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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
There is an important role for cost-effective clinical biomarkers in the diagnosis of Parkinson's disease. Dr. Eduardo de Pablo-Fernández and Dr. Cecilia Tremblay discuss how accurate hyposmia and REM sleep behavior disorder can predict Lewy pathology in a non-selected population using data from the Arizona clinicopathological study on Aging and Neurodegeneration. Read the article.
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
Welcome to PsychEd, the psychiatry podcast for medical learners, by medical learners. This primer covers the differential diagnosis of dementia. Hosts: Dr. Alastair Morrison (PGY-1) and Dr. Angad Singh (PGY-1) Audio editing by: Dr. Angad Singh (PGY-1) Resources: MoCA: https://dementia.talkbank.org/protocol/materials/MOCA.pdf MMSE: https://meded.temertymedicine.utoronto.ca/sites/default/files/assets/resource/document/mini-mental-state-examinationmmse.pdf Beers Criteria: American Geriatrics Society 2023 updated AGS Beers Criteria® for potentially inappropriate medication use in older adults PsychEd Episode 49: Dementia Assessment with Dr. Lesley Wiesenfeld References: American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596 Francis, J. & Young, B. (2022). Diagnosis of delirium and confusional states. UpToDate. Retrieved January 31, 2025, from https://www.uptodate.com/contents/delirium-and-acute-confusional-states-prevention-treatment-and-prognosis Larson, E. B. (2022). Evaluation of cognitive impairment and dementia. UpToDate. Retrieved January 31, 2025, from https://www.uptodate.com/contents/evaluation-of-cognitive-impairment-and-dementia PsychDB. (2022, Oct 3). Introduction to Dementia. Retrieved January 31, 2025, from https://www.psychdb.com/geri/dementia/home PsychDB. (2024, Feb 1). Delirium. Retrieved January 31, 2025, from https://www.psychdb.com/cl/1-delirium PsychDB. (2024, Feb 9). Alzheimer's Disease. Retrieved January 31, 2025, from https://www.psychdb.com/geri/dementia/alzheimers PsychDB. (2023, Oct 12). Vascular Dementia. Retrieved January 31, 2025, from https://www.psychdb.com/geri/dementia/vascular PsychDB. (2024, Jan 23). Frontotemporal Dementia. Retrieved January 31, 2025, from https://www.psychdb.com/geri/dementia/frontotemporal PsychDB. (2024, Feb 5). Dementia with Lewy Bodies. Retrieved January 31, 2025, from https://www.psychdb.com/geri/dementia/lewy-body For more PsychEd, follow us on Instagram (@psyched.podcast), Facebook (PsychEd Podcast), and X (@psychedpodcast). You can email us at psychedpodcast@gmail.com and visit our website at psychedpodcast.org.
Lewy Body sjukdom handlar om onormala proteinavlagringar i hjärnan som vissa av oss får. De kallas Lewy Bodies och orsakar fysiska och psykiska symptom hos en person. Tidiga symptom är utlevande drömmar, förlorat luktsinne, depression, ångest, svårt att orientera sig, hallucinationer, förvirring och sömnsvårigheter. Minnesstörningar är inte konstanta utan persone kan vara het klar stundvis. Sjukdomen är gravt underdiagnosticerad. 29 januari är LBDdagen och vi uppmärksammar det med en forskningspodd med den främsta experten inom området, Elisabet Londos, överläkare och professor vid minnesmottagningen och minneskliniken i Malmö. Intervjuar gör Johanna Hinteregger. Gillar du det vi gör? Stöd oss: Swisha 1234866208. Alzheimer Life arbetar för att öka kunskap om kognitiva sjukdomar i allmänhet och Alzheimer i synnerhet. Vi vill speciellt ge röst åt de personer som nyligen fått en kognitiv sjukdom diagnostiserad och som behöver både uppmuntran och verktyg för att få ett fungerande liv.
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.
5 Scary but Totally Normal Caregiver Experiences Being a caregiver is tough—and sometimes downright scary.
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.
