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The Lewy Body Dementia Association (LBDA) is the leading national organization dedicated to improving the lives of those living with Lewy body dementia (LBD), the second most common form of neurodegenerative dementia affecting approximately 1.4 million people in the United States alone.
To optimize the quality of life for those affected by Lewy body dementia, we accelerate awareness, advance research for early diagnosis and improved care, and provide comprehensive education and compassionate support.
LBD is a disease that does not discriminate. It has and will continue to affect individuals from every gender identity, race, religion, sexual orientation, and socioeconomic background. Because of this, LBDA focuses on serving all individuals affected by LBD. It is imperative that our organization continues to be intentional in growing our understanding of the challenges faced by individuals living with LBD. LBDA is committed to advocating for equity and inclusion in research and making access to clinical care and support accessible to all.
Educational resources to assist individuals with LBD, their families and healthcare providers.
Find the latest information and research to increase awareness and understanding of LBD.
LBDA s 2026 Community Webinar Series, Insights, Innovations & Everyday Impact, features a free, monthly webinar to help you live optimally with Lewy.
Whether you give once, or throughout the year, give so that no one will face LBD alone. Give today.

Beyond Stages: Making Sense of Change in Lewy Body Dementia

Living Well with Lewy: A Day of Learning, Connection and Hope

"NO Whiners" Miles for Minds Lewy Body 5K

Diagnosing Dementia Beyond Alzheimer's: Biomarkers, Clinical Insight, and Lived Experience

Living Well with Lewy: Education, Connection and Empowerment

A Day with Lewy: Lewy Body Dementia and the Caregiving Journey

Tri for Lewy Half-triathlon Relay

The Alzheimer's Connection: Co-Pathology in Lewy Body Dementia

Join Lewy Buddies volunteer program

Give

Events for Wednesday, September 23, 2026

Creative Unwind for Lewy

LBD As 2024 Impact Report 2167c48467

ALLISON FELDMAN

VIVIAN NORELUS

NATALIE HERNANDEZ

Marguerite Edwards

YVONNA OGELSBY

SHAMILLA CARR

UNIQUE DIAZ

LENA FUNG, MJ

TAMARA BROWN

ANNA BLANCHET

JULIA WOOD, MOT, OTR/L

RACHEL ROSE, MOT, OTR/L

EMMANUEL SAMUEL

RACHEL POMBERG

ALEXANDRA QUALLS

SUDHIR SIVAKUMARAN, PHD

KEITH FARGO, PHD

EILEEN PRIEST

GLORIEUSE PUGH, BHS, PMP

BRANDI HACKETT, LCSW, C-ASWCM

JENNIFER CURRY, MPH

MIA WATLER, LCSW

A grandson who turned helplessness into a lifelong mission to find answers. A father of three who found “the brightest light” in community after his diagnosis. A 12-year-old who organized a dance-a-thon to honor her grandfather. A husband and care partner who describes his wife as “my person.” These are journeys of courage and purpose from the #Lewybodydementia community. Your generous donation will create meaningful connections, give hope, and ensure no one has to face Lewy alone. Read their stories and give today at the 🔗 in bio. #Dementia #DementiaCare #TogetherWeCan #LivingWithLewy

November is #NationalFamilyCaregiversMonth, and this year’s theme, “Care Connects Us,” is a reminder that for every journey with #Lewybodydementia, care connects us to those we support, to vital information, and to one another. For care partners of people living with Lewy, the Lewy Body Dementia Association offers a wide range of free educational programs and support services, including a nationwide network of support groups. Find resources and support at the 🔗 in our bio.

What if slowing #Lewybodydementia meant addressing more than one change in the brain? And what if you, or someone you care for, could help find out? That question is now being tested in a clinical trial that is open and enrolling. In June, we shared that TRAILBLAZER-ALZ 7 was getting underway. Study sites are now open and looking for volunteers. Read more about the link between Alzheimer’s and Lewy, and the TRAILBLAZER-ALZ7 Study for People with Lewy. 🔗 in bio. #DementiaResearch #Neurology #Neurodegeneration #BrainHealth

There is less than one week until the final conference in the Lewy Body Dementia Association (LBDA) 2026 Community Conference Series, “Living Well with Lewy: A Day of Learning, Connection and Hope,” taking place on Saturday, November 7 at 8:00am PT. With presentations from leading clinicians, researchers and subject matter experts from LBDA, Cleveland Clinic, and LBDA Research Centers of Excellence at the University of Florida and University of Washington, this community conference will focus on advancing your understanding of #Lewybodydementia. 🕗 November 7, 2026. 8:00am PT 📍 Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, NV, or online 🔗 Register now at the link in our bio. Living Well with Lewy: A Day of Learning, Connection and Hope is presented by the Lewy Body Dementia Association in collaboration with Cleveland Clinic Lou Ruvo Center for Brain Health.

Light up the night for #Lewybodydementia (LBD)! ✨ Join the Memory Forward Glow Run 5K and 1-Mile Fun Run/Walk on Saturday, Nov. 7, in Jupiter, FL. Wear your brightest colors and glow gear as we light the course together. Register at the 🔗 in our bio.

Thank you for being a part of Lewy Body Dementia Awareness Month. From the introduction of the first-ever U.S. Senate resolution recognizing #LBDAwarenessMonth to new ways to learn, connect, and take action, you are moving Lewy body dementia beyond awareness toward real understanding. As the month comes to a close, remember that the resources, support, and connections we highlighted are here for you all year long. Explore our resources. 🔗 in bio. #Lewybodydementia #UnderstandingChangesEverything #Dementia

Progress in #Lewybodydementia (LBD) care begins with understanding the symptoms you are seeing at home. A simple screening can help you learn if the ILLUMERA Study – a clinical trial exploring hallucinations or delusions in LBD - may be a fit. Take the next step to learn more. 🔗 in bio.

