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

Friday, December 18, 2020

Forgiveness

This week I've invited Pat Snyder talk to us about forgiveness. This is a great subject to discuss right now when we are both so distant from so many of our loved one and so crowded up together with those with whom we live day in and day out. With this added stress, anger, blame and other negative emotions get closer to the surface. But expressing them hurts you a lot more than it does the person you are mad at. Let them go! Yes, I know, easy to say! But Pat makes it quite doable.

Here is her 11.5 minute video: Forgiveness 

Take what she tells you and use it! You will feel a lot better, I'm sure. I know I do when I let go and forgive.

We are taking a holiday break and so my next blog won't be until January 8, 2021. Merry Christmas and a Welcome New Year! 

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, December 11, 2020

How Serious is Covid-19?

This isn’t an LBD related issue, but in a way it is. We are all likely either at risk or closely connected to someone who is at risk for Covid-19. Just how serious is it? I thought you might like to see what I found out about some myths I’ve been hearing about Covid-19.

Myth: Repeated testing inflates the numbers. Truth: Each person has an ID and is counted only once no matter how many tests they take. (This is one I did wonder about, what with so many people getting tested and retested regularly.)

Myth: Only seniors are at risk. Truth: The 50,000 Covid deaths of people under 65 is 18.5% of the total number of 270,000 deaths!

  • Covid-19 has surpassed opioid overdoses as leading cause of death for ages 25-44. (This one surprised me!)
  • Anyone with an underlying health condition such as obesity, heart disease, cancer or diabetes is also at risk. (This group makes up 40% of our population. I'm in it. Are you?)
  • Asymptomatic younger people can pass the virus on to those who are at risk. (Like my daughter who lives with 2 ninety year-olds. Or many of you who live with, or want to visit, a loved one with LBD.)
Myth: Hospitals inflate Covid death numbers to get more money. Truth: Hospitals may receive money for Covid deaths, but doctors don’t and they are the ones that do the certifying. (Yes, hospitals get money but the cost per patient is more than they receive and so the hospitals really want this to go away! In addition, they only have limited staff. Here in Arizona, that is becoming a major issue.)

Myth: The 270,000 Covid deaths is very small compared to the total US population. Truth: True, something like .03%. But compared to other death tolls, it is one of the worst.

  • Wars:
    • Vietnam War: 58,000
    • Korean War: 37,000
    • World War II: 405,000
    • World War I: 116,000
    • Civil War: 600,000 to 850,000
  • Pandemics:
    • 2009 H1N1: 12,469
    • 1968 flu: 100,000
    • 1957-58 flu: 116,000
    • 1918 flu: 675,000
    • Covid-19 to date: 270,000 with 450,000 predicted

Myth: The virus is going to do what it is going to do. Protect the vulnerable and let everyone else get on with their lives. Truth: The “vulnerable” are all around us, but there is a lot we can do to stop the spread.

  • Since about 40% of Americans are in the at-risk group, even those who are not at risk are probably in close contact with someone who is.
  • We know that it is a respiratory disease that mainly infects via breathing, thus masks and social distancing provide protection.
And so, bottom line, stay home as much as possible, wear your mask and do social distancing when you go out. Use the computer and phone to keep in contact with your loved ones! And lets all pray that a vaccine comes quickly and works well!

References: Nicole Carroll, Why Do People Deny the Seriousness of Covid-19? USA TODAY, with number updates from the John Hopkins University. Friday, December 4, 2020,

 Gillian Brockell, 250,000 Lives Lost: How the Pandemic Compares to Other Deadly Events in U.S. History. The Washington Post, November 19, 2020.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia, Ed. 2
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, December 4, 2020

A Manual For Staff

Last week's blog was about our latest book, A Caregiver's Guide to Lewy Body Dementia, 2nd Ed. This week, I want to tell you a little about another book we worked on last year, Lewy Body Dementia: A Manual for Staff. 


It has much of the same up-to-date information in it as the new Guide, but it is written for your helpers and for facility care staff. It makes a wonderful gift for anyone who is helping you care for your loved one. You can find in on Amazon in print or eBook.  You can also buy it as a part of a set on our LBDtools.com website.

When you get the set, you also get a copy of our new Guide, and a copy of Responsive Dementia Care, which focuses on dealing with these frustrating behaviors. If you buy the Quad set, this includes the book that focuses more on early symptoms, Dealing with Cognitive Issues of Parkinson's & Lewy Body Dementia. While the information in these books overlap at times, each focuses on separate issues and all are helpful.

