LBD Awareness Month

From its start, raising awareness has been a part of the Lewy Body Dementia Association’s mission. For example, its brochure contains such comprehensive information that I call it the Cliff Notes for LBD. The LBDA has designated October as LBD Awareness Month, and has invited volunteers to help spread the word. People across the country have been quite creative: races, sales, cultural events, and more. Each event increases awareness, which in turn makes it more likely that LBDers and their families will receive the treatment and understanding they need—and deserve.

Promoting LBD awareness has been Jim’s mission for years. It’s the reason he co-founded the LBDA, the reason we wrote our book, A Caregiver’s Guide to Lewy Body Dementia and the reason we are now offering our LBD Trainer’s Kit to care facilities. Like all LBD survivors, Jim has his story: His first wife, Anique, was diagnosed with Alzheimers in 1999. Jim, a computer engineer, naturally went to the internet for information where he found that her symptoms matched LBD better than they did Alzheimers. But when Jim told this to Anique’s doctor, the man said, “I’ve never heard of that,” and continued to treat her for Alzheimers. (Go to LBDtools.com for more about his story and mine.)

Looking back, it was no surprise that Anique’s doctor had never heard of LBD. After all, it had only been identified as a specific disease in 1996. But fast forward to 2011: This summer, a residential care facility administrator told us, “Our staff doesn’t need your training because it [dementia care] is all about the same.” And when we mention Lewy body dementia to the general public, we still get more blank looks than we do recognition. I read somewhere that it takes about 20 years for a “new” disease to become known. In that case, LBD still has five years to go—until 2016.

Even though it is already October, it’s not too late to accept the LBDA’s invitation to increase LBD Awareness. The need continues throughout the year. And so visit the LBDA on Facebook for ideas about how you can be a part of their LBD Awareness campaign. Some are as easy as sharing a press release provided by the LBDA with your local newspaper. If you want to organize a community outreach event, go to www.lbda.org/go/awareness and download campaign materials. Let’s not wait until 2016---or later! Let’s make LBD better known NOW!

Support Groups

We had the honor of being invited to attend an LBD Support Group recently. It reaffirmed our belief in their value. They remind caregivers that they aren’t alone. Others are having the same or similar issues. When one member talked, we saw others nodding their heads. Yes, they’d been there. They knew. And sometimes, they had an answer. Something that has worked for them and might work for the speaker.

Like most support groups, there were people there in different stages of caregiving. A woman considering residential care with great guilt but equally great exhaustion. Another who had been through the same experience not long ago and was now beginning to see how she, with some restorative “me time” in the evenings, was able to be a better caregiver for her loved one. One woman who asked a question that received several answers but none she hadn’t tried: “I feel better knowing I’ve done all I can.”

A lone man in the group asked, “Do women ever get LBD?” And the unspoken question, once that was answered positively, was “and why aren’t the male caregivers here—the husbands and sons?” Sadly, we seldom see many men in support groups—even the online ones. They miss a lot.

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Delusional Misidentification

Delusional mis-identification is a common symptom for our LBD loved ones. According to Carrah L. Martin, 2009, these delusions, each with its own name, can be about times, places, objects, person, including self, and even body parts. Jo’s mother believed that Jo was an imposter who had replaced her real daughter (Capgras Syndrome). Marie shared that her husband insisted that his home was the imposter (reduplicative para-amnesia). As caregivers, knowing a type of delusion's particular name is less important than knowing how to deal with it.

Judy said she didn’t feel she could go along with her spouse’s delusions. “Years ago, I promised him I’d never tell him a lie.” In the LBDA’s July Lewy Body Digest, an excerpt from A Caregiver’s Guide to Lewy Body Dementia talks about making and keeping promises to our LBD loved ones. The bottom line is “Never make a promise you can’t keep.” Of course, after the fact, you may discover that what you thought was an easily kept promise is now harmful to your loved one.

When LBD takes away our loved one’s ability to reason, the rules change. Imagine how you would feel if the most important person in your life refused to accept what you know with every part of your being is true. You’d be hurt, right? And when someone with LBD hurts, they tend to act out, which at best, is uncomfortable for both you and your loved one, and may at times be quite unsafe. If you can show your loved ones that you are working WITH them to find a solution to their very real and quite distressing problem, they will feel supported and there will be fewer acting out behaviors.

Judy is not lying when she accepts her husband’s delusion enough to move him in a more comfortable direction. She is joining his reality. You don’t have to agree directly. Jo can tell her mother, “All right, Mrs. K., I’m leaving. Jo will be back soon.” And Marie might say, “You might as well take a nap while we're here. I’ll stay awake and make sure you're safe.” Or even, “While you're resting, I’ll get us back home.” No specific strategy is guaranteed to work, but generating the feeling that “we are in this together” will go a long ways towards calming your loved one.

Adding up the Statistics: 60% of All Dementia Patients Have Lewy Body Dementia!

