Podcasts about Lewy body dementia

A brand-new study just dropped in Nature Medicine… and the numbers are worse than we thought. In this episode, I'm breaking down the latest dementia statistics that every caregiver, family member, and adult over 55 needs to know. This is more than just data—it's a wake-up call. We're talking risk factors, who's most vulnerable, and why dementia care is on the verge of a national crisis. But don't worry—there's hope too. I'll also share where to turn next and how we can take action now. Click the link below to read the full study: https://drive.google.com/file/d/1tkUsmdUeWIvASlpgkd3seeDHwLUBF9-T/view?usp=sharing  If you'd like to see this episode on video, you can hop on over to my YouTube channel here. Get Weekly Dementia Tips in Your Inbox! Sign up for our FREE Dementia Dose newsletter at https://careblazers.com/dementiadose It's our mission to make dementia caregiving easier for families caring for a loved one with Alzheimer's disease, frontotemporal dementia, lewy body dementia, vascular dementia, or any other type of dementia. We believe that in order to create a more dementia-friendly world, we must first create a caregiver-friendly world. That's why we create free educational training videos like this one so that anyone with an internet connection can get access to dementia care information. **This channel and any information by Dementia Careblazers is not a substitute for healthcare. This is not healthcare advice. Please talk to your healthcare providers for specific feedback on your situation.

Hosted on Acast. See acast.com/privacy for more information.

Could this vitamin really slow down Alzheimer's? The latest research might change everything. In this video, I'm sharing the surprising study results, how this vitamin works in the brain, and why some neurologists are already taking it themselves. Most people have never heard of this — but if you're caring for someone with dementia or worried about memory decline, you'll want to see this. Link to study: https://pmc.ncbi.nlm.nih.gov/articles/PMC7880246/ If you'd like to see this episode on video, you can hop on over to my YouTube channel here. Get Weekly Dementia Tips in Your Inbox! Sign up for our FREE Dementia Dose newsletter at https://careblazers.com/dementiadose It's our mission to make dementia caregiving easier for families caring for a loved one with Alzheimer's disease, frontotemporal dementia, lewy body dementia, vascular dementia, or any other type of dementia. We believe that in order to create a more dementia-friendly world, we must first create a caregiver-friendly world. That's why we create free educational training videos like this one so that anyone with an internet connection can get access to dementia care information. **This channel and any information by Dementia Careblazers is not a substitute for healthcare. This is not healthcare advice. Please talk to your healthcare providers for specific feedback on your situation.

Careblazer, did you know you could lower your dementia risk by nearly 50% just by changing some everyday habits? In this video, I'm walking you through 14 research-backed lifestyle changes you can start making today—based on the 2024 Lancet Commission Report. These are modifiable risk factors, which means they're things you actually have control over. As a board-certified geropsychologist, I see so many people feel helpless when it comes to brain health. But this video is here to show you that you have more power than you think. From hearing loss and blood pressure to social isolation and air pollution, I'll explain what each risk factor means and exactly how you can take action. If you'd like to see this episode on video, you can hop on over to my YouTube channel here. Get Weekly Dementia Tips in Your Inbox! Sign up for our FREE Dementia Dose newsletter at https://careblazers.com/dementiadose It's our mission to make dementia caregiving easier for families caring for a loved one with Alzheimer's disease, frontotemporal dementia, lewy body dementia, vascular dementia, or any other type of dementia. We believe that in order to create a more dementia-friendly world, we must first create a caregiver-friendly world. That's why we create free educational training videos like this one so that anyone with an internet connection can get access to dementia care information. **This channel and any information by Dementia Careblazers is not a substitute for healthcare. This is not healthcare advice. Please talk to your healthcare providers for specific feedback on your situation.

Why do so many people with dementia refuse to bathe?

People with dementia sometimes see people and things that aren't there… even people who've passed away! But what does it really mean when someone with dementia starts having visual hallucinations? In this episode, I'm sharing the surprising truth about hallucinations — one of the most confusing and misunderstood symptoms in dementia care. Some are harmless. Others? A warning sign.  Whether your loved one has ever said “There's someone in the room…” …or you've heard stories that seem impossible — you'll want to listen to this.  If you'd like to see this episode on video, you can hop on over to my YouTube channel here.

Government is talking about cutting Medicare and Medicaid funding while costs of care are increasing. Dementia used to be considered a mental defect, and people were hidden from the rest of society and not talked about publicly Today, we know tis is a disease that needs to be managed. We also know that younger people are developing memory concerns. The plus is that we're not afraid to talk about it anymore. The negative is that we're delaying the needed planning until it's too late to design meaningful planning strategies. Here are links to the resources I discuss in this episode. Alzheimer's Disease International shares different forms of dementia  Mayo Clinic dementia info National Institutes of Health McKnight's Senior Living on budget cuts View current and projected costs of care where you live  Learn what your state's Medicaid system let's you keep Schedule a free consultation with me  

When the unexpected diagnosis of Lewy body dementia struck Carla Preyers's husband, she found herself thrust into a role she never anticipated. "The journey chose me," she explains, recounting the four-year battle for a proper diagnosis and the profound challenges that followed. This conversation reveals the often-invisible struggles caregivers face when supporting loved ones with dementia.The emotional heart of this episode lies in Carla's honest discussion of caregiver self-preservation. Her commitment to morning prayers, positive environments, and regular exercise wasn't just about wellness—it was survival. "I had to manage my energy," she shares, explaining how negativity directed at someone with dementia "comes back to you triple." Her story has now found wider resonance through the documentary "Facing the Wind," executive produced by Yo-Yo Ma, Yolanda Wong, and David Hyde Pierce, which chronicles the journey of dementia caregivers across America.Are you caring for someone with cognitive decline or concerned about a loved one showing symptoms? Reach out to Carla through the links on our show page to learn how you might bring the "Facing the Wind" documentary to your community and join the growing advocacy movement for better dementia care and caregiver support.Carla's Story My husband, Patrick Preyer, was diagnosed with Lewy Body Dementia in 2018. For eight years, I walked alongside him as his caregiver until his peaceful transition in January 2023. Through heartbreak and healing, I learned how vital faith, community, and support are—especially for caregivers who often feel invisible.That journey is now told in the documentary Facing the Wind, which candidly captures our experience with dementia, caregiving, and the importance of self-care. This film was born out of connection—sparked by the Lewy Body Spouses Support Group on Facebook—and nurtured into a message of hope and resilience.I'm proud to share that Facing the Wind premiered at DOC NYC, one of the nation's leading documentary festivals, and was recently featured on People.com. The film is executive produced by Renée Fleming, Yo-Yo Ma, and David Hyde Pierce.As a caregiver self-care coach, I now dedicate my life to supporting those who give so much of themselves. While organizations like Voices Inclusive Research focus on providing a voice in clinical research to the community, my passion is to amplify the voices of the women caring behind the scenes—quiet heroes who need to be seen, supported, and sustained.Clips and Media Documentary ClipPeople Magazine FeatureFacebook Page We hope you have enjoyed this episode. Please like, comment, subscribe, and share the podcast.To find out more about Lynnis and what is going on in the V.I.B.E. Living World please go to https://link.tr.ee/LynnisJoin the V.I.B.E. Wellness Woman Network, where active participation fuels the collective journey toward health and vitality. Subscribe, engage, and embark on this adventure toward proactive well-being together. Go to https://www.vibewellnesswomannetwork.com to join. We have wonderful events, courses, challenges, guides, blogs and more all designed for the midlife woman who wants to keep her V.I.B.E. and remain Vibrant, Intuitive, Beautiful, and Empowered after 40+. Interested in an AI platform that meets all your needs? Click here

A masterclass in love, advocacy, and resilience.What a powerful and heartfelt episode of Full Circlewith our guest Carla Preyer, featured in the new documentary Facing the Wind. Carla graciously opened up about her and her husbandPatrick's deep spiritual connection and their beautiful love story — a story that faced a new chapter when Patrick began showing signs of Lewy Body Dementia. During our conversation, Carla shared the early signs she initially overlooked, and the long and often frustrating journey toward getting a proper diagnosis. Her honesty shed light on how common — and painful — that struggle is, especially in Black and Brown communities.We also discussed the challenges of accessing care andinformation, the emotional toll of caregiving, and the critical importance of finding a support group — people who not only understand what you're going through but walk beside you through it. Most powerfully, Carla reminded us that asking for help is not a weakness — it's an act of strength.Carla's story, and the Facing the Wind documentary,are a testament to what's possible when love is backed by community and care. Visit https://facingthewindfilm.com/ to find out how you can view this important film.Share this episode with your loved ones or those who may be walking their own caregiving journey and may need encouragement and support — because no one should face the wind alone. Let's keep this conversation going. Share your thoughts onthis episode in the comments. #FullCircle975 #FacingTheWind #LewyBodyDementia#CaregiverSupport #BlackHealthMatters #SacramentoEvents #GuildTheater

This one simple exercise changed everything—for me, for my audience, and it could do the same for you. In this episode, I'll share the 3 things I'd want my caregivers to know if I ever needed care... and show you how this one shift can make dementia care so much easier and more compassionate.