Of course, there are many other helpful books available besides those we've written. In January, we'll review several of them 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
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 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.

Friday, October 16, 2020

Magic Tools 5: Distraction

Once I accepted Frank’s view of things and did what I called to myself “playing his game,” life became a lot easier. I’ve even learned to apologize like I mean it! He calms down and then I can usually get him to forget all about being upset by offering to do something fun with him like looking at old photos. Mary

If you haven’t read the earlier blogs in this series, go do that now. They will explain how dementia damages the brain and why Mary’s “playing Frank’s game” works. This is the final blog in the magic tools series and is likely the one you know best, distraction. The magic of distraction is that it refocuses your loved one’s attention away from whatever was causing the unwanted behavior—and makes both of you feel much better.

Distraction works because dementia:
  • Limits a person’s attention span.
  • Decreases their ability to consider more than one thing at a time.
  • Promotes following by impairing the ability to initiate action.
Thus, once you can get your loved one’s attention focused on you instead of their problem behavior, it can be fairly easy to make a suggestion that will draw their attention further away from the situation causing the behavior.

Distractions won’t work if:
  • You don’t have your loved one’s attention. You can’t compete with the attention that strong negative emotions demand.
  • The situation isn’t physically resolved. This must happen for those negative emotions to stop blaring and demanding action.
  • Your loved one isn't interested in your choice of distraction.
What’s a good distraction? It will work best if:
  • You are enthusiastic about it too. Your loved one is a follower and so if you want to do it, it will be easier to convince them to do it too.
  • It is attractive to your loved one, and is something they enjoy. This will vary with each person.
  • It is sweet. Dementia damages the ability to taste but the sweet taste buds are the last to be affected. Ice cream is usually a good bet...sweet, with a cold kick as well.
  • It has some physical aspect, since your loved one functions better physically than they do mentally.
  • It moves your loved one physically from the location where the behavior was occurring, thus eliminating visual triggers for a recurrence of the behavior. Start you offer with "Let's go....(somewhere else!)"
  • It is positive. Make it a happy event or you are likely to re-invite the negative behavior.
OK, we’ve talked about some “magic” tools. Now let’s put them to work! The next series of blogs are about the LEADER Principles of Interaction, guides for using these tools with a variety of dementia-related 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 9, 2020

Magic Tools 4: A Sincere Apology

Apologizing to your irate loved one for something you didn't do may be the last thing you want to do. But it is magic! To understand how it works, you must see the interaction from their reality. When your loved one feels wronged and voices an accusation, they need to have their concern recognized and validated. Only then do their negative feeling stop blaring. (See the second blog in this series, The Magic of Empathy, to learn more about the importance of paying attention to your loved one’s emotions.)

This often means apologizing for something you didn’t do. However, the issue isn’t about what you did. It is about what your loved one BELIEVES you did—and this is something neither he nor you can change. But you can change your response. Our book, Responsive Dementia Care, explains it this way:
The last time Gerry accused me of infidelity, I just told him I was sorry. I was amazed. Once I'd accepted his way of seeing things, he calmed right down. Then, when I suggested we go have lunch, he was happy to go. - Olivia

Olivia’s apology defused the situation. Gerry felt heard and was able to let go of his painful negative feelings and relax so that Olivia was then able to use his short attention span to deflect his attention onto something more pleasant.
Don’t wait to apologize. Do it quickly. The longer you resist, the stronger your loved one’s emotions become and the harder it will be to deflect them.

When you apologize, be sincere even if you didn't do anything wrong. Without sincerity, your apology may not work. You can justify to yourself an "I'm sorry" statement about something you didn't do by:
  • Thinking about how sorry you are that your loved one is having to experience this unhappy experience, even though it is not your reality.
  • Considering yourself an improv actor in their drama.
  • Accepting apologizing as a tool that can quickly defuse negative feelings and replace them with positive feelings like validation and acceptance.
Don't worry that your apology will cause your loved one to believe even more firmly in their accusation. The opposite is actually true. Since emotion, not fact, is the driving force for your loved one’s behavior, your resistance increases your loved one’s negative feelings and strengthens their belief. Your apology deflects those emotions and replaces them with positive feelings of being heard, understood and valued. It also weakens their emotional memory of the event—and thus, the strength of these residual emotions when attached to upcoming events.

Next week, the blog will be the first in a series on what we call the LEADER Principles. This are a guide to help care partners deal with dementia-related behaviors.