Your health story is as unique as you are, and your firsthand experience with #Lewybodydementia provides invaluable insights into its complexities. Put your understanding into action. Enroll in the Lewy Trial Tracker to receive notifications about the latest clinical studies that may interest you, or for which you may qualify. Sign up today. 🔗 in bio. #UnderstandingChangesEverything #LBDAwarenessMonth

The Lewy Body Dementia Association extends its deepest condolences to the family and friends of Sir Patrick Stewart, beloved actor and star of ‘Star Trek’ and ‘X-Men,’ who passed away Wednesday, October 28, from Alzheimer’s disease and #Lewybodydementia. He was 86. 📷 Anders Krusberg / Peabody Awards, CC BY 2.0 (creativecommons.org/licenses/by/2.0)

In high school, Dr. Jeremy Tanner saw the toll his grandmother’s dementia took on her and his family. His feelings of helplessness fueled a lifelong mission to find answers for families facing neurodegenerative diseases. Today, as a neurologist and researcher at the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases at the University of Texas Health Science Center at San Antonio, Jeremy leads LBDA’s Clin-SYN biomarkers study. Jeremy says, “The Lewy Body Dementia Association has played a critical role in bringing together the patient community, scientific community, and industry partners to move research forward faster.” Help us help those living with #Lewybodydementia (LBD) to live well. By making a generous donation today, you are accelerating LBD awareness, advancing research for early diagnosis and improved care, and providing comprehensive education and compassionate support for those in need. Read Jeremy’s story and more journeys of courage and purpose, and give today. 🔗 in our bio. #Dementia #DementiaResearch #Neurodegeneration #Memory

Join us online or in person for the final conference of the Lewy Body Dementia Association’s (LBDA) 2026 Community Conference Series, Living Well with Lewy: A Day of Learning, Connection and Hope. With presentations from leading clinicians, researchers and subject matter experts from LBDA, Cleveland Clinic, and LBDA Research Centers of Excellence at the University of Florida and University of Washington, this community conference will focus on advancing your understanding of the symptoms of #Lewybodydementia (LBD), providing practical approaches and techniques to navigate cognitive, emotional and visual changes that occur, preparing for palliative care, supporting the needs of LBD care partners, and integrating activities into daily life to create meaningful experiences and enhance quality of life, with a keynote address by Angela Lunde, MA. 🕗 November 7, 2026, 8:00 am – 4:30 pm PT 🏢 Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, NV or Online 🔗 Register now at the link in our bio. Living Well with Lewy: A Day of Learning, Connection and Hope is presented by the Lewy Body Dementia Association in collaboration with Cleveland Clinic Lou Ruvo Center for Brain Health. #Dementia #DementiaCare #ClinicalCare #Neurodegeneration

Looking for reliable updates on #Lewybodydementia (LBD)? Keep your understanding growing with the Lewy Digest, our free monthly e-newsletter for the LBD community. Get the latest on advances in research, upcoming events, and helpful resources for those #LivingwithLewy, families and care partners. Subscribe today. 🔗 in bio.

Unlike some other dementias, #Lewybodydementia (LBD) does not have clearly defined stages, which can make it hard to know what to expect. Join us on Nov. 17 at noon ET for our community webinar, “Beyond Stages: Making Sense of Change in Lewy Body Dementia.” Lucille Carriere, PhD, and Dylan Wint, MD, will discuss why LBD progression is better understood as a pattern of changing needs rather than a step-by-step stage model. You will learn how to recognize meaningful changes, communicate with health care providers, adapt routines, and plan for a fluctuating journey. Register today. 🔗 in bio. #Dementia #DementiaCaregiver #Neurodegeneration #LBDACC2026

There is always more to learn about #Lewybodydementia (LBD), and the Lewy Body Dementia Association is here to help you keep going. Take free, on-demand courses anytime and anywhere with the NEW Lewy Learning Center app. Tune in to LBDAtv on YouTube for webinars featuring leaders in the field and real-world perspectives from the LBD community. Find these resources and more. 🔗 in bio. #LBDAwarenessMonth #UnderstandingChangesEverything

#Lewybodydementia (LBD) can cause changes in thinking, movement, mood, sleep, communication and perception. While these changes can be challenging for the person living with Lewy, it can also be difficult for family members and care partners who are trying to understand what is happening and how best to help. For the person living with LBD, daily experiences may feel confusing, frustrating or unpredictable. Many individuals describe feelings of loss, fear, or uncertainty as they adapt to life with a progressive condition. For care partners, the experience is often marked by concern, worry, and the challenge of responding to changes they may not fully understand. They may grieve the loss of familiar routines, roles, or interactions while balancing responsibilities and emotional stress. Because both perspectives are valid and often difficult, regular conversations can strengthen understanding and connection. Consider setting aside time to ask simple questions of each other. The goal is not to solve every problem, but to listen with curiosity and empathy. By creating space for honest conversations, people living with LBD and those who support them can learn from one another, reduce misunderstandings, and build stronger partnerships. For more ideas and information, contact LBDA’s Support Services Team directly by email at support@lbda.org, by contacting us online or by leaving a message on the Lewy Line at 800-539-9767.