An Oscar-winning actor with Alzheimer's was left alone for 6 DAYS… and no one knew. What happened to his wife—the person caring for him—could happen to any dementia caregiver. This isn't just a Hollywood tragedy. It's a wake-up call. In this video, I'm sharing two life-saving lessons every caregiver needs to hear. If you care for someone with dementia, this could be the most important 10 minutes of your week. If you'd like to see this episode on video, you can hop on over to my YouTube channel here. If you found this information helpful, consider subscribing to my free email newsletter for even more valuable insights on dementia by clicking here.

In the new novel Counting Backwards, a woman named Addie becomes concerned when her devoted husband, Leo, starts having vivid hallucinations. When he is eventually diagnosed with Lewy Body Dementia, her world, and their marriage, is turned upside down. The novel is based on author Binnie Kirshenbaum's own experiences with her husband. Kirshenbaum discusses the novel.

Why do people with dementia act out, push you away, or refuse your help? In this video, I'm revealing 3 surprising causes behind challenging dementia behaviors—and they're probably not what you think. These aren't just mood swings. They're messages. Learn what your loved one might really be trying to tell you—and how to handle it with less stress and more confidence. If you'd like to see this episode on video, you can hop on over to my YouTube channel here.

Did you know 1 in 10 dementia patients have a hidden diagnosis doctors often overlook? It's called mixed dementia—when someone has more than one type of dementia at the same time, usually Alzheimer's combined with vascular dementia. This overlooked condition can dramatically affect how dementia progresses and how best to care for your loved one. In this episode, I'll uncover why mixed dementia frequently goes undiagnosed, learn how to spot the subtle signs, and discover what this means for treatment, caregiving strategies, and your loved one's quality of life. If you'd like to see this episode on video, you can hop on over to my YouTube channel here. And if you need ongoing support, check out our Care Collective—a warm, supportive community for dementia caregivers, with live Q&A sessions, expert advice, and 24/7 access to resources.

This episode is three years old! Back in 2022 friend and fellow comedian Robert Jenkins joined me to talk about his father Michael Jenkins. A man who saw the world with a clear moral clarity, we touched on his tough upbringing in Flint and Detroit, a long life spent with his wife Rita, becoming a Jehovah's Witness, and how he managed Lewy Body Dementia on his way out. Rob and I also managed to solve world peace.

Do you want to experience the healing power of family relationships and find hope and peace amidst the challenges of caregiving? In this episode we discuss a solution. Our special guest is Susan Landeis, author of "In Search of Rainbows: A Daughter's Story of Loss, Hope and Redemption." Susan is an inspiring voice in the Alzheimer's and dementia caregiving community. Her memoir delves into her journey of caring for her mother with Lewy Body Dementia, while navigating a lifelong, complex, and estranged relationship. Susan's candid storytelling and experiences offer invaluable insights into the challenges of caregiving and the transformative power of forgiveness and healing within family dynamics. As a member of the AlzAuthors management team, Susan brings a wealth of knowledge and compassion to her work, providing support and understanding to those facing similar struggles. Her personal journey and dedication to raising awareness of dementia caregiving make her a compelling and relatable guest for today's episode. Estrangement within families can present additional challenges when taking on the role of caregiver. Navigating this complex dynamic requires open communication, patience, and a willingness to address underlying issues. Caregivers like Susan have found that caregiving can offer a pathway to reconciliation, understanding, and forgiveness, ultimately bridging the gap created by estrangement. In this episode, you will: · Discover effective coping strategies for Lewy Body Dementia, bringing peace of mind to both you and your loved one. · Learn how caregiving can become a catalyst for healing family relationships, fostering understanding and connection. · Find ways to navigate the challenges of estrangement while providing loving care for your family member. · Explore the powerful process of writing a memoir on dementia caregiving, capturing and preserving precious memories. · Gain valuable insights into managing senior health and well-being, empowering you to provide the best care possible. After the Podcast Buy “In Search of Rainbows” Read Susan's AlzAuthors Post Note: we are an Amazon Associate and may receive a small commission on book sales at no additional cost to you or the authors. Learn more about the Moderators Marianne Sciucco Christy Byrne Yates About the Podcast AlzAuthors is the global community of authors writing about Alzheimer's and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don't miss a word. If our authors' stories move you, please leave a review. And don't forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer's and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening. We are a Whole Care Network Featured Podcast

Do you want to experience the healing power of family relationships and find hope and peace amidst the challenges of caregiving? In this episode we discuss a solution. Our special guest is Susan Landeis, author of "In Search of Rainbows: A Daughter's Story of Loss, Hope and Redemption." Susan is an inspiring voice in the Alzheimer's and dementia caregiving community. Her memoir delves into her journey of caring for her mother with Lewy Body Dementia, while navigating a lifelong, complex, and estranged relationship. Susan's candid storytelling and experiences offer invaluable insights into the challenges of caregiving and the transformative power of forgiveness and healing within family dynamics. As a member of the AlzAuthors management team, Susan brings a wealth of knowledge and compassion to her work, providing support and understanding to those facing similar struggles. Her personal journey and dedication to raising awareness of dementia caregiving make her a compelling and relatable guest for today's episode. Estrangement within families can present additional challenges when taking on the role of caregiver. Navigating this complex dynamic requires open communication, patience, and a willingness to address underlying issues. Caregivers like Susan have found that caregiving can offer a pathway to reconciliation, understanding, and forgiveness, ultimately bridging the gap created by estrangement. In this episode, you will: ·      Discover effective coping strategies for Lewy Body Dementia, bringing peace of mind to both you and your loved one. ·      Learn how caregiving can become a catalyst for healing family relationships, fostering understanding and connection. ·      Find ways to navigate the challenges of estrangement while providing loving care for your family member. ·      Explore the powerful process of writing a memoir on dementia caregiving, capturing and preserving precious memories. ·      Gain valuable insights into managing senior health and well-being, empowering you to provide the best care possible. After the Podcast Buy “In Search of Rainbows” Read Susan's AlzAuthors Post Note: we are an Amazon Associate and may receive a small commission on book sales at no additional cost to you or the authors. Learn more about the Moderators Marianne Sciucco Christy Byrne Yates About the Podcast AlzAuthors is the global community of authors writing about Alzheimer's and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don't miss a word. If our authors' stories move you, please leave a review. And don't forget to share our podcast with family and friends on their own dementia journeys.  We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer's and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening.  We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Find us on The World Podcast Network and babyboomer.org Want to be on the podcast? Here's what you need to know We've got merch! Shop our Store

Lisa Ricciardi, CEO, and Dr. Tony Caggiano, Chief Medical Officer at Cognition Therapeutics, are developing effective treatments for neurological disorders, particularly Alzheimer's disease and dementia with Lewy bodies (DLB). While DLB is related to Parkinson's, sharing symptoms include hallucinations, sleep disorders, and cognitive dysfunction, there are no good diagnostics to identify DLB and effective treatments. Cognition Therapeutics' lead drug candidate, an oral treatment, has shown promise in protecting neurons from the toxic effects of the pathological proteins involved in Alzheimer's and DLB. Lisa explains, "This company started in 2007, so we've had a long number of years to burnish our mission. One of the things we say is we're the beginning of the end of neurologic disorders and the start of hope for an improved future for patients. So Alzheimer's disease, in particular, has been long studied with little success, and in the last few years, we've seen some successes with monoclonal antibodies. There are a number of other approaches in clinical trials, but we have recently generated very positive data in two different trials with an oral once-a-day drug." Tony elaborates, "Lewy body dementia or dementia with Lewy bodies is a disease very much related to Parkinson's disease that's believed to be, in part, caused by pathological levels of a certain protein called alpha synuclein and particularly small oligomers of misfolded alpha synuclein." "And in Alzheimer's disease, this is largely a cognitive memory disorder as it presents. So, those two diseases are very different. Now, the idea of treating them with a single drug is somewhat unique to what we have here at Cognition Therapeutics. So our company started around the idea of developing therapies for Alzheimer's disease, and our lead molecule CT1812 or zervimesine was developed out of a screening assay where we were looking for molecules that could protect neurons or brain cells from the toxicities of this pathological amyloid protein. So, we identified CT1812 and have been developing it."  #CognitionTherapeutics #BrainHealth #DementiaCare #LewyStrong #Livingwithlewy #Alzheimers #EndAlz #Alzheimersdisease #DLBAwareness #NeurodegenerativeDisease #Dementia #DementiaWithLewyBodies  cogrx.com Download the transcript here