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 2, 2020

Magic Tools 3: Empathy

Last week, we started a series of blogs about the magic of using the right tools with LBD. If you haven’t read last week’s blog, do go back and read it. It lists some of the most important ways that dementia changes your loved one’s brain. Doing your homework and learning about these changes is a requirement if you are going to use these tools well. Last week’s blog also emphasized that the way you respond can make magic changes in your loved one’s reactions. At first, your response likely isn’t going to be automatic. It needs to be a carefully thought out choice, a conscious choice based on what you’ve learned about the dementia-damaged brain.

This week, we take the next step and talk about how important emotions are. Once dementia sets in, emotions rule. Last week, you learned that your loved one must accept the first information they receive about a situation as their TRUTH. That first information always has an accompanying emotion, and since the brain doesn’t like the unknown, it makes up a story to justify the emotion. This is a normal process—we all do it.
  • Something happens. You see a dog or hear someone talking on the phone or….
  • This information travels to the brain and picks up an emotion along the way. Since negative emotions like fear, worry, frustration or anger are the strongest and most urgent, the chances are that it will be one of these.
  • The brain doesn’t tolerate uncertainty, and so it automatically adds a reason for the emotion.
  • These strong and urgent emotions function as a natural alarm, a call to action that blares until the “reason” is addressed.
  • Then the brain uses complex thinking to evaluate the situation: Is the need for action real or false? If it is real, is it mild or severe? Should I act on it now or can I postpone action until later?
Up to the last step, that’s what we all do. Last week we introduced Frank, who is living with LBD. He can no longer take that last step. His brain doesn't have the ability to evaluate or decide on an action. Instead:
  • He must accept the emotional alarm and the reason for it as real and urgent—his TRUTH.
  • He will continue to feel the negative emotions until he believes that they have been physically addressed. (A mental solution will no longer work… “it was already taken care of” or “I’ll do it later” or even “that’s Jane’s job” just doesn’t compute.)
  • Stuck with this blaring negative emotion that demands action, Frank does his best to address it with behavior that is likely extreme and appears irrational.
Empathy is an essential dementia care partnering tool. That underlying negative emotion driving your loved one’s behavior MUST be addressed. Nothing else will work.
  • Ask yourself what you would feel if you believed as he does? Allow yourself to feel that.
  • And then, go deeper. What else might you feel in his place? For example, yes, you would feel angry if your believed that your spouse was unfaithful. But what else would you feel?
  • There is usually an underlying emotion causing the anger. For example, belief in a spouse’s infidelity is often based on a fear of abandonment.
  • Speak to that emotion, not the words or the actions. This is what you must name and share and deflect. (More about this next week)
The Magic of Self-Awareness. Self-awareness is another tool that focuses on emotion. Although Frank can’t empathize, he is super-sensitive to the emotions of others, and especially his wife, Mary's emotions. He doesn’t see them as hers however. Anything he feels, he owns.

And so if Mary shows up feeling angry at their neighbor, Frank feels her emotion, identifies it correctly as anger and correctly relates it to Mary.

But then, he owns it. That is, Frank’s brain:
  • picks up Mary’s anger as his and, as always,
  • adds a “reason” based on a residual feelings like fear or loss. 
Thus, Frank experiences Mary’s anger at the neighbor as his anger AT HER for something hurtful that he now believes she did to him.

You can avoid passing your negative feelings on to your loved one by being more aware of your own emotions.
  • Routinely check your emotional attitude before you interact with your loved one—or even before you enter a room where your loved one is.
  • What are you feeling? If it is something negative, take a moment to consciously choose something else to focus on.
  • The something else doesn’t have to be super positive, just not negative. (YOU can do this. It isn’t easy, but with practice it gets easier.)
  • When you just can’t stop feeling negative (and no one can all the time!), take feelings into the bathroom or at least, out of the room until you CAN feel more positive.
The next blogs will address other “magical” dementia care partnering tools, including acceptance, apologies and distractions.

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, September 25, 2020

Magic Tools 2: Conscious Choice

Last week we started this series about behavior management with a discussion about checking on a couple of issues that often lead to difficult behavior, your loved one's health and their environment. If you've found no problems there but the behavior is continuing, it is time to look at how you interact with your loved one.

Dementia changes the rules. It changes how your loved one thinks and what they do. For them, what once was simple curiosity can become a wild accusation. What once might have been a pleasant fancy, a wishful thought or an uneventful happening can morph into a totally believed delusion. Unless you change your own behavior, you may find that all too often, once calm discussions become raging arguments.