Before “Uncle Lewy” (as Todd Doty often calls #Lewybodydementia) entered his life, he was a jet-setting IBM executive and father of three. Around 2017, Todd started noticing subtle cognitive challenges that made everyday tasks difficult. Through years of testing and appointments, doctors repeatedly dismissed Todd’s concerns as depression. But he knew it was something more serious. In 2021, after suffering a stroke, a neurologist finally gave him a diagnosis: LBD. Feeling isolated and frightened, he found support and community through the Lewy Body Dementia Association (LBDA). Today, Todd is a Lewy Buddy and leader of an LBDA support group. “The biggest thing was finding people who understood what I was going through,” says Todd. “That sense of community has been the brightest light.” Help us help those living with Lewy to live well. By making a generous donation today, you accelerate LBD awareness, advance research for early diagnosis and improved care, and provide comprehensive education and compassionate support for those in need. Read Todd’s story and more journeys of courage and purpose, and give today. 🔗 in bio. #DementiaAwareness #DementiaSupport #LivingwithLewy #TogetherWeCan

Looking for answers, support, or a way to make a difference? This #LBDAwarenessMonth, you will find all three, and more. Learn about #Lewybodydementia, connect with others who understand, and find ways to take action, all in one place. Link in bio. #UnderstandingChangesEverything #DementiaCaregiver #Neurodegeneration

Every discovery brings us closer to answers. From earlier, more accurate diagnosis to better treatments, research is deepening our understanding of #Lewybodydementia (LBD). During #LBDAwarenessMonth, catch up on the latest advancements from the @LewyBodyDementiaAssociation’s research partners and the broader LBD research community. Read the latest research news. 🔗 in bio. #Dementia #DementiaResearch #UnderstandingChangesEverything #Neurology

Now available on LBDAtv: “Diagnosing Dementia Beyond Alzheimer’s: Biomarkers, Clinical Insight and Lived Experience,” featuring Yasar Torres-Yaghi, MD. In this webinar, Dr. Torres-Yaghi explores the diagnostic complexity of dementia syndromes with a special focus on #Lewybodydementia, offering practical strategies to recognize early signs, reduce misdiagnosis, and support timely, accurate care to improve outcomes. Watch on LBDAtv. 🔗 in bio. #Dementia #DementiaAwareness #Alzheimers #Neurology

Join the #Lewybodydementia (LBD) community on November 7 in Jupiter, FL, for the Memory Forward Glow Run 5K and 1-Mile Fun Run/Walk, a student-led evening of movement, hope and support for families affected by LBD. Register today. 🔗 in bio. #Dementia #DementiaAwareness #TogetherWeCan

Help start conversations about #Lewybodydementia (LBD) in your community, long after LBD Awareness Month ends. Your free sticker pack includes LBDA and Understanding Changes Everything stickers. Packs are available while supplies last. Request yours today! 🔗 in bio. #LBDAwarenessMonth #UnderstandingChangesEverything

Explaining #Lewybodydementia to someone new is not always easy, but a simple card can help start the conversation. LBDA's free “I Have LBD” Awareness Cards help the people you meet understand that you may need extra patience and support. There is one for people living with Lewy and one for care partners. 👉 Download and print yours at the link in our bio. #Dementia #DementiaAwareness #DementiaCaregiver

Parkinson’s IQ + You is a free, in-person event presented by The Michael J. Fox Foundation for Parkinson's Research, designed to empower you to manage the disease, learn about the latest research and connect with local resources. The accompanying Partner Expo includes information on treatment options and local resources for the Parkinson’s community. 📆 October 24 @ 9:00 am ET in National Harbor, MD. Register today at the link in our bio. #Lewybodydementia #ParkinsonsDisease #Neurology #DementiaAwareness

Should participants in research studies be offered the option to receive their individual test results? For people living with Parkinson's disease or dementia with Lewy bodies (DLB), that question has rarely been studied. Learn about a new national survey, led by Melissa J. Armstrong, MD, MSc, FAAN, and Hannah Fechtel Jury, MPH, at the University of Florida's Dorothy Mangurian Clinical-Research Headquarters for Lewy Body Dementia — an LBDA Research Center of Excellence — aiming to change that. With funding from The Michael J. Fox Foundation and support from the @LewyBodyDementiaAssociation, and building on earlier focus group findings, the team is asking people with Parkinson's or DLB, and their care partners, how they feel about receiving research results. Read more at the 🔗 in our bio. #Dementia #DementiaResearch #Neurology #Neurodegeneration #Lewybodydementia

One moment of understanding can change lives. This month, join us in moving beyond awareness toward real understanding of #Lewybodydementia (LBD). 💜 LBD affects an estimated 1.4 million people in the U.S., and its impact reaches far beyond the person diagnosed, touching care partners, families, and friends. Find trusted education, connect with support, and request your free sticker pack. 🔗 in bio. #LBDAwarenessMonth #UnderstandingChangesEverything #Dementia #Caregiver

Join the @LewyBodyDementiaAssociation's (LBDA) 2026 Community Conference Series for a day of learning, connection and hope. With presentations from leading clinicians, researchers and subject matter experts from LBDA, Cleveland Clinic, and LBDA Research Centers of Excellence at the University of Florida and University of Washington, this community conference will focus on advancing your understanding of #Lewybodydementia. 🕗 November 7, 2026. 8:00am PT 🏢 Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, NV, or online 🔗 Register now at the link in our bio. Living Well with Lewy: A Day of Learning, Connection and Hope is presented by the Lewy Body Dementia Association in collaboration with Cleveland Clinic Lou Ruvo Center for Brain Health. #LBDACC26 #Dementia #DementiaAwareness #Neurology

#Lewybodydementia (LBD) is the second most common form of progressive dementia in the United States — yet it remains widely misunderstood and frequently misdiagnosed. The Lewy Body Dementia Association (LBDA) is working to change that. Your generous donation to LBDA accelerates awareness, advances research for early diagnosis and improved care, and provides comprehensive education and compassionate support. LBDA connects and inspires people across the LBD community. Read their stories and give today. Link in bio. Together, we are #LewyStrong.