Lisa Ricciardi, CEO, and Dr. Tony Caggiano, Chief Medical Officer at Cognition Therapeutics, are developing effective treatments for neurological disorders, particularly Alzheimer's disease and dementia with Lewy bodies (DLB). While DLB is related to Parkinson's, sharing symptoms include hallucinations, sleep disorders, and cognitive dysfunction, there are no good diagnostics to identify DLB and effective treatments. Cognition Therapeutics' lead drug candidate, an oral treatment, has shown promise in protecting neurons from the toxic effects of the pathological proteins involved in Alzheimer's and DLB. Lisa explains, "This company started in 2007, so we've had a long number of years to burnish our mission. One of the things we say is we're the beginning of the end of neurologic disorders and the start of hope for an improved future for patients. So Alzheimer's disease, in particular, has been long studied with little success, and in the last few years, we've seen some successes with monoclonal antibodies. There are a number of other approaches in clinical trials, but we have recently generated very positive data in two different trials with an oral once-a-day drug." Tony elaborates, "Lewy body dementia or dementia with Lewy bodies is a disease very much related to Parkinson's disease that's believed to be, in part, caused by pathological levels of a certain protein called alpha synuclein and particularly small oligomers of misfolded alpha synuclein." "And in Alzheimer's disease, this is largely a cognitive memory disorder as it presents. So, those two diseases are very different. Now, the idea of treating them with a single drug is somewhat unique to what we have here at Cognition Therapeutics. So our company started around the idea of developing therapies for Alzheimer's disease, and our lead molecule CT1812 or zervimesine was developed out of a screening assay where we were looking for molecules that could protect neurons or brain cells from the toxicities of this pathological amyloid protein. So, we identified CT1812 and have been developing it."  #CognitionTherapeutics #BrainHealth #DementiaCare #LewyStrong #Livingwithlewy #Alzheimers #EndAlz #Alzheimersdisease #DLBAwareness #NeurodegenerativeDisease #Dementia #DementiaWithLewyBodies  cogrx.com Listen to the podcast here

Dementia medication refusal is one of the most frustrating challenges caregivers face. If your loved one refuses to take their medication, you're not alone! In this episode, I reveal the #1 mistake caregivers make when handling dementia medication refusal and share proven strategies to make medication time easier. You'll learn: ✅ Why dementia patients refuse medication (confusion, fear, sensory issues, independence) ✅ What NOT to do (why forcing, arguing, or sneaking meds can backfire) ✅ How to make medication time easier (changing medication forms, routines, positive reinforcement) If you'd like to see this episode on video, you can hop on over to my YouTube channel here. And if you need ongoing support, check out our Care Collective—a warm, supportive community for dementia caregivers, with live Q&A sessions, expert advice, and 24/7 access to resources.

Smell loss and dementia are more connected than you think! Research shows that a diminished sense of smell can be an early warning sign of cognitive decline, including Alzheimer's disease. In this video, I'll break down the scientific link between smell and brain health, real-life examples of how smell loss has been a first symptom of dementia, and the steps you can take if you notice this in your loved one. If you'd like to see this episode on video, you can hop on over to my YouTube channel here. And if you need ongoing support, check out our Care Collective—a warm, supportive community for dementia caregivers, with live Q&A sessions, expert advice, and 24/7 access to resources.

Why do mirrors confuse people with dementia? If your loved one suddenly avoids mirrors or reacts fearfully to their reflection, you're not alone. Many dementia caregivers notice this behavior, and it's all tied to how the brain perceives images. In this video, we break down the surprising reasons behind this phenomenon, from depth perception issues to mirror illusions. More importantly, we'll share simple, practical strategies to make your home a dementia-friendly space—helping your loved one feel safer and less anxious. If you'd like to see this episode on video, you can hop on over to my YouTube channel here. And if you need ongoing support, check out our Care Collective—a warm, supportive community for dementia caregivers, with live Q&A sessions, expert advice, and 24/7 access to resources.

Did you know that sudden, unexplained generosity could be a silent warning sign for early dementia? What seems like harmless kindness might actually signal cognitive changes that put your loved one—and their finances—at risk. In this video, I uncover how this subtle behavior can reveal deeper issues, and more importantly, what you can do to protect your loved ones.

1 in 3 people with dementia who visit the ER are diagnosed with a UTI.

Today's episode is special to me. It is a recording of me praying the rosary with my dad over the phone. He has Lewy Body Dementia, and we aren't totally sure how much longer he has with us on earth. One of my favorite things to do with him is call and pray with him. If you listen to this, I ask you to say a prayer for him and my mom. God bless,BrendanCall to ActionSubscribe, leave a review, and share this episode with anyone feeling called to go on mission. Let's inspire one another to live out the Gospel call to serve! Join us next week for more faith-filled conversations. Support the show

In this episode of Your History Your Story, our guest is Mary Lou Falcone. Mary Lou is an internationally known classical music publicist and an advocate for Lewy Body Dementia awareness. Today we will be talking about her powerful memoir, “I Didn't See It Coming: Scenes of Love, Loss, and Lewy Body Dementia.” In her memoir, Mary Lou shares deeply personal stories, such as her father's devastating stroke in the 1950s when she was just a child and her journey as caregiver to her husband and soulmate, Nicky Zann. A 1950s rock ‘n' roll musician turned celebrated artist, Nicky passed away from Lewy Body Dementia in 2020. Don't miss this inspiring conversation about love, loss, and resilience. Music: "With Loved Ones" Jay Man Photo(s): Courtesy of Mary Lou Falcone Support Your History Your Story: Please consider becoming a Patron or making a donation via PayPal. - THANK YOU!!! YHYS Patreon: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠CLICK HERE⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ YHYS PayPal: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠CLICK HERE⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ YHYS: Social Links: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠CLICK HERE⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ YHYS: Join our mailing list: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠CLICK HERE⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ #yhys #yourhistoryyourstory #history #storytelling #podcast #njpodcast #youhaveastorytoo #jamesgardner #historian #storyteller Lewy Body Dementia resources: ⁠LBDNY.org To order "I Didn't See it Coming": MaryLouFalcone.com ⁠

Hey Careblazers!

All Home Care Matters and our host, Lance A. Slatton were honored to welcome Julia Wood, MOT, OTR/L the Director of Professional & Community Education for the Lewy Body Dementia Association (LBDA).   About Julia Wood, MOT, OTR/L:   Julia Wood, MOT, OTR/L is an occupational therapist and international educator specializing in assessment and treatment of people with Parkinson's disease and related dementias. Julia joined the Lewy Body Dementia Association (LBDA) as director of Professional & Community Education in 2021.   She co-authored the first American Occupational Therapy Association Practice Guideline for Adults with Parkinson's Disease in 2022 and serves on the Comprehensive Care Subcommittee for the World Parkinson's Congress (WPC).   About the Lewy Body Dementia Association (LBDA):   The Lewy Body Dementia Association (LBDA) is the leading national organization dedicated to improving the lives of Lewy body dementia (LBD) families.   The Lewy Body Association (LBDA) Mission:   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.   Program Provision Highlights:   Support:    LBDA offers a wide variety of compassionate and confidential support services for those who are symptomatic or diagnosed, their families and current or former care partners, including but not limited to: • Virtual and in-person support groups • Connecting to Lewy Buddies, lived-experience volunteers who share their time and experience with individuals and families • Opportunity to connect directly with one of LBDA's licensed social workers through the Lewy Line, a toll-free number, Monday - Friday • Assistance in identifying additional external programs or local resources   (LBDA does not promote any doctor, medical center, allied healthcare provider, medication, product or treatment, nor direct referrals for residential facilities or home care agencies).    Education:   LBDA provides free resources and educational programming throughout the year on a wide variety of LBD topics.   • 2024 Community Webinar Series: Empowerment through Education is designed to provide strategies for self-advocacy, exploration of the complex symptoms of LBD, and skills and resources to enhance quality of life.   o Available to watch on LBDAtv or Mediflix   • 2025 Community Webinar Series: Mastering Lewy Body Dementia Together will focus on building mastery of understanding on the complex symptoms of (LBD), continuation of providing strategies for self-advocacy and resources for support, and tactics for enhancing quality of life.   o Begins January 15    • The Lewy Learning Center is a free online platform for sharing education LBD with the community and health care professionals. A go to place for on-demand learning, courses are available to watch at any time, share with friends and family members, with unlimited viewing options.  • LBDA offers complimentary educational materials for individuals and families as well as healthcare provides which can be requested via lbda.org (US only)   Research:   LBDA facilitates, promotes and assists in the development of LBD clinical trials and research studies.   • The Lewy Trial Tracker is a tool for individuals to receive information on new and currently recruiting clinical trials and studies. It is a single source of information that highlights study topics, procedures, locations and study site contact information. Registrants receive quarterly emails, and the information collected is confidential.   • LBDA's Research Centers of Excellence is a network of 25 of the nation's leading academic medical research institutions connecting individuals and their families with highly-specialized physicians providing advanced diagnosis and treatment, as well as conducting LBDA research. 