Dr. Vikram Karnik and Dr. Kate Wyman-Chick discuss distinguishing prodromal dementia with Lewy bodies from prodromal Alzheimer disease and the implications for clinical practice. Show reference: https://www.neurology.org/doi/10.1212/CPJ.0000000000200380
Dr. Vikram Karnik talks with Dr. Kate Wyman-Chick about distinguishing prodromal dementia with Lewy bodies from prodromal Alzheimer disease, the importance of early diagnosis, and the implications for clinical practice. Read the related article in Neurology: Clinical Practice. Disclosures can be found at Neurology.org.
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
The Penguin Season 1 Episode 7 - INSTANT REACTION - Top Hat. Listen in as Craig Lake and Dan McNair give their opinions on the HBO / Max show. In this episode we discuss zombies, Double Dragon, butt tattoos, Lewy Body dementia, and more. Please also join us for our coverage of The Last of Us Season 2 and Yellowjackets Season 3 coming soon. X @prestige_ish Instagram @prestigeishmedia X/Instagram @realrealbatman @danmcnair1017 http://prestigeish.com
In this original What the Dementia episode, we will discuss the use of antipsychotic medications for people with Lewy body dementia. This episode will cover: — Risks associated with antipsychotics for Lewy body dementia. — Differences between typical and atypical antipsychotics. — FDA warnings on antipsychotic use in dementia care. — Alternative approaches before considering medication. — Key antipsychotics to avoid and those used with caution. REFERENCES: https://www.lbda.org/treatment-of-behavioral-symptoms-when-to-consider-antipsychotic-medications-in-lbd/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6353494/ Treatment of Lewy Body Dementia by LBDA MENTIONED IN EPISODE: Treehouse | https://letsbambu.com/treehouse List of Antipsychotics | https://letsbambu.link/antipsychotic-list Podcast: Lewy Body Dementia – Those Darn Lewy bodies! | Episode 042 Podcast: Parkinson's Disease Dementia – The 1-Year Rule | Episode 146 Video: 4 Cardinal Symptoms of Dementia with Lewy Bodies CONNECT, GET RESOURCES, LEARN MORE, + SIMPLIFY YOUR CARE JOURNEY: LinkTree | https://www.bambu.care MUSIC CREDIT: Listen To SpillageVillage - Tropical Landing Pop Songs At Looperman.com DISCLAIMER: The information contained in Bambu Care LLC's website, blog, emails, programs, services and/or products is for educational and informational purposes only. While we draw on our prior professional expertise and background in other areas, you acknowledge that we are supporting you in our role exclusively as a Dementia Care Consultant. By participating in Bambu Care, LLC's website, blog, emails, programs, services and/or products, you acknowledge that we are not a licensed psychologist, professional counselor, or medical doctor. We in no way, diagnose, treat, or cure any illnesses or diseases. Dementia Care Consulting is in no way to be construed or substituted as psychological counseling or any other type of therapy or medical advice. The information provided by Bambu Care, LLC also does not constitute legal or financial advice nor is intended to be. Dementia Care Consulting is not a substitute for the services of a CPA or attorney.
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.