In one of the last actions before the United States Senate left for their current recess, Senator @CoryBooker of New Jersey introduced S. 910, a resolution for the Senate to support the designation of October as Lewy Body Dementia Awareness Month. The @LewyBodyDementiaAssociation worked closely with Senator Booker's office on the drafting and introduction of this measure, and it is the first time such a resolution has been introduced in Congress. While this resolution is non-binding, it is an exciting and significant moment in our continued work to increase awareness of #Lewybodydementia (LBD) with the federal government. We are incredibly grateful for Senator Booker’s support, and we will continue our efforts to grow and nurture bipartisan sponsors of this resolution. Read more at the 🔗 in bio. #LBDAwarenessMonth #UnderstandingChangesEverything #DementiaAwareness #BrainHealth

In “Diagnosing Dementia Beyond Alzheimer’s: Biomarkers, Clinical Insight and Lived Experience,” on Oct. 15 at 1:00pm ET, Dr. Yasar Torres-Yaghi will explore the diagnostic complexity of dementia syndromes with a special focus on #Lewybodydementia. He will be joined by individuals living with Lewy who will share their diagnostic journeys, highlighting delays, challenges, and pivotal moments along the way. Register now. 🔗 in bio. #Dementia #DementiaAwareness #Alzheimers #Neurology

How is #Lewybodydementia (LBD) diagnosed and what comes after diagnosis? Understanding LBD starts with knowing how doctors approach diagnosis, which healthcare professionals can help, and what to expect in terms of prognosis. 👉Tap the link in our bio to learn more about diagnosis and prognosis this #LBDAwarenessMonth. #DementiaAwareness #Memory #Neurology

No one should face #Lewybodydementia (LBD) alone. Whatever you are feeling, and wherever you are in your journey, there are people who understand. More than 10,000 individuals across the U.S. receive support through LBDA’s private Facebook support pages. Every number represents a person: someone living with Lewy, a care partner navigating daily challenges, someone newly diagnosed, or a loved one grieving and healing. That community is here for you, too. Looking for connection and support? Find the group that fits your journey. 🔗 in bio. Please note: Participation is limited to individuals residing in the U.S. #LBDAwarenessMonth #UnderstandingChangesEverything

Recognizing #Lewybodydementia (LBD) is more than putting a name to what is happening. Early recognition, diagnosis, and treatment can improve quality of life for people living with Lewy Swipe through to learn why the right diagnosis matters and what care can look like, then share it with someone who should know. 👉 Learn more about LBD at the link in our bio. #UnderstandingChangesEverything #LBDAwarenessMonth

If you have a Donor-Advised Fund (DAF), #DAFDay is a great day to put it to work for families facing #Lewybodydementia. A grant from your DAF to the Lewy Body Dementia Association advances research, accelerates awareness, and provides education and support services for people living with Lewy and their care partners. It is a simple way to support a cause you care about during #LBDAwarenessMonth. Learn how to give through your DAF at the 🔗 in our bio.

Join us in-person or online for the final conference in LBDA’s 2026 Community Conference Series, “Living Well with Lewy: A Day of Learning, Connection and Hope,” on Saturday, November 7 in Las Vegas, NV. With presentations from leading clinicians, researchers and subject matter experts from LBDA, Cleveland Clinic, and LBDA Research Centers of Excellence at the University of Florida and University of Washington, this conference will focus on advancing your understanding of the symptoms of #Lewybodydementia (LBD), providing practical approaches and techniques to navigate cognitive, emotional and visual changes that occur, preparing for palliative care, supporting the needs of LBD care partners, integrating activities into daily life to create meaningful experiences and enhance quality of life. This conference will also feature a keynote address by Angela Lunde, MA. Register now. 🔗 in bio. Living Well with Lewy: A Day of Learning, Connection and Hope is presented by the Lewy Body Dementia Association in collaboration with Cleveland Clinic Lou Ruvo Center for Brain Health. #LBDAwarenessMonth #UnderstandingChangesEverything #LBDACC2026

#Lewybodydementia (LBD) can affect more than memory and movement. Hallucinations and delusions are common with LBD; and researchers are studying new ways to address them. Learn more about the ILLUMERA Study and see if participation may be an option: https://ow.ly/uHPE50ZW41A

Understanding grows when we learn together. This #LBDAwarenessMonth, join us for webinars, conferences, community events, and more. Save the dates and register early, because space for some events is limited. Explore the full calendar. 🔗 in bio. #Lewybodydementia #Dementia #DementiaAwareness #UnderstandingChangesEverything

Deepen your understanding of how #Lewybodydementia (LBD) differs from Alzheimer’s and other dementias, and why diagnostic complexity requires clinicians to look beyond common assumptions with “Diagnosing Dementia Beyond Alzheimer’s: Biomarkers, Clinical Insight and Lived Experience“ on Oct. 15 at 1:00pm ET. Featuring Yasar Torres-Yaghi, MD, this webinar explores the diagnostic complexity of dementia syndromes with a special focus on LBD and offers practical strategies to recognize early signs, reduce misdiagnosis, and support timely, accurate care to improve outcomes. Register now. 🔗 in bio. #Dementia #Alzheimers #DementiaResearch #DementiaSupport

The @LewyBodyDementiaAssociation’s (LBDA) 2026 Community Conference Series is coming to Peoria, AZ, on Saturday, October 10. Join us for Living Well with Lewy: Education, Connection and Empowerment to hear presentations from leading clinicians, researchers and subject matter experts from LBDA and LBDA’s Arizona Collaborative Research Center of Excellence which includes Mayo Clinic and Banner Sun Health Research Institute. This conference will focus on advancing your understanding of the symptoms of #Lewybodydementia (LBD), providing practical approaches and techniques to navigate cognitive, emotional and visual changes that occur, preparing for palliative care, supporting the needs of LBD care partners and so much more. Register today. 🔗 in bio.

