By Mary Lou Falcone

Did you know that Lewy body dementia (LBD) is the second most common form of progressive dementia after Alzheimer’s disease, affecting at least 1.4 million Americans? Plus, more people have LBD than ALS, muscular dystrophy, and cerebral palsy combined. And more people have LBD than are HIV-positive.

LBD is frequently misdiagnosed, as it can mimic Alzheimer’s disease, and more often than not prompts  the questions “Lewy what?” and “How do you spell that?” 

The biggest distinguishing factor of LBD from the other progressive dementias, especially Alzheimer’s disease, is that cognitive awareness fluctuates. Some days the person with LBD is 100 percent with it, understanding everything, and the next day may not even know who you are.

Approximately two months before he died, my beloved husband, Nicky Zann, wrote a poem about what it feels like to be trapped by Lewy body dementia. Here now, to bring awareness from an insider’s viewpoint to this underserved disease, I share Nicky’s poem on how dealing with LBD affected our relationship and our lives.

“The photo on the wall     

 if I’m not mistaken, was     

taken when our love was      

just brand new.     

“It was not long ago, when   

we were making the plans,      

to love each other strong    

and be true.     

“A devil in our home,     

used deception to corrupt     

the loyal angel that     

my heart knew.     

“An instant into this      

cruel and hateful reception     

vengeance replaced the heart that once     

beat true.      

“With blinding rage, and searing pain

a ready knife filled my hand.

I thrashed with intent

cutting them down and never

was the same again.

“While I wait, for my date     

with the hangman and his chore      

and by chance I see my      

reflection     

that less than human sight that     

haunts each tortured night     

that stranger in the mirror is me. . .”

I found this poem three months after Nicky passed and instantly knew that I was meant to find it posthumously. After the initial shock, what it gave me was affirmation that Nicky knew what was happening to him right to the end and that he needed to share it, he needed to help others understand.

It is our hope, Nicky’s posthumously and mine currently, that understanding a bit more about Lewy body dementia will help caregivers, as well as those who are experiencing the disease, know that you are not alone.

Mary Lou Falcone (maryloufalcone.com) is a classical-music publicist and the author of “I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia.”  Her husband, Nicholas “Nicky’ Zann,” was a 1950s rock ‘n’ roll musician and a cartoonist and painter.

ABOUT LEWY BODY DEMENTIA

Lewy body dementia (LBD) is the second most common form of progressive dementia after Alzheimer’s disease, affecting at least 1.4 million Americans, most of them 50 or older. It often is misdiagnosed. Robin Williams, the actor and comedian, didn’t know he had it when he died; instead, doctors had told him he had Parkinson’s disease. LBD can cause visual hallucinations, significant lack of alertness, rigid muscles, slowed movement, and tremors, according to the Lewy Body Resource Center. More information is available at lewybodyresourcecenter.org and mayoclinic.org.

When a fragrance wafted through the bedrooms of older adults for two hours every night for six months, memories skyrocketed.

Participants in a study by University of California-Irvine neuroscientists reaped a 226 percent increase in cognitive capacity compared to another group that received less exposure to scents. The researchers said the study transforms the long-known tie between smell and memory into a non-invasive technique for strengthening memory and potentially deterring dementia.
The study, whose results were reported in August, involved men and women 60 to 85 years old who don’t have memory impairment. All were given a diffuser and seven cartridges, each containing a single and different natural oil. Some received full-strength cartridges, while others were given the oils in tiny amounts. The cartridges were activated for two hours as participants slept.

Cognitive performance was measured by a word list test commonly used to evaluate memory. Participants also reported sleeping more soundly.

Scientists have long known that the loss of olfactory capacity, or ability to smell, can lead to neurological and psychiatric diseases, including Alzheimer’s and other dementias, Parkinson’s, schizophrenia, and alcoholism. Researchers previously found that exposing people with moderate dementia to up to 40 different odors twice a day boosted their memories and language skills, eased depression, and improved their olfactory capacities.

Having people experience the odors while sleeping eliminates “the need to set aside time for this during waking hours,” said Cynthia Woo, one of the researchers.

How Medicare covers preventive healthcare

SAVVY SENIOR

By Jim Miller

Dear Savvy Senior,

How does Medicare cover preventive health screenings? I’m due to get a physical and a colonoscopy this year, but I want to find out what I’ll have to pay for before I go in.