Struggling to juggle caring for your kids AND your aging parents? You're not alone, Careblazer! Sandwich caregivers face unique challenges like burnout, financial strain, and career struggles—but there's hope. In this video, I break down the top stressors and share simple, actionable tips to help you manage the chaos, protect your mental health, and plan for the future.

Lewy body dementia is a common cause of cognitive impairment in older adults but is often subject to significant delays in diagnosis and treatment, increasing the burden on patients and family caregivers. Understanding key features of the disease and use of biomarkers will improve recognition. In this episode, Allison Weathers, MD, FAAN, speaks with James E. Galvin, MD, MPH, author of the article “Lewy Body Dementia,” in the Continuum December 2024 Dementia issue. Dr. Weathers is a Continuum® Audio interviewer associate chief medical information officer at the Cleveland Clinic in Cleveland, Ohio. Dr. Galvin is a professor of neurology at the University of Miami Miller School of Medicine in Miami, Florida. Additional Resources Read the article: Lewy Body Dementia Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Weathers: This is Dr Allison Weathers. Today I'm interviewing Dr James Galvin, author of Lewy body dementias from the December 2024 Continuum issue on dementia. Welcome to the podcast, Dr Galvin. Please introduce yourself to our audience.  Dr Galvin: Thank you, Allison. My name is Jim Galvin. I'm a neurologist, a professor of neurology at the University of Miami Miller School of Medicine. Dr Weathers: We're so happy to have you with me today. Thanks, Jim, for your time. And as you highlight right from the start in your really outstanding and comprehensive overview of this really complex topic, even though Lewy body dementia is the second most common cause of neurodegenerative dementia, it often goes unrecognized in clinical practice, resulting in really potentially lengthy diagnostic delays. So, this is a really important article for a neurologist and an important topic for our listeners. So, I'm thrilled we're having this conversation today. While I traditionally start by asking the authors what they feel is the most important clinical message of their article, I would love to actually start a step earlier in this conversation with you. Can you start us off by explaining what's actually meant when we say Lewy body dementia? Dr Galvin: Great. So, you know, I think this is a, this is an interesting concept. So, we're really talking about two diseases that have a shared common pathology. So, Parkinson's sees dementia and dementia with Lewy bodies. So, their shared pathology is a Lewy body and that's why they're often grouped together as the Lewy body dementias. And then there's arguments back and forth as to whether these are distinct diseases or sort of two ends of the same candle burning in different directions. So, Parkinson's dementia is a lot like what it sounds like. So, if someone has Parkinson's disease, then at some point later they develop a dementia. And so back in the 1800's when Parkinson's disease was like first described as an entity, we basically felt that cognition wasn't affected. But we now know that's not true. And so most patients with Parkinson's do have some cognitive symptoms and a large proportion of them will eventually develop dementia. Perhaps up to 80% of Parkinson's patients will develop a dementia. The flip side is the dementia with Lewy body picture. And these are people who present primarily with a cognitive behavioral syndrome that may or may not have parkinsonism. So, they will sometimes have bradykinesia. They rarely have a rest tremor. And so, these are the people that are very much in the delayed diagnosis group. The Parkinson's dementia is more whether the clinician is checking their cognition as part of their annual visit. The flip side is that the people with DLB are often misdiagnosed early on, but together, this is Lewy body dementia, which is the most common disease that many people have never heard of. Dr Weathers: That's a great tagline, I think, for the whole article and for this concept. So now that that we're all on the same page about what's meant when we use that the term, what would you want our listeners to walk away with as their one key takeaway from our conversation today? Dr Galvin: Well, I think the article makes several key points, but I think if I put those all together into a single key point, it would really be that the Lewy body dementias are underrecognized, they're underdiagnosed, yet it is very possible to make the diagnosis using the standardized clinical criteria. They're very, very, very specific. They lack a little bit in sensitivity. So, because other diseases sometimes can look like this, but they're really quite specific. So, if you're confident clinically that the person has Lewy body dementia, you're probably going to be right. And in today's world, we have tests available to help confirm our diagnosis. The world is changing. We can make these diagnosed with much more confidence and we have confirmatory diagnosis laboratory tests that can help us. Dr Weathers: I want to talk more about the diagnosis in one minute, but first, how common actually are dementia with Lewy bodies and Parkinson's disease dementia? Dr Galvin: That's a great question. I think one of the challenges, of course, we really don't know how many people have any disease because it's going to largely rely on how well people code the diseases in the medical record. So, if you look at the most common cause of dementia in the United States, it's really dementia not otherwise specified, right? But we believe it to be the second most common cause of dementia. The Lewy Body Dementia Association, about a decade ago, started to try to develop some estimates. So, we have an estimate about how many people roughly have Parkinson's disease and that about 80% of those individuals would go on to develop dementia. And we know from the dementia population that about 40% of those individuals coming to autopsy have Lewy bodies. So, when you start to put that all together, you can get a reasonable estimate of how many people likely have the disease. And then that can be expanded on an annual basis, just like the Alzheimer's Association uses, by extrapolating those estimates onto the census data. So, we estimate right now there are about 1.4 to 1.6 million Americans who are living with Lewy body dementia. That's less than the 6.8 million people who have Alzheimer's disease, but more than a lot of other common diseases. So, if you think about, again, I said before, it's the most common disease no one's ever heard of. You know, there are about a million people who have multiple sclerosis. There are about eight hundred thousand people who have a stroke. There are about seven hundred thousand people who have a brain tumor. There are two hundred and fifty thousand people who have muscular dystrophy. There are twelve thousand people who have ALS. But I think if you stopped clinicians or people in the street and say have you ever heard of ALS or muscular dystrophy, they would say yes. If you ask them if they've heard of Lewy body dementia, they would say no.  Dr Weathers: That's an excellent point. And I know over the years I think there's been some increased awareness. I think sadly with some of the celebrities that have been impacted, I think that did a lot to raise awareness. But I think you're right that it's still so less commonly recognized by the lay public, by non-neurologists, than so many other diseases that you mentioned. And I think that leads back well into my next question into something that we've already mentioned just a few times already in our short conversation, this unfortunate and very common delay in the diagnosis. Why? And you mentioned earlier that there are these, you know, clinical criteria, these now ancillary tests. So, what makes the diagnosis so challenging? What aspects in particular do you think that neurologists find to be the most challenging in diagnosing patients? What trips us up?  Dr Galvin: So, there's an old analogy, right, that, you know, if you'll be three blind men to an elephant and each of them are touching a different part of the elephant, they'll each think it's something different. So because Lewy body dementia has so many different diverse kind of symptoms, it would really depend on who's seeing the patient first. So, if a person presents predominantly with a memory cognitive disorder and they go see someone who specializes in memory disorders, they're highly likely to be called Alzheimer's disease. If they present predominantly with the movement problem, they're going to see a movement disorder person and be called Parkinson's disease. If they present with a behavioral disorder, they're going to go see a psychiatrist. Then they'll get diagnoses like, you know, geriatric schizophrenia or bipolar disease or major depressive disorder. If they present with the constitutional symptoms, which are very common and drive patients absolutely batty. So chronic constipation, REM sleep disorder, runny nose, you know, heat intolerance, urinary frequency, obstipation, and you know, they're going to be called all sorts of things. So, if you start thinking about this, who do you show up with first is going to guide how fast you can get a diagnosis. So, we interviewed at point over a thousand caregivers and what we found was there was about an eighteen month delay after seeing five to six doctors for the majority of patients, of which Lewy body dementia was misdiagnosed about 75% of the time for the initial diagnosis.  Dr Weathers: Wow, what a sobering statistic. And you spoke about the criteria and some of the ancillary tests. What can really help, do you think, kind of mitigate or prevent this misdiagnosis? What is your approach in your own patients?  Dr Galvin: Well, I think like every good clinician, not starting off with a preconceived notion of what the person has and trying to collect all the valuable information. So, one of the things I highlighted in the article was, while there are diagnostic criteria and people can follow diagnostic criteria, the truth is at your fingertips. You don't always sit and think about whether someone meets diagnostic criteria. So, in the first table in the article, we tried to really then put all the different common symptoms into buckets, right? Because people present like that. They say, well, I have this and I have this and I have this and I have this. Well, then you can start to think about, well, they have a cognitive symptom that's predominantly executive attention or visual perceptual in nature. And gee, they have constipation and heat intolerance and they say they can't smell quite as well as they once did, right, and they're having some disturbance in their sleep with excessive daytime sleepiness. Now you can start to say, well, even though that didn't fit the core and suggestive criteria, the fact is that spectrum of symptoms makes it much easier to begin to make a diagnosis. And so, it's investigative work. A lot of neurology is still investigative work. The old days, they used to say, we knew everything but could do nothing, but now we know everything and can do something about it. And so, I think it's really important that we try to apply this information in clinically useful ways. That was part of the gist of putting this Continuum article together was to try to present it not just as listing the diagnostic criteria, because you can get that anywhere, but how do you actually apply it in clinical practice? Dr Weathers: That's a great point. And that table that you referenced was really fantastic. And I know I say this a lot, but they're true. So, you know, many of the tables, the reference to Continuum, one I will certainly kind of come back to again, again, as an excellent point of care tool. So, I know in, in preparing for today and reading more about, about you and your areas of research that one of your particular areas of focus and expertise is in healthcare disparities, especially in the early detection of neurodegenerative dementias. What is the greatest inequity or disparity that you see in the diagnosis and treatment of patients with Lewy body dementia?  