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What Caregivers Should Know About Lewy Body Dementia and Its Unique Challenges

The often misunderstood disease comes with unpredictable symptoms and high demands, but peer support can help ease the caregiving burden

Paul Wynn,

AARP

En español

Published July 16, 2026

Carla Preyer (left with her husband Patrick) and Linda Szypula (right with Preyer and bottom with her husband Jim) bonded over caring for their spouses who were diagnosed with Lewy body dementia.

AARP (Courtesy Linda Szypula and Carla Preyer)

Key takeaways

Unlike other dementias, Lewy body dementia can change dramatically, requiring caregivers to constantly adapt to their loved one’s unpredictable needs.
Treatment focuses on managing disease symptoms, allowing patients to function better and easing the day-to-day burden on family caregivers.
Research shows Lewy body dementia caregivers experience greater emotional and physical strain, highlighting the need for better peer support and resources.

Linda Szypula, 60, still remembers the moment she met Carla Preyer, 64, in person for the first time. After years of late-night Zoom calls, support group check-ins and shared crises unfolding across thousands of miles, the two women finally stood face-to-face. They didn’t hesitate. They hugged and held on.

Their caregiving journeys had already been defined by the slow decline of their spouses from Lewy body dementia. Szypula’s husband, Jim, and Preyer’s husband, Patrick, died almost four years ago, just a few months apart.

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“It felt like I was meeting someone who already knew the parts of my life I couldn’t fully explain to anyone else,” says Szypula, who lives in Plymouth Meeting, Pennsylvania.

What began as a caregiver connection during the most isolating years of their lives has since become something deeper: a lasting bond forged through medical challenges, grief and a shared commitment to change how others understand and experience the disease. Their stories were captured in the documentary, Facing the Wind, now available on PBS.

A misunderstood disease

For years, Lewy body dementia remained largely in the shadow of Alzheimer’s disease. That changed to some degree in 2014, when it was revealed that actor and comedian Robin Williams had been living with the disease until he died by suicide at age 63 later that same year. Media mogul Ted Turner’s diagnosis and recent death in May 2026 at 87 from Lewy body dementia once again generated national attention on a disease that affects an estimated 1.4 million Americans.

Forever friends: Linda Szypula (left) and Carla Preyer (right) at the premier of the documentary, Facing the Wind, which followed several families impacted by Lewy body dementia.

Courtesy Linda Szypula and Carla Preyer

Despite being the second most common form of progressive dementia after Alzheimer’s, Lewy body dementia is significantly underdiagnosed, experts believe. It's characterized by abnormal protein deposits, known as Lewy bodies, that disrupt brain function.

The condition shares biological features with both Alzheimer’s and Parkinson’s, contributing to diagnostic confusion.

“The fact that Robin Williams's family and Ted Turner talked about Lewy body dementia brought much-needed awareness to millions of people who otherwise might never have heard of this disease,” says Norma Loeb, a former caregiver and executive director of the Lewy Body Dementia Resource Center. “My hope is that their stories will lead to earlier, more accurate diagnoses, increased research and ultimately spare other families from the uncertainty and heartbreak so many of us have experienced.”

“What makes Lewy body dementia different is its unpredictability,” says Dr. Jason Cohen, a neurologist with Montefiore Einstein in the Bronx, New York. “A person can seem completely engaged one moment and profoundly confused the next.” The disease's “roller-coaster nature,” Cohen adds, "makes it especially difficult for caregivers.”

Searching for treatment and diagnostic advances

Renewed interest in studying Lewy body dementia is fueling hope for long-awaited breakthroughs in treatment. Researchers are testing promising new therapies, including zervimesine (CT1812), an experimental drug that recently produced encouraging results and could advance into the final stages of testing this year.

Although no medications have been approved by the Food and Drug Administration specifically for Lewy body dementia, that doesn’t mean patients have no treatment options, Cohen says. Currently, clinicians focus on managing its many symptoms with medications and supportive care. Treatments can help ease hallucinations, cognitive changes, movement problems, sleep disturbances, constipation, blood pressure fluctuations and mood or behavioral symptoms, often improving quality of life for both patients and caregivers.

“We have medicines that we know work and work very well,” Cohen says.