Marianne and Christy engage in a heartfelt conversation with Allene Symons, devoted caregiver to her late husband Allen, who battled Lewy Body dementia. She's the author of Love in a Time of Caterpillars: A Memoir of Monarchs and Caregiving. Her unique perspective on utilizing butterfly gardening as a source of therapy and joy, along with her insights on managing personal health crises during caregiving, make her a compelling and relatable guest. Allene shares how their hobby of tending to a butterfly garden became a source of therapy and hope, offering moments of respite and joy amidst the challenges of dementia. The simple act of observing caterpillars transforming into butterflies not only brought light to her husband's eyes but also became a cherished activity that bonded their caregivers with the natural world, providing a sense of purpose and connection. Allene's story beautifully illustrates the profound impact of outdoor activities and nature therapy in dementia care, showcasing the power of finding beauty and comfort in the midst of adversity. Her experiences highlight the importance of nature therapy, and the challenges faced by caregivers, especially amidst the disruptions caused by the COVID-19 pandemic. She also shares the difficulties she endured when she was diagnosed and treated for breast cancer during the pandemic. Quote "The extreme flexibility we need when we're caregivers who are a loved one with dementia is core to the journey." In this episode you will: Discover the unexpected connection between butterfly gardening and dementia care. Find out how one caregiver found joy and solace in nature therapy. Learn effective strategies for managing technology with dementia patients. Understand the unique impact of COVID-19 on dementia care and how to navigate it. Explore the compassionate use of loving lies in dementia caregiving. Embrace the importance of outdoor activities in improving the emotional well-being of dementia patients. After the podcast Read Allene's AlzAuthors post: we'll get this once it's published.Connect with Allene Website LinkedIn X-Twitter Facebook Instagram Purchase Love in a Time of Caterpillars now. Note: We are an Amazon Associate and may receive a small commission from book sales. Mentions Alzheimer's Association Companion cards PDF (download and print) 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
Marianne and Christy engage in a heartfelt conversation with Allene Symons, devoted caregiver to her late husband Allen, who battled Lewy Body dementia. She's the author of Love in a Time of Caterpillars: A Memoir of Monarchs and Caregiving. Her unique perspective on utilizing butterfly gardening as a source of therapy and joy, along with her insights on managing personal health crises during caregiving, make her a compelling and relatable guest. Allene shares how their hobby of tending to a butterfly garden became a source of therapy and hope, offering moments of respite and joy amidst the challenges of dementia. The simple act of observing caterpillars transforming into butterflies not only brought light to her husband's eyes but also became a cherished activity that bonded their caregivers with the natural world, providing a sense of purpose and connection. Allene's story beautifully illustrates the profound impact of outdoor activities and nature therapy in dementia care, showcasing the power of finding beauty and comfort in the midst of adversity. Her experiences highlight the importance of nature therapy, and the challenges faced by caregivers, especially amidst the disruptions caused by the COVID-19 pandemic. She also shares the difficulties she endured when she was diagnosed and treated for breast cancer during the pandemic. Quote "The extreme flexibility we need when we're caregivers who are a loved one with dementia is core to the journey." In this episode you will: Discover the unexpected connection between butterfly gardening and dementia care.Find out how one caregiver found joy and solace in nature therapy.Learn effective strategies for managing technology with dementia patients.Understand the unique impact of COVID-19 on dementia care and how to navigate it.Explore the compassionate use of loving lies in dementia caregiving.Embrace the importance of outdoor activities in improving the emotional well-being of dementia patients. After the podcast Read Allene's AlzAuthors post: we'll get this once it's published.Connect with Allene Website LinkedIn X-Twitter Facebook Instagram Purchase Love in a Time of Caterpillars now. Note: We are an Amazon Associate and may receive a small commission from book sales. Mentions Alzheimer's Association Companion cards PDF (download and print) 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
In this episode, I had the pleasure of speaking with Sherri, a devoted caregiver whose husband Ray has been diagnosed with Lewy body dementia. Sherri shares her journey, from noticing the first subtle changes in Ray's behavior to the emotional and practical challenges they face today.We delve into how Ray's fearless personality and active lifestyle shifted dramatically as the disease progressed, and how Sherri has had to adapt to these changes. This episode is a touching reminder of the resilience and love that caregivers embody, and it offers insights and advice that can help others facing similar struggles. Episode Highlights:[01:32] - Sherri describes her husband Ray's fearless personality before his diagnosis.[07:25] - Discussing the changes in Ray's behavior and the initial signs of cognitive decline.[10:50] - The difficulty in getting a proper diagnosis and the eventual discovery of Lewy body dementia.[18:57] - Sherri's efforts to keep Ray active and engaged despite his resistance.[22:29] - The tough decision to stop Ray from driving and the emotional impact it had on him.[30:28] - Sherri shares the emotional and practical challenges of adjusting to Ray's cognitive changes.[43:33] - The importance of support groups and meditation in Sherri's caregiving journey.[48:51] - Sherri's strategies for maintaining patience and emotional stability. Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.