Frank and I have had a good marriage where we could usually talk out our differences. But then he was diagnosed with LBD a year ago. 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 have gotten worse and he’s angry more too. I’ve tried explaining; it just makes him impatient. I try not to respond to his anger with my own but I don’t always succeed. And when I try to defend myself, that really makes him angry! I’m at my wit’s end. Mary

Like Frank and Mary, most of you have had successful relationships prior to LBD, as couples, parent and child, siblings or friends. You had developed tried and true ways to relate comfortably. When dementia appears, those old ways that once worked so well often fail. For example, Frank and Mary’s ability to talk out their differences depended on being able to recognize and respect each person’s point of view and then make compromises. This requires complex thinking, something LBD has taken from Frank.

New Tools for New Rules. Since dementia changes the rules, Mary needs to learn what has changed and how to deal with the results of those changes. Our book, Responsive Dementia Care explains the thinking skills LBD takes away and those it leaves. Briefly, it takes away the ability to multi-task, generalize, empathize or prioritize. Without these skills,
  • Frank can only react. He can no longer choose between two ideas, change his mind or make judgments.
  • Frank’s brain now accepts the first information about a situation that it receives as an unchangeable fact, his TRUTH.
  • He cannot compute concepts like distance and time. He must function totally in the here and now.
  • Everything is either/or: black or white, is or isn’t, yes or no. There are no maybes, ifs or laters, no distances like near or far, no graduations like a little or a lot. Frank is either very hungry not hungry at all, extremely angry or not angry at all, etc.
The Magic of Conscious Choice. Making a conscious choice to try a different way of responding to your loved one can be magic. Even though Frank can no longer make choices or initiate change, he can follow. Thus, when Mary changes her own behavior, Frank can follow her lead and yes, then he can change too!

Learning how the dementia-damaged brain functions is the first step in this process. Then she can use this information as a guide for choosing a response to Frank. When Mary makes these conscious, thought-out choices instead of reacting automatically, she is much more likely to be successful in leading Frank away from the circumstances driving his behavior.

Next week’s blog will be about emotions and the magic of empathy.

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, September 18, 2020

The Magic of the Right Tools, Pt. 1

Jim monitors several online LBD caregiver support groups. Lately, he’s been reading a lot of entries from distraught care partners who are can’t understand why their old tried and true ways of interacting with their loved one no longer work.

When we talk about tools for managing a loved one’s apparently irrational behavior, we need to start with a couple of things that may not appear to have anything to do with the behavior that is showing up. We call these the checks: checking the health and environment. Our books about LBD (see below) all have chapters that address these issues. But briefly:

Health Checks: Dementia changes the rules. But somethings don’t change, especially concerning health. Your loved one still has the same health issues, except that now dealing with the dementia takes up a lot of the body’s reserves and so their health problems may get worse. Infections are also much more common. All of these can cause your loved one pain and distress.
  • When a person has lost the ability to communicate, which can happen on with LBD, they will use behavior as communication.
  • Even if they can communicate, they may not even be aware of a specific pain—they just feel bad and again, express their pain with behavior.
Before you consider any other reason for your loved one’s behaviors, check their health. Look for bruises, consider a urinary or other infection and check other health issues specific to your loved one. You might be surprised at how fixing one of these can change their behavior--like magic!

Environment Checks: Dementia changes so much that your loved one really needs the stability of an unchanged environment. Familiarity is a friend and change is the foe. In an environment where you loved one feels comfortable and safe, unwanted behavior decreases.
  • Keep your home d├ęcor the same. Even holiday decorations can be an unwelcome change and should be used sparingly.
  • Set up routines and do everything with your loved one the same as much as possible. Routines are magic for helping your loved one to feel in control of their ever-changing life. The more routines in their life, the safer they feel. And the safer they feel, the less behavior you can expect.
Then, if you’ve determined that to the best of your knowledge, the reason for the behavior isn’t health or environment related, it is probably due to YOUR behavior! Yes, yours! But the good news is that unlike your loved one, who can't make changes, YOU can change. You can learn new ways of relating with your loved one. New tools. With these, you can change your behavior and then, lead your loved one into changed behavior of their own.

Next week’s blog will discuss how dementia changes the brain and address why it is necessary to change your behavior if you want your loved one’s to change.

