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

Friday, November 27, 2020

Our Latest Book is Out!


Thanksgiving is over and Christmas is coming soon. We have the perfect gift for your helpers and family members who want to know more about LBD. 

A Caregiver’s Guide to Lewy Body Dementia, first published in 2010, has been called the LBD caregiver’s Bible, or Go-To-Book for years. And now there’s a 2nd Edition, with the newest facts as well as more information. For example, we’ve learned more about non-drug management of behaviors since the first book was written and this edition shows that. One of the complaints about the first edition was that the resource section was lacking. The resource section in this one is robust! Readers of our other books will recognize our easy-to-read but informative style using personal stories to illustrate well-researched facts.

Springer, our publisher, is offering our readers a great introductory deal, good only for two weeks, starting today. Go to the Springer website and use the code  WHITWORTH20 for a 20% discount and free shipping in the continental US. There's no limit on the number of orders you can do. Therefore, in addition to the book or books your order for yourself, you can make separate orders and have Springer send books directly to distant relatives or friends. A great way to cross off some of the people on your Christmas list!

The book sells for full price on Amazon, with free shipping only if you are an Amazon Prime member. Be sure to check that you aren't buying from a 3rd person seller. The first edition is out there all over and if you get it instead of the 2nd, you may be stuck with it. Amazon is also offering a digital version but it costs almost as much as the paperback! I wouldn't bother unless you especially love digital books!

We found a few other places online that offer the book, but we'd recommend staying with Springer or Amazon where you have a better idea of what you are getting.

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 20, 2020

Next Thursday is Thanksgiving. It won’t seem like it for us…and for many of you, I’m sure, because we won’t be having any big family get-togethers.

But we still have so much to be thankful for:

Our heath. As most seniors, we have our issues, but for the most part, we are doing very well. And in Arizona, we have good health care. We’ve learned to use telehealth and email for some of our doctor visits and I suspect that won’t change when things get back to “normal.”

Our home. We are so grateful to have a comfortable home in which to ‘”shelter in place.” We have stopped traveling to the PNW in the summer and so we appreciate our home even more now.

Our family: We don’t get to see them as often, especially now that we don’t travel, but we know they are there and they keep in touch with us.

Our finances: We aren’t rich but as retired seniors, we haven’t lost our jobs and we can pay our bills.

Our friends: We feel so fortunate to live in a small community where we can gather with a few friends albeit, at an acceptable distance, but still face to face (or mask to mask!).

Our readers: Of this blog, our website and especially our books. You keep us active and involved!

What is on your list? It is likely different from ours but similar too. We hope you are taking care of yourselves, getting the help and respite you need and staying in contact with family and friends, digitally if not in person.

We have one last thing for which we are thankful:

Our most recent book has just been published: A Caregivers Guide to Lewy Body Dementia, 2nd Edition. Next week’s blog will be all about it and the special offer that our publisher is offering just in time for Christmas presents.

For 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.

Monday, November 16, 2020

Area Agency on Aging: Your Go-to for Resources

We talk a lot about how caregiving can be tiring and overwhelming. But it can also be expensive. We recently received a flier warning us that the Arizona state home improvement grant for caregivers ends after 2020. This reminded me that, with life in even a good care facility so isolating during this difficult time, many of you are likely looking for ways to keep your loved one home. 

If you don’t live in Arizona, you can check with your local Area Agency on Aging to see if something similar is available in your state. Also check to see if there are any Covid-related funds for caregivers. In fact, make your local Area Agency on Aging your go-to resource center for senior care. Visit the national Area Agency on Aging (AAA) website to find out where to go in your community and for lots of other valuable information. 