Dr Galvin: So, there's a couple things that are that are really interesting. So first, unlike Alzheimer's disease, which tends to be a little bit more female predominant, the Lewy body dementias are male predominant. It's about 1.6 men for everyone woman. So, it's going to be a different presentation. It's going to be largely men and their caregivers are largely going to be their spouses. So, you're going to see sort of a different person looking, you know, staring on the other side of the table to you. It's going to be largely a male. And the other thing that's really interesting is that almost all of the series, case series, case reports, clinical papers are in predominantly white populations. So, this lends to some interesting things. So, you know, is the disease less common in African Americans and other minority populations or are we just really bad at ascertaining the disease? You know, many of the case reports in Alzheimer's disease include African Americans. In fact, we know that African Americans may be at a twofold increased risk of developing Alzheimer's disease compared to nonHispanic whites, probably due to vascular risk factors. But in case series of Lewy body dementia, almost all the patients are non-Hispanic white. There also seems to be a higher risk in Asian populations, and in fact, some of the very earliest case reports were from Japan. Is this a case ascertainment problem or is this really a disparity in how the disease presents? And I think those are really important questions that still need to be asked. I know as researchers, we struggle to try to develop cohorts that could help us understand that. I would say in my twenty five years of seeing these patients, I would say the large percentage of them, and I've seen a lot of them, have been no-Hispanic white.  Dr Weathers: So, so definitely more research needed in this very important area. So, moving on to somewhat of a personal question, I always, this is such an honor. I always talk about that I get to have this time to sit down with the authors of these outstanding articles and learn not only more about their subjects, but about them as people. I had shared during my last interview that my paternal grandmother had Alzheimer's disease, and unfortunately also my maternal grandmother actually did as well. In preparing for this, I had listened to one of your previous interviews and learned that you also have a personal connection that led you to this subspecialty with several family members impacted. How has this connection inspired your research and your interactions with your patients?  Dr Galvin: Yeah, I mean, so my personal connection was that my maternal grandfather had Lewy body dementia. So, I grew up in a two family home in New Jersey. My grandparents lived on the second floor. We lived on the first floor. I wass very close to my grandparents. I'm still close to my grandmother, who's a hundred and three years old. But when I was a high junior in high school, my grandfather was driving me home from a swimming practice. I was thinner, fitter and more athletic at that point in my life, and he made the world 's slowest left hand turn and we were broadsided. So luckily no one was hurt. But I remember because I was sixteen at the time and just learning how to drive us, Grandpa, what happened? And he's like, oh, the car didn't react. Or, you know, he was blaming the car. And I didn't think much of it because, you know, I was sixteen years old. Sometime after that he was at work, and he was a greaser. So, he would climb through the machines at Colgate Palmolive and keep them all moving. And so, he was at work and he fell off a ladder and then broke his ribs. And in the emergency room, when my grandmother went to pick him up, the ER doctor turned to her and said, how long has your husband had Parkinson's disease? And she's like, what are you talking about? And then that was the first time that all of us had noticed his rest tremor. And the reason he turned the wheel so slow is because he was Bradykinetic. And so then over the next few years, he progressed in his motor symptoms. And then as I got into college, he developed the cognitive symptoms. And so, by the time I had finished medical school that was doing my residency, he was no longer oriented to time. So that even though I had finished medical school, I was in my neurology residency, I was married and with children, I was still in college at that time for him. So, he would always ask me, you know, have I heard anything from getting to medical school and the like. So, I got to watch this person who I grew up with go through all of the different stages of disease. And then eventually he developed lots of hallucinations. And although he was relatively immobile, he experienced a hallucination and jumped out of his chair, fell down, and broke his hip. And so, he underwent a hip replacement, being rather severely demented, and then passed away in the rehab hospital. As I was living this with my grandparents, the one thing that my grandfather, while he could still communicate, and that my grandmother continued to say to me, you know, up until fairly recently was, you know, what are you going to do about this? You know, we're counting on you to make a difference. And so, a lot of my research is really focused on how I can make a difference for people. One, to make sure they get diagnosed properly. Two that we would have something to offer the patient and the family. And three, we can provide hope that we are actually going to come away with effective treatments to make a difference in their lives. Dr Weathers: Well, that is really inspiring. And I think you have really done that in your work. I always like to end these conversations on a hopeful note. So, what are the developments that are on the horizon in terms of diagnosis and treatment of Lewy body dementia that you are most excited about?  Dr Galvin: Well, I think there are three things that are of great interest right now. I mean, there's lots of things, but I think three things of great interest are, one, on the diagnostic side is that we now have assays that allow us to assess synuclein in body fluids and body tissues. So, we can measure synuclein seeding assays in the spinal fluid and we can visualize Lewy bodies through skin biopsies. And that's a tremendous advance because we were really, really limited otherwise to using indirect evidence, and the only indirect evidence we had was abnormalities on DAT scanning. So, we're looking at dopamine deficiencies. But as I mentioned earlier, that's very abnormal in Parkinson's disease. But in dementia with Lewy bodies, it's a little more subtle. So, the extent of dopamine degeneration in- particularly in early DLB is limited. So, you have to look very carefully. If we're not doing quantitative DAT scan imaging, then you may miss those subtle changes. So, I think that being able to directly visualize either synuclein seeding or synuclein aggregation has really changed the game. Plasma assays, blood-based biomarkers are probably a little farther away because they're- the red blood cells have a lot of synuclein and so it interferes with the ability to get a good sensitive assay. But I do think in the next couple of years we will see PET ligands that also bind  synnuclein. So, I think diagnostically we're going to be able to provide better, earlier, and more precise diagnoses. From a treatment perspective, traditionally we've just borrowed medicines from other fields to treat symptoms, but there are a number of disease-modifying trials that are ongoing. I was fortunate to be the academic PI on two very large NIH grants where we test tested disease modifying medicines. Both of those studies are fully recruited and we should get a readout toward the end of 2024 or the beginning of 2025. So very, very excited about that. I also am fortunate to be MPI an NIH grant where we're just going to be testing the first inhuman synuclein vaccine. So very, very excited about the potential to offer disease-modifying medicines and to fulfill the promise that I made to my grandma and grandpa twenty years ago. And I think the third thing is that right now there's a little bit of like an emerging controversy about developing some integrated staging paradigms between the movement disorder world and the cognitive world. And so, while those paradigms are currently published, you know, not everybody agrees with them. But I think whether I like that staging paradigm now or not, the fact that we're coming together and trying to develop some unified staging paradigms, I think, is going to make a big difference in increasing the ability for clinicians to make early diagnoses that are more precise so that we can either get people into clinical trials or into clinical treatment protocols at the earliest possible time. And that's going to make all the difference in the world for the patients and their families.  Dr Weathers: I think that was a fantastic answer. Really, all really exciting things that I think are all, I normally, I say on the horizon. I'm thinking, you know, pretty far ahead. And I think the really wonderful thing is that all of these are either here now or very, very close to being here. So, definitely a very positive way to end this discussion. Well, Jim, thank you so much for taking the time to speak with me today. Dr Galvin: Thank you. This was wonderful. I hope the listeners found this enjoyable and interesting and read the Continuum issue. I think it's going to be the latest and greatest on what we know about the dementias.  Dr Weathers: Again, thank you again, Dr Galvin, for joining me on Continuum Audio. Again, today I've been reviewing Dr James Galvin, his article on the Lewy body dementias, dementia with Lewy bodies, and Parkinson's disease dementia appears in the December 2024 Continuum issue on dementia. Be sure to check out Continuum Audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, associate editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/AudioCME. Thank you for listening to Continuum Audio.