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, September 11, 2020

Caring for the Caregiver During the Pandemic

This article, written by Michele Grigaitis- Reyes DNP, FNP-BC CNRN, FAAN, was borrowed from the Beacon,  a newsletter from Phoenix's Banner Health. We've attended the LBD caregiver support group Michele facilitates there and can attest that she is very familiar with LBD and all its challenges.

Now in addition to you being the primary caregiver to your loved one, your activities are restricted. Your loved one may be seeming to decline as time goes on. You both are likely at high risk for complications if contracting the virus and likely your families and friends are telling you to “wear a mask and stay home”. Something as simple as going to the grocery is fraught with decisions- do you go in the store? Do you take your loved one? You no longer have the ability to access some of those respite activities that were so helpful to you. Even visiting with your family is limited. An already stressful role is now exponentially increased. So, what can you do?
1. Eat a healthy diet. Both you and your loved one will benefit from maintaining a typical diet. On occasion If possible, order takeout from that restaurant you both like, or go for a drive and get lunch from a drive thru
2. Neither you nor your loved one will benefit from adding or increasing alcohol. Limit your intake to no more than you did prior to pandemic. The National Institute of Aging recommends no more than 1 glass daily for women or 2 for men.
3. Get plenty of sleep. Lots of research shows sleep is an under recognized and under-treated problem in caregivers. We know that “role overload” is associated with poor sleep quality, and currently the restrictions of the pandemic would lead most, if not all, caregivers to overload.
  • Stick to a sleep schedule, even on weekends. 
  • Be sure your exercise is 4-5 hours before bedtime. 
  • Keep the bedroom cool, and turn of that television, tablet, or cell phone! The lights associated with these are known to affect sleep. 
  • Be sure to have bright light exposure during the day.
4. Regular exercise is very important. Perhaps you played golf, or pickleball, or went to the Silver Sneakers program. Or, maybe you didn’t really exercise at all. Now may be a good time to start. There are exercises you can do at home. Perhaps you and your loved one could take a walk every morning. You can do simple exercises with items you have at home. You can find a step by step plan, with pictures, at www.nia.nih.gov and type in exercise.
5. Establishing a routine is very important, and now more so both for you and your loved one. Eating meals at the same time and your sleep schedule at the same time nightly. Try to do some exercise 3-5 times a week. Try to include an enjoyable activity each day or week.
6. Take breaks from watching, reading, or listening to the news. Hearing about the pandemic non-stop is stressful for everyone. If television watching must occur, try to find channels that have pleasant or “happy” stories.
7. Use, or learn, relaxation techniques. Yoga, Tai Chi, Mindfulness meditation, and other methods, can do wonders for your stress level. Even taking deep breaths for a minute or two can be helpful. There are a myriad of resources online.
8. Connect with others. Reach out to families and friends. Call on the phone, or perhaps chat with the neighbor over the fence.
9. Connect with support groups. Most groups are being held using some type of technology platform such as Zoom or Skype. These programs allow you to see each other. If you don’t have access to the technology, that’s not a problem either. Most have the option to call in on the telephone. (You can find a list of online LBD support groups at LBDA.org.)

Thank you, Michele. Next week’s blog will be the start of a series about managing dementia-related behaviors.

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, September 4, 2020

Dealing with Dementia During the Pandemic

The pandemic has presented care partners with a whole new batch of concerns.

For those with loved ones in a care facility, the biggest concern is being unable to visit them or be with them during times of stress such as illness, surgery or final days. You may understand the reason for the restrictions. You may know that the staff is doing their best to fill in the gaps. But this doesn’t stop the worry and guilt about deserting a loved one who can’t even understand why. There is no easy or perfect answer to this. What answer there is will usually require working with the staff to find ways to connect, ways like window visits, Zoom visits, phone visits and perhaps even outdoor visits—from a social distance.

Then, once you’ve done all you can to maintain contact, you need to let go of the worry and guilt. Their job was to motivate you to act—and you’ve done that. Worry and guilt that hang around after their job is done are like rotten fish, obnoxious and unhealthy.

Those who are caring for their loved ones at home have questions like these:
  • How do I take care of myself when normal respite options are limited or unavailable?
  • How do I keep myself and my loved one safe?
  • How do I help my loved one, who has a dementia-related fear of change, deal with all the necessary changes?
  • How do I deal with the behavioral changes that often follow these changes?
There are no easy answers to any of these questions. And no single answer for any of them either. As with all dementia-related caregiving, there are many general answers but each must be customized to your own situation.

