnia, published in 2010, is a excellent reference book. This book received a Caregiver Friendly award from Caregiver.com and Today's Caregiver magazine in 2012. It is usually on Amazon’s top ten list of books about Parkinson's, and top 100 about dementia (that's a much larger category). Just recently, it was Alzheimer’s Weekly and Dementia Weekly’s Book of the Week  in May, 2014.

Riding a Rollercoaster with Lewy Body Dementia, published in 2009, was our very first book about LBD. The information in it is very similar to that in the Guide, except that it is directed towards staff rather than family. Since 2011, it has not been is available except as part of our LBD Training Kit. People do continue to ask for it however, and so to celebrate our new book, we have included it in our Trio. Keep the first two for yourself and consider giving this book to a helper or care facility to help them provide more knowledgeable care to your loved one.

Read more about these books and others on the LBDtools website.

Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders

We are excited to announce the publication of our new book, Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders. Third in a series about Lewy body disorders, and is written in our usual easy to read style, packed with facts, personal experiences and 13 pages of resources, it is directed especially towards people dealing with Parkinson’s and other early Lewy body disorders.

Many PD families are understandably frightened of the idea that PD and LBD share a history and that Parkinson’s dementia is a form of LBD. Managing Cognitive Issues answers that fear with the power of knowledge and the strength of hope. It describes the symptoms that warn of impending LBD tells how to use therapeutic alternatives to drugs to extend awareness and maintain a better quality of life. With degenerative disorders, like PD and LBD, it is easy to feel as though the disease has taken over and life is spiraling out of control. Managing Cognitive Issues offers tools for regaining control, such as living a healthy lifestyle, having a positive outlook, using better communication and practicing stress management.

Even though Parkinson’s is one of the major predictors of eventual dementia, its cognitive issues have been overlooked by the medical community until recently. This is changing as neurologists and researchers recognize that these issues as every bit as important as mobility and often more distressing.

In the book’s forward, Dr. James Leverenz, a well-known movement disorders and dementia specialist, states, “As a physician that works in this field, I am often frustrated by comments that ‘there is nothing that you can do.’ That couldn’t be further from the truth, and the Whitworth’s give you the tools to help manage the disease and its effects on the person suffering with it and those around that person.”

Order Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders from the Whitworth’s online bookstore at www.LBDtools.com.store.html

Fall Book Reviews

Time to do a few book reviews. Just click on the book cover for those that we recommend and you can go right to Amazon to order them. They are also available in the LBD Book Corner along with many other LBD-related books on our website. Please know that we receive a small fee for anything you order from Amazon via our blog or website. It all goes towards maintaining our work.


Confidence to Care: A Resource for Family Caregivers Providing Alzheimer's Disease or Other Dementias Care at Home by Molly Carpenter. $10.68. Published by Home Instead, this book is an example of that company has continually supported good caregiving and the family caregiver. It provides many suggestions for dealing dementia symptoms including behavioral ones like delusions. It’s one detraction is that it is short: 40 of the 160 pages were left blank to be used as a journal. While we consider journaling a necessity, we wouldn't recommend that you do it in another book! However, its price is also low, especially for a reference book. Also available in Kindle, but we don't recommend buying reference books in Kindle form. You want to write in the margins and use book mark tabs, etc. in a reference book!

Going Gentle Into That Good Night by Sandra Ross. Kindle, $6.99. Ross tells a heartfelt account of her journey, but we cannot recommend this book. 1) Poor editing detracts from the readability. 2) Where some books are too clinical, this one does not provide enough background information. 3) Worst of all, Ross sees respite for the caregiver “tantamount to abandonment.” We believe that without respite, caregivers can become irritable, ill and unsafe with their charges paying the price. We could overlook the first two but a recommendation against a basic caregiver need is not acceptable.


Fatal Tide (Book 3 of the East Salem Trilogy) by Lis Wiehl and Thomas Nelson. Kindle: $17.44, MP3 CD: $10.79, and Hardcover: $18.36. This is a suspense fiction with a complex plot involving angels and demons. The only reason we post it here is that one of the protagonists (Tommy) has a father (Arnie) with LBD. While LBD doesn’t play a large part in the story, the authors did excellent research and portrayed the symptoms well. Even it's Kindle price is high for a non-reference book, but the writing itself is quite good and if you like this kind of novel, it would be worth looking for in the library.