98% of people with dementia experience challenging behaviors like agitation, anxiety, and restlessness. These behaviors can be overwhelming, but there's hope!

Wondering what the difference is between Lewy Body Dementia and Parkinson's Disease?

Do all people with Parkinson's disease get dementia? And what exactly is the difference between Parkinson's disease and Parkinson's disease dementia?

Ladies and gentlemen, with honesty, tenderness and, yes, sometimes humor, the film Facing the Wind invites viewers into the lives of people with Lewy body dementia and their caregivers…real people in real time.  FACING THE WIND, a sixty-minute documentary film, reveals how a mutual support community can be an antidote to despair, letting people know they are not alone.  You will follow their journey, laughing and crying with them, while taking an unflinching look at dementia care with its overwhelming and isolating aspects. The struggle is real, but so is the love. Lewy body dementia is not a rare disease. It affects more than 1.4 million people in America. It is the second most common form of dementia, but it still being misdiagnosed. Alzheimer's disease is the gradual decline of memory as Lewy body dementia is the roller coaster ride with ups and downs. One moment the patient can be fully present and lucid and the next be completely lost or deal with hallucinations from mild to severe. There is no cure, but this very powerful film documentary is not for those suffering with Lewy body dementia, but for the people who care for them. Many spouses and family members are thrust into being a caregiver and navigating the vast ocean of the unknown. FACING THE WIND is a starting place for caregivers and to know that it's ok to not be ok. Head over to LewyBodyResourceCenter.org for more information. If your loved one was diagnosed with Lewy body dementia, you are not alone and there are resources right now that can help you. Facing the Wind is the latest collaboration of award-winning director Deedra Fishel and producer Tony Heriza. Their groundbreaking film Care, funded by the Ford and MacArthur Foundations, shed light on America's broken eldercare system. Deerdra and Tony both have family members with dementia and share deep empathy for those with the disease and their caregivers. Deerdra Fishel has been writing and directing documentaries and dramas for 25 years now. Her life's goal is to create complex, realistic portraits that challenge mainstream stereotypes and work to improve lives. She started her career at WNYC-TV where she produced a half-hour program on women community organizers working to save the South Bronx. She went on to write/direct RISK, a dramatic feature, which premiered in competition at Sundance and was broadcast in 35 countries. Tony Heriza's award-winning films and videos have addressed a broad range of social issues, including gentrification, immigration, racism, gender equity, sexuality, criminal justice, and peace-building. His New Day film, Care, produced with Deerdra Fishel, is an intimate exploration of home-based elder care from the POV of both workers and their clients. #lewybodydementia #lewybody #dementia #alzheimersdisease #alzheimers #parkinsonsdisease #film #filmdocumentary #documentary #mentalhealth #memory #brainhealth #medicine #wellness

Ladies and gentlemen, with honesty, tenderness and, yes, sometimes humor, the film Facing the Wind invites viewers into the lives of people with Lewy body dementia and their caregivers…real people in real time.  FACING THE WIND, a sixty-minute documentary film, reveals how a mutual support community can be an antidote to despair, letting people know they are not alone.  You will follow their journey, laughing and crying with them, while taking an unflinching look at dementia care with its overwhelming and isolating aspects. The struggle is real, but so is the love. Ladies and gentlemen, Lewy body dementia is not a rare disease. It affects more than 1.4 million people in America. It is the second most common form of dementia, but it still being misdiagnosed. Alzheimer's disease is the gradual decline of memory as Lewy body dementia is the roller coaster ride with ups and downs. One moment the patient can be fully present and lucid and the next be completely lost or deal with hallucinations from mild to severe. There is no cure, but this very powerful film documentary is not for those suffering with Lewy body dementia, but for the people who care for them. Many spouses and family members are thrust into being a caregiver and navigating the vast ocean of the unknown. FACING THE WIND is a starting place for caregivers and to know that it's ok to not be ok. Head over to LewyBodyResourceCenter.org for more information. If your loved one was diagnosed with Lewy body dementia, you are not alone and there are resources right now that can help you. Mary Lou Falcone, author of the book, “I Didn't See It Coming: Scenes of Love, Loss and Lewy Body Dementia”. Mary Lou Falcone, author of I DIDN'T SEE IT COMING: Scenes of Love, Loss, and Lewy Body Dementia, is internationally known as a classical music publicist/strategist who for 50 years has helped guide the careers of celebrated artists – Van Cliburn, Gustavo Dudamel, Renée Fleming, Sir Georg Solti, James Taylor – and advised many institutions including Carnegie Hall, Chicago Symphony, Los Angeles Philharmonic, Philadelphia Orchestra, New York Philharmonic, Vienna Philharmonic.  Combining communication skills with her background as a performer and educator, she now adds another layer: advocate for Lewy body dementia (LBD) awareness.  Her late husband, the illustrator/painter Nicky Zann who died from LBD in 2020, was the catalyst for her book.  She is also an Executive Producer of a new documentary film about LBD entitled Facing the Wind, a love story about people with Lewy body dementia, the spouses who care for them, and the remarkable community where they find sustenance and support. #lewybodydementia #lewybody #dementia #alzheimersdisease #alzheimers #parkinsonsdisease #brainhealth #medicine #filmdocumentary #documentary #health #wellness #caregiving #caregivers 

Ladies and gentlemen, with honesty, tenderness and, yes, sometimes humor, the film Facing the Wind invites viewers into the lives of people with Lewy body dementia and their caregivers…real people in real time.  FACING THE WIND, a sixty-minute documentary film, reveals how a mutual support community can be an antidote to despair, letting people know they are not alone.  You will follow their journey, laughing and crying with them, while taking an unflinching look at dementia care with its overwhelming and isolating aspects. The struggle is real, but so is the love. Lewy body dementia is not a rare disease. It affects more than 1.4 million people in America. It is the second most common form of dementia, but it still being misdiagnosed. Alzheimer's disease is the gradual decline of memory as Lewy body dementia is the roller coaster ride with ups and downs. One moment the patient can be fully present and lucid and the next be completely lost or deal with hallucinations from mild to severe. There is no cure, but this very powerful film documentary is not for those suffering with Lewy body dementia, but for the people who care for them. Many spouses and family members are thrust into being a caregiver and navigating the vast ocean of the unknown. FACING THE WIND is a starting place for caregivers and to know that it's ok to not be ok. Head over to LewyBodyResourceCenter.org for more information. If your loved one was diagnosed with Lewy body dementia, you are not alone and there are resources right now that can help you. Facing the Wind is the latest collaboration of award-winning director Deedra Fishel and producer Tony Heriza. Their groundbreaking film Care, funded by the Ford and MacArthur Foundations, shed light on America's broken eldercare system. Deerdra and Tony both have family members with dementia and share deep empathy for those with the disease and their caregivers. Deerdra Fishel has been writing and directing documentaries and dramas for 25 years now. Her life's goal is to create complex, realistic portraits that challenge mainstream stereotypes and work to improve lives. She started her career at WNYC-TV where she produced a half-hour program on women community organizers working to save the South Bronx. She went on to write/direct RISK, a dramatic feature, which premiered in competition at Sundance and was broadcast in 35 countries. Tony Heriza's award-winning films and videos have addressed a broad range of social issues, including gentrification, immigration, racism, gender equity, sexuality, criminal justice, and peace-building. His New Day film, Care, produced with Deerdra Fishel, is an intimate exploration of home-based elder care from the POV of both workers and their clients. #lewybodydementia #lewybody #dementia #alzheimersdisease #alzheimers #parkinsonsdisease #film #filmdocumentary #documentary #mentalhealth #memory #brainhealth #medicine #wellness