How do I take care of myself when normal respite options are limited or unavailable? As care partners, we tend to be much more focused on how to care for your loved ones and this question often gets asked last, if at all. But as care partner advocates, Jim and I know that it is often the first question you should address. If you don’t take of yourself, you won’t have the energy, stamina or even the health to you need for the demanding job of caring for your loved one. That’s why next week's blog will be about this very subject.

How do I keep myself and my loved one safe from the virus? Experts tell us that the safest thing to do is to stay home. Use online ordering, deliveries and curbside pickups instead of going shopping or eating out. You can find many more thorough guidelines online, but the basics are that when you do go out:
  • Wear a mask—to protect others. Yes, I know, you are sure you aren’t contagious. However, since there may not be symptoms, you can’t be sure. Wear the mask!
  • Practice social distancing—to protect yourself. Keep at least 6 feet apart from others not in your family group. That’s the distance the virus appears to be able to travel from one person to another.
  • Get tested. Experts say the more people who get tested, the better they can watch and control the spread of the virus.
How do I help my loved one deal with the many changes? Since your loved one may not be able to accept wearing masks, etc., you may find that the best bet is simply to stay home, or to go out by yourself when you need to. Other changes will be difficult  explain too, like why no one comes to visit anymore. In fact, explanations are seldom helpful when reason isn’t an option. Try empathizing and sympathizing instead. If you find a way to agree, do so. And use patience, it is more soothing. Your friend here is time. As the new way of life becomes the norm, it will be less difficult for your loved one as well.

How do I deal with my loved one's increased dementia-related behaviors? Sadly, you may be able to use empathy, sympathy and patience to relieve the pressure some, but your loved one will likely still be confused, uncomfortable and probably scared. These negative feelings lead to an increase of those unwelcome dementia-related behaviors.

Our book, Responsive Dementia Care, has many very practical suggestions for dealing with difficult behaviors like obsession, delusions and irrational anger. Do consider reading it. Past blogs have also already addressed various aspects of this issue too.

A series of blogs reviewing our take on behavior management  will start two weeks from now. The LEAD Principles are a guide for helping you lead your loved one away from behavior-causing themes towards those that calm and comfort. Following blogs will be about using these principles to manage obsessions, delusions and angry accusations, the three Jim has found discussed most in recent care partner groups. However, the Principles can be used with a variety of other behaviors as well.

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, August 21, 2020

The Power of Being Postive

Today’s blog is one of my favorite Pat Snyder videos. Being positive is truly powerful. It doesn't just feel good. It IS good. Research shows being positive makes you not only happier but healthier and more energetic. Since being positive is contagious, so are the people around you--including your loved one.

Being positive is not always easy. As a care partner, you may already feel overwhelmed. And this world is even more overwhelming right now. With each of these negative situations, I've added my own positive response. What is yours?
  • A pandemic is changing and limiting our lives. It can be difficult for care partners to get needed help, for singles living alone in isolation, or for out-of-work people trying to exist without a paycheck. My positive: We are a healthy, active retired couple with interests that keep us from being bored--well, most of the time!
  • Several of our cities are hurting with protests and their accompanying police actions. I have a grandson in Portland. You may also have loved ones involved in one way or another there or in other cities. My positive: I am so proud of my grandson!
  • The media is bombarding us with negative and divisive political ads. I often wonder how much barely skirts the truth, if that. My positive: Although we avoid many ads by taping our shows, I have fun analyzing the ones I have to watch. I look for how they are trying to convince me of their "truth." Yes, that's my psychology background--but it takes me out of the gut reaction they want me to have.
  • Weather conditions have been extreme, with earthquakes and hurricanes and the like. For  us in Arizona, it is record-breaking heat with very little of the usual monsoon rains. My positive: I'm so grateful for our well-functioning air conditioning--and for my new three-wheeler that I ride at 5am when it a little cooler.
Focusing on all or any of these issues can cloud the positives. But they are still there. In her video, Pat tells us how to look for the positives in our lives and use them.

Here's Pat's video.

Notice that Pat doesn’t say that staying positive easy or that it comes naturally. It takes commitment and practice. I think it also takes forgiveness, self-forgiveness, that is, because you won’t always succeed. Don’t stay stuck in your failures but look for the lesson: Ask yourself: What can I do to make it easier to be positive next time? And then, move on.

Pat tells you that being positive is a conscious choice and that the present is the only place where you have control. I’ve taught for years that guilt is mainly a futile effort to manage the past and worry is an equally futile effort to manage the future. When you let go of the guilts around what was and the worries of what might be, being positive right now gets a lot easier.

