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

Friday, October 11, 2019

2019 ILBDC: Caregiver Empowerment, Pt.3

This is the third in a series called The Four Pillars of Caregiver Empowerment, presented at the 2019 International LBD Conference in Las Vegas by Angela Taylor. The first pillar was about thinking ahead. The second was about using your resources and developing your skills. This week's blog is about a subject that many care partners neglect to do, caring for yourself. Yet, it is probably the most important task you have. YOU are your most important caregiving tool, and your loved one's most needed person.

Start by considering your obligations. Besides being a care partner, what else is there? Do you have a spouse or children that need your attention too? Do you have a regular job, or volunteering responsibilities? And what about your house? Who does the housekeeping, cooking, gardening, etc., etc.? Write it all down. Don't worry about whether you can do it all right now. For now, you just need to see what it is that you feel responsible for.

Make room for you. Now make up FOUR (4) to-do lists as follows:
  • For me to do. On it write down all the things you normally do, or think you should be doing. (Warning: This list is likely going to be far too long! Far more than you can do each day. Don't worry. You can shorten it later.)
  • For others to do: Start out by writing down all the jobs that others already do. Are there any crossovers? For example, does your daughter shop for you sometimes? Now go back to your "for me" list and find more jobs that others could do. Don't worry about who. Just make a list of things others could do for you, like vacuuming the floor or doing the dishes or shopping or...well, you get the idea. Don't forget to add "sitting with loved one while I go play." This is the list you refer to when someone asks you if they can help. You can even print some out and hand one to the asker, with a "Thanks so much. Here are some ideas."
  • For me to do for myself. Write down all you can think of. This may take more effort because you aren't used to thinking about this--and because you are afraid there won't be time and so why plan on it? Don't worry. Just write them down. Now when you have some time--like when someone offers to sit with your loved one or do your dishes, you can refer to YOUR list and find an activity that will refresh you. Don't forget to add "naps!"
  • Not to do at all. Look over your "for me" list again. What is there that just really doesn't have to be done? Be ruthless. Cut out all you can! And cut down too. Instead of washing dishes after every meal, consider every day, or even less often, for example.
Join the LBD community. As the disease progresses, you will find that you have less in common with old friends, and even family. But with fellow caregivers, especially fellow LBD caregivers, you will find empathetic ears, a safe place to vent and practical caregiving tips. You may also find new friends.

Manage your own health. This could be a whole single blog in itself--but I doubt there is much here you haven't heard. Nevertheless, how much of it do you do? It is all important. Remember if you don't maintain your physical and emotional health, your body is likely to rebel and you won't have any choice--you will be the one being cared for and who knows what will happen to your loved one.

Work to eat healthy, have regular physical exercise, get enough sleep and fluids, make time for socializing and more for just being quiet, and finally see your doctor when you need to and re-fill your prescriptions.

Next week's blog will be the final one in this series.

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

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

Friday, October 4, 2019

2019 ILBD: Caregiver Empowerment, Pt. 2

Last week, we started a series about Angela Taylor's Four Pillars of Caregiver Empowerment. This week we move on to her Pillar 2. You, personally, have a lot more resources than you may be aware of.

You are the expert. As the care partner of someone living with LBD, you become the expert. That's true even if you weren't that close before you became their caregiver. When I became my much older sister's caregiver, I knew very little about her. We'd actually never even lived in the same town, let alone the same house. But before long, I was an expert on her needs. I had to be to do my job well. You get to know how they relate to family. You know their level of education and as time goes on, you learn what they can understand and what they can't. What they can do and can no longer do. You know their hobbies and interests, those activities that can help them still feel like the person they used to be. You know their personal preferences and idiosyncrasies, those little things that can make life miserable or happy.

Try empathy first. However, as the disease progresses and your loved one's ability to communicate diminishes, understanding their wants and needs can often be frustrating. Step back and think about what you might want if you were feeling and thinking the things your loved one is. What's going on? Are they frustrated by things they can't do anymore. Speak to the underlying feeling. Are they experiencing hallucinations or delusions? Empathy will put you in their reality, where you can relate with them rather than expecting them to relate with you in your reality--a set up for disaster! Are they confused or anxious? Try empathy laced with patience, to help them calm down. Are they depressed or apathetic? Both are LBD symptoms, all of which get worse with stress and better with relaxation.

Be realistic. Schedules, routines and rituals are a caregiver's best friends. They help your loved one feel more in control of their life. But when you set them up, take into consideration how much longer everything takes now, and how much more energy it takes as well. Be alert for tiredness and low energy levels and curtail activities if necessary. Adequate sleep is extremely important. As time goes on a person living with LBD will sleep more and more. This is normal. But so are night time wakings because their time clock doesn't work well anymore. Do your best to keep these minimal--mainly for your own need for sleep, but be realistic about their presence. It may make more sense to have someone stay at least some nights every week so you can get some sleep. Finally, as the disease progresses, personal hygiene will become less and less important to your loved one. Insist on enough to keep him acceptable and safe and let the rest go.

Find community resources.If you are fortunate, you have family members who can help you. But even then, you need to know about the resources that are available in your community. The list is long and you should start researching these well before you need them. Remember it is much easier to make informed decisions if you aren't in crisis! Check out the following: home care assistance, respite care, legal and financial services, geriatric care managers, government agencies, adult day programs and long term care choices.

Finally, don't forget about the LBDA Research Centers of Excellence. Visit www.lbda.reoe to see if there is one in your area. If so, do take advantage of what they offer:
  • Experts in clinical management of LBD. You can always find a Lewy-savvy doctor here with the latest information because the centers also provide LBD education to their health professionals.
  • Support groups and community education for you and the community.
  • Opportunities to participate in research, which can be a gratifying experience.
Next week's blog will be Pillar3: Care for Yourself. This is a subject we talk about often, but never too often, given its importance!

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

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

Friday, September 27, 2019

2019 ILBDC: Caregiver Empowerment, Pt.1

This week's blog starts a series about a presentation of Angela Taylor's at the 2019 International LBD Conference in Las Vegas.

These four pillars can act as a guideline to help you do the things you need to do while taking care of yourself as well. This week is all about

Pillar 1: Prepare in advance.

Knowing what you are dealing with and getting some ideas about how to do that BEFORE you need it, before it is a crisis situation, can make all the difference in the world. It is sometimes difficult to think about the future, especially when you've just received a diagnosis. However, the sooner you can do this, the easier your life is going to be later on.

Study the basics. Learn about LBD, its symptoms and how it is managed. (We have several books that can help you with that--as can many entries in this blog. Check the books out at the end of every blog entry.)

Think ahead. Get your legal and financial matters in order. If you can do this while your loved one can still legally sign papers, it will make the process much easier. Care partners also highly recommend that you hire an elder care lawyer to make sure all of these complicated tasks are done correctly and in a way so that you will get the best benefit as the disease progresses.

Prepare for doctor visits and medical emergencies by keeping a journal and having a "go bag" of things you will need in the emergency room. Make sure your loved one's living will or other health care advisories are all in order.

And think ahead about when it will be time to stop driving. Again, if this is discussed while it is an abstract issue, it will be much easier to come to an agreement. And once that agreement is in place, you will find that your loved one will be more accepting of it later (not necessarily willing, even then, but less resistant!)

Plan to adapt. This starts by accepting the diagnosis. Accepting that you life and your loved one's life will change, and will continue to change. As the disease advances, there will be role changes. You will, of necessity, take on more responsibility. Your loved one's job becomes different, not easier. It will take more and more of his effort to maintain. Think about how you will balance this major, new priority, caregiving, with your work, family and social life. Planning now, can make this much more possible. Above all, cultivate a flexible attitude. Don't get caught up in "what was." That will keep you from finding ways to adapt to the new realities.

Keep living. Don't let LBD be all there is! Continue to make new memories together. Find enjoyable things to do together and with family and friends. Empower your loved one to contribute to these memories. Maintain your connection and trust with each other. You are a team. And finally, remember to appreciate the simple pleasures of life.