Ladies and gentlemen, with honesty, tenderness and, yes, sometimes humor, the film Facing the Wind invites viewers into the lives of people with Lewy body dementia and their caregivers…real people in real time.  FACING THE WIND, a sixty-minute documentary film, reveals how a mutual support community can be an antidote to despair, letting people know they are not alone.  You will follow their journey, laughing and crying with them, while taking an unflinching look at dementia care with its overwhelming and isolating aspects. The struggle is real, but so is the love. Ladies and gentlemen, Lewy body dementia is not a rare disease. It affects more than 1.4 million people in America. It is the second most common form of dementia, but it still being misdiagnosed. Alzheimer's disease is the gradual decline of memory as Lewy body dementia is the roller coaster ride with ups and downs. One moment the patient can be fully present and lucid and the next be completely lost or deal with hallucinations from mild to severe. There is no cure, but this very powerful film documentary is not for those suffering with Lewy body dementia, but for the people who care for them. Many spouses and family members are thrust into being a caregiver and navigating the vast ocean of the unknown. FACING THE WIND is a starting place for caregivers and to know that it's ok to not be ok. Head over to LewyBodyResourceCenter.org for more information. If your loved one was diagnosed with Lewy body dementia, you are not alone and there are resources right now that can help you. Mary Lou Falcone, author of the book, “I Didn't See It Coming: Scenes of Love, Loss and Lewy Body Dementia”. Mary Lou Falcone, author of I DIDN'T SEE IT COMING: Scenes of Love, Loss, and Lewy Body Dementia, is internationally known as a classical music publicist/strategist who for 50 years has helped guide the careers of celebrated artists – Van Cliburn, Gustavo Dudamel, Renée Fleming, Sir Georg Solti, James Taylor – and advised many institutions including Carnegie Hall, Chicago Symphony, Los Angeles Philharmonic, Philadelphia Orchestra, New York Philharmonic, Vienna Philharmonic.  Combining communication skills with her background as a performer and educator, she now adds another layer: advocate for Lewy body dementia (LBD) awareness.  Her late husband, the illustrator/painter Nicky Zann who died from LBD in 2020, was the catalyst for her book.  She is also an Executive Producer of a new documentary film about LBD entitled Facing the Wind, a love story about people with Lewy body dementia, the spouses who care for them, and the remarkable community where they find sustenance and support. #lewybodydementia #lewybody #dementia #alzheimersdisease #alzheimers #parkinsonsdisease #brainhealth #medicine #filmdocumentary #documentary #health #wellness #caregiving #caregivers 

My guest today is the founder and executive director of the Lewy body Resource Center. Norma's knowledge and experience with Lewy body dementia began with the personal care of her mother, Lillian, who had LBD for many years. Norma has been facilitating the only New York Metro area LBD caregivers support groups since 2008.  She also leads a national group for people living with LBD which has been lauded.  She served on the board of directors of the Lewy Body Dementia Association for three years before launching the LBD Resource Center in 2016 to provide much needed support and resources on more personal and connective levels. Norma worked as executive assistant to the CFO at The New York Times Company for over 20 years. While there, she served as chairperson of the work/life committee of The New York Times' women's affinity group and initiated and ran their eldercare support group. Her expertise working with the top executives at The Times, as well as her managerial experience as executive director and a co-founder of What BETTER Looks Like, a nonprofit organization which partners with communities to help individuals imagine, articulate, and create visions for a better world, has prepared her to lead the LBD Resource Center which is very dear to her heart. Ladies and gentlemen, Lewy body dementia (LBD) is the second most common form of progressive dementia, affecting more than 1.4 million Americans. Because LBD comes with a host of physical, cognitive and behavioral symptoms, it often mimics Alzheimer's disease, Parkinson's disease or a psychiatric disorder. As a result, it is widely misdiagnosed. Even as diagnoses increase, resources for people with LBD and their families still remain extremely limited. Citing this lack of resources and assistance, the Lewy Body Dementia Resource Center was founded to provide much needed services and support for people with LBD and their loved ones. Go to LewybodyResourceCenter.org or LDBNY.org for more information. #lewybodydementia #lewybody #dementia #brainhealth #mentalhealth #resourcecenter #facingthewind #LBD #misdiagnosis #Alzheimers #AlzheimersDisease #ParkinsonsDisease #medicine #wellness #psychiatricdisorders 

My guest today is the founder and executive director of the Lewy body Resource Center. Norma's knowledge and experience with Lewy body dementia began with the personal care of her mother, Lillian, who had LBD for many years. Norma has been facilitating the only New York Metro area LBD caregivers support groups since 2008.  She also leads a national group for people living with LBD which has been lauded.  She served on the board of directors of the Lewy Body Dementia Association for three years before launching the LBD Resource Center in 2016 to provide much needed support and resources on more personal and connective levels. Norma worked as executive assistant to the CFO at The New York Times Company for over 20 years. While there, she served as chairperson of the work/life committee of The New York Times' women's affinity group and initiated and ran their eldercare support group. Her expertise working with the top executives at The Times, as well as her managerial experience as executive director and a co-founder of What BETTER Looks Like, a nonprofit organization which partners with communities to help individuals imagine, articulate, and create visions for a better world, has prepared her to lead the LBD Resource Center which is very dear to her heart. Ladies and gentlemen, Lewy body dementia (LBD) is the second most common form of progressive dementia, affecting more than 1.4 million Americans. Because LBD comes with a host of physical, cognitive and behavioral symptoms, it often mimics Alzheimer's disease, Parkinson's disease or a psychiatric disorder. As a result, it is widely misdiagnosed. Even as diagnoses increase, resources for people with LBD and their families still remain extremely limited. Citing this lack of resources and assistance, the Lewy Body Dementia Resource Center was founded to provide much needed services and support for people with LBD and their loved ones. Go to LewybodyResourceCenter.org or LDBNY.org for more information. #lewybodydementia #lewybody #dementia #brainhealth #mentalhealth #resourcecenter #facingthewind #LBD #misdiagnosis #Alzheimers #AlzheimersDisease #ParkinsonsDisease #medicine #wellness #psychiatricdisorders 

Ever wondered why hallucinations happen in dementia and how you can help your loved one through them?

In this heartfelt episode, we sit down with Jan Riggs, a dedicated caregiver navigating the transitions of caring for her husband, who is in the late stages of Lewy Body Dementia. Jan shares her deeply personal journey, offering insights into the emotional and practical aspects of caring for someone with advanced-stage dementia. She opens up about the joys and struggles of maintaining connection, prioritizing quality of life, managing her changing role, and finding resources in the community. Whether you're a caregiver, a loved one, or simply curious about the realities of dementia care, Jan's story is sure to resonate.  

Delanie Fischer is joined by Erika Martin, who shares about her dad's diagnosis with Lewy Body Dementia — how it's impacting her family, resources and logistics for immediate and long-term care, and how she's grieving and coping. If someone you love has been diagnosed with a terminal illness, this episode has so much to offer, and is part of our series, "Subscriber Stories."Plus:+ Finding The Right Support Group For You + Erika's Favorite Quote For Tough Days + 3 Things Helping Erika In Her Day-To-DayMore episodes related to this topic:When A Family Member Has Dementia with Kelsey Cook: https://www.selfhelplesspodcast.com/episodes/episode/24621f0a/when-a-family-member-has-dementia-with-kelsey-cookRethinking the 5 Stages of Grief with Krista St-Germain: https://www.selfhelplesspodcast.com/episodes/episode/2fc9f314/rethinking-the-5-stages-of-grief-with-krista-st-germainCaregiver Burnout: https://www.selfhelplesspodcast.com/episodes/episode/246fddd8/caregiver-burnoutCompounded Grief: Coping With Multiple Losses At Once with Stephanie Edwards: https://www.selfhelplesspodcast.com/episodes/episode/250aef7a/compounded-grief-coping-with-multiple-losses-at-once-with-stephanie-edwardsYou can join our Patreon community here: https://www.patreon.com/selfhelplessYour Host, Delanie Fischer: https://www.delaniefischer.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Sometimes life hands us a situation, or an experience, that we never expected. Maybe it's something exciting, like a new relationship or adventure, but sometimes it can be full of sorrow, too, like the loss of a job we loved or an unexpected illness that derails everything. But it's in those moments that we find out who we are, and what God has made us capable of, giving us an opportunity to really show up for others. This week, we sit down with Josh Baldwin, a worship leader, songwriter, and artist with over two decades of experience. Josh opens up about walking through a challenging season of mental health in his family, and how he turned to music for comfort and direction from the Lord, which he now uses to bring comfort and peace to his listeners.  Later, we'll hear from Diane Chew, known as Dementia Coach Diane, a life coach and caregiver for her husband, Ben, who has Lewy Body Dementia. Diane shares practical tips for dementia care and emphasizes self-care for caregivers, drawing from her experiences of over fifty years with Ben and the challenges of his cognitive decline. She finds solace and community through social media and discusses the crucial role of faith in navigating these challenges. Links, Products, and Resources Mentioned: Jesus Calling Podcast Jesus Calling Jesus Always Jesus Listens Past interview: Jennie Finch Upcoming interview: Joe Dobbins Jesus Calling commemorative edition   Josh Baldwin “History Maker” by Delirious? www.joshbaldwin.com   Diane Chew Dementia Coach Diane Lewy Body Dementia Matthew 6:25 NIV Philippians 4:6-7 NIV Emotional Freedom Technique www.dementiacoachdiane.com   Song permission: Prince of Peace Josh Baldwin, Hank Bentley, Ben Fielding © 2023 Bethel Music Publishing (ASCAP) / Glory Ghost Publishing (ASCAP) (admin by Bethel Music Publishing). All Rights Reserved. Used by Permission.   Interview Quotes: “Wherever He's given permission to reign in my life, then the peace just automatically is there because the peace follows Him.” - Josh Baldwin  “I feel like it's hard for me to be anxious about things and grateful to the Lord for all He's done at the same time.” - Josh Baldwin “I felt like all I could do was kind of react to one mini crisis after another. I was just responding and reacting to what felt like a constant emergency.” - Diane Chew   “I needed somehow to process everything that was happening every day. I wanted to find the blessings, but I was often trapped in my own head, and I was isolated and alone and scared and I didn't know what to do.” - Diane Chew  “We have three choices in life when we face circumstances that we didn't expect. We can change them, we can accept them, or we can suffer.” - Diane Chew  “It takes constant practice to look for the blessings, and to stay connected to something bigger than my thoughts and feelings.” - Diane Chew  “It takes stubbornness, I think, to not go down with the ship. I am not going to give up my life. Ben wouldn't want me to do that.” - Diane Chew  “The Holy Spirit will give us the wisdom to know what I just need to let go of, and what I can act on, and to give me that strength and faith to act when I can and let go when I can't.” - Diane Chew  ________________________ Enjoy watching these additional videos from Jesus Calling YouTube channel! Audio Episodes:     https://bit.ly/3zvjbK7  Bonus Podcasts:     https://bit.ly/3vfLlGw  Jesus Listens: Stories of Prayer:  https://bit.ly/3Sd0a6C  Peace for Everyday Life:     https://bit.ly/3zzwFoj  Peace in Uncertain Times:     https://bit.ly/3cHfB6u  What's Good?     https://bit.ly/3vc2cKj  Enneagram:     https://bit.ly/3hzRCCY  ________________________  Connect with Jesus Calling Instagram Facebook Twitter Pinterest YouTube Website TikTok