In the second part of this two-part series, Dr. Jeff Ratliff and Dr. Calum Hamilton discuss the clinical criteria that listeners should look out for, indicating a subtype of mild cognitive impairment known as DLB, which could potentially progress into a full dementia with Lewy body phenotype. Show reference: https://www.neurology.org/doi/10.1212/WNL.0000000000209499
In part one of this two-part series, Dr. Jeff Ratliff and Dr. Calium discuss the risk of developing dementia among patients with MCI at three or five-year time points. Show reference: https://www.neurology.org/doi/10.1212/WNL.0000000000209499
Dr. Jeff Ratliff talks with Dr. Calum Alexander Hamilton about the importance of tracking and managing patients with MCI, especially those with Lewy body pathology. Read the related article in Neurology. Disclosures can be found at Neurology.org.
飛碟聯播網《飛碟早餐 唐湘龍時間》2024.08.20 週二醫療保健單元 潘懷宗的醫學新知時間 《研究指出：攝護腺肥大藥物竟能改善「神經退化疾病」》 最新研究發現，三個治療攝護腺肥大的藥物: Alfuzosin(Az；札特持續性藥效錠)、Doxazosin(Dz；可迅持續性藥效錠)及Terazosin(Tz；暢流錠)，可以降低路易氏體失智症（DLB；Dementia with Lewy Bodies）的發生風險，原因是這些藥物的副作用(次要作用；另一個作用)剛好可以對抗DLB 的致病原因。另外，研究團隊認為這些藥物也具有治療其它神經退化疾病的潛力，研究成果已於 2024年6月發表在美國神經病學會的《Neurology》雜誌上，主要/通訊作者為愛荷華大學醫學院西莫林教授/博士(Jacob Simmering)。 最常見的三種失智症為: 阿茲海默症(佔比~60%)、DLB(~15%)以及血管型失智症(10~15%)，而DLB與典型老年失智的症狀有些不同，除進行性的失智與神經精神症狀(失眠/幻覺/憂鬱)外，尚有類似巴金森氏病的運動失調症狀，如: 動作變慢、肢體僵硬、顫抖、步態不穩、容易跌倒等等，就好像是阿茲海默症與巴金森氏病的混合體。病患通常預後不佳，平均約有8年的壽命。其發生率為每年每1000人有0.5~1.6 例，由於年紀大是主要的危險因素，所以DLB的發生率將會隨著世界人口老化而增加。目前DLB的藥物治療只能緩解症狀，尚無法預防或治癒疾病，美國著名演員羅賓˙威廉斯就是罹患此疾病。 ▶ 《飛碟早餐》FB粉絲團 / ufobreakfast ▶ 飛碟聯播網FB粉絲團 / ufonetwork921 ▶ 網路線上收聽 http://www.uforadio.com.tw ▶ 飛碟APP，讓你收聽零距離 IOS：https://reurl.cc/3jYQMV Android：https://reurl.cc/5GpNbR ▶ 飛碟Podcast SoundOn : https://bit.ly/30Ia8Ti Apple Podcasts : https://apple.co/3jFpP6x Spotify : https://spoti.fi/2CPzneD Google 播客：https://bit.ly/3gCTb3G KKBOX：https://reurl.cc/MZR0K4 -- Hosting provided by SoundOn
Studies have shown a close interplay between the cerebrovascular system and neurodegeneration. But what is the current evidence, and how can it help us better understand the pathophysiology of Lewy body disorders and potentially change their course? In this episode, Dr. Michele Matarazzo interviews Prof. Sephira Ryman about a recently published review article that explores the complexities of this relationship. Read the article.