 The AAA article, Free and Discounted Services for Seniors and Their Caregivers is a great resource all by itself, offering sources and a small amount of information for each service. Do go to the article, but for now, here are many of the sources: 
  • Benefit Counseling.This what I mentioned earlier. The AAA is your starting point whenever you want to get answers about benefits for seniors. Call your local office or  visit  BenefitsCheckUp.org. to search for local, state and federal benefit programs.
  • Adult Day Care: Get lists of local centers at your local AAA or go online and use their Adult Day Care Directory. When inquiring about Day Care services, provide as much information about your ability to pay and your loved one’s capabilities as you can to get the best match for your situation.
  • Medicaid-Covered Dental Care: Contact your state’s department of health or visit the American Dental Association’s Find-A-Dentist web site.
  • Free Dentures: Contact your state’s dental association and any nearby dental colleges. Also contact AAA to see if they have any other suggestions.
  • Pharmaceutical Assistance Programs: Go to State Pharmaceutical Assistance Programs to find out if you live in a state that offers help with Pharms and if so, what kind.
  •  Prescription Drug Discounts: Use the Medicine Assistance Tool to find discounts from pharm companies.
  • National Family Caregiver Support Program: The NFCSP provides funding to states for the support of informal caregivers.
  • Discounted Phone or Internet Services: Visit LifelineSupport.org to see if you qualify for support and if there are any participating companies in your area. Some companies such as Comcast and Cox ma offer their own as well.
  • Retail Store Discounts: Visit Retail Store Discounts to find out about stores that offer regular discounts to seniors. Also ask staff at your regular store about extra discounts.
  •  Free Phone for Hearing Impaired Individuals:  CaptionCall provides free captioned telephones to those with hearing loss. For iPhone and iPad owners, there is also a free app.
  • Supplemental Nutritional Assistance: Managed by states. visit the USDA SNAP website for a list of national and state websites.
  • Other Free Food Services: Check with local AAA about local food banks, meal programs. Also visit FeedingAmerica.org.
  • Free Hearing Aids: Local Lions Club. Contact manufacturers about clinical trials on new aids.
  • Free Legal Help: Legal Services Corporation, AAA, local law schools, local and state bar associations, local senior centers. Veterans: Google legal help for veterans for a list of related websites.
  •  Medical Alert Systems: AARP members, veterans, and seniors with certain insurance carriers may be able to enjoy discounts on medical alert systems from certain providers. Some states may also have grants. Do read the AAA article before choosing a system.
  • Discounted Mobility Aids: Look for used items in thrift stores. Some non-profit organizations have them to lend. Also ask hospitals and nursing homes about used equipment. Ask your local AAA about local sources.
  • Low Income Home Energy Assistance Program: The LIHEAP provides energy bill assistance to low-income owners and renters. The Weatherization Assistance Program (WAP) can help with installation or repair of HVAC systems, and seal doors and windows. 
  • Long-Term Care Ombudsman Services: Contact your state ombudsman if you feel your loved one is being neglected, abused or exploited in a LTC facility. Contact information should be prominently displayed in the facility or you can find it on the National Consumer Voice for Quality Long-Term Care website.
  • Residential Repair Services: Check to see if your local AAA runs a repair service for minor upgrades and aging-in-place adaptions. You pay for supplies but labor is volunteered. Also ask about state grants like the one mentioned at the first of this blog.

Next week is Thanksgiving and we are taking the week off. Everyone enjoy a safe and happy holiday. The next blog, on December 4th, will be about more web resources for care partners.

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 13, 2020

LEADER Principles: Hallucinations

This fourth in the LEADER Principles of Interaction series is about hallucinations. Hallucination are often the among the least stressful LBD-related behaviors--at least for your loved one. Mary and Frank are back to share their experiences using the LEADER Principles.

Frank started hallucinating well before he had other LBD symptoms. I would just kindly tell him, “Yes, I know you see them, I can’t. They aren’t real—they’re a symptom of your Parkinson’s.” He’d nod and that would be the end of it. Of course, sometimes, he liked to share his “visions” with me because, he said, they were so entertaining. We’d laugh but we both knew that what he was wasn’t real. But that has changed. He doesn’t believe me when I tell him I can’t see what he sees so clearly. – Mary

Learn and Lead

Learn: Lewy bodies that start in a person’s movement control center cause Parkinson’s but in time, these damaged proteins tend to migrate to other areas of the brain. When they migrated to Frank’s visual perception center, he:

  • Experienced hallucinations--seeing things that aren’t really there but his thinking abilities were not affected
  • Could accept feedback and make judgements about the reality of what he sees.

When Lewy bodies spread into the cognitive areas of Frank’s brain,

  • His thinking fade, leaving only basic thinking skills
  • He can now only accept what his brain receives first, the hallucination, as real.
  • This may also be combined with an emotion and a prefabbed story, a delusion.

These hallucinations may be less stressful for Frank than Mary, who sees them as a step towards dementia. However, by monitoring and changing her behavior, she can lead Frank—and herself—to a more comfortable place for both of them.

Emotions and Empathy. Most hallucinations are benign, that is they don’t trigger strong emotions. The problem often lies with the care partner:

  • If Mary feels distressed, her distress will be picked up by Frank as negativity and mirrored as behavior fired by negative emotions
  • If Mary tries to do as she’s done in the past and explain away the hallucinations, Frank will feel insulted and will express this with behavior fired by his negative emotions.