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, August 7, 2020

Books About LBD Care Partnering

This week’s blog is about the books about LBD care partnering. Pat Snyder offers several in her video. The titles below are links to each of the books she recommends along with a few comments.

Here is Pat's video.

Books that Pat recommended (except for ours):
  • Treasures in the Darkness by Pat Snyder. Pat’s story is a must read, especially for those just starting out on their LBD journey.
  • Facing LBD Together by the LBDA. This free booklet presents the basics and comes with Medical Alert Wallet Card.
  • Dementia Care Partners Workshop by Dr. A good way to learn the basics about dementia care partnering.
  • Keeping Love Alive as Memories Fade by Deborah Barr. Practical suggestions for using aspects of your loved one’s past to help them function better in the present.
  • The 36-Hour Day by Nancy L Mace and Dr. Peter V Rabins. This is the first book Jim read when he started on this journey over 20 years ago. Of course, it has been updated many times since them.
These are the Christian daily devotional or meditation books recommended by Pat. If you want to find something more specific to your own spiritual beliefs check with your spiritual leader, but as Pat says, don't neglect this part of your journey--a healthy spirit makes the other parts of the journey easier.
Pat also recommends two of our books. Links to these books are as always, at the bottom of this blog entry.
  • Managing Cognitive Issues. This book explores the early symptoms and diseases such as Parkinson’s that often progress into LBD and helps you know what to look for and how to deal with it. It also has a huge section on alternative therapies and how to use them.
  • Responsive Dementia Care. Pat said this is her favorite of all our books and yes, it is mine too. Dealing with dementia-related behaviors is often the most difficult job for a LBD care partner. Add to this the fact that drugs can often make the situation worse instead of better. This book explains how these dementia changes the brain and offers a variety of methods, both with and without drugs, for dealing with the resulting behaviors.
There are a couple of our books that Pat didn’t mention because she doesn’t have them in her library. (We’ll have to change that!)
  • A Caregiver’s Guide to Lewy Body Dementia. Published in late 2010, this was the primary book for LBD caregivers for several years. Even today, with many other books out there, it continues to be a favorite of LBD support group members.
  • Lewy Body Dementia, A Manual for Staff. Written for staff, this book includes the same basic information as the Guide does. However, it also includes a condensed version of the behavior management information in our Responsive Dementia Care book. We priced it reasonably so that care partners could give it to their helpers as gifts.
For more recommendations, you can visit LBDA.org and check out their books page.

For more information about Lewy body disorders, read our books:
A Caregiver’s 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, July 31, 2020

Care Partner Finances and COVID

For those of you who have been enjoying Pat's videos, she will be back next in four week. For now, we are taking a break to discuss finances, often a difficult subject for the dementia care partner.

Dementia care tends to be very expensive and LBD care can be even more so. Therefore, I’ve invited Judy Baker, of the Senior Caregiver Alliance to provide you with some literature about finances with a special focus on the effect that COVID might have on them:

Retirement Insecurity in the time of COVID. Many of us are already retired, or are seriously considering retirement. This article is an overview of this subject.

Financial Literacy for Older Adults. This article gives an overview of those financial situations that retirees tend to face and then offers some suggestions about how to organize your retirement finances.

Coronavirus Information for Older Adults and Caregivers. This article is perhaps the most valuable and useful of all of Judy’s suggestions. It contains a long list of resources about almost anything COVID related and how it affects you and your loved one.

Coronavirus Impacts on Older Workers. This article is mainly for those of you still in the workforce, and most applicable to those who are caring for a parent while still trying to earn a living.

The next blog will be one about making sure your financial Power of Attorney is good.

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, July 17, 2020

Medication Mantras

In the third of a series of videos about LBD and the medical system, Pat Snyder, author of Treasures in the Darkness and LBD teacher, talks some more about LBD and medication. Because she doesn't list the mantras until the end, I'm listing them here so you can connect each one with what she says about it.
  • Make one change at a time
  • Start low
  • Go slow
  • Learn what drugs to avoid
  • Be excited about what drugs are available
Here's Pat's 7.5 minute video: Medication Mantras

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, July 3, 2020

Avoid These Drugs!

This week's video by Pat Snyder, author of Treasures in the Darkness and LBD teacher, lasts over 18 minutes, but it is well worth watching. LBD can be very sensitive to so many drug and all LBD care partners need to know about these. In fact, you will want to take notes! And then you will want to go to some of the sources she recommends and learn more. And then you will want some references that you can refer to over and over.