The Caregiver's Journal hosted by Lance A. Slatton with Cindy (PT) & Christina (ST) Hardin-Weiss.   The Caregiver's Journal is the show where we are sharing the caregiving experiences, stories, and wisdom of family caregivers.   Chapter 6 - "Finding Care":   In this journal entry, we welcomed Michelle Stevens who shared her caregiving journey and how she is "Finding Care".   About Michelle Stevens:   Michelle Stevens spent 20 years as a caregiver, with the last 13 focused on dementia care, helping elderly patients with Alzheimer's and Lewy Body Dementia. The past three years were especially intense for her as she cared for her mom full-time during her fight with LBD, staying with her until the very end.   Since 2016, she has also gained expertise in ostomy care after her mom had her bladder removed due to cancer, which added an extra layer of complexity to her dementia care. Michelle's goal is to share her experiences to guide and support others on this difficult journey. She wants to be an advocate for both patients and caregivers, bringing some ease and calm to the process. Through her work, she hopes to turn her own painful experiences into something positive, helping others navigate their way with empathy and understanding.   Connect with Michelle Stevens: Instagram: @dementia_caregiver_chronilces   YouTube:  @dementiacaregiverchronicles   Email: dementiacaregiverchronicles@gmail.com   About Cindy (PT) & Christina (ST):   Cindy graduated in 1992 with a Master's Degree in Physical Therapy from Washington University in St Louis, MO. The majority of her career has been spent in Home Healthcare. She is passionate about helping people maintain their independence, especially when it makes a difference in their ability to remain in their homes.  Christina graduated from Eastern Illinois University with a Master's degree in Communication Disorders & Science. She spent most of her career treating patients in skilled nursing facilities. She enjoys working with individuals who have dementia and educating their families. She also likes helping people who have difficulty eating, chewing, and swallowing due to illness or disease.   Cindy and Christina are the founders of Adaptive Equipment Caregiving Corner (AEC).   Visit the Official Site for Adaptive Equipment Caregiving Corner(AEC): https://adaptiveequipmentcorner.com/   About Lance A. Slatton:   Lance A. Slatton is a dedicated Writer, Author, Influencer, and seasoned Healthcare professional with a rich background spanning over 20 years in the healthcare industry. As a beacon of knowledge and support in the realm of senior care, Lance's journey is not just a career but a calling to make a meaningful difference in the lives of families, caregivers, and their loved ones as they navigate the complexities of long-term care. Lance was named a "50 Under 50" in 2023 by the NYC Journal.   Lance's show All Home Care Matters has won multiple awards for its advocacy and impact in helping caregivers and those in the long-term care space.   Connect with Lance A. Slatton: Official Website: https://www.lanceaslatton.com   Connect with All Home Care Matters: Official Website: https://www.allhomecarematters.com

Conscious Caregiving with L & L is "Tackling the Tough Conversations."   The topic of this episode is "Dementia Influencers" and features an All-Star Panel.   Norman McNamara, Living with Dementia, Founder of the Purple Angel   Rev. Katie Norris, Montessori Based Dementia Care Practitioner, Owner of Recourse Coaching:   She is a Trauma-Informed Montessori dementia care specialist for 14 years and is an AMI Montessori for Aging and Dementia Practitioner. She is the primary author of Creative Connections in Dementia Care and she teaches Montessori care to family members, care communities, and home health agencies. She is also a family dementia care partner as her father has Alzheimer's and her mother had Lewy Body Dementia.   Vicki de Klerk-Rubin, Executive Director of the Validation Training Institute:   Vicki de Klerk-Rubin is the Executive Director of the Validation Training Institute and a certified Validation Master Teacher. She is the author of Validation Techniques for Dementia Care and Validation for First Responders. Together with her mother Naomi Feil, the founder of the Validation method, she co-authored the revisions of Validation: The Feil Method and The Validation Breakthrough.   Dr. Jennifer Bute, Living with Dementia, International Advocate:   Dr Jennifer Bute, worked in Africa as a doctor before working as a GP for 25 years involved in medical education. And was an honorary lecturer at Southampton university, She had to take early retirement when diagnosed with dementia but continues to use her skills She speaks at conferences, on radio, and has been spoken on International radio and appeared on UK television programmes raising awareness and understanding of dementia. She passionately believes more can be done to improve both the present and the future for those living with dementia. Her book ‘Dementia from the Inside".   Mary Underwood, Dementia Care Specialist. Founder of Empowermentia:   Mary Underwood is a social worker who has been in the field of memory care for over 35 years. She has worked in a variety of settings including home care, adult day programs, assisted living and nursing homes. Over the years, she has developed innovative programs and training sessions.   Cyndy Luzinski, Executive Director of Dementia Together - MS, RN, L® Practitioner:   Cyndy Hunt Luzinski is an advanced practice nurse with a nursing background which ranges from critical care to community case management. In honor of her dad, she founded Dementia Together, a nonprofit organization in Northern Colorado which offers education, enrichment, and hope.   Laurie Scherrer, International Advocate, DAA Executive Board Member and Programs Director:   Laurie Scherrer was diagnosed with Early Onset Alzheimer's & FTD at the age of 55. Unable to continue a professional career she turned her focus towards helping others through their dementia journey. Laurie serves on the Dementia Action Alliance Board of Directors. She is an international speaker and has been featured in many articles and documentaries.   Debbie DeMoss Compton, CEO & Founder, The Purple Vine LLC:   Debbie Compton is a three-time caregiver for parents with different forms of Dementia. She is a Certified Caregiving Consultant and Advocate, Educator for the Alzheimer's Assoc., speaker, and author of 10 books. Debbie founded The Purple Vine, whose mission is to empower caregivers to reduce stress, block burnout, and laugh again. Debbie's latest work is a collaboration book titled The Caregiver's Advocate, A Complete Guide to Support and Resources, produced by Brave Healer Productions and available for purchase in early July 2024.   Ellen Belk, BC-DEd, CDP, Silver Living Strategist. Founder of Keep In Mind, Inc. & Creator of The Keep In Mind Dementia Education Community:   Ellen Belk is a board-certified Dementia educator, Holistic Dementia care solutions expert and founding owner of Keep In Mind, Inc. A sought after web-educator & Keynote speaker, Ellen has over 22 years of professional leadership in long term living operations combined with 24 years (and still counting) of primary family caregiving for both of her parents. Join Ellen on the 'Keep In Mind Dementia Education Community', where her mission is to Elevate the Global Dementia IQ - one Student at a Time!   Isabelle Mumby, Commercial Manager, Mumby's Live-in Care: I   sabelle Mumby is the daughter of Trevor Mumby MSc. MBASW. AGPA (USA) and Commercial Manager at Mumby's Live-in Care, a family-run specialist Live-in care provider in Oxfordshire, UK. Trevor is a co-director of Mumby's Live-in Care, a recognized psychoanalyst, counsellor, and dementia publications author.   To learn more about this topic and the panel read the article that encompasses this episode here: https://alzheimersspeaks.com/?p=40650   Lance A. Slatton and Lori La Bey Co-Host and Produce Conscious Caregiving with L & L.