Mary can change this by:

  • Being careful not to express negative feelings in Frank’s presence
  • Empathizing with Frank and thinking of how she’d feel if she firmly believed something but wasn’t given credit for that belief.

Acceptance and Alliance. For her own peace of mind, Mary must

  • accept that Frank can no longer accept her explanations. (This makes the empathy possible!)
  • Agree with what he sees. Mary doesn’t have to BELIEVE, she just needs to play along, as she might at a child’s tea party.
  • Let it be unless the hallucination is unsettling to Frank. She might just nod when Frank tells her Aunt Jane is napping on the sofa, for example. She doesn’t have to try to wake Aunt Jane up or have a conversation with her.
  • Join Frank’s reality if necessary, to deal with a stressful hallucination.

Deflect and Do. If the hallucination is stressful to Frank:

  • Mary’s acceptance of what he is experiencing as real will likely deflect much of Frank’s stress. He isn’t having to convince her it is real and he has her support.
  • Mary can now do something within Frank’s reality to make the hallucination go away. For example, Mary might tell the “bothersome kids” it’s time to go home now and physically usher them out the door.

Entertainment and Enthusiasm. As with any other unwanted behavior, distraction will help Frank to move further away from the experience so that it isn’t retriggered. Distractions need to be:

  • Something that Frank enjoys.
  • Presented with a positive and enthusiastic attitude that Frank can mirror.

Residual Emotions and Response. These may not be as big an issue with benign hallucinations as they are with other behavior. With unsettling hallucinations, including those Mary doesn’t accept as Frank’s reality:

  • emotions generated by the event will be remembered even when the event isn’t. These residual emotions will then be triggered by a new event.
  • The quicker Mary can accept Frank’s hallucinations as his reality and deflect any unsettling emotions, the weaker the residual emotions will be when they appear again.
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 6, 2020

LEADER Principles: Delsuions, Accusations and Anger

This blog, which addresses accusations and extreme anger, continues to follow Mary as she learns to use the LEADER Principles of Interaction to deal with Frank’s dementia-related behaviors. If you haven’t read at least the first blog in this series, an overview of what LEADER stands for, it is a good idea to do so now.

Frank has always trusted me but now he had become very suspicious. He accuses me of wanting to run off to have an affair with the grocery clerk when we go shopping. He thinks the handyman we got to clean our gutters is just hanging around to get close to me when Frank is napping. And so on. When I try to defend myself, he gets very angry. In fact, anger seems to be very close to the surface for him with just about anything. -- Mary

Using the LEADER Principles:

Learn and Lead: Here is some information that Mary needs to know so that she can lead Frank away from his angry delusions of infidelity. 

  • Frank’s brain is losing the ability to do complex (abstract) thinking tasks such as comparing, judging or prioritizing. He also can’t do concepts like time or distance.
  • Frank’s illness makes him feel insecure, dependent and fearful of being left alone.
  • When an event triggers a residual emotion such as that fear, the brain automatically provides a story, a prefabbed reason for the emotion. Normally, the next step is to use complex thinking to accept or reject this story.
  • Without the ability to think complexly, Frank must accept this prefabbed story, this delusion, as is, as his only TRUTH. He can’t change it.
  • Without complex thinking, Frank’s thinking is “all or nothing,” “is or isn’t.” Likewise, his emotions tend to be either unnoticed or extreme.
  • Negative emotions are designed to be alarms, calls to action. They continue to blare until addressed. (See last week’s blog)

Emotions and Empathy. By empathizing with Frank, Mary

  • Identifies his underlying emotions and accompanying theme and
  • Relates with his fear of abandonment, his fear that she will leave him 
  • Recognizes that without the concept of time, “will leave” means “leaving now.” 

Acceptance and Alliance. Mary:

  • Quickly accepts the responsibility for his anger. “Oh, honey. You must feel awful. I’m so sorry.”
  • Uses words and tones that show affection and caring, even in the face of Frank’s anger, to emphasize that she is with him and not against him.

Deflect and Do. An apology can work wonders to deflect anger! Mary's apology:

  • Shows that she accepts Frank's complaint as real
  • Decreases his negative feelings. (See previous blog on the magic of apologies.)
  • Satisfies Frank's need for action

Entertainment and Enthusiasm. As soon as Frank’s anger decreases, Mary can enthusiastically suggest a distraction—something that will entertain Frank and refocus Frank’s attention away from his negative emotions.

Residual Emotions and Response. Frank will likely forget the incident with the handyman, but his fears remain and can be triggered again and again. The quicker Mary can respond with an apology and then a distraction, the weaker those fears will be.