Awareness is a starting point. Understanding goes deeper. #Lewybodydementia (LBD) can look different from person to person. Knowing how it presents is an important step toward an earlier, more accurate diagnosis and care that fits. Swipe through to learn what LBD is and its most common symptoms, then share it with someone who should know. 👉 Explore the "Is It Lewy?" booklet, the Comprehensive Symptoms Checklist, and more free resources. Link in bio. #LBDAwarenessMonth #Dementia #DementiaAwareness #LewyBody

A diagnosis that finally has a name. A conversation that finally makes sense. A connection that meets you wherever you are. #Lewybodydementia (LBD) affects approximately 1.4 million people in the U.S. For them, and for the care partners, family members and healthcare team beside them, moments like these can change everything. This October, join the Lewy Body Dementia Association during #LBDAwarenessMonth because #UnderstandingChangesEverything. 🔗 in bio.

Watch expert presentations, community webinars, and conversations with people living with #Lewybodydementia, all in one place. Subscribe to LBDAtv today. 🔗 in bio.

Now available on LBDAtv: "The Alzheimer’s Connection: Co-Pathology in Lewy Body Dementia,” featuring Shannon Chiu, MD, MSc. In this webinar, Dr. Shannon Chiu explored what we know about Alzheimer's disease (AD) co-pathology in #Lewybodydementia (LBD), what it means for the course of the disease, and why it matters for research happening right now. Dr. Chiu also discussed two current studies of co-pathology in LBD — the Clin-SYN biomarker study and the TRAILBLAZER-ALZ 7 clinical trial — and why you may want to consider participating. Watch on LBDAtv. 🔗 in bio. #Dementia #DementiaResearch #Alzheimers #Neurology

The Lewy Body Dementia Association’s (LBDA) 2026 Community Conference Series is coming to Green Lake, WI, on Thursday, October 8. With presentations from leading clinicians, interdisciplinary panels of subject matter experts, voices and lived-experiences from the #Lewybodydementia (LBD) community, and a keynote address from Angela Lunde, MA, “A Day with Lewy: Lewy Body Dementia and the Caregiving Journey” is designed to deepen your understanding of the symptoms of LBD, help you understand its impact, and empower you with resources and strategies to improve quality of life. Register now at the 🔗 in our bio. A Day with Lewy: Lewy Body Dementia and the Caregiving Journey is presented by LBDA in partnership with Wisconsin Aging & Disability Resource Center and SSM Health.

The 13th Annual LBD Walk for Awareness is happening today. 💜 Thank you for helping us reach our goal! From Jamison, PA, to communities across the country, we are walking together to raise awareness of #Lewybodydementia and create a better future for those living with the disease. Where are you walking from? Share your photos and stories below and use #LBDWFA13 and #LBDWalkforAwareness to connect with the #LBDcommunity!

We are nearly there! 🥳 Tomorrow is the 13th Annual LBD Walk for Awareness, and we have officially reached our goal of raising $30,000 to help move awareness, research, and hope for families facing #Lewybodydementia forward. Whether you walk in honor, in memory or in support, every step helps strengthen a growing community committed to ensuring no one faces Lewy alone. Join us in Jamison, PA, or host a fundraiser and walk from wherever you are. 🔗 in bio.

October’s #LBDAwarenessMonth is nearly here! 💜 Sign up now to receive emails throughout the month with information and opportunities to learn more about #Lewybodydementia (LBD), along with the latest research news, educational programs and upcoming events. Connect with the LBD community today. 🔗 in bio. #Dementia #DementiaAwareness #DementiaSupport #DementiaResearch #BrainHealth

Join us for a morning of remembrance, community and raising awareness of #Lewybodydementia (LBD) on October 24 in Charlotte, NC. The “NO WHINERS” Miles for Minds: Lewy Body 5K brings family, friends and the Charlotte community together in honor of Mike Keenan, a beloved father and grandfather who passed away from LBD earlier this year. Mike was known as a generous, tough guy who hated whining and never complained while facing the challenges of the disease. Register to join or create a fundraiser. 🔗 in bio. #DementiaAwareness #DementiaSupport #TogetherWeCan

Take part in research exploring new treatment options for hallucinations and delusions in #Lewybodydementia (LBD). The ILLUMERA study will evaluate an investigational drug for LBD psychosis that may help reduce these symptoms and allow researchers to learn more and move us closer to better treatment options. Find study sites and eligibility requirements at the 🔗 in our bio. #LewyBody #Dementia #DementiaResearch #Neurology #BrainHealth

What does Alzheimer’s disease have to do with #Lewybodydementia (LBD)? Many people living with Lewy also have Alzheimer's disease (AD) pathology — the amyloid plaques and tau tangles associated with AD — in their brains at the same time. This co-pathology may affect how LBD looks and progresses — but what does that actually mean for people living with LBD and their care partners? This World Alzheimer’s Day, register to join neurologist Dr. Shannon Y. Chiu, MD, MSc, for “The Alzheimer’s Connection: Co-Pathology in Lewy Body Dementia” on September 24 at 1:00pm ET. Dr. Chiu will explore what we know about AD co-pathology in LBD, what it may mean for the course of the disease, and what researchers are learning through current research and clinical trials. Register to join us. 🔗 in bio. #LivingwithLewy #Alzheimers #DementiaAwareness #DementiaSupport

The journey through moderate and advanced dementia with Lewy bodies (DLB) — and through the end of life — remains one of the least understood parts of the disease, owing to a lack of research focused on its later developments. Most studies focus on the disease's early aspects, when diagnosis is the central challenge. Far less is known about what drives symptom progression later in DLB, what shapes quality of life for people living with DLB and their care partners as the disease advances, and how treatment strategies might be adapted to meet the distinctive needs of this group. A new study published in the journal Neurology takes an important step toward filling that gap — and in doing so, identifies a factor that may be influencing some of the most burdensome features of moderate to advanced DLB. Read the results. 🔗 in bio. #Lewybodydementia #DementiaAwareness #DementiaResearch #Neurology #DLB #BrainHealth

Walk in honor, in memory or in support. You can help strengthen a growing community committed to ensuring no one faces #Lewybodydementia alone. Every step we take for the 13th #LBDWalkforAwareness on Sunday, Sep. 27 is a step toward hope, and walking is just the beginning. Create or join a fundraising team, share your story, and invite friends and family to support you. Every dollar raised brings us closer to a future where #livingwithLewy means living well. Walk with us in Jamison, PA or join the walk virtually. 🔗 in bio.