Next week's blog will be Part 2 in this series about the Four Pillars of Caregiver Empowerment. Pillar #2: Use Outside Resources and Develop Your Skills.

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

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

Friday, September 20, 2019

2019 ILBDC: What Are Biomarkers?

This presentation at the 2019 International Lewy Body Dementia Conference by Dr. David Irwin of the University of Pennsylvania offered a thorough overview of biomarkers. He started out with this "pre-test."

A biomarker is:

a) Paper and pencil cognitive test
b) Survey/questionnaire
c) Blood test
d) Spinal fluid test
d) Physical exam finding
e) Neuroimaging
f) Sleep study- Electrophysiology
g) ALL OF THE ABOVE

Yes, the answer is "All of the above." In the past, I had thought biomarkers were mainly those expensive and involved imaging tests that physicians use improve their diagnosis things like dementia. And they are that. But it turns out that many of the things we've experienced in doctor's offices and hospitals for years can be defined as "biomarkers."

According to the National Institute of Health, a biomarker is "a characteristic that is objectively measured and evaluated as an indicator of normal biological processes, pathogenic processes or a pharmacologic response to a therapeutic intervention."

More simply, a biomarker is anything that can be used to objectively measure an aspect of one's health or a response to treatment.

Biomarkers are used in two ways. The first is to assist in diagnosis (measure an aspect of one's health) The second is to track the progress of (a response to) an illness or its treatment.

Blood pressure is a biomarker we've used for centuries measure and track the health of our heart and circulatory system. Doctors can also use it to track the body's response to various drugs, such as those for high blood pressure. In the same way, the blood tests used to diagnose certain cancers can be used to track the body's response to treatment later.

With DLB, the type of LBD that starts before motor symptoms are evident, biomarkers are used diagnostically and as trackers.  Diagnostically, they can facilitate an earlier diagnosis. The hope is that eventually, we will be able to use biomarkers to find Lewy bodies so early that they can be eliminated before they spread. They also help the diagnosing doctor differentiate DLB from the different dementias. Biomarkers can even firm up a choice of DLB vs. Parkinson's with dementia, the "other" LBD. As trackers, they help the doctor track progression and decide upon the best treatment.

The three most used DLB biomarkers are DAT (dopamine transport) imaging, I-MIBG scanning of the heart, and sleep studies. DAT measures the movement of a protein used to move dopamine in and out of a cell. Less activity means that DLB is more likely. I-MIBG is a radio-active tracer used to measure damage to the nerves that control automatic heart function. This damage can signal the presence of LBD. Sleep studies are used to identify the presence of REM sleep behavior disorder, or active dreams.

Another biomarker that you might come into contact is a short questionnaire that a primary doctor--or even care partners!--may use to identify the presence of enough LBD symptoms that a referral to a specialist is appropriate. This may or may not include the "clock test," where a hand drawn clock is used to judge concept and hand-eye coordination.

Naturally, biomarkers are also used with Alzheimer's disease (AD). There is more and more effort on identifying AD prior to symptoms. This will likely happen before it does with LBD, but many of the same techniques can be used for other neuro-diseases such as LBD, once they have succeeded with AD.

We aren't through talking about what happened at the LBD Conference yet! Next week, we will tell you about the LBDA's Research Centers of Excellence and what they can do for you.

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

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

Saturday, September 14, 2019

Participating in Research: Part 2

Last week's blog was the first how of a summary of a presentation by Dan Kaufer MD, of North Carolina at the 2019 International LBD Conference. It discussed the value of and need for clinical trials and their structure, design and purposes. This week we dig a little deeper and discuss the components of clinical trials and what you should know before you participate.

Clinical Trial Components:

Institutional Review Board (IRB)
  1. Board members: doctors, researchers, members of the community
Tasks:
  • Review, approve, and monitor all clinical research studies
  • Ensure that research risks are minimized and are reasonable in relation to any potential benefits
  • Review the informed consent document to make sure it is understandable and clearly describes the risks and benefits of the study
Informed Consent

Provides potential and enrolled participants information about a clinical study
  • Intended to help a person make an informed decision about the risks of, potential benefits of, and alternatives to the study
A person must sign an informed consent document before participating in a research study
  • Signing the document and providing consent is not a contract
  • Participants may withdraw from a study at any time
Clinical Study Research Plan

A clinical study is conducted according to a research plan (protocol) that is designed to answer specific research questions and safeguard the health of participants and covers the following :
  • Reason for conducting the study
  • The number of participants needed
  • The schedule of tests, procedures, or drugs and their dosages
  • The length of the study
  • What information will be gathered about the participants
What Do You Need To Know?

Many studies have strict criteria for the study and the subjects. You need to know the following before you sign up.

Study Basics
  • What is being studied?
  • What is the therapeutic rationale for this treatment?
  • What do we know about possible treatment effects?
Subject Eligibility
  • What is the target population?
  • Inclusion criteria: age, diagnosis, severity, etc.
  • Exclusion criteria: age, severity, prohibited medications, other medical conditions, etc.
Treatment Arms (components)
  • What are the possible interventions (e.g., treatment vs. placebo) that I might receive during the trial
  • How will it be determined which intervention I receive (for example, by chance)?
  • Who will know which intervention I receive during the trial (blinding)?
Other Medications
  • Can I take my current treatment(s)?
  • Are there any medications that I am not allowed to take?
  • Are there other treatment options available?
Study Requirements
  • What will I have to do to participate?
  • Do I need to have a study partner?
  • What tests and procedures are involved?
  • How often will I have to visit the hospital or clinic?
  • Will I have to stay overnight?
  • How long will the study last?
Cost/Payments
  • Who will pay for my participation?
  • Will there be an issue with my insurance company due to experimental vs. standard care?
  • Will I be reimbursed for other expenses such as travel?
  • Who will oversee my medical care while I am participating in the trial?
  • What are my options if I am injured during the study?
Follow-Up I Termination
  • What if I decide to withdraw from the study?
  • What type of long-term follow-up care is part of this trial?
  • If I benefit from the intervention, will I be allowed to continue receiving it after the trial ends?
  • Will results of the study be provided to me? (e.g., which treatment arm, brain imaging data, genetic testing, etc.)?
Now, go find a clinical trial and join up! Just be aware that if getting a new experimental treatment is your ONLY reason for signing up, you are likely to feel cheated if you end up in the placebo group. If you look at the whole process as a way of helping the researches find out more about LBD, then getting to be in the non-placebo group can be a wonderful, but unexpected bonus to an already good adventure.

References/Resources 
Dan Kaufer MD, North Carolina
Food and Drug Administration:
Lewy Body Dementia Association
Comprehensive Clinical Trials Site
Center Watch. Overview of Clinical Trials.

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

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

Friday, September 6, 2019

Participating in Research: Part 1

Learning more about LBD and how to treat, or even cure takes more than researchers. It also takes people like us to step up and volunteer to be subjects. More clinical trials are ended for lack of subjects than for any other reason!  Most of the information below is from a presentation by Dan Kaufer MD, of North Carolina at the 2019 International LBD Conference.

