The Whitworths of Arizona, bringing science to you in everyday language.

Wednesday, December 11, 2019

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.

Wednesday, December 4, 2019

Get Your Free E-Book!

We are doing it again! We are giving away digital copies of Responsive Dementia Care: Fewer Behaviors Fewer Drugs. The promotion starts Thursday at 12:01 am December 5 and ends on Monday, December 9 at noon.Just go to Amazon and "buy" the book for free anytime during the promotion. All we ask is that you read it and write a review. (BTW, in this time of phishing and scams, know that Amazon does not give us your name when you get this book. It really is free! We give it away so more people will read it, like it, tell others about it and perhaps even buy a paperback copy they can mark up.)

Pat Snyder, author of Treasures in the Darkness and a LBDA Lewy Buddy calls this her favorite of the Whitworth books and says it addresses the most frustrating part of LBD symptoms in a clear-cut practical way. Rosemary Dawson, the administrator of Caring Spouses and long term LBD advocate, says that this book provides care partners with the knowledge to implement non-drug approaches in a comprehensive yet clear way.

To repeat: From 12/5/2019 to noon on 12/9, you can go to Amazon and "buy" Responsive Dementia Care: Fewer Behaviors Fewer Drugs for free. Please do read the book and give us an Amazon review!

BTW, while you are on Amazon, check out our newest book, Lewy Body Dementia Manual for Staff. This is an up-to-date revision of our old Riding a Roller Coaster with Lewy Body Dementia. This book is a great gift for your caregiver or helper or for the care facility where your loved one lives. Click here to get it for even less when bundled with our other books.

Finally, while we are in sales mode, don't forget that we self publish most of our books. This means we can sell them in bulk for much less than full price. We can also customize them for facilities and groups. If you would be interested in this, see our 11/22 blog.

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.

Friday, November 29, 2019

Happy Thanksgiving Weekend

Thanksgiving is a time for gratefulness. As care partners, we sometimes get so blogged down with the responsibilities that we forget to look for the positives. Take some time today and find something to be grateful for. Everything you find, no matter how small will lighten your load. Really! Just thinking positive thoughts does that and being grateful is about as positive as you can be.

In fact, make it a habit to think of three things to be grateful for before you get out of bed in the morning and three more before you go to sleep at night. Try this for a week and I'll bet you'll feel happier.

We are traveling this week, visiting with family. Blessing to all of you as you enjoy this weekend. We hope you too have family to share your gratefulness with. As for your loved one, to make life easier for both of you:
  • If you are traveling, do as much as you can to bring familiarity with you. A favorite pillow or blanket, photos, or other items will make a big difference.
  • If you are having company in, a group that's having a good time often gets pretty loud. Plan an island of quiet in another room where your loved one can escape if needed. Invite family and friends to visit one or two at a time with your loved one.
Happy Thanksgiving weekend!
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
Lewy Body Dementia: A Manual for Staff
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.

Friday, November 22, 2019

Buy Bulk and Save, Save, Save!

This blog and last weeks are blatant sales pitches for our books! We try to avoid using our blog space this way very much but we believe that if you read this blog you are likely also a reader of at least one of our books. We know that LBD is an expensive disease (the most expensive kind of dementia, according to recent reports!) And so although we want you to read our books, we want give you the best deal we can.

Because we self-publish, we can sell our books in bulk at very low prices. If you are belong to a support group, are considering a community information fair or even have a lot of family members who would benefit by a book, you can buy as few as ten books for much less than the normal retail price of $22.95 plus shipping.

We can also custom-print our book covers, with your logo and unique information. This extra effort does require a purchase of 25 books.

Bulk price which includes free shipping via US Priority Flat Rate.
  • 10-49 books: $17.50 per book
  • 50 or more: $12.50 per book
Customization:
  • At least 25 books
  • Front cover: 3" x 4" panel with your logo and information
  • Back cover: Your color photo and up to 200 words of your text.
  • Front title page: Another 3" x 4" panel
  • One-time setup of $20 fee/title
Optional inner pages customized:
  • 1-4 inner pages with your black and white photos and text.
  • One-time $5 setup fee per page per title.
(Thank you Parkland Memory Care in Chandler, Arizona for letting us show your book covers.)


These books are available for bulk and customization:
  • Responsive Dementia Care: Fewer Behaviors Fewer Drugs
  • Managing Cognitive Issues in Parkinson's & Lewy Body Dementia
  • Lewy Body Dementia Manual for Staff (brand new updated version of our old Riding a Roller Coaster with Lewy Body Dementia!)
For more information about these books:
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Sorry, A Caregivers’ Guide to Lewy Body Dementia is published commercially and therefore is not available for bulk purchases from us but you can contact Springer Publishing.


Next week: One more blog about our books. We are excited to announce that our newest book, Lewy Body Dementia Manual for Staff, will be out in both print and e-book versions next week. Since it is a great gift to give your caregiver or care facility, we want you to know more about it. Then we promise we'll go back to sharing great information about Lewy!

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.