Walk, run and help leave #Lewybodydementia (LBD) behind. Join the LBD community on Oct. 17 in Lakeville, MA for the Leaving Lewy Behind 5K Walk or Run, an event dedicated to raising awareness of LBD and supporting the individuals, families and care partners impacted by the disease. This event honors the life and legacy of Scott Ashely, an avid-cross country runner, devoted father and outdoor enthusiast who was diagnosed with LBD in 2021. Register today. 🔗 in bio. #DementiaAwareness #DementiaSupport #Memory

Parkinson’s IQ + You is a free, in-person event presented by @MichaelJFoxOrg, designed to empower you to manage the disease, learn about the latest research and connect with local resources. The accompanying Partner Expo includes information on treatment options and local resources for the Parkinson’s community. 📆September 19 @ 9:00 am CT in Arlington, TX Register today. 🔗 in bio. #Dementia #DementiaAwareness #Parkinsons #BrainHealth

Many people living with #Lewybodydementia (LBD) also have Alzheimer's disease (AD) pathology — the amyloid plaques and tau tangles associated with AD — in their brains at the same time. This overlap, known as co-pathology, is more common than many people realize, and it can affect how LBD looks and progresses. But what does that actually mean for someone living with Lewy, or for the people who care for them? Join us for “The Alzheimer’s Connection: Co-Pathology in Lewy Body Dementia” on September 24 at 1:00pm ET to find the answer. Register at the 🔗 in our bio. #Dementia #DementiaAwareness #DementiaSupport #Caregiving #Alzheimers

The Lewy Body Dementia Association’s (LBDA) 2026 Community Conference Series brings together experts, trusted partners and the #Lewybodydementia (LBD) community for a day of education, empowerment and support. Together we will explore strategies for improving quality of life, provide trusted education, and share practical resources to navigate life with confidence and resilience. The series continues with two conferences in October. Learn more ⬇️ 👤 A Day with Lewy: Lewy Body Dementia and the Caregiving Journey on October 8 in Green Lake, WI Presented by the Lewy Body Dementia Association in partnership with Wisconsin Aging & Disability Resource Center and SSM Health. 👥 Living Well with Lewy: Education, Connection & Empowerment on October 10 in Peoria, AZ. Presented by the Lewy Body Dementia Association in partnership with LBDA's Arizona Collaborative Research Center of Excellence. Register for both conferences at the 🔗 in our bio.

On #GrandparentsDay, celebrate the grandparents who have shaped your life with an honor tribute in their memory on LBDA’s Facebook page. Whether you remember their stories, their guidance, their laughter or simply the moments you shared, an honor tribute is a meaningful way to carry their memory forward while helping raise awareness of #Lewybodydementia (LBD). Your gift helps advance research, expand education and provide compassionate support for those affected by LBD. Honor someone special today. 🔗 in bio.

Looking for a meaningful way to get active and support the #Lewybodydementia community? Register for TRI for Lewy on Sep. 26 at 9:00am GT in Solon, IA to take part in a half-triathlon relay bringing people together to raise awareness for those affected by this difficult disease. Inspired by her mother’s experience #livingwithLewy, race director Lindsay Weinschenk created this event as a meaningful way for families, friends, coworkers and community members to come together for a day of movement, connection and purpose. Register at the 🔗 in our bio.

The #Lewybodydementia (LBD) community is coming together from across the nation on Sunday, September 27 - and we would love to have you with us. 💜 Help make the 13th Annual LBD Walk for Awareness this year one to remember and join us in Jamison, PA or virtually from wherever you are. Join us at the 🔗 in our bio. Last year, supporters like you helped us raise $30,000 to support families living with Lewy. This year, we are working together to reach that goal again, and every walker, fundraiser, donation and shared story can help us get there. Walk with us. Share your story. Help move awareness, research and hope forward.

Join us for Living Well with Lewy: Education, Connection & Empowerment, a free conference focused on advancing your understanding of the symptoms of #Lewybodydementia (LBD), provide practical approaches and techniques to navigate cognitive, emotional and visual changes that occur, preparing for palliative care, supporting the needs of LBD care partners and so much more. Hear from leading subject matter experts from the @LewyBodyDementiaAssociation and LBDA’s Arizona Collaborative Research Center of Excellence which includes @MayoClinic and Banner Sun Health Research Institute. 📆 October 10 in Peoria, AZ 🔗 Register now at the link in our bio. Presented by the Lewy Body Dementia Association in partnership with LBDA's Arizona Collaborative Research Center of Excellence.

Now available on LBDAtv: “From REM to Reality: How Sleep Shapes Neuropsychiatric Symptoms in LBD," featuring Jesse Cohen, MD. This webinar explores how disruptions in REM sleep, dream enactment, and nighttime restlessness connect to daytime challenges such as #hallucinations, fluctuations in thinking, mood changes, and behavioral symptoms. Learn why sleep and neuropsychiatric symptoms are so closely linked in #Lewybodydementia, what signs to watch for, and how improving sleep quality can support better daily functioning and well‑being. Watch on LBDAtv. 🔗 in bio. #Neurology #DementiaSupport #DementiaCare #SleepHealth

The Lewy Body Dementia Association will be closed for Labor Day on Monday, September 7. We will resume normal hours on Tuesday, September 8. Our Support Services team will be away from the Lewy Line during this time. Send us an email at support@lbda.org or leave a message at 800.539.9767.