Dementia with Lewy Bodies and Parkinson's Disease Dementia: Patient, Family, and Clinician Working Together by J. Eric Ahlskog, $31.19. We had great hopes for this book but reviewers don’t support those hopes. They report that it is too clinical and lacks new information. Even more condemning, it advocates the use of drugs almost exclusively and does not give much space to non-drug solutions. With LBD, where drugs can be so damaging, this is enough to recommend against this book, especially considering the high price.

Making the Connection Between Brain and Behavior, Second Edition: Coping with Parkinson's Disease by Joseph Friedman. $15.38. Instead of the above book, we recommend this book that is half the price and provides better information. Although it is directed to the Parkinson’s community, anyone dealing with LBD can also profit from reading it. While Dr. Friedman comes from a movement perspective, he is also a member of the LBDA Scientific Advisory Council. Dr. Friedman adds enough explanations to help a person understand without getting overly clinical and boring. He addresses behavioral symptoms such as hallucinations, anxiety and much more in a compassionate way with many vignettes to help the reader relate.

Blogs and FaceBook Pages about LBD

When I first met Jim and became involved with the LBDA in 2005, it was the only game around. No books, no blogs, no other websites about LBD. Well, there was one book: Dementia with Lewy Bodies, edited by John O’Brian, David Ames and Ian McKeith came out that year.  It was written by the best experts in the field and is still probably one of the best books for professionals. But with its clinical language and high price ($130), it isn’t a book for caregivers. The only reason we have one is because every 2005 LBDA Board member received one a gift. Jim was President that year and he still prizes this book. However, a lot has happened in the nearly a decade since that book was written. It is no longer current although the information in the book is still accurate—it’s just that researchers have found out so much more.

Now there are many books for LBD caregivers. I named several in a couple of recent blogs. In this blog I’d like to list some other resources. All of the following blogs are in the blog list on the right of this page. Do check them out.

3 Years and 13 Dumpsters is hosted by Joy Walker. You may recognize the name. She wrote a book with the same title. Joy is a surviving LBD caregiver, who kept on giving even after her father passed. Now she is a LBDA Support Group facilitator and Helpline responder. Her latest blog was about hospice, and well worth the read.

Sharing my life with Lewy Body Dementia is hosted by a man who calls himself Silverfox. He and his wife also write several other blogs. Silverfox has LBD and he posts about his experiences with it. Caregivers hear a lot about what other caregivers think, but it isn’t often you find an articulate person with LBD who is willing to share his/her thoughts with us. I wish he added more feelings, but after all, he is a man....Even so, his stories may help you understand your loved ones better.  His blog received a Healthline Best of the Web award.

Living with a Thief named Lewy Body Dementia is another winner of a Healthline Best of the Web award. This is hosted by Kathy Lowrey, whose husband of 31 years was diagnosed with LBD in 2007 and is still living at home. Her experiences will resonate with your own!

Living Well with Lewy Body Dementia is hosted by UK blogger Ken Clasper, who was diagnosed with Early Onset Lewy Body Dementia. Ken’s writing is more political than personal, but nevertheless, interesting. One of his latest blog was about “assistive technology,” specifically GPS tags for people with dementia. His take is that if it helps, and cuts costs as well, do it and quit worrying about “civil liberties,” which he says, he lost when he was diagnosed with LBD.

The new trend seems to be Facebook pages that act as a forum. Here are a couple:

Dementia: The Journey Ahead is hosted by Susan Scarff, author of a book by the same title. This is another book I reviewed recently and the blog is every bit as good. Lots of good suggestions for websites and some good discussions as well.

Memory People  is hosted by Rick Phelps, who has Early Onset Alzheimer’s Disease (EOAD) but people with all kinds of dementia, including LBD, post. This is another place I go to when I want to know the patient’s view. Patients and caregivers both post which provides a well-rounded view of the issue discussed. This is a closed site so as to maintain privacy. From your FB home page, type “Memory People” into the search bar.  Then click on Memory People, and follow the instructions.

Our website: LBDtools.com
Bookstore: LBD Book Corner

Books by People with Dementia

Here are some books that show what dementia is like from a very personal view:

Life in the Balance, A Physician’s Memoir of Life, Love and Loss with Parkinson’s Disease and Dementia, by Thomas Graboys and Peter Zheutlin (2008) was one of the first books we read about LBD. It shows the effort a person with even early LBD must make to appear “normal.” Dr. Graboys was a well-known cardiologist and so his book can get somewhat clinical but it is still an easy read.

The next two books are by men who were diagnosed with Early Onset Alzheimer’s Disease (EOAD) in their fifties. However, many of the symptoms they discuss are also common with LBD. (And we know that most dementias aren’t pure—they might have LBD as well!)