Friday, November 8, 2019

Choose Joy

This week's blog is by our friend, author Pat Snyder. If you haven't yet read her book, Treasures in the Darkness, we highly recommend it, especially for those just starting out on this journey. It's about extending the early stage of LBD.

Pat's techniques continue to work well all along the journey. She speaks about "Identifying the Enemy," which she describes as a) the disease and b) caregiver stress. She further divides the stress into four parts, hurt, guilt, frustration and fear/worry. In this blog, she talks about the last one, fear/worry. Hopefully, we'll get her to talk about the other three in later blogs.

We have all felt that fear/worry. It comes with the territory. Acknowledging that is half the battle of controlling it.

The key is to identify fear as one of the things that can hurt you if you let it---so it is your enemy. A wise man named John Ortberg said this:

"Worry is a special form of fear...
Worry is fear that has unpacked its bags and signed a long-term lease.
Worry never moves out of its own accord--it has to be evicted...
Fear destroys joy. Live in it,
and you will know the pain of constant, chronic, low-grade anxiety...
When I live with a fear-filled perspective,
I give my imagination power to rob me of life NOW...
When I live in fear, the power of the 'what if' becomes overwhelming,
and I will go through life without joy.
Joy and fear are fundamentally incompatible."

Now, if he is correct, and I think he is, we can use this truth that joy and fear are fundamentally incompatible to our advantage. To change from a worrier to a Lewy warrior, I suggest that you:

  • Use joy to neutralize fear and worry. Choose to feel joy consciously and strategically. Look for moments of joy in each day and magnify them. Tell yourself, "I will NOT let fear control me!"
  • Change hand-wringing "what-ifs" into positive problem solving motivators. Find others to help you problem solve some potential issues. Remember all of them may not actually happen, but you will be prepared in advance with some solutions if they do. A caregiver support group, local or online, can help you with this(Comment: Worry actually has a job to do. It is to alert you to things that need attention. However, once you've done all you can do, worry's job is done. If you keep it hanging around it becomes harmful.
  • Focus on what is in this moment. This moment is almost always DOABLE. (Comment: We often mistakenly try to use worry to control the future. That's not its job. Instead of helping, it just adds more of that anxiety John Ortberg talked about. When you keep your focus on this moment, worry becomes a non-issue.
  • Preserve your loved one's person-hood by personifying Lewy. Separate the antics of dementia from your beloved.. (Comment: Join with your loved one against Lewy. Being a team helps you to blame Lewy rather than your loved one for his difficult behavior. It also helps him to blame Lewy rather than you for his frustrations.)
  • Love and nurture your loved one while outsmarting the monster. Trust me, if you commit to doing this you will get better at it over time. (Comment: This is a prime example of finding and using joy to combat fear and other negative emotions. Gentle, non-custodial touch, that is, voluntary touch rather than that needed to help with ADLs, and gentle, loving words help both of you feel more positive--there's scientific support for this, but you knew it anyway, didn't you?)

Thanks Pat. Next week, we will probably go back to those great presentations we heard at the conference. One of the LBD legends, Tanis Ferman, did one on fluctuations and hallucinations and I may be able to to adapt it for a blog or two.

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
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

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.

Friday, November 1, 2019

The Imagine Series

the Imagine Series is a patient and caregiver involvement project in the UK that identifies, maps and attempts to understand the unmet needs and main concerns of patients and caregivers with the goal of shaping future research agendas. In 2017, it chose chose Dementia with Lewy Bodies (DLB) as its pilot project, combining its three key areas of expertise: evidence synthesis, citizen insight and technology to meet three key aims:
  1. To understand the unmet needs and challenges of DLB patients and care partners
  2. To identify gaps in the DLB research area
  3. To identify opportunities emerging through new developments in the horizon
To identify the research presently available about DLB, the group searched for found 400 studies. Of these,
  • 48% of research papers focused on diagnosis
  • 20% highlighted dementia treatment
  • 10% related to care partner experience
They found outcomes of clinical trials, by order of occurrence, related to:
  1. Cognition
  2. Sleep
  3. Other
  4. Motor issues
  5. Impact on carer
  6. Attention
  7. Exploratory
  8. Aggressiveness and irritability
  9. Hallucinations
  10. Diagnosis
To identify care partner needs, the project utilized a workshop involving DLB care partners and an online questionnaire to gather information.

Care partners found the following DLB symptoms challenging, listed by order of challenge:
  1. Hallucinations
  2. Sleep disturbances
  3. Lack of interest or motivation
  4. Continence
  5. Problems with thinking and concentration
  6. Mood changes (including irritability and aggression)
  7. Anxiety
  8. Movement difficulties
  9. Loss of appetite and swallowing problems
  10. periods of excitement
Challenges relating to caring for someone with DLB, by order of those considered most challenging were:
  1. Caregiver stress
  2. Caregiver anxiety
  3. Caregiver low mood
  4. Feeling burdened as a caregiver
  5. Impact of person with DLB behavior on caregiver
  6. Caregiver's quality of life
  7. Caregiver social isolation
  8. Availability of respite care
  9. Healthcare costs
  10. Feeling able to meet the demands of being a caregiver
How do you see yourself in these results? Do you agree? Do you see some areas more or less difficult for you?