Living with #Lewybodydementia (LBD) can be overwhelming, not just because of problems with memory or movement, but also because of symptoms like seeing or hearing things that are not there (hallucinations) or developing strong beliefs that are not true (delusions). The purpose of the ILLUMERA Study is to evaluate an investigational drug for LBD #psychosis that may help reduce these symptoms and allow researchers to learn more and move us closer to better treatment options. Explore the study. Link in bio. #Dementia #DementiaTreatment #ClinicalStudies #BrainHealth

Together, we are walking #Lewybodydementia (LBD) awareness forward. 👟💜 Join us for the 13th Annual Walk for Awareness in Jamison, PA, or participate virtually from wherever you are. Walk alongside a community united by a common goal: creating a better future for those affected by LBD. Every registration, donation and shared story helps raise awareness of one of the most misdiagnosed forms of dementia while advancing education, research and compassionate support for the LBD community. Join us in-person or online. 🔗 in bio. Every dollar raised brings us closer to our $30,000 goal and helps create a better future for those facing LBD.

On #NationalGriefAwarenessDay, we recognize that grief can take many forms. In "Coping with Ambiguous Loss in Lewy body dementia," social worker Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G, defines and explores the very real experience of ambiguous loss with people living with #Lewybodydementia and their care partners, offering insight into their experiences and the ways they cope with the changes and losses that can accompany the disease. Watch on LBDAtv. 🔗 in bio. #DementiaAwareness #DementiaSupport #Grief

Join us in Solon, IA on September 26 for TRI for Lewy, a half-triathlon relay bringing people together to raise awareness for those affected by #Lewybodydementia (LBD). Open to all athletic abilities, TRI for Lewy offers you the flexibility to complete the course at your own pace while supporting the LBD community. Learn more and register your team. 🔗 in bio. #DementiaAwareness #DementiaSupport #TogetherWeCan

"Suddenly, everything made sense — but it came far too late." After years of searching for answers, Pamela's husband, Jim, was diagnosed with #Lewybodydementia just eight months before he passed away. Today, Pamela is honoring his legacy by naming LBDA in her estate plans, hoping to help other families find answers sooner. As #MakeAWillMonth comes to a close, consider including LBDA in your estate plans. A legacy gift helps accelerate research, expand education and ensure families facing Lewy never have to navigate the journey alone. Learn more about planned giving. 🔗 in bio.

Your health story is as unique as you are, a testament to your resilience in the face of the challenges of living with #Lewybodydementia. Your firsthand experience with this disease provides invaluable insights into its complexities. Sign up for the Lewy Trial Tracker to receive notifications about the latest clinical studies that may interest you, or for which you may qualify. Start changing the future. Link in bio. #DementiaResearch #DementiaAwareness #BrainHealth

The @LewyBodyDementiaAssociation’s new LBD Awareness Cards offer a simple, discreet way to communicate needs, reduce misunderstandings and support everyday interactions with #Lewybodydementia. Designed with options for both individuals living with Lewy and care partners, these printable cards can help foster greater understanding and confidence while navigating restaurants, stores, travel and other public environments. Download, print and share this free resource. 🔗 in bio. #DementiaAwareness #DementiaSupport #Caregiving #BrainHealth

Get ready to walk with us at the 13th Annual LBD Walk for Awareness on September 27! 💜 Together, we can bring hope to the 1.4 million Americans living with #Lewybodydementia. Walk with us from wherever you are, create a fundraising team, invite friends and family to join you, and share your story online! Whether you walk in honor, in memory or in support, every step helps strengthen a growing community committed to ensuring no one faces Lewy alone. Every dollar raised brings us closer to our $30,000 goal and a better future for those #livingwithLewy. Join us in-person or participate virtually from wherever you are. 🔗 in bio. #TogetherWeCan #LBDWFA13 #DementiaAwareness

No one should have to face #Lewybodydementia alone. The @LewyBodyDementiaAssociation wants you to know that support is within reach. We are here for you with compassionate support, helpful resources, and understanding during your journey. Connect with our Support Services team by calling the Lewy Line at 800.539.9767, by emailing us at support@lbda.org, or online at the 🔗 in our bio.

Living with #Lewybodydementia brings significant shifts in thinking, communication, and daily functioning. These changes can heighten vulnerability to misinformation, high-pressure tactics, and financial scams. Being aware of these risks is a key step toward protecting safety, dignity, and as much independence as possible. Cognitive fluctuations, slowed processing, visuospatial challenges, and difficulties with executive functioning can make it harder to interpret complex information or recognize when something feels “off.” Emotional factors — including anxiety, uncertainty, fatigue, apathy, and emotional strain — can make urgent messages or “too good to be true” promises feel convincing. Simple, practical steps can also reduce exposure to risk: an intentional pause, slowing conversations, validating emotions, using grounding questions, blocking unwanted calls, avoiding unfamiliar links or attachments, and remembering that legitimate organizations will never demand immediate action or unusual forms of payment. To learn more, watch the American Parkinson Disease Association’s webinar, “Unlocking Strength Within: Vulnerability, Misinformation, and the Power of Pause,” at the 🔗 in our bio. Contact the LBDA Support Team directly by emailing support@lbda.org or by leaving a message on the Lewy Line at 800-539-9767.

The Lewy Body Dementia Association’s 2026 Community Webinar Series: Insights, Innovations & Everyday Impact brings together cutting-edge #Lewybodydementia science, compassionate care and the power of the lived-experience. Explore the series at the 🔗 in our bio. Sponsored by GE HealthCare.