Don’t Bury Me, It Ain’t Over Yet by Charles Schneider (March 6, 2006) is well worth reading, if only for his chapter on what’s it like to have dementia. Charlie has been active on the LBDA forums. His book is shorter and less professional than Dr. Graboys’ book, but then Charlie wrote his by himself and Graboys had Zheutlin to help him.

While I Still Can, by Rick Phelps and Gary Joseph Leblanc is written in third person but Leblanc, but it is definitely Rick’s story. Leblanc was a caregiver for his father who had AD and so he adds his own experiences. The back of the book is filled with valuable caregiver suggestions. Rick hosts a Facebook page called Memory People where dementia victims and their caregivers post. I continue to be impressed by the articulate posts by Rick and other people with dementia. Their first hand experiences have helped me understand this disorder better and  might help you gain insight into the minds of your loved ones.

And finally, Still Alice (2009) is a novel by Lisa Genova, written from the point of view of a very brilliant woman diagnosed with EOAD at age 50. Although it is written as fiction, it rings true. The author did her research well. And she writes a very good, very interesting story as well. This book has been on the New York Times best seller’s list and won several prizes.

Of course all of these books are available from Amazon via the LBD Book Corner on our website. Thank you for starting your book search there. Amazon pays us a few cents for each book (or anything else, for that matter) you buy. BTW, I recently made a large non-book purchase from Amazon. I spent a lot of time doing some research about which article to buy. I’d gone to Amazon originally via the Book Corner, but the next day, I went back to buy my chosen article, I forgot to do that—just went directly to the item—and we lost the commission! Don’t be like me--please remember to go through our website every time! Thank you for your help.

Website: LBDtools.com Bookstore: LBD Book Corner

Books About LBD, The Bad and the Good

There are more and more books out now about Lewy Body Dementia. Some are good. Some aren’t. Here is our take on a few of them:

One book we were asked about recently was Lewy Body Dementia: Causes, Tests and Treatment Options by Adam Wainwright MA, Erik Stevenson MD and Deanna R Miller RN (Apr 14, 2012).  We had great hopes for this book when it first came out. Like A Caregiver’s Guide to Lewy Body Dementia, it appeared to be a fairly easy to understand overview of LBD although its presentation is a little more scientific.  However, upon reading it, we found that other than a section on testing, most of the information is similar to that in the Guide, but not as thorough. Also, it contains very few personal experience examples, making it a less interesting read. Although this book has been out almost a year, it has only six Amazon reviews. The last reviewer, back in July, referred readers to the Guide as a better choice. We do too.

Another book we see people ordering occasionally is Dementia with Lewy Bodies by John Hewitt MA and Michelle Gabata MD (Apr 15, 2011) The under $10 price may make it attractive but the reviews are enough to keep us from spending our money. Again, there are only six and the last three give it only one-star. One reviewer describes the book as 28 pages of subject matter, an inadequate glossary, and an unexplained 94 page directory of holistic physicians. A review from a geriatrician states that the book “could do more harm than good” and says he/she could not recommend it. Reviewers also note that the LBDA is not mentioned anywhere in the book.

A third book on our “Do not buy list” is The Official Patient's Sourcebook on Dementia with Lewy Bodies, A Revised and Updated Directory for the Internet Age, by Icon Health Publications, James Parker and Philip Parker, Eds. (2002). First, too much has happened with LBD since it was published.  Secondly, it truly is only a directory of internet resources available in 2002, and not worth the high cost of nearly $30. Finally, the single (one-star) Amazon review reports that it is “more for medical students or doctors and not for the common person.” We'd argue that even medical personnel would not find this book very helpful.

On the positive side, here are a couple of books that we loved:

Living with Lewy Body Dementia (Sep 5, 2012), is written by Judy Towne Jennings, a physical therapist who shares her expertise with her readers as she tells her story. The book is worth buying just for that. But it has more. She suggests looking at the Lewy journey as an adventure and doing all you can to make your life enjoyable. She and her husband traveled and she shares many traveling tips.

We also recommend Treasures in the Darkness by Pat Snyder (Apr 6, 2012).  As Pat tells her story, she writes about early LBD and how to slow it down. She emphasizes decreasing stress and being prepared. Her chapter on renovating her home to be able to keep her husband home longer is great. Like Judy, she also encourages families to enjoy the life they have.

You can get the Guide and the last two books by going to the  LBD Book Corner, on  LBDtool.com. While you are there look around and see if there is anything else you might enjoy. Thank you in advance for doing your Amazon shopping from our website. The small fees we receive from Amazon help to pay for our work.

Website: LBDtools.com