Next week’s blog will be about dealing with hallucinations.

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, October 30, 2020

LEADER Principles: Obsession

Last week’s blog introduced our LEADER Principles of Interaction, a guide to relating with your loved ones in ways that decrease rather than increase dementia-related behaviors. This next series of blogs will focus on using these principles to deal with  specific behavioral issues. One of the behaviors that seems to be showing up a lot is obsessions. An obsession is getting so stuck on an idea that you can’t move on. Obsession is often a coping method for dealing with discomfort. With Covid making so many changes in our lives, it not surprising that care partners are seeing more of this.

Frank has been obsessing about a bill that he’s sure hasn’t been paid. Mary has tried to tell him it has been paid, but he is stuck in his belief.

Let’s use the LEADER Principles to address Mary’s concerns:

Learn and Lead.

First Mary must learn how Frank’s dementia damaged brain functions.

  • Once a thought is in Frank’s brain, it is his unchangeable TRUTH.
  • Frank’s TRUTH comes packaged with a negative emotion (worry) that demands action.
  • Frank’s brain can only process in the here and now, and so he needs this action to be immediate.
  • Frank’s brain can’t do concepts, and so the action also needs to be physical, something he can experience.
  • Frank can't change but he can follow.

Next, Mary can lead by choosing a way of interacting with Frank that:

  • deflects his controlling emotions and
  • leads with suggestions and invitations

Emotions and Empathy.

Frank’s emotions rule. The stronger the emotion, the more demanding it is. When Mary tried to explain, frustration and other negative emotions:

  • Joined his original worry and made his emotions even stronger stronger
  • Blocked his ability to hear anything that didn’t support his TRUTH
  • Pushed him to increase his efforts to get action.

Mary can use empathy to help her:

  • See the issue from Frank’s view—the only one that counts
  • Understand his concern that the bill is UNPAID.

Acceptance and Alliance. Acceptance does not mean belief but it does mean understanding that this is Frank’s only TRUTH. In the past, both Frank and Mary felt unheard, frustrated and alone. When Mary accepts that the unpaid bill is a serious issue that needs to be addressed and offers work with Frank to find a solution:

  • Frank feels supported
  • His defenses lower and
  • He can pay attention to Mary’s words.

Deflect and Do. Positive feelings of support and alliance deflect negative emotions and begins the process of refocusing. Then, doing something physical must follow to satisfy any remaining emotional demands for action. Here are some suggestions. Can you think of others?

  • Mary can help Frank pay the bill by writing out a check and putting it in an envelope that she sets “to be mailed.” Then this can be tossed when he isn’t looking. (See blog about the value of therapeutic fibs.)
  • Mary can help Frank discover that the account is up to date. She might shout, “Hey, come and check out this invoice that I found.” Then when he does, she can ask, “What is the date? Is it for after the bill was due? What’s our balance? Hey, is it positive?” (By using invitations and questions, Mary leads Frank into the physical action of looking at the invoice and discovering for himself what the invoice says.)

Enthusiasm and Entertainment. Dementia shortens a person’s attention span. This makes distractions good tools for refocusing attention towards something that won’t trigger lingering negative feelings. Effective distractions should be something entertaining presented with enthusiasm.

Mary’s upbeat attitude:

  • gives Frank a model he can copy
  • helps him generate a healthy excitement that keeps his negative emotions at bay
  • allows him to use his damaged thinking abilities the best he can.

Then the distraction Mary offers gives Frank a new focus. The more entertaining it is the better he will be able to focus on it and let go of any lingering worries about that bill.

  • Ice cream or anything sweet usually works well.
  • So might watching a favorite TV show.
  • Can you think of others that work with your loved one?

Residual emotions and Response. Sadly, this isn’t the end of the story. Unlike memories of events, the emotions attached to the events are not erased by dementia. They last, ready to be triggered by a new event, or even a word and re-experienced. The stronger the emotion, the longer they last.

  • Frank is very likely to become obsessed about the bill again and Mary will have to go through the same LEADER process again—and again.
  • Mary’s goal must be to respond quickly so that Frank’s negative emotions get weaker, not stronger. Not only will he be easier to lead away from his obsession this time, but the emotions that trigger the obsession won’t be as strong next time.

The next blog will be about dealing with accusations and irrational anger, which often go together. You may notice a lot of similarity between this blog and the next ones. That’s good. That means that you can then generalize the LEADER Principles to other behaviors.