Re the VOICE's goals:
  • The above lists are a good representation of the needs and challenges of DLB care partners. Carers recognized "meeting the demands of being a DLB care partner" as a priority but did not identified as a major challenge. However, caregiver stress and anxiety were both seen as a major challenges.
  • They found a huge gap between those needs and the present research. Hallucinations were the most challenging symptoms identified by care partners, but treating this symptom is under-represented in clinical trials. In fact, clinical trials are mainly focused on "curing" DLB or treating the associated cognitive symptoms. (comment: We definitely do need more research on those non-cognitive symptoms, but finding a cure has high value for the future and I'd hate to see it sidelined.)
  • They found emerging opportunities for more research on treatment methods for the most challenging symptoms associated with DLB such as hallucinations but no "new developments" were noted.
About The Imagine Series: It is a collaboration between VOICE (Valuing Our Intellectual Capital and Experience) and the UK's National Institute for Health Research (NIHR) Innovation Observatory. The Innovation Observatory identifies, monitors and collates evidence around new and emerging health technologies worldwide. VOICE, is the arm of the Observatory that interacts with the public to find unmet needs and opportunities for better ageing and health research. The VOICE director, Lynn Corner, was the Imagine Series presenter at the International LBD Conference. 

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 Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff 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.

Friday, October 25, 2019

LBDA Research Centers of Excellence

One of the most exciting things we learned at the 2019 LBD Conference was that the LBDA has started a program called Research Centers of Excellence (RCOEs). We see this as a huge step towards providing care partners, their loved ones and their health care teams the service and information that Jim had in mind when he and four other LBD caregiver founded the LBDA in 2003.

When Jim and When Jim and I married two years later, the LBDA was still a totally volunteer organization, with headquarters in our home, a post office box in a college town a few miles away, a small website managed by Jim-- and so many boxes of brochures that they served as a base for the bed in our spare room.

Since then it has blossomed into a national organization with 14 full time staff in Atlanta GA, over a hundred support groups, a huge information-filled website and volunteers throughout the nation. It was then and is still dedicated to
  • raising awareness of LBD
  • advancing the diagnosis of LBD
  • promoting scientific advances
  • supporting people with LBD, their families and caregivers
The LBDA's present mission statement reflects all of that: "Through outreach, education and research, we support those afflicted by Lewy body dementias."

However, some not fully resolved issues are still present. One that we hear care partners ask about regularly is "How do we find a Lewy-savvy doctor?" The answer to that isn't always easy: "Ask other members in your support group." has been one of the best, but if you don't have a support group, then what?

Another issue is the need for more research. Although the government has alloted much more money to research for dementias besides Alzheimer's, too many clinical trials fail, not because they didn't pan out, because not enough  subjects are willing to volunteer.

A third issues remains the need for better and more information. We still hear many care partners who struggle to learn more about this baffling disease. Even when they find a Lewy-savvy doctor, they may not find the educational support they need, because doctors tend to focus on the disease rather than the patient or the family.

The LBDA's Research Centers of Excellence (RCOEs) address all of these issues. The people who established the RCOEs had two goals:
  • establish a trial-ready network.
  • increase access to high quality clinical care over the course of LBD.
As the RCOEs were developed, a third goal was added, thus meeting all three goals in LBDA's original mission statement:
  • to offer caregiver and community support and education.
RCOEs address both the future, via their research module, and the present, via their clinical treatment module and their community support module. Promoting research, accurate diagnoses and supporting those living with LBD all take equal billing. It all works together.

While Alzheimer's research has grown in recent years, funding for research for other dementias has only now begun to be available. This is very positive, but a major problem remains. Many clinical trials fail, not because the theory proved wrong, but because of a lack of subjects willing to volunteer. Now, with funds available for more LBD research, the need for willing subjects is greater than ever. By offering high quality--and knowledgeable--clinical care, RCOEs develop a pool of patients from which to draw subjects for these clinical trials. 

The RCOEs answer the issue of finding not only a Lewy-savvy doctor, but a whole Lewy-savvy team. You can go to any of the 33 and growing RCOEs in the nation and expect to find Lewy-savvy doctors and staff. That's because to be an RCOE, a clinic must provide ongoing training for their professional staff to keep them up-to-date. There is also a RCOE goal to define standards of care for management throughout the course of the disorder. This means that you will likely get the same good care in any RCOE and that eventually, these standards will spread throughout the medical community.

 As for caregiver and community support, The LBDA has done a great job sponsoring support groups and providing education. However, there are still gaps, still a need for more support and better information. To qualify for RCOE status, a clinic must sponsor a LBD caregiver support group and offer regular community education about LBD. If there is a RCOE in your area, you can count on finding a support group as well as classes to help you and others in your community learn more about how to deal with this often baffling disorder. Be sure to take advantage of these educational offerings.

Thus a RCOE offers Lewy-savvy doctors with ongoing training that can educate not only these doctors but all health care professionals in the community who are interested. It offers ongoing support for patients and their care partners. And finally, it is a source of education for the whole community. To find out if there is one close to you, click here.

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
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

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.