Just Turned 65

Dear Just Turned,

You’ll be happy to know that Medicare covers a wide array of preventive and screening services to help you stay healthy, but not all services are completely covered.

Most of Medicare’s preventive services are available to all beneficiaries (through Part B) completely free with no co-pays or deductibles, as long as you meet basic eligibility standards. Mammograms; colonoscopies; shots against flu, pneumonia, COVID-19 and hepatitis B; screenings for diabetes, depression, osteoporosis, HIV, various cancers and cardiovascular disease; and counseling to combat obesity, alcohol abuse, and smoking are just some of Medicare’s covered services. But to get these services for free, you need to go to a doctor who accepts Medicare “on assignment,” which means he or she has agreed to accept the Medicare approved rate as full payment. Also, the tests are free only if they’re used at specified intervals. For example, cardiovascular screening blood tests once every five years; or colonoscopy once every 10 years or every two years if you’re at high risk.

Medicare also offers a free “Welcome to Medicare” exam with your doctor in your first year, along with annual “Wellness” visits thereafter. But don’t confuse these with full physical exams. These are prevention-focused visits that provide only an overview of your health and medical risk factors and serve as a baseline for future care. 

Cost-sharing

There are a few Medicare preventive services that require some out-of-pocket cost-sharing. You’ll have to pay 20 percent of the cost of the service after you’ve met your $226 Part B yearly deductible. The services that fall under this category include glaucoma tests, diabetes self-management trainings, barium enemas to detect colon cancer, and digital rectal exams to detect prostate cancer. For a complete list of services along with their eligibility requirements, visit Medicare.gov/coverage/preventive-screening-services.

If you’re enrolled in a Medicare Advantage (Part C) plan, your plan is also required to cover the same preventive services as original Medicare as long as you see in-network providers.

You also need to know that while most of the previously listed Medicare services are free, you can be charged for certain diagnostic services or additional tests or procedures related to the preventive service. For example, if your doctor finds and removes a polyp during your preventive care colonoscopy screening, you will pay 15 percent of the doctor’s service fee. Or, if during your annual wellness visit, your doctor needs to investigate or treat a new or existing problem, you’ll probably be charged. You may also have to pay a facility fee depending on where you receive the service. Certain hospitals, for example, will often charge separate facilities fees when you’re receiving a preventive service. And you can also be charged for a doctor’s visit if you meet with a physician before or after the service.

To eliminate billing surprises, talk to your doctor before any preventive service procedure to find out if you may be subject to a charge, and what it would be.  

Jim Miller is a contributor to NBC TV’s “Today.” Send senior questions for him to Savvy Senior, P.O. Box 5443, Norman, OK 73070, or at savvysenior.org.

Telehealth has pluses and minuses

Telehealth can save money and healthcare resources, but only when it’s used for certain types of illnesses, according to a new study.

Researchers at the University of Texas-Austin’s McCombs School of Business found that telehealth didn’t significantly reduce costs or the number of future visits to emergency rooms or specialists for circulatory, respiratory, and infectious diseases. Other medical issues fared much better, however.

Telehealth is the term for patient-doctor visits or consultations via video chats by computer or phone, instead of the more traditional in-person appointments.

“People believed that telehealth would be the next big thing, the future of healthcare,” said Indranil Bardhan, a professor of information, risk and operations management who co-authored the study. “But our research shows that its impact is not as straightforward as people might think. It’s more nuanced.”

In the study that was published in the journal Information Systems Research, Bardhan and co-authors Sezgin Ayabakan of Temple University and Zhiqiang Zheng of the University of Texas-Dallas examined telehealth through the theory of replacing physical interactions with virtual ones. Based on a separate study of patient visits across all hospital-based outpatient clinics in Maryland from 2012 to 2021, the new study revealed that telehealth visits reduced the overall number of future outpatient visits within 30 days of a telehealth encounter by 14 percent, saving $239 in total outpatient costs per patient.

Behavioral health, metabolic disorders, dermatology, and musculoskeletal disorders saw the greatest positive impacts from telehealth. But for diseases of the heart or lung, or involving infection, symptoms are more difficult for patients to communicate and for doctors to observe in a video consultation. These limitations resulted in no benefit from virtual care, Bardhan said.

Bardhan said he hopes the new research can help enable more efficient use of resources by encouraging healthcare professionals to focus telehealth on treating specific diseases and conditions where it can do the most good.

“The effectiveness of telehealth is really a function of the type of disease that it’s used to treat,” he said.