How does clinical research differ from clinical care?
  • Clinical research involves human subjects who participate in a study protocol designed to answer a question that contributes to medical knowledge
  • Clinical trials are meant for research, not to administer proven effective medical care.
  • Clinical research is the only legitimate pathway for developing new, safe and effective treatments for a medical disorder or condition.
Types of Clinical Research Studies

Observational:
  • May be done prior to or in conjunction with a clinical trial
  • Evaluates a health-related outcome
  • Evaluating one or more tests aimed at identifying or diagnosing a particular disease or condition
Interventional:
  • Clinical trial
  • Evaluates or compares one or more therapeutic interventions for safety and potential benefits
Reasons for Conducting Clinical Studies
  • To evaluate one or more tests aimed at identifying or diagnosing a particular disease or condition
  • To explore ways to improve the comfort and quality of life through supportive care for people with a chronic illness
  • To find ways to prevent the initial development or recurrence of a disease or condition
  • To evaluate one or more interventions for treating a disease, syndrome, or condition
Drug Development Process for Human Disease

Preclinical to Clinical:
  • Average time: 12 years
  • Average cost: $1-2 billion
  • Potential treatment identified based on laboratory studies (in vitro)
  • Proof of concept studies in laboratory animal models (in vivo)
  • Human testing - clinical
Clinical Testing

Phase 1.
  • Less than 100 subjects.
  • Average time: 2 years
  • Assess safety for use in humans?
  • Usually tested in normal human subjects.
Phase 2.
  • 100 - 1000 subjects
  • Average time: 2 years
  • Assess the safety and potential effectiveness of an experimental therapy for a specific medical condition.
  • Ex: What dose or delivery method provides the highest benefit and least risk.
  • More then one Phase 2 trial exploring various aspects of a drug may run concurrently or may run consecutively, which can greatly increase the time for this phase.
Phase 3.
  • 100s - 1000s (a.k.a. "pivotal" trial)
  • Average time: 3 years
  • Typically Involves testing 1or more doses of the experimental therapy In a randomized, placebo­ controlled, double-blind study to determine If the therapy is safe and effective.
  • Randomized: Subjects are assigned by chance
  • Placebo-controlled: Subjects receive either active treatment or placebo
  • Double-blind: Assignment is not known by either the subject or investigators
Therapeutic Interventions: Regulatory Tiers
Once a therapy has passed Phase 3 Clinical Trials, it must be approved by the FDA before it can be marketed.

FDA Registered Therapies
  • Pharmaceuticals (chemically based substances)
  • Requires clinical research protocols that must meet high standards for scientific merit (e.g., double-blind, placebo-controlled), safety, and ethical conduct
  • FDA reviews data from the Phase 3 trials (and possibly others) for regulatory approval.
  • FDA approval can take over 2 years, but can be fast-tracked, with results in as little as 6 months.
Vitamins and Herbal Supplements
  • Derived from natural vs. chemical sources
  • Not intended to treat specific medical conditions 
  • Homeopathic treatments are in this category. While they are often designed to treat specific symptoms, they are not FDA governed.
  • Rigorous testing for efficacy or safety not required
  • Testing and quality control depends on company standards
Therapies for Neuro-degenerative Disorders

Symptomatic
  • Palliative
  • focus of treatment is alleviating one or more signs/symptoms associated with the disease or condition
  • potential benefit of treatment is cumulative
Disease-modifying
  • focus of treatment is to alter the underlying disease process in a way that slows down or halts progression, or reverses decline
  • potential benefit of treatment may be cumulative
Where Are Clinical Studies Conducted?

Academic research centers
  • conduct a variety of different research studies
  • perform clinical trials
  • provide clinical care
Community-based clinical trial centers
  • primary focus on performing clinical trials
  • little or no provision for clinical care
Private practices
  • primary focus is clinical care
  • also conduct clinical studies
Well, you may know a lot more about clinical trials than you did but there's more to come. I know I do! But, be sure to read next week's blog before you consider volunteering. While it is a great thing to do and much needed, you need to understand what you are getting into! Next week, the last half of this series will discuss the components of clinical trials and what you should know before you participate.

References/Resources
Dan Kaufer MD, North Carolina
Food and Drug Administration
Lewy Body Dementia Association
Comprehensive Clinical Trials Site
Center Watch. Overview of Clinical Trials.

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

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

Friday, August 30, 2019

2019 LBD LBD Conference: Netflamapimod, an Experimental Drug of Promise.

In April, 2019, EIP Pharma announced that they had funded a program to explore the use of neflamapimod as a treatment for DLB. Phase 2 clinical studies are expected to start this year. Ongoing Phase 2 studies trials with early Alzheimer's are expected to provide results in early fall. The drug inhibits an enzyme involved in a process that appears to increase nerve inflammation and turn a natural protein, alpha-synuclein, into toxic Lewy bodies.

Even if this new drug shows promise, it is still a long way from being available for use. Phase 2 trials can last up to two years and only about a third of experimental drugs pass these tests. In addition, drugs may undergo more than one Phase 2 trial. So far, neflamapimod has had four. Each phase of a clinical trial takes about 2 years, but as with the trials of neflamapimod for Alzheimer's, there can be more than one in each phase which may or may not run concurrently.

Netflamapimod has been in Phase 2 clinical trials for use with Alzheimer's since 2015. The four Phase 2 trials brought about enough positive reports to instigate Phase 2 trials for other diseases, including DLB, to start in 2019. If everything goes perfectly, it may be ready for FDA approval in five years--in about 2024. (2 more years for the new Phase 2 tests and 3 years for Phase 3).

FDA approval can be a long drawn out process taking 2-3 years. The FDA has been fast tracking drugs to treat serious conditions like dementia. The skipped steps do decrease the assurance of a drugs effectiveness but it can shorten the approval process by many months. Our experience is that most people living with LBD and their families would be willing to accept that danger so as to be able to try the drug sooner.

However, once the drug is on the market, it still won't be easy to get. Doctors may also hesitate to prescribe them until Phase 4 clinical trials, which occur after a drug is on the market, are complete. These Phase 4 trials test new drugs that are in public use for any problems that might have been missed in the previous trials. Even if your doctor is willing to prescribe it, insurance companies provide limited coverage for new drugs that are usually a lot more expensive than existing drugs to start with.

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

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

Friday, August 23, 2019

2019 LBD Conference: People Living with LBD

The Caregiver Track conference highlighted people living with LBD and their experiences. Last week, our guest blogger, Rosemary Dawson, told us about Susan Williams and what a wonderful advocate for LBD she has become. Today, she tells about the some of the other speakers.

Laura Turner Seydel is a national environmental advocate and daughter of Ted Turner. There has been nothing in the media about Ted Turner and his Lewy journey since his interview with Ted Koppel in September 2018 during which he demonstrated that he knew very little about LBD, likening his case to a "mild case of Alzheimer's ... but not nearly as bad ... Thank goodness, I don't have that.”

Laura told a different story. We appreciated her candor in describing her father's Lewy journey and the information she shared that shows that his family has a better understanding of LBD than he expressed in that interview. Our hope is that Laura will be another vocal LBD advocate and that her presentation at the conference will be the first of many efforts by Ted Turner's family to bring awareness of the disease that afflicts him.

Ted was diagnosed only a few years ago but Laura tells how he experienced RBD (REM sleep behavior disorder, or Active Dreams) way back when he was still married to Jane Fonda. (They were divorced in 2001.) Ted, who celebrated his 80th birthday in 2018, appears to be doing fairly well. Although he tires easily and has problems with short term memory, he stays active. He particularly wants to continue to ride horses on his Montana ranch although his parkinsonism makes this difficult and dangerous. This desire motivates him to do yoga every day (with his private yogi). The yoga strengthens his core and helps his flexibility, which allows him to ride and has other benefits as well.

Don and Cynthia Kent were very effective in presenting what life is like for those who live with LBD and for their spouses. They illustrated the challenges, but also the rewards and demonstrated that people can live well with Lewy. Don Kent is a retired lawyer from Tyler, TX; Cynthia is a retired judge who still practices law. They shared their life pre-Lewy, the early symptoms, the diagnosis, and how they are trying to live well with Lewy. Don was candid that before he had a diagnosis, he had thoughts of suicide which sent them to the Mayo Clinic where he was diagnosed with LBD. These two short videos are both well worth watching., one of Don talking about his LBD journey and one about the couple's activities in making Tyler a dementia friendly community You can also read about them in this article. https://tylerpaper.com/lifestyle/health/tyler-attorney-don-kent-faces-lewy-body-dementia-diagnosis-with/article_2f7ba26d-78f7-5413-bbd7-6fe279abc786.html and

https://www.youtube.com/watch?v=9eL9qfMZW48&feature=youtu.be

https://www.kltv.com/2019/02/22/tyler-becomes-only-second-texas-city-recognized-dementia-friendly-community/

This was my third time meeting Don and Cynthia. They are doing so much to spread awareness and educate people. Truly inspiring that they are doing this while facing the ups and downs of life with Lewy.