For more information about Lewy body disorders, read our books:

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 23, 2020

The LEADER Principles of Interaction

This week’s blog is the start of a new series about what we call the LEADER Principles. This first blog explains these Principles as general guides for dealing with dementia-related behaviors using the “magic” tools outlined in previous blogs. If you haven’t read those blogs, do go back and do so now. These tools, based on different rules than most of us have followed in the past, may not be easy to accept at first. But give them a try; they truly can be magic in helping you interact effectively with your loved one.

My husband, Frank, was diagnosed with LBD a year ago. He had some problems but we were doing all right until Covid came along and changed so many of our routines. Frank hates change and can’t understand why we must stay in the car when we go out for ice cream or why everyone we see is wearing masks. I think this all frightens him. His delusions are worse and he’s angry a lot more. I’ve tried explaining; it just makes him impatient. I try not to respond to his anger with my own but that’s hard sometimes too. And when I try to defend myself, that really sets him off! I’m at my wit’s end. -- Mary

The way Mary responded successfully to Frank for years no longer work with his dementia-damaged brain. She needs new responses, new tools. Instead of reacting to his behavior with old words and actions, she must consciously choose different responses—use different tools. Our LEADER Principles provide a structure for use of these tools.

LEADER stands for:

Learn and Lead
Emotions and Empathy
Acceptance and Alliance
Deflect and Distract
Entertainment and Enthusiasm
Residual emotions and Rapid response

These responses may not feel very comfortable at first but she can adapt. Frank can’t. He simply reacts, communicating his discomfort, pain and fear behaviorally. With Covid messing with their routines, there’s likely plenty of that already. To keep from causing more, Mary must first learn ow dementia, and especially LBD, damages a person’s ability to think abstractly.

Learn and Lead

Learn: To make effective conscious choices, Mary needs to learn how dementia has changed the way Frank’s brain works. Our book, Responsive Dementia Care (see link below) is a good reference. However, she--and you!--can start right here. Frank is losing his complex thinking skills, his ability to multitask, compare, judge, generalize, compare or use concepts like distance and time. His remaining thinking skills function with these rules:

  • One thing at a time. Frank can no longer gather more information, compare, judge or prioritize.
  • One TRUTH. What Frank’s brain first receives is his reality, his TRUTH and can’t be changed.
  • Here and now. Frank has difficulty mentally putting himself in another place. He also can’t refer back to the past or plan for the future.

Lead: Frank can’t choose his behavior; he just reacts. However, he can follow. Therefore, MARY must:

  • Respond in ways that calm rather than irritate Frank
  • Deflect Frank’s blocking emotions
  • Lead by suggestion, invitation and example.

Emotions and Empathy

Emotions. On its way to the brain, each packet of information picks up an emotion, often negative. Negative emotions are the body’s natural alarm system, blaring out a demand action. A person with complex thinking can choose to act now, plan for later action or dismiss the demand as a false alarm. With only basic thinking skills, Frank can only act.

Empathy. When Mary identifies Franks emotions and empathizes with him, she sees the situation from his view—she sees his TRUTH and understands his need for a solution that will quiet his "alarm."

Acceptance and Alliance

Acceptance: Accepting Frank’s TRUTH doesn’t mean that Mary believes it; it simply means that she knows that this TRUTH is all there is for him.

Alliance. When Mary joins Frank’s reality, she becomes his ally instead of his adversary and his negative emotions stop blocking her out.

Deflection and Do.

Deflection. As a team member in Frank’s reality, Mary can deflect (decrease) his negative emotions by agreeing that he has a problem. 

Do. Frank's emotions may be less demanding but they aren't going to quit alarming until he has acted on them. Once Mary has Frank's attention, she can offer to help him find an action acceptable to both of them.

Entertainment and Enthusiasm:

Entertainment.  Once Frank has acted, Mary can help him forget his alarming demands by using something he enjoys to refocus his one-track mind. The most effective distraction is different for each individual, but the more entertaining it is, the better it will work.

Enthusiasm. It also helps for Mary to model eagerness with an upbeat, positive attitude. 

Residual Emotions and Response

Residual emotions. Emotions, unlike events, are not forgotten. Frank may forget about the event that triggered his negativity, but the emotional memory is still there in the background. Depending on its strength, Frank can feel it again and again, as new events trigger it into action.

Response. A rapid response to Frank’s behavior is important. As his frustration builds, so does the strength of his emotions. The sooner Mary can align herself with Frank’s worldview, the weaker these emotions will be. The weaker they are, the easier it will be to deflect them—and the weaker they will be as residual emotions.

The next blogs will take these general principles and apply them to behaviors like obsessions, irrational accusations and hallucinations.

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.