We still hear Lewy body dementia refered to as a "rare dementia."  However, in his recent article, Confronting 100 Years of Confusion about Lewy Body Dementia, Dr. James Leverenz, University of Washington, Seattle, states, “… up to half of Alzheimer’s disease patients have the “Lewy body variant” [Lewy bodies in the brain upon autopsy] … and most Parkinson’s disease patients develop dementia….” Here are some statistics:

• 60-80% (let’s say 70%) of all dementia patients have Alzheimer’s. (Alz. Assn.)
• 20% of all dementia patients are diagnosed with a Lewy Body Dementia. (LBDA.org)
• Many  Parkinson’s patients develop dementia but never see a dementia specialist and are not included in the LBD statistics.

For the percentage of all dementia patients with LBD, we can add: 

• the approximately 35% of dementia patients with both AD and LBD, per Dr. Leverenz,
• the 20% of those diagnosed with LBD,
• and a very conservative 5% for the unidentified number of Parkinson’s patients with undiagnosed LBD.

That's a conservative 60%. We can safely say that LBD is no longer rare.

Dementia and Creativity

For the last six weeks, the Aspen Ridge Memory Care Center in Bend OR, (http://aspenridgememorycare.com/) has been focusing on resident creativity, hoping to increase quality of life, thus decreasing behavior symptoms and the need for drugs. Director Terrye Alexander said, “We replaced activities like Bingo, which were meaningless to our residents, with creative activities." She showed us beautiful paintings, thoughtful poems, and colorful sculptures—all done solely by residents. And not just art and poems--they also have a choir and a dance group.

“We build on past experiences," Terrye explained, pointing to a not-so-well manicured courtyard. "We leave the weeds out there for our our two master gardener residents to pull. Past housekeepers/housewives can set the tables in the dining room and fold laundry.” Past secretaries can sit at a desk in a small room, with an old fashioned typewriter and a phone, type up mailing labels and put them on envelopes. "It was really hard to find that typewriter, but it was worth it," Terry commented. The same small room becomes a counseor's office on occasion. Terrye told us, “One of our residents was a school counselor. When we have high schoolers come here to do public service, she sits here in her ‘office.’ We tell the teens they can go in and tell her anything they wouldn't want to tell their parents.”

Down the hall, in a room where some surprisingly alert residents were guessing the proverb or saying a staff person was trying to illustrate on a dry erase board. “She isn't even a very good artist, but we are amazed at how well they do.” Terrye and her staff also try to get the residents more active—in fun ways. “We had a beach party last week, with sand on the ground outside, and played volley ball.”

Already, Terrye says they can see a change in behavior. The residents are busier, more interested in life and more alert. “We are using fewer drugs and yet we have few behavior crises,” she said. “And with the addition of more physical activity, we’ve also seen more stability and less falling.”

Family caregivers of LBD loved ones can adapt many of Terrye’s ideas for home use. And don’t forget simple touching. Mike De Sousa, in his Column #34 (http://www.ablestable.com/) reminds us that sometimes “we can forget that being creative is not always focused on the skills of the mind, but as much on our sensory connection with those close to us. As our loved ones get nearer the end, touch may be the most comforting type of creativity, transmitting a reassuring sense of connection and peace.

The Beatitudes: A Facility That Does Understand LBDers

The Beatitudes (http://www.beatitudescampus.org) is nationally recognized for their care of dementia patients who, like many of our LBD loved ones, have been shuttled from one facility to another as “too difficult” or “too aggressive.” And even more impressively, they do it—and do it well—with few drugs and no increase in staff.

Beatitudes Training Director Tena Alonzo was giving us a tour of the facility when a woman came down the hall and stood silently in front of us, radiating tenseness. “Hello, dear,” Tena said as she took the woman’s hands in hers and simply stood with her. After a while, Tena let go and reached up to gently cup the woman’s face. “I knooww,” she crooned. The woman stood there with little expression, passively accepting what Tena did and said. Finally, the interaction must have felt complete for she turned away and left. “She has such a hard time talking,” was all Tena said to us.

This interaction is a powerful example of how the Beatitudes works. Even though Tena knew we were on a tight schedule, she ignored us for those few minutes and made herself totally present with the woman, moving and talking at her speed, in her time—and she let the woman terminate the interaction.

Tena and the rest of the Beatitudes staff have changed the rules and the methods the industry thought necessary for dementia care. And then they did research showing that their methods work. They have found that when a facility provides a stress-free environment and trains their staff to recognize and respond to dementia patients' needs, these patients are more contented, less disorderly and seldom need those drugs that are so dangerous to our LBDers.

Care facilities just don't get (understand) it"--but they can.

“They just don’t get it.” That’s what Dr. Sababagh told us about care facilities and LBD. Dr. Sabbagh was one of the speakers at the 2011 Arizona Alzheimer’s Consortium Conference. He is also a local expert on LBD.

“Do you mean that because the staff in these facilities don’t understand LBD, their LBD patients act out more and have more hallucinations and other LBD related problems?”

“Yes, they just don’t get it,” he repeated.