Robert Bowles is a retired pharmacist from Georgia. Since being diagnosed with LBD at the age of 64, Robert has been tireless in his efforts to bring awareness to LBD, to support those living with Lewy, and to bring all of the LBD stakeholders together to tackle the many facets of LBD. Robert talked about “A Life Reexamined.” He recalled how when he was in the throes of REM sleep behavior disorder (RBD) and terrible hallucinations, he wanted to give up and die, but he believes that God told him that He was not done with him yet. Robert talked about how he tries to share the principles that guided him before Lewy: Love, care, education, encouragement, and hope. And he talked about his acronym ASAP: Acceptance, Socialization, Attitude, and Purpose. I encourage you to read more about Robert, his life with Lewy, and his work. His video is worth watching too. You can see a video of Robert at https://www.youtube.com/watch?v=swY9zTsySKA
See also http://dementiajourney.org/tag/dementia-action-alliance/ and https://www.lbdlivingbeyonddiagnosis.com/index.html

It is my honor to serve with Robert Bowles on the Living with Lewy Advisory Council which is largely the result of his persistence in advocating for such an entity.



Josh and Emily Ohde talked about their ongoing support for Josh’s father, Larry, who has LBD. Josh’s mom died, so his dad’s care fell to him and his wife, Emily. They relocated Larry with them from Kentucky to Rochester, Minnesota. Larry lives in a long-term care facility only a few minutes from where Josh and Emily live, so they spend time with him every day, often taking him out to explore their new environment. Their presentation highlighted how family members can continue to be very active care partners and advocates for their loved ones with LBD when the person is an LTC facility.

Our next blog will describe an experimental drug we learned about at the conference.


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

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

Friday, August 16, 2019

2019 International LBD Conference: Susan Schneider Williams


The Caregiver Track of the conference highlighted people living with LBD and their experiences. This week, our guest blogger, Rosemary Dawson, tells us about one of these speakers.

Susan Schneider Williams, Robin Williams’ widow and probably the country's most high-profile LBD advocate, did an exceptional job during the welcome and round table. Her level of knowledge, amount of self-disclosure, vulnerability, and ability to articulate important points provided standout moments. Susan shared information about her Lewy journey with Robin that I hadn’t seen disclosed before.

Despite their wealth and number of specialists, they experienced what so many of us have been through. Increasing symptoms, no diagnosis, incorrect diagnoses, and incomplete diagnosis (PD). Robin never knew that he had LBD because it was only upon autopsy that they discovered what one LBD specialist described as the worst case of LBD he had ever seen as well as signs of Alzheimers. Mixed dementia is very common, but as with Robin, often not discovered until autopsy.

Also, in retrospect, it is apparent that Robin experienced many of the classic LBD symptoms: short term memory loss (inability to memorize his lines for his last film), hallucinations, paranoia, anxiety, parkinsonism, withdrawal, loss of executive functions, and more. He knew something was wrong and wanted to re-boot his brain. Because of his previous experiences with substance abuse and depression, some doctors misinterpreted his symptoms and prescribed drugs that can have adverse effects on people living with LBD. Although he had been drug-free for many years, he returned to a 12-step rehab program to see if the strategies there might help with his current condition. It didn’t.

After Robin Williams died in 2014, Susan set out to raise awareness about this little known yet devastating brain disease by telling about his exhaustive battle with LBD.
https://www.americanbrainfoundation.org/about-us/governance/susan-schneider-williams-bfa/
As spokesperson for Lewy Body Dementia, she is committed to raising awareness for brain disease. She has appeared on many talk shows and serves as the Vice Chair on the board of directors for the American Brain Foundation. In 2016, she moderated a 2016 Forbes Healthcare Summit panel, authored an editorial for Neurology, the journal of the American Academy of Neurology and received the American Brain Foundation's Commitment to Cures Award. Her Neurology editorial for “The Terrorist Inside my Husband’s Brain” is required reading in many medical schools and has been downloaded millions of times. You can read it at https://n.neurology.org/content/87/13/1308

Robin's Wish is a timely and urgent biographical documentary of the much beloved Robin Williams that weaves together the untold love story of his third marriage, his untimely suicide, his unknown illness and his universal experience moving through pain in the search for healing and joy. You can see excerpts from the film and read a full description here. (Note: the description calls Robin's disease rare. We know that although it is often unrecognized, it is far from rare! With 1.4 million people in the US alone, it is not rare. Rare is 20,000 or fewer.
https://www.documentaries.org/robins-wish

This film will have a first showing as a fund raiser in New York on July 17th. After that, Susan is not yet sure how it is going to be distributed - likely online - perhaps, iTunes, Amazon, or Netflix. https://lewybodyresourcecenter.org/robins-wish-lincoln-center/




Susan is opening a topic of discussion that needs more light shed on it: suicide. Lewy bodies can destroy the parts of the brain that control rational thought and decision making, and some drugs prescribed for the symptoms of LBD can cause suicidal ideation, suicidal behavior, and suicide-related events. I hope that Robin’s Wish provides a good understanding of these potential causes of suicide.


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

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

Friday, August 9, 2019

2019 International LBD Conference: Patient/Care Partner Track

This week's blog is about presentations in the Patient and Care Partner Track of the 2019 International LBD Conference that we attended recently in Las Vegas.

Several people living with early stage Lewy talked about their experiences, with an emphasis on the fact that although they have the disease, they are still the same person, albeit with more limited abilities. This loss of abilities has led to their need to find other ways to feel usefull. Family members, including Robin William's wife and Ted Turner's daughter, talked about their experiences and their loved one's journeys. In future blogs, Rosemary Dawson will be telling about these interesting speakers. Today's blog is a summary of some of the other presentations. I will cover several of the topics much more thoroughly in future blogs.

Partnering with your Medical Team. Dr. Melissa Armstrong, Florida, presented methods for partnering with your medical team. Her main points: a) know yourself and your loved one, b) help your team get to know you, c) identify your team, d) partner with them, and e) continually reassess.

Dealing with Fluctuations an Hallucinations by Tanis Ferman, a  pioneer in LBD-related behavior management. Highlights were a discussion of what fluctuations and hallucinations are and aren't, why hallucinations occur, their connection to emotions, and some management suggestions. Along these same lines, Dr. Boeve, another LBD pioneer, talked about Coping with RBD but didn't provide any literature.

Evidence based Strategies for Supporting Care at Home by Laura Gitlin, Dean of College of Nursing and Health Professions, Drexel University. Laura advocated changing the cycle of care from an unhelpful one with little care or patient/caregiver input to a more hopeful one, with patient and care partner participation.

Four Pillars of LBD Care and Empowerment, by our own LBDA staff member, Angela Taylor. The pillars are 1. Advance preparation, 2. Use outside resources, 3. Care for yourself, and 4. Leverage your experience.

Non‐drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Symptoms by Rosemary Dawson and the Whitworths (yes, us!). Although Dr. Ferman talked about hallucinations and Dr. Boeve talked about RBD, our poster was the only other presentation specifically about dealing with behavioral symptoms. We identified dementia-related behaviors and listed a variety of non-drug therapies. It is quite thorough and can be accessed via our website and used by group facilitators or others who want to spread the word about dealing with these bothersome symptoms with fewer drugs.

End of Life and Use of Hospice Care in Patients with Dementia with Lewy Bodies. Briana Arman, Cleveland U.. Briana's poser showed that while hospice was often utilized, it was seldom for more than a few days or weeks. While new regulations have made it difficult for someone with only dementia to go on hospice, people living with LBD usually have other physical conditions that would help them qualify. However too many people still believe that hospice is only for the final days.