I've listed her recommendations here along with some of my own:
People's Pharmacy Anticholinergic Drug List

Treating and Diagnosing Lewy Body Dementia

Beers Criteria, 2019 version

I also recommend our book, Responsive Dementia Care, which has a huge chapter on drug sensitivity and management as well as several chapters on a variety of non-drug options and alternatives.

Here is Pat's video: Avoid These Drugs When You Can with Lewy Body Dementia
Next week: Pat's video about Medication Mantras.

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, June 19, 2020

LBD and the Medical System

The next three week's videos by Pat Snyder, author of Treasures in the Darkness and LBD teacher, will be about dealing with the medical system and drugs. In this first one, Pat takes a little over eight minutes to talk about the LBD and the medical system in general. She makes some very important points:
  • Find a diagnosing and treating doctor who respects you as a part of the treatment team.
  • Avoid emergency rooms and hospitals because the staff all too often does not know how to treat our loved ones in a way that supports them instead of damages them.
  • Of all dementias, LBD is the most responsive to treatment--as long as it is the right treatment.
Here's Pat's video: Lewy Body Dementia Diagnosis? Here Is Some Hope!

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, June 5, 2020

Summer Tribulations

We are starting out summer schedule this month. While we are in a stay at home mode like most of the rest of you, we aren’t out, finding new material or meeting people with stories to share. This means that my “creative juices” don’t get triggered as much. We are also updating our computers and so I’ll be spending my time learning new programs and systems.

Today, I’m writing about the times we are in, where many things have combined to make a care partner’s already difficult job even more difficult.
  • Many of you who are already fighting your own battles with LBD. Who needs more? But there is more and it keeps coming!
  • Covid19 had caused issues for each of us: lack of supplies, poor access to medical help and loss of contact with family and friends. It has hit our economy so that many of you may be finding it difficult to pay bills. Perhaps the most difficult is the poor if any access to our loved ones in care facilities.
  • Then we have a year where summer isn’t even here yet but temperatures are already heating up, bringing fires that cause evacuations and sometimes, permanent loss of homes. In other places, hurricanes and other weather-related are causing the same kind of problems.This would be bad enough in normal times but trying to stay safe in the Covid era when you are homeless becomes impossible. Trying to care for a loved one with LBD is made even more difficult when you can’t place them in a care facility until you can find a new home.
  • Now add the unrest with the protesters. We support their concerns and have been thrilled that many have chosen to protest peacefully and that in many cases, the police are supporting rather than fighting the protesters. We are appalled at the rioters and looters that give the protesters a bad name and damage their cause. But the unrest makes it more difficult for those of you caring for loved ones to get out of your home to do shopping or do other necessary errands. Just one more tribulation to add to an already long list.
So those are the negatives. What are the positives? Sometimes, they are hard to find but I believe that such adversity helps us to better appreciate what we do have. For each of us, that list is going to be different. Do you have a safe, comfortable home to stay in? Do you have stores that deliver or stay open at extra hours? (We go shopping now at 6am!) Do you have air conditioning? Do you have family or friends who show up anyway and help out? Do you have enough to eat, a place to sleep? Do you have a computer and are you learning how to do Zoom meetings? How to learn via pod casts? How to use YouTube? Take some time today and find at least three things you are grateful for. Then think about these…and possibly more!...just before you go to sleep tonight.

Finally, as a part of our summer schedule, I invite anyone who is interested to submit a 300-800 article as a guest blogger. Here are the requirements:
  • The content must be about dementia or dementia caregiving.
  • Articles about LBD and LBD caregiving are preferable.
  • Articles must not be sales vehicles for anything. I always delete any comments that are testimonials for herbal or drug cures. This goes for guest articles as well.
  • You can discuss generally something that people might buy, for example, the “Intelligent” speakers that Amazon, Google and others sell. If you mention anything by name, you need to mention at least three, share what you like about each and provide references for all of them.
  • I will proof the article and will usually make some changes to fit our format. I will always send it back to you for approval before I post it on the blog.
  • I will always add a paragraph as introduction and often, I will add comments within the article that are clearly from me.
I hope I some of you will send me some articles!
Two weeks from today, we start another series of YouTubes by Pat Snyder. She has been doing many of these and had developed a good following. We are honored to have her as our guest YouTube blogger!

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.