Cohen is hopeful that blood biomarkers will play a greater role in the future as new disease-targeted treatments become available. “For now, LBD remains primarily a clinical diagnosis,” he says.

Significant caregiver burden

Mary Lou Falcone became a caregiver after her husband, illustrator Nicky Zann, began exhibiting subtle but puzzling changes in behavior late in 2016. What started as occasional confusion, paranoia and difficulty with routine tasks escalated after his triple bypass surgery the following year, when he developed hallucinations, greater confusion, severe fatigue and Parkinsonian symptoms.

Peer support for caregivers

LBD Caring Spouses: Online support group
Lewy Body Dementia Association: Support group finder
Lewy Body Dementia Resource Center: Caregiver support groups
Lewy Body Roller Coaster: Support groups
Lewy Body Support Group: Facebook group

After more than two years of questioning several doctors in New York City about these symptoms, the couple found out in March 2019 that Zann’s diagnosis was Lewy body dementia. Falcone, while working as a classical music public relations strategist, cared for him at home until his death in July 2020.

Falcone adapted to the disease’s unpredictable nature, with its good days and bad. Her caregiving journey inspired her to write I Didn’t See It Coming, a book chronicling both her husband’s journey and the lessons she learned about preserving dignity, practicing patience and finding moments of resilience amid the challenges of caregiving.

Falcone also writes candidly in her memoir about three of the most challenging aspects of caring for a spouse with LBD: fluctuations, incontinence and hypersexuality. “Some of the most heartbreaking symptoms of Lewy body dementia are also the most misunderstood. When these behaviors appear, caregivers need to offer support, not judgment, because they are manifestations of the disease, not a reflection of the person you love,” says Falcone.

She continues, “I learned the hard way that you can’t fight the unpredictability of the disease but have to learn to ride the roller coaster, creating an atmosphere of love, care and often sacrifice.”

Peer support to offset the challenges

Falcone’s experience reflects a growing body of research showing that the challenges she faced are not unique. Researchers are increasingly recognizing that caring for someone with Lewy body dementia places an especially heavy physical and emotional burden on family caregivers — often exceeding that seen with other forms of dementia.

For more than a decade, Dr. Jori Fleisher, a neurologist at Rush University Medical Center in Chicago, has been studying the extraordinary caregiver toll of the disease. Her work has shown that compared with caregivers of people with Alzheimer’s, Lewy body dementia caregivers experience higher levels of strain, depression, sleep disruption, musculoskeletal injuries such as back pain and overall caregiver burden.

“The unique combination of unpredictable symptoms creates caregiving demands unlike those seen in most other dementias,” says Fleisher.

The foundation for Fleisher’s research began with an innovative home-based care program for people with advanced Parkinson’s and Lewy body dementia who had become too disabled to travel to medical appointments. An interdisciplinary team consisting of a neurologist, nurse and social worker made regular home visits over the course of a year, providing specialized medical care, addressing safety concerns and connecting families with community resources.

The program helped slow declines in patients’ quality of life, but it also revealed that caregivers who participated in the home-based care and peer mentoring program, compared with a control group, did not experience the typical increase in caregiver strain over time.

Satisfaction with the program was exceptionally high, with 96 percent of participants reporting positive experiences. Caregivers spent about 45 minutes with their mentor, although many spoke for up to two hours each week. The program also fostered a strong sense of community and purpose, with half of participating caregivers expressing interest in becoming mentors themselves and 90 percent of mentors volunteering to participate again, underscoring the lasting value of peer-to-peer support.

The program has grown from a small pilot project into a nationwide, National Institutes of Health-funded randomized controlled trial, called PERSEVERE, involving 682 Lewy body dementia caregivers across 46 states, including 180 experienced caregivers trained as peer mentors.

Szypula and Preyer understand the value and need for peer support. They first connected through an online support group for caregivers and individuals affected by Lewy body dementia, where their long-distance friendship and shared caregiving journey formed. Szypula still belongs to three support groups, including one for women who have lost their husbands to Lewy body dementia. “The emotional struggles that we faced brought us together,” says Szypula. “There were so many moments of uncertainty, but we understand each other in ways that few people can.”

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Paul Wynn, a veteran health care writer, has spent over a decade immersed in the caregiving community, both as a family caregiver and as a journalist covering caregiving issues for national publications.

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