And so often, they don’t. They don’t “get” (understand) our loved ones’ sensitivity to medications and why they act out so much more when given the same medications that their other patients do fine with. They don’t get our loved ones sensitivity to stimulation—to anything that is “too much” – too much noise or sunlight or excitement. Expecting the gradual decline of an Alzheimer’s patient, they don’t get our loved one’s ups and downs and often believe they are faking, or lazy, or obstinate. They don’t get “showtime” and believe that it demonstrates what our loved ones could be like all the time if they only wanted to be.

But there’s hope. In many cases our loved ones respond better to the care of well-trained staff than they do to medication. (And isn’t that wonderful, considering all the problems they have with medication!) The Beatitudes, of Phoenix, AZ, report that their regimen of caring behavior management eliminates the need for most medications. Caregivers nationwide have told us about loved ones who had become unmanageable in a facility clueless about LBD are now doing well in a “Lewy-savvy” facility.

Any care facility can easily become Lewy-savvy. If your loved one is in a facility, do suggest our LBD Training Kit. Even if the staff appears to be well trained, new staff will need training. Our kit is designed to give facilities the tools they need to do their own LBD training—no need to find an outside expert. And if you are already familiar with our book, A Caregiver’s Guide to Lewy Body Dementia, you know the content will be trustworthy and supportive of your loved ones. Send them to our website: http://lbdtools.com

Thoughts about PiB, a PET scan compound

We attended the Arizona Alzheimer’s Consortium Scientific Conference today. Our keynote speaker was Dr. W. E. Klunk, the inventor of PiB, a compound used with PET scans to identify Alzheimer’s plaques. Most of the information was way over our heads but we did come away with some thoughts:

1. When Dr. Klunk talked about comparing the results of PiB scans with later autopsy results, we learned that if PiB finds plaques, there’s a 97% chance of AD* on autopsy. Since Lewy bodies do not show up on a PiB scan, one would hope that it could be used to differentiate AD and LBD. You know, if the scan shows plaques, the dementia is AD and if it doesn’t show plaques, the dementia is likely LBD. Not so, because 24% of the time, a PiB scan doesn’t find plaques that do show up later on autopsy.

2. And here are some more statistics. According to Dr. Klunk, autopsies show that 40% of AD patients also have Lewy bodies—and that 80% of DLB* patients will have AD. (We also learned that is unusual for a patient with PDD* to have AD pathology—but this is another, if equally interesting issue, to be discussed in a later entry.) Therefore, even if the PiB worked perfectly, i.e., identified all patients with AD, there would still be many patients with accompanying, but unidentified, LBD.

For LBDers, these figures are sad. It means that because AD is known so well, many physicians will stop at diagnosing the AD and the accompanying LBD may never be diagnosed. Or it is diagnosed only after a serious reaction to some medication that would never have been given to someone with known LBD.

* Acronyms:

AD: Alzheimer's disease

DLB: Dementia with Lewy bodies (the LBD where demenia appears first)

PDD: Parkinson's with dementia (where Parkinson's appears first)

The Three Stages of Dementia, including LBD

This week, we attended the Arizona Alzheimer’s Consortium Annual Conference and learned that researchers now define dementia with three major stages, not just two:

o Dementia, which has long been recognized as the time when cognitive abilities are so impaired that one can no long manage one’s own life.

o Mild Cognitive Impairment. This is when one’s memory (or thinking for our LBD loved ones) is impaired but a person can still function fairly well in their daily life. MCI has also been recognized for several years.

o Asymptomatic Dementia. This is a new step just added by researchers. It is where there are no cognitive symptoms but the brain is showing definite changes. The hope is that if such pre-symptomatic patients can be identified, then treatment and prevention may be easier. This makes sense. We all know it is easier to treat a disease before it becomes full blown and out of control.

This information certainly applies to LBD. In fact, people who are at risk for LBD are much easier to identify than those at risk for AD. That’s because several of LBD’s many non-cognitive symptoms often show up earlier in life. Two prime examples of this are Parkinson’s disease and REM Sleep Behavior Disorder (RBD).

Of course, the problem is that so far, treatments are only symptomatic. They help, but they don’t cure. And so we continually hope that our researchers will find a better answer. That’s why it is so important to support clinical trials, donate brains and give money to those groups that support dementia research.

Welcome to our blog. We're new at this but we hope to share some of the information we've learned in our journey with Lewy body dementia. Just a little history first:

Jim became aware of this disorder in 1999, when his first wife, Anique, was diagnosed with Alzheimer's. Jim researched it on the internet and found that her symptoms better fit something called "Lewy body disease." In 2003, he and some other LBD caregivers started the Lewy Body Dementia Association (lbda.org). I didn't join the bandwagon until 2005, when she married Jim. A retired nurse, educator, writer and artist hopeful, I added another dimension to Jim's mission and we started doing programs about LBD, and eventually wrote a book, Riding a Rollercoaser with Lewy Body Dementia. And in 2010, we wrote A Caregiver's Guide to Lewy Body Dementia, published by Demos Medical Publishing. Now we have perfected a system whereby care facilities can easily do the programs we have been doing for years. You can find out about our LBD Training Kit at lbdtools.com.