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

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.