Staying Connected and Living Well with LBD, by Allison Killen. The founder of the Lewy Body Society in the UK presented this as being informed, focuses on the positive and involved and discussed various aspects of this.

Thriving Through Singing, by Mary Lenard. The co-founder of Giving Voice talked about how singing, especially in groups, fosters well being, purpose, community and understanding. Her group inspires and equips organizations to bring together people living with dementia and their care partners to sing.

Finally, a few other bits of information we picked up:

A Canadian poster pointed out the importance of social media for support for those in rural areas, and especially for those dealing with early onset dementia. (Or I'd suspect, any kind of rare diseases where even in an urban setting, specific support groups would be limited.)

We found it interesting that researchers discovered no significant evidence of age-related decline in adults over 60 without LBD. For researchers, this is of concern due to possible over-correction for "age." For the rest of us, it means that we can't claim "senior moments" as easily...and that they are more likely evidence of early MCI! (But also, let me remind you, of stress.)

Microbleeds (small chronic brain hemorrhages) in patients with DLB were related to high blood pressure but not DLB or AD. (We wondered if they were related to vascular dementia?) They were associated with less severe attention, visuospatial dysfunction and less parkinsonism.

The next blog: More conference information.

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

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

Friday, August 2, 2019

2019 International LBD Conference: Overview

Last week was about the helpful programs and projects we learned about at the conference. This week a review of 142 abstracts gives us a general overview of they kinds of information presented at the conference. About half were scientific and half were clinical.

The scientists focused on biomarker identification in early LBD and in comparing LBD and AD brain pathology. The focus has definitely shifted from finding new ways to treat dementia to finding ways to identify it as early as possible. Mild cognitive impairment (MCI) was a much mentioned phrase and many reports were about efforts to identify and compare early symptoms in those with various kinds of MCI. Another strong area of focus is the identification of mixed dementias. One report noted that identifying the differences between DLB-AD and 'pure' DLB was equally or even more important than  identifying the difference between DLB and PDD.

Of the LBD symptoms, hallucinations, parkinsonism, RBD (Active Dreams), cognitive fluctuations and depression were the most discussed.

Hallucinations and visuospatial dysfunctions (poor hand-eye co-ordination, poor depth perception) were found to be associated with orthostatic hypotension (low blood pressure on rising) and slow cognition. People who hallucinated were found to put more emphasis on prior knowledge than they did on their senses. Thus, if a person has had prior knowledge of a dog that bites, then seeing a friendly dog may still be scary. This would also be more likely because the negative emotions tend to be in charge.

RBD (Active Dreams) at MCI diagnosis is related with a younger age, less AD, more parkinsonism, and a shorter survival. RBD was less common with LBD/AD females. A review of patients in a psychiatric hospital found symptoms indicative of RBD. Several reports found that home testing measures, including even a telephone interview for specific RBD symptoms might be as effective as formal overnight sleep test and much less of a hardship on the patient. Dopamine deficiency in patients with RBD was found to be a possible biomarker for dementia.

Parkinsonism at onset of MCI was always accompanied by RBD but did not predict DLB although it did increase any progression to DLB and was present 75% at time of death. It was associated with excessive daytime sleeping (EDS), less Alzheimer's and a shorter survival and progression to death.

Cognitive fluctuation biomarkers included telling time and EEGs: LBD-related cardiac (heart) nerve dysfunctions (an indicitative biomarker for DLB) were suggested to explain the differences in alertness. That is, when fluctuations in cardiac nerve function leads changes of oxygen to the brain with matching brain function fluctuations. These fluctuations continue to show up even late in the disease in 75% of patients.

Depression was identified as a serious, under-addressed problem with LBD, with some suggestions of its LBD related cause but few suggestions for treatment, other than increasing dopamine in some way.

Biomarkers were a big subject and covered a wide variety of objective, measurable tests. As care partners, we need to be especially aware of how valuable those obtained from the cerebral spinal fluid have become. There is a concerted effort to get people to submit to these tests, for their own needs but even more so for building up a network of subjects for clinical testing.

Drugs. There are still no drugs for treating DLB specifically, and no new ones for treating PDD. There are some variations of the old cholinesterase inhibitors (Aricept, Exelon and Razadyne) to make them longer-lasting, or used with a patch, or combined with drugs that reduce gastric side effects. There are a few drugs being tested.
  • Pimavanserin, an anti-psychotic approved for use with PDD psychosis, is now being tested with other dementias.
  • Neflamapimod, barely in Phase 2 testing for use with DLB, is believed to decrease brain inflammation that turns alpha-synuclien into Lewy bodies.
  • (Zonisamide-(ZNS), first used to treat epilepsy, is in Phase 3 trials for treating parkinsonism in DLB with fewer side effects than anti-Parkinson's drugs. Drugs that get this far usually go to market but it could still be five years before we see it. (These trials can last up to 3 years and then, it still has to go through an approval process with the FDA that can last for 2 years.)
  • Recruiting has begun for Phase 2 clinical trials of LY3154207, a PD drug that is hoped to increase dopamine function with fewer side effects.
Next week will be an overview of some of the subjects covered in the Patient and Care Partner track.

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

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

Friday, July 26, 2019

2019 International LBD Conference: Programs

At the 2019 LBD Conference we learned about several programs that foster better LBD research, care and education. Some have been around for a long time. Others we first heard about at the conference. The first four make it easier for you to find a Lewy-savvy doctor and other Lewy-specific services as well.

The Mayo Clinic has been a pioneer in LBD care and research. Several leaders in the field, such as Drs. Boeve, Ferman and Dickson practice there. Mayo has major campuses in Rochester, Minn.; Scottsdale/Phoenix, Ariz.; and Jacksonville, Fla. You can count on finding a Lewy-savvy specialist at any of these centers.

The Cleveland Clinic is another group that's been around for a while, with two main centers in the US and others in foreign countries. Dr. Leverenz, past chair of the LBDA Scientific Advisory Committee, practices in their Cleveland location. The Cleveland Clinic partnered with the LBDA to sponsor the 2019 International LBD Conference in Las Vegas, where their other main campus is located.

One of the most exciting things we learned about in the whole conference was how many LBDA Research Centers of Excellence (RCOE) there are now. Launched in late 2017, this exciting program has centers in 17 states and 23 metro areas. One of the RCOE's goals is to increase access to high quality LBD clinical care. An RCOE medical center will have physicians specializing in LBD on staff, sponsor LBD caregiver support groups and provide LBD-related educational training for staff, patients and their families and to the general public. These centers are going to make it a lot easier for families to find and receive good Lewy-savvy care!  Check here for RCOEs your area.

NIH sponsored Alzheimer's Disease Research Centers (ADRC) have been in effect for many years. Once focused on Alzheimer's, they now also address "related dementias." Thirty-three ADRCs centers provide informed research, treatment, support and education for people living with dementia and their families. These centers are less likely to have a LBD specialist on staff than the RCOEs, but are definitely worth checking out. Check here for ADRC center in your area.

The NIH (National Institute of Health) sponsored Alzheimer's Disease and Related Dementias (ADRD) Summit takes place every three years to review, assess and update national research priorities for Lewy body and other dementias and make recommendations for further research. In its March 2019, members made recommendations highlighting biomarkers development and use, research on alpha‐synuclein, protein spreading, genetic and environmental risk factors. NIH investment in LBD research has doubled since 2014, in part due to the additional funding made available by Congress to address the growing concern about AD/ADRD.

This list wouldn't be complete with adding some information about the 2019 International Lewy Body Dementia Conference. This is the first international conference since the original one in Fort Lauderdale in 2015. With specialists from around the world, celebrity family members, excited care partners and articulate patients and much more, it was filled with enough information to fill this blog for the next year!

There were also a couple of UK programs worthy of mention. One was the Diamond Study, which offers an "Assessment Toolkit for Dementia with Lewy Bodies." This checklist is designed to help clinicians more accurately diagnose PDD and DLB, using the 2017 DLB diagnostic criteria. Since multiple diagnoses prior to an accurate LBD diagnosis is a prime care partner complaint, anything that can improve the process is quite welcome! You can read more about this and see the checklist here.