Living with #Lewybodydementia (LBD) can be challenging in many ways. While cognition and movement problems are often discussed, many people with LBD also experience hallucinations or delusions—for example, seeing people who are not really there or strongly believing things that are not true. These symptoms are known as LBD psychosis, and they are common in both dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). The ILLUMERA Study is a clinical research study testing an investigational medication designed to help reduce #hallucinations and delusions in people with LBD, including both DLB and PDD. Learn more about the study today, including where it is taking place and who may be eligible to volunteer. Link in bio. #Dementia #DementiaResearch #BrainHealth

What if your commitment to the #Lewybodydementia (LBD) community could continue helping families for generations to come? Naming the Lewy Body Dementia Association in your will or living trust is one of the simplest ways to create a lasting legacy. It costs nothing today, offers flexibility as your plans evolve, and helps support the future of LBD care and research. Learn how to leave your legacy. 🔗 in bio.

Sleep changes are one of the most important—and often most confusing—features of #Lewybodydementia (LBD). Whether you are navigating these symptoms personally, supporting someone who is, or caring for patients, join Jesse Cohen, MD, on August 26 at 1:00pm ET for "From REM to Reality: How Sleep Shapes Neuropsychiatric Symptoms in LBD." This free webinar will provide valuable knowledge to help you understand the sleep-symptom connection, recognize early signs and patterns, and explore strategies that support better sleep and daily functioning. Register now. 🔗 in bio.

One week to go! Join us in Arlington for the 3rd Annual DLS 5K & 1 Mile for Lewy Body Dementia on August 22. Walk, run, volunteer or cheer on the community while helping raise awareness and support for those affected by #Lewybodydementia. Register today. 🔗 in bio.

The Lewy Body Dementia Association’s 2026 Community Conference Series brings together experts, trusted partners and the #Lewybodydementia (LBD) community for a day of education, empowerment and support. Through engaging presentations, interactive sessions, and heartfelt discussions, you will gain valuable insights into navigating the complex symptoms of LBD while fostering a sense of hope and connection. For more information, please visit the link in our bio. #DementiaAwareness #DementiaSupport #DementiaCare #BrainHealth

The Lewy Body Dementia Association will be closed for Staff Appreciation Day on Friday, August 14. We will resume normal hours on Monday, August 17. Our Support Services team will be away from the Lewy Line during this time. Send us an email at support@lbda.org or leave a message at 800.539.9767.

Sleep changes are one of the most important—and often most confusing—features of #Lewybodydementia. Led by Jesse Cohen, MD, our webinar on August 26 at 1:00pm ET, “From REM to Reality: How Sleep Shapes Neuropsychiatric Symptoms in LBD,” will explore how disruptions in REM sleep, dream enactment, and nighttime restlessness connect to daytime challenges such as hallucinations, fluctuations in thinking, mood changes, and behavioral symptoms. Register today. 🔗 in bio. #SleepDisorders #DementiaSupport #DementiaCare #BrainHealth

Twelve years after his passing, Robin Williams’ story continues to shed light on the realities of #Lewybodydementia. In SPARK: Robin Williams and His Battle with Lewy Body Dementia©, Susan Schneider Williams shares an intimate look at Robin’s final years and his experience living with this disease that ultimately helped explain the many changes they had struggled to understand. Watch for free on LBDA’s Mediflix channel. 🔗 in bio.

The 13th Annual Lewy Body Dementia Awareness Walk returns on Sunday, September 27, bringing together individuals, families, care partners, advocates and supporters united by a common goal: creating a better future for those affected by #Lewybodydementia. Join us in-person in Jamison, PA or participate virtually from wherever you are. Whether you walk in honor, in memory or in support, every step helps strengthen a growing community committed to ensuring no one faces Lewy alone. 📍Register to attend in Jamison, PA or participate virtually using the link in our bio. #LivingwithLewy #DementiaAwareness #DementiaSupport #TogetherWeCan

Sleep disturbances are extremely common in #Lewybodydementia (LBD), affecting up to 90% of individuals over the course of the disease. These sleep-related changes can significantly impact cognition, mood, safety, and quality of life—not only for the person living with LBD, but also for care partners and family members. Unpacking Sleep, a new course now available on the Lewy Learning Center, explores how sleep disturbances present, how they are identified or diagnosed, and provides strategies to improve sleep and overall quality of life. Start learning using the 🔗 in our bio. #Sleep #DementiaCare #DementiaSupport #BrainHealth

The journey through moderate and advanced stages of dementia with Lewy bodies (DLB) — and through the end of life — remains one of the least understood parts of the disease, owing to a lack of research focused on later stages. Most studies focus on earlier disease stages, when diagnosis is the central challenge. Far less is known about what drives symptom progression in later disease, what shapes quality of life for people living with DLB and their care partners as the disease advances, and how treatment strategies might be adapted to meet the distinctive needs of this group. A new study published in the journal Neurology takes an important step toward filling that gap — and in doing so, identifies a factor that may be influencing some of the most burdensome features of moderate to advanced DLB. Read the results. 🔗 in bio.

Get the latest on #Lewybodydementia (LBD) - delivered straight to your inbox. Subscribe to our free monthly e-newsletter, the Lewy Digest, for research updates, educational events and helpful tips for living with Lewy. 📩 Join the LBD community today. Link in bio. #DementiaCare #DementiaSupport #DementiaResearch

"If including LBDA in my estate plans can assist even one family, provide more information, more resources, more awareness, more support,” Pamela says, " I believe I will be honoring Jim’s brilliant life." After years of searching for answers, Pamela's husband, Jim, was diagnosed with #Lewybodydementia just eight months before he passed away. Today, Pamela is honoring his legacy by helping other families find answers sooner. During #MakeAWillMonth, consider including LBDA in your estate plans. A legacy gift helps accelerate research, expand education and ensure families facing Lewy never have to navigate the journey alone. Learn more about planned giving. 🔗 in bio. #DementiaSupport #DementiaCare #Caregiving #TogetherWeCan

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