In this episode of the ISTAART Relay Podcast, Dr Jessica Caldwell, a neuropsychologist and director at the Cleveland Clinic, interviews Dr Ece Bayram, the newly appointed assistant professor and incoming communications chair for the ISTAART Lewy Body Dementias PIA. They explore Ece's research on sex differences in genetics and environmental risk factors for Lewy body dementia. Ece shares insights into her innovative projects, the work of their PIA, plans for the upcoming AAIC and the significance of understanding sex and gender differences in neurodegenerative diseases, and the importance of designing research with community involvement. They also discuss the challenges of conducting studies in diverse populations and the need for global collaboration. Tune in to hear about the exciting developments in Lewy body dementia research and the impact of community-driven studies on advancing the field. -- The Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART) convenes the global Alzheimer's and dementia science community. Members share knowledge, fuel collaboration and advance research to find more effective ways to detect, treat and prevent Alzheimer's and other dementias. Professional Interest Areas (PIA) are an assembly of ISTAART members with common subspecialties or interests. -- There are currently 30 PIAs covering a wide range of interests and fields, from the PIA to Elevate Early Career Researchers to Biofluid Based Biomarkers and everything in between. To sign-up to ISTAART and a PIA visit: http://www.istaart.alz.org Note: ISTAART Membership is free for students worldwide, and for researchers of all levels based in Low- and Middle-Income Countries. -- To book your place at this year's AAIC (In-person and online) visit: http://www.aaic.alz.org You can also enjoy this show as a video on our YouTube Channel at: https://youtu.be/psSB1wOGSxA -- Find more information on our guests, and a full transcript of this podcast on our website at: www.dementiaresearcher.nihr.ac.uk/podcast -- The views and opinions expressed by guests in this podcast represent those of the guests and do not necessarily reflect those of NIHR Dementia Researchers, PIA membership, ISTAART or the Alzheimer's Association.
In this episode of Causes or Cures, Dr. Eeks sits down with internationally renowned music publicist Mary Lou Falcone to discuss her new book, I Didn't See It Coming. The book takes readers on an emotional journey filled with love, a dream job working with some of the world's most famous classical music stars, romance, and profound loss. Mary Lou shares her experiences as a caretaker, first for her sick father during her childhood and later for her soulmate, Nicky Zann—a 1950s rock 'n' roller turned world-famous cartoonist and illustrator who battled Lewy Body Dementia until his passing. Part of her motivation for writing the book was to raise awareness about Lewy Body Dementia. In the podcast, Mary Lou vividly recounts the early signs that something was wrong with Nicky, the series of doctor visits and tests that led to his diagnosis, and how she cared for him in his final years. She also explains how Lewy Body Dementia differs from more commonly known dementias, such as Alzheimer's Disease.You can learn more about Mary Lou here. You can contact Dr. Eeks at bloomingwellness.com.Follow Eeks on Instagram here.Or Facebook here.Or X.On Youtube.Or TikTok.SUBSCRIBE to her monthly newsletter here.Support the Show.
In this episode, Dr. Matt Lavoie discusses his pioneering work on Parkinson's disease, exploring the intricate genetic factors and potential pathologies related to Lewy body dementia. As a 2022 Toffler Scholar, Dr. Lavoie shares his journey from early inspiration to major scientific contributions in neurology, offering unique insights into the complexities of neurodegenerative diseases and their impact globally.Key Topics Covered:Personal Journey into Research: Dr. Lavoie shares how his upbringing and academic experiences shaped his research path.Significance of the Fixel Endowed Chair: Understanding the impact and honor of his role at the University of Florida.Research Focus: Insights into his current research on Parkinson's disease, cellular mutations, and Lewy body dementia.Laboratory Dynamics: A look into the size and scope of Dr. Lavoie's lab and its contributions to neurology.Global Impact of Parkinson's Disease: Discussion on the prevalence and historical significance of Parkinson's globally.Relationships between Parkinson's and Lewy Body Dementia: Discussion on the venn diagram of new knowledge gained in understanding Alzheimer's, Parkinson's and Lewy Body Dementia.Genetic Insights into Parkinson's: Dr. Lavoie explains the genetic diversity and implications of Parkinson's disease.The Future of Parkinson's Research: Promising approaches and technologies that could revolutionize treatments."Our understanding of Parkinson's disease is evolving at an unprecedented pace, revealing not just a single pathway but a complex network that leads to neurodegeneration." - Dr. Matt LavoieFor more intriguing discussions and updates on the latest in brain science, visit the Karen Toffler Charitable Trust at tofflertrust.org.To learn more about the breakthroughs discussed in this episode and to support ongoing research, visit our website at tofflertrust.org. Technical Podcast Support by Jon Keur at Wayfare Recording Co.