The other UK program is called "Imagine." This program, sponsored nationally and by the Lewy Body Society, used care partner interviews to "imagine" their perceived needs and concerns for guidance in shaping future research. Hallucination, incontinence and sleep issues were the most challenging symptoms. "Meeting the demands of being a caregiver" was important but not usually a major challenge. Concerning future research, the group recommended more clinical trials about treating these more challenging symptoms, instead or in addition to those that focus on curing DLB or treating its cognitive symptoms. Their findings are in line with our experiences, which are that care partners want to know more about dealing with day to day issues although they don't discount the value of more scientific research.

Finally, we haven't even mentioned the LBDA or the UK's Lewy Body Society or our own Lewy Body Dementia Association. We'll save these for another day, along with a new US group and a few other foreign groups that have been around for a while.

BTW, we were going to go on a summer schedule of every two weeks, but we have so much conference material to share that that isn't going to happen after all!

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

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

Friday, July 19, 2019

2019 International LBD Conference: Impressions

1. First, let me say that on the whole the conference was great. However, our first impressions were, sad to say, negative. Environmentally, this conference was not designed for weaklings--or in our opinion, the elderly. It was difficult to access unless you stayed there (we didn't) and the Caesar's Palace, where it was held in Las Vegas, is HUGE. There were short flights of steps scattered throughout the buildings--just two or three, but enough to make wheelchair and walker travel difficult and further tire out the rest of us over 70. It must have been confusing for the many people living with LBD who attended too--A casino is a noisy, busy place with way too much going on. It was also either very cold (in the building) or very hot (during the social gatherings outside). It took us several days after we got home just to recuperate! I hope they choose a better venue for the next conference.

On the positive side, still speaking about physical comforts, they did a great job of keeping us fed. We didn't have to go out for any meals during the whole two day conference. They also provided some entertainment although we were too tired to stay and enjoy it. Those who did apparently had a fun time.

2. That said, let me repeat, the conference itself was great. It lived up to its name and really was international. We loved hearing speakers and meeting people from all over the world. We also liked that they divided the conference into professional and care partner tracks. Of course, we attended the care partner track and it was great that we didn't have to struggle as we usually do at these conferences to be able to understand the speakers. They did start out the conference with a morning session where we all met together. This gave us a small taste of what the scientists were working on. We liked that too. What they are doing is so important to all of us in the long run.

3. A highlight of the conference for Jim was being recognized from the podium as a founder of the Lewy Body Dementia Association. He is the only one of the five co-founders who is still actively working with LBD although he is no longer directly associated with the LBDA. As he should be, he is very proud of this accomplishment. Another highlight for us was that our book, A Caregiver's Guide to Lewy Body Dementia, was the top book listed in the Patient and Care Partner Guide, given to every family in that tract.

4. Rosemary Dawson, Jim and I put together a poster presentation that you can still see on our website. Even though there was only a very short time allotted for poster presentations, ours attracted some good attention. You can read the abstracts about all of the posters by clicking here. . A review of these abstracts is planned for a future blog so that you can get an idea of where researchers and clinicians are putting their focus.

5. Perhaps the best part of the whole conference was the chance to network with other LBD people. We re-connected many specialists such as Dr. James Leverenz, with whom we once enjoyed doing a presentation and Dr. Tanis Ferman, a pioneer in recognizing the need for behavior management with dementia. We caught up with old LBDA friends, Angela Taylor and Mark Wall, and put a face on other LBDA staff that we'd known only virtually. We also met finally personally some people we've worked with virtually for years, such as Rosemary Dawson, Caring Spouses moderator, and Norma Loeb, who is the founder of a fairly new organization, the Lewy Body Resource Center in New York. (Check it out here. She has tons of information on her site!) We talked to active care partners often accompanies by their loved ones, which is something we love to do. And finally, we got to talk to some folks from other countries. We met and visited with several people from the UK, including the founder of the Lewy Body Society. We had a meal with a doctor and nurse from Korea. Although these women had read our book in English, they were excited to learn that it had recently been published in Korean. We had a good conversation with a doctor from Australia, comparing our nation's acceptance of alternative therapies. He reiterated something we had heard before, that Australians are much more accepting of these non-drug treatments than the traditional US medical system is. One thing we didn't do well was collect business cards and so we often remembered the people but not their names. (Note to self: do better at this next time.)

6. Personally, we had a chance to visit with family members in the Las Vegas area. This was good because this year has been a sad time for my family. We have recently lost two of our beloved family members. One, a nephew's wife, died after a long bout with Lewy Body Dementia. While we were sad to lose her, we were happy to know that she rests better now. The other was that nephew's younger brother. His death during what they thought would be a routine surgery to fix a long-lasting problem was unexpected and much more difficult to deal with. On a happier note, we also visited Jim's daughter who has moved with her husband to a community near Las Vegas. They weren't even moved in yet but they took us on a tour of their lovely new home, which includes a separate "casita" (one-room mother-in-law apartment) available for us when we come to visit.

The next blogs will be about information presented at the Las Vegas conference. You are in for a treat because Rosemary Dawson will be a guest blogger for some of this. I will also be reviewing the abstracts to give us an idea of researcher and clinician focus. Actually, the conference has provided us with a ton of information and over the next weeks, we will share some of that with you!

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

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

Friday, July 12, 2019

When Nothing Seems to Work, Part 4

Two weeks ago, the blog was a third in a series about those difficult to deal with dementia-related behaviors that just don't seem to respond well to the easy fixes. While nothing will work all the time, and different things work best for different people, there are some basic guidelines. As a review:
  • A care partner who has done the homework and has a fair understanding of how the dementia-riddled brain operates has a better chance of getting cooperation from a loved one than one who continues use old, once very workable methods of communicating.
  • When abstract thinking goes, emotions take over. Since the brain considers anything generating negative emotions a crises, these emotions take precedence over any other considerations.
  • The dementia brain has only one-track. Once an emotion is present, the door is closed to anything more. Therefore, a PlwD will often seem much more negative than before and very resistant to change. 
  • A person's basic way of relating to the people they care about doesn't change although it will disintegrate. Thus, a couple with a calm, empathetic relationship prior-dementia will likely fare better than the couple with more ups and downs, even when the couples are equally caring.
This week we are talking about something else that doesn't change. A PlwLBD will probably try to maintain control of their life in the same way as they always have--only more intensively. Some people deal with life-changing issues by wanting to know all about them. Others deal with them by denying their presence. Most do a little of both, not denying heavily but not wanting to own it totally either. The care partner's job is to figure out which style their loved one uses, accept it and work with it. This is especially true if their loved one's style is heavily towards gaining knowledge or towards denial.

The first is fairly easy to work with. You just share everything you learn with your loved one. Likely you don't need to be sensitive about sharing too much. The more they know the more secure they feel--even if it is bad. Then you can use this information to work with them:

When Harold got all upset about the people who were walking all over our lawn, I just told him that it was Lewy playing tricks on him again. He still saw the people but they didn't bother him anymore because he'd read all about hallucinations and how they could be so real. -- Anita

Anita was able to use Harold's need to know and understand his illness to get past his brain's insistence that the people on his lawn were real. This may or may not continue as Harold's LBD progresses and his ability to accept a different view--even one he supports--diminishes. Eventually, Anita may have to simply join his reality and chase the people off.

The people who prefer denial are more difficult to deal with. The sad thing is that this tends to get stronger as the dementia progresses.

Jerry has never liked going to the doctor although he didn't used to be as resistant about it as he is now. "The doctor has to earn his pay and so he'll find something even if nothing's wrong," he used to say. I finally got him to go to a specialist who diagnosed him with LBD but Jerry doesn't accept the diagnosis and he won't go at all now. I'm at my wits end. He refuses his medications too. "I'm just fine," he insists. "I'm not taking pills for something I don't have." -- Claudia

Jerry has always dealt with the unpleasant things in his life by ignoring them as best he could. Pre-dementia, he was able to choose what to ignore and what he knew he had to deal with. But now, his brain isn't able to make choices and so he denies it all because that has always been his first choice.


First, Claudia should avoid telling Jerry about doctor's appointments ahead of time. A PlwD's difficulty with time management means that they will usually deal with knowledge of future events by becoming anxious. If it is something they want, such as a visit to see grandchildren, the anxiety will be about missing the event. For Jerry, his increased anxiety will turn into more resistance. Instead, Claudia can try:
  • Joining his reality and suggesting that they go to the doctor for a checkup, just to show the doctor how well he is doing.
  • Threra-fibs, discussed in a couple of recent blogs. The "trick" type is most likely to work, especially that of suggesting a beloved outing and adding the doctor's visit as an "afterthought."
  • Simply putting her foot down and saying, "We are going. Now, come along." As a PlwD becomes more dependent and more accepting of their care partner's decisions, this is more and more likely to work. Claudia shouldn't expect Jerry to go to the doctor willingly, but at this point, going in any mood is better than not going at all. 
When Claudia is dealing with Jerry's negative feelings and resistance, she needs to be careful not to let Jerry's mood rub off on her. Although he has no choice but to act on what he feels, she CAN resist being pulled down by his mood. If she ignores his negativity, she might even get him to mirror her positive attitude!

As for medications,
  • Claudia might want to discuss with the doctor just how important the various pills are. If they are only marginally helpful, then allowing Jerry the feeling of control in refusing them might go further than the pills do in improving his self-esteem and therefore, his actions.
  • If the medications are important, then the trick type of thera-fibs discusses in earlier blogs may again be the best answer. By crushing the pills and putting them in something Jerry likes, Claudia may be able to get them down him. 
However, nothing works all the time and different things work with different people. You just have to remember how the dementia-riddled brain works and keep exploring new ways to work with it.

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

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

Friday, June 28, 2019

When Nothing Seems to Work, Part 3

Two weeks ago, the blog was about how the dementia-riddled brain causes a person to:
  • be stuck with the first, often negative view of an event
  • have very little empathy
Today's blog is about how emotions drive behaviors. Dementia doesn't damage emotions like it does thinking and memory. Emotions can remain long after the person living with dementia (PlwD) has forgotten what caused them in the first place. And then they get attached to a future event.

Many dementia-related behaviors are driven by a these residual negative emotions. If you can identify the emotion and speak to it instead of your loved one's words or actions, you will have much better chance of success. Many of these emotions are going to be about things like loss, fear of abandonment and lack of respect.

Being calm and patient is a good first step, but that alone may not be enough. You need to really listen to what your loved one is feeling, not just saying. Look deeper than the anger or frustration. These are secondary emotions. Look for the feeling behind them. Helplessness? Fear? Loss? Often it is loss. For example, when the PwlD is railing about a lost driver's license, It might really be a loss of independence, of adulthood, of manhood even.

When the doctor reported John's dementia to the DMV and he lost his license, he was very angry. "Why did she that do that?" he asked. Mary told him, "She's required to." That kept John from being quite so mad at his doctor, but he was still fuming. He complained "I don't have any say over my life at all any more." Speaking to his sense of loss, Mary said, "That Lewy, taking one more thing away from you. It just isn't fair" and even let herself sound a little angry. Mary was doing two things here. She was validating John's feelings, showing "I'm on your side" support, and she was giving him a target for his anger besides her or the doctor--"that Lewy." It did help. John calmed down and said, "Yes, it is, it's not for sissies," a phase they used often about the disease.

You may have been warned not to show anger for fear of increasing your loved one's angry behaviors. However, a mild show of anger can work if you are clearly expressing it in support of your loved one, not at them or at the situation they have caused. This makes them feel heard and supported, not discounted or controlled. Just make sure your anger is less intense then your loved one's. You don't want them to escalate their anger to match yours! Also be sure to follow up such expressions with more soothing expressions of support. "I love you just the way you are," Mary might tell John with a loving pat on the arm or even a hug.

This same technique can work with any other feeling of loss. The goal is to validate the feeling so that the PlwD can calm down. Without the negative feelings reigning, a person can think more clearly. This is true for anyone, including a PlwD. Mary may have to play out the above scene several times if John doesn't remember and again, wants to drive.

Of course, this won't work for everyone. For example, some PlwD don't want to own the disease and so it is difficult to make it the scapegoat. And that's what the next blog is about.

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

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

Friday, June 21, 2019

Summer Schedule

This week we are Conference bound and so we did the blog early in the week. Do check it out. Even if you won't be at the conference, you can download the information about our poster.

Next week's blog will be the third in our series on When Nothing Works. Then there will be another break for the 4th of July. Then on July 12th, the final blog in that series will appear. We aren't traveling this summer, but we are experiencing our first summer of over 110 degree temperatures and the lethargy that goes with that. Therefore, we will keep to our summer every other week blog schedule.

We hope you have a wonderful summer!

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

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

Monday, June 17, 2019

The International Lewy Body Dementia Conference

This week's blog is early because we wanted to get this information out to you in time for you to consider going. We will be there!

This conference, sponsored by the Cleveland Clinic and the LBDA, is a forum for research scientists, clinicians, and other health care professionals to share the latest information from each of their disciplines. In addition to highlighting the progress made in the various areas of research, this conference will provide an opportunity for patients and caregivers to be exposed to new knowledge and to interact with researchers, clinicians and other patients and caregivers.

Individuals who have been diagnosed with Lewy Body Dementia, their family members and their advocates are invited to attend.

For more information about the conference, you can click on the link below to download the Conference Brochure. It will open in a separate window.


To visit the conference website, you can click on the link below which will open in a separate browser window.


Not only will we be attending, we are joining Rosemary Dawson in presenting a poster on Tuesday, June 25th.

Poster: Non-drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Changes.

Presenters: Rosemary Dawson, Ed.D.; Helen Whitworth, MS, BSN; and Jim Whitworth, LBDA co-founder

You can click on the buttons below to get copies of the whole poster and of a slide presentation that Rosemary made from the poster information. Both will open in separate windows. Warning: These two files are very large and should not be opened on a cellular devise. The poster will appear very small on your browser; zoom in to see it better. You will need a PowerPoint program on your computer to view the slides.

Poster           Individual Slides             PowerPoint Presentation

To learn more about us and the presentation, you can also download the following documents:




Finally we have a special invitation to all of you:

Informal Meeting at the International Lewy Body Dementia Conference

If you are a conference attendee who is living with LBD, a LBD care partner, or someone who supports both, do plan to attend this informal meeting. It will give many of us who have met online a chance to meet person and those who have met already met a chance to reconnect.

WHEN: Monday, June 24th directly after the last session at 4:30 pm until the all-conference reception that begins at 6:00 pm.


WHERE: In the Patient and Care Partner conference room


WHO SHOULD ATTEND: People living with LBD, current and former LBD Care Partners, and people who support them (support group moderators and facilitators, Lewy Buddies, etc.). Spouses, family members, and others who are accompanying the above are also encouraged to attend.


WHAT TO EXPECT: This is an opportunity to mingle and network with others. We will also share some resources and information in an informal way.


RSVP: Not required; just show up. If you want to let us know that you will be there, email LewyBuddyRo@gmail.com.


QUESTIONS: Email LewyBuddyRo@gmail.com
We are looking forward to meeting many of you at this conference.


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

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

Friday, June 14, 2019

When Nothing Seems to Work, Part 2

Last week started a series on dealing with difficult behaviors. That blog noted that the first line of defense has to be the care partner's own self care. Only then can you expect to a) respond appropriately to your loved ones unwanted behaviors and b) avoid having your loved one react to your underlying and stressful feelings instead of what you are doing and saying overtly.

This week's blog is about how while dementia changes many things for both the person living with the disease and their care partner, not everything changes--or it only partly changes.