In this week's episode Brain & Life Podcast co-host Dr. Katy Peters is joined by Tish Hevel, founder and CEO of The Brain Donor Project. Tish discusses her father's journey with Lewy Body dementia, the importance of brain donation, and how braindonorproject.org makes the process easier for everyone considering this option. Dr. Peters is then joined by Dr. Ann McKee, board-certified neurologist and neuropathologist at Boston University and founder of the UNITE (VA-BU-CLF) brain bank. Dr. McKee explains how brain banks work, how to become a donor, and the types of things that can be learned from studying brains. Additional Resources The Brain Donor Project UNITE Brain Bank These Sisters Help Families Donate Brains to Science Repetitive Head Impacts Sustained Through Contact Sports Linked to Lewy Body Disease How Sports Neurologists Protect Football Players' Brains Other Brain & Life Podcast Episodes on These Topics U.S. Soccer Legend Briana Scurry on Concussion and Mental Health We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? · Record a voicemail at 612-928-6206 · Email us at BLpodcast@brainandlife.org Social Media: Guests: Tish Hevel @braindonorproject; Dr. Ann McKee @bu_cte Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD
What is it like living with a condition that affects both your mind and body, yet remains relatively unknown to many? Today, we are shedding light on Lewy Body Dementia, a complex condition that challenges individuals and families in unique ways. We're thrilled to have Julia Wood, a dedicated occupational therapist who specializes in neurodegenerative diseases, particularly Parkinson's and related dementias. Julia's extensive experience, including her role as the director of Professional & Community Education at the Lewy Body Dementia Association, equips her with valuable knowledge and compassion for those affected by LBD. She's here to share her expertise and provide guidance on navigating the complexities of LBD care. In today's conversation, we'll explore everything from the symptoms and behavioral changes associated with LBD to practical strategies for communication, safety, and overall well-being. We talk all about the support systems available and look at how families can engage in advance care planning. Plus, Julia will share touching personal stories, shedding light on the resilience and challenges faced by individuals and families navigating LBD. Thank you Julia for sharing your knowledge with us! Learn more at www.lbda.org We are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. willGather has taken care in selecting its speakers but the opinions of our speakers are theirs alone. Thank you for your continued interest in our podcasts. Please follow for updates, rate & review! For more information about our guest, podcast & sponsorship opportunities, visit www.willgatherpodcast.com *This episode is brought to you by Gigi Betty co., a boutique gift shop raising awareness and funds for caregivers and care partners. Show now at www.gigibettyco.com. Use the special code WILLGATHER20 for 20% off your order- Just for our podcast listeners!