A person living with LBD (PlwLBD) is usually just a more difficult version of the person they were before. Likewise, the relationship you had with your loved one will likely be similar to what you had before, only there will probably be more negatives and these will be more extreme. That's because the dementia-riddled brain:
  • is one track, going first with the most demanding emotions, which will usually be negative.
  • processes in an all or nothing mode, so that any negativity at all will likely be exhibited as extreme.
We know a young couple who have a very stormy relationship. It cycles from angry arguments to passionate make-ups and back again. This works for them--now. Both of them would tell you that they are married to the love of their lives. "It keeps our relationship interesting and fresh," they say. Even so, I dread to think how that couple would fare if Lewy entered their lives!

Another couple we know are just as committed to their spouses. However, their relationship is much less bumpy and exciting. "We enjoy each other. We have our differences but we can usually talk it out," they say. This couple would probably be able to deal with Lewy much better.

Sadly, dementia multiplies the negatives in a relationship and often ignores the positives. It's the way the brain works. Negatives are given crisis status and therefore are the first to be noticed. That's fine as long as a person can think abstractly. Then, we can look past the negatives to the positives and see that they outweigh the bad. "A person with the ability to think abstractly might say, "I don't like the way my life has changed, but I still have many things to enjoy." The dementia-damaged brain can't do that. It stops with the first information it receives -- "I don't like the way my life has changed."

Even with help, the PlwLBD isn't going to be budged. This is their truth, their reality. Loving, patient explanations aren't going to change that. Angry, frustrated responses will only fix it firmer in place. All your efforts will do is cause your loved one to believe that you don't care and aren't even trying to see it their way--the only way.

Successful dementia care requires huge amounts of empathy in care partners. With it you can enter into a PlwLBD's reality and have a chance of useful communication. On the other hand, dementia takes away the PlwLBD's ability to empathize and so this isn't a two-way street. Don't expect a PlwLBD to understand your frustration, your fears, your worries or your hurt feelings. Instead, they will pick up the emotions you broadcast and mirror them back at you as their own anger and frustration--with no recognition of your feelings and no need to help you feel better.

Back to the couples mentioned earlier, the first couple dealt with their differences by fighting about them, with very little empathy for each other. The second couple made an effort to empathize and come to a mutually acceptable solution. If Lewy hits, empathy is going to go a lot sooner for the first couple than it will for the second couple. Again, what we were is what we get with Lewy, only worse!

The moral of this blog might be "Work to have positive, empathetic relationships while you are healthy because that becomes even more important--and more difficult--when illness hits! Of course, most of those who read this will be beyond the ability to prepare...you are already in the midst of dealing with the damage dementia causes! But all is not lost. Although the PlwLBD is beyond change, the dementia care partner still can. You can focus on being positive instead of broadcasting those volatile negative emotions. You can be empathetic and thus able to respond to your loved one's reality rather than your own.

Or you can if you've taken the first step and are making these efforts with a rested mind and body! But even then, nothing works all the time. It may not be because you "didn't do it right" but just because Lewy is being perverse and difficult. You just have step away, and then try something else...ask for help, ask for ideas.

New week, more about dealing the difficult behaviors and staying sane.

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

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

Friday, June 7, 2019

No RVing this Summer: The Cleveland International Lewy Body Dementia Conference Instead.

The second blog on the series of When Nothing Works will be here next week but this week, we wanted to make an announcement about our summer plans. We wanted our readers to know what was happening so that perhaps you could join us in Las Vegas later this month.

This year we are staying in Arizona for most of the summer. Jim has decided that the time has come for us to quit RVing. We both have issues that make this a smart, if unwelcome choice. Although we will miss RVing, we know that this is like the choice to stop driving altogether. It needs to be done before the minor problems cause bigger ones...and it works best when it is the driver who chooses to stop.

But we are going to take a couple of trips in our car. The first will be to Las Vegas, where we will be joining many other LBD caregivers, advocates and professionals at the Cleveland International Lewy Body Dementia Conference. On Tuesday, June 25, we will be presenting a poster: Non-drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Changes. Rosemary Dawson ED.D., who moderates the Caring Spouses and Life After Lewy groups and is very active with the LBDA, will be with us. In fact, she is the one who designed the poster with our input.

Our poster shows a a variety of non-drug methods for dealing with behaviors, most of them also included in our book, Responsive Dementia Care: Fewer Behaviors Fewer Drugs. If you come to the conference (and we hope you can!) be sure to come by and talk with us!

The conference is three days long with lots of LBD related subjects. It is divided into a Scientific Track and a Patient and Caregiver Track. We've attended both kinds and believe me, this is a blessing for those of us who aren't up on all the scientific language. However, we hope that if there is something we especially want to learn that isn't being presented in the caregiver track, we can cross over.

We are looking forward to learning more about biomarkers and imaging and much more to pass on to all of you.  Here is the brochure. Check it out and plan to come join us if you can. We'd love to meet you there!

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

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

Friday, May 31, 2019

When Nothing Seems to Work, Part 1

As educated care partners, we know a lot of techniques to use with our loved ones: be patient, be accepting, be empathetic, remember it's Lewy talking, go with the flow, keep my sense of humor, and on and on. But sometimes, none of it works. What then?

First, are you starting in the right place? Have you prioritized your self care? As educated care partners, we all know how important that is. But are you letting the urgencies of your loved one's care override your own seemingly less urgent needs? If you are, then no wonder nothing is working!

Before you can expect to be successful in managing your loved one's difficult behaviors, you have to be able to manage your own responses to those behaviors. Even when you know the correct response, you won't be able to do it if you are functioning in crisis mode. And that's where a care partner who has neglected their own needs can easily be. Overworked, tired, frustrated and hurting from back aches or more. This is the norm for many care partners.

"But I barely have time and energy to take care of my loved one. How can I be expected to spend more time and energy on self care?" they say. Like many of the things involved in dementia care, the answer to this question is that it may not be easy but it IS imperative. You, rested and alert, are your most important caregiving tool. You, overburdened and frustrated, are your most damaging caregiving tool. It is that simple! That's because:
  • your attitude is all important. When you feel harried and overburdened, it is difficult to be patient and easy to be irritable, difficult to respond positively and easy to react negatively. You are less likely to get the result you want--which causes you more stress, more frustration and more burden.
  • your loved one will pick up your feelings, personalize them and mirror them back at you, often magnified. Your stress becomes their anxiety. Your frustration with the situation becomes their anger at you.
Taking care of yourself involves time away from your loved one, time away from caregiving, time for yourself, doing things you enjoy. This is not selfish, frivolous or uncaring. Nor is it optional, any more than good wound care is optional. That is, you don't have to do it but if you don't, you pay the consequences. This blog isn't about how you can do this, but how you must, even if you have a limited budget. There are many ways and each care partner must choose which ones work best in their situation.

For ideas, see the many previous blogs on this site about self-care like this one, as well as many other online articles. Be sure to choose some in-the-moment practices, such as deep breathing. These shorter "quick fixes" help you to deal with immediate stress. Also choose some longer "me times", such as lunch with a friend or even a few days away. These longer respites allow you to relax, regroup and regain your focus. Revived, you can return alert and energized, ready to deal with issues that once seemed overpowering. You need both the quick fixes and the longer respites. Each plays a part in helping you deal successfully with the difficult behaviors that dementia presents to a care partner.

With ongoing self care, you can be a more alert, rested, relaxed, patient, positive, accepting, empathetic and responsive care partner. (Never perfect, mind you, but not the easily frustrated and irritated person we tend to become when we feel overburdened.) Only then can you hope to deal successfully with your loved one's difficult behaviors. Until then, you are working at cross purposes, trying to fix a damaged system with weak and failing tools--tools that actually foster worse behaviors, not better ones.

Next week, more about dealing with difficult behaviors, focusing on some of the things that can't be changed but might be worked around.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Responsive Dementia Care: Fewer Behaviors Fewer Drugs Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.