Introduction: In this episode, we delve into the profound journey of Mary Lou, a dedicated caregiver to her husband, the renowned artist and rocker, Nicholas ‘Nicky' Zann. Mary Lou candidly shares their story of navigating life with Lewy body dementia, shedding light on the challenges, resilience, and the importance of understanding and support. Key Points Covered: Understanding Lewy Body Dementia (LBD): Mary Lou describes how LBD differs from Alzheimer's, with fluctuating symptoms affecting memory and behavior. It's a condition affecting 1.4 million Americans and 11 million globally, though it remains relatively less known. The Caregiver's Perspective: Mary Lou emphasizes the need to meet the person with dementia where they are, suspending personal needs to prioritize theirs. Caregiving is described as improvisation, requiring adaptability and a willingness to accept failures. Lessons in Forgiveness and Vulnerability: She reflects on her book, “I Didn't See it Coming, Scenes of Love, Loss and Lewy Body Dementia,” as a journey of reconciliation with herself as a caregiver. Forgiveness and vulnerability are central themes, offering insights into the complexities of caregiving. Nicky's Messages and Final Moments: Mary Lou shares Nicky's enduring messages and the profound experience of understanding his needs in his final moments. She highlights the transformative potential of grief, turning it into catharsis. Raising Awareness and Encouraging Support: Mary Lou advocates for greater awareness of Lewy body dementia, urging celebrities and public figures to help shine a light on this condition. She underscores the importance of creating supportive communities for family caregivers. Notable Quotes from Mary Lou: “You have to join the person where they are, you can't expect them to come to you in their former state. It's just not possible.” “Suspend what you need and give them what they need.” “Grief doesn't have to be your nemesis, it can be your catharsis.” Closing Thoughts: Mary Lou concludes by emphasizing the moments of light and hope amidst the challenges of caregiving. Her story serves as an inspiration and a call to action for increased understanding and support for those affected by Lewy body dementia. ABOUT THE AUTHOR & ILLUSTRATOR Mary Lou Falcone 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, and 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 Nicky Zann, who died from LBD in 2020, was the catalyst for this, her first book. Nicholas ‘Nicky' Zann, the inspiration for this book, was a popular 1950s rock 'n' roll musician who became a world-renowned cartoonist, illustrator, and painter. His work hangs in the permanent collection of London's Victoria and Albert Museum, and the illustrations featured throughout this book come from his bestselling fortune-telling card game, The Answer Deck. Visit Mary Lou's website HERE. Buy her book HERE.
What do you do if you have a family history of dementia and are experiencing symptoms, but can't get a diagnosis? Dr. Sara Langer has dealt with just that. In the latest episode of our Voices of Research Participants series, Dr. Langer shares the obstacles she endured to receive her diagnosis of Lewy body dementia (LBD), how her background as a neurologist influenced her search for clinical care and how she turned to dementia research to find answers. She also discusses ways that the field of dementia research could improve to support those with other forms of dementia outside of Alzheimer's disease. Guest: Sara Langer, MD, neurologist Co-host: Sarah Walter, MSc, program administrator, Alzheimer's Clinical Trials Consortium (ACTC) and Alzheimer's Therapeutic Research Institute (ATRI) Show Notes Learn more about Sarah Walter at her bio on the Alzheimer's Clinical Trials Consortium website. Listen to the first episode of the Voices of Research Participants series, “From Caregiver to Research Participant: How One Woman's Experience as a Dementia Caregiver Drew Her to Alzheimer's Research,” on our website, Spotify, Apple Podcasts and all podcast platforms. Learn more about Lewy body dementia by watching the 2021 Dr. Daniel I. Kaufer Lecture, “Diagnosis and Management of Dementia with Lewy Bodies,” on our YouTube page. Learn more about how to get a dementia diagnosis on our website. Connect with Us Find transcripts and more at our website. Email Dementia Matters: dementiamatters@medicine.wisc.edu Follow us on Facebook and Twitter. Subscribe to the Wisconsin Alzheimer's Disease Research Center's e-newsletter. Enjoy Dementia Matters? Consider making a gift to the Dementia Matters fund through the UW Initiative to End Alzheimer's. All donations go toward outreach and production.
Mary Lou Falcone is an internationally known classical music publicist/strategist who for five decades has helped guide the careers of many prominent artists and institutions. Combining her communication skills with her background as a performer and educator, she now adds another layer: being an advocate for Lewy Body dementia (LBD) awareness. Nicholas ‘Nicky' Zann, who died of LBD in 2020, was the inspiration for this book. A popular 1950s rock 'n' roll musician who became a world-renowned cartoonist, illustrator, and painter, his work has been credited with being the inspiration for Roy Lichtenstein. Mary Lou and Nicky were a couple for 37 years.Sponsor: www.SeniorCareAuthority.com
“Once diagnosed with Lewy body dementia, on average, individuals tend to live 5 to 8 years” —Melissa Batchelor, PhD, RN, FNP, FGSA, FAAN Lewy body dementia (LBD) is often misunderstood, misdiagnosed, or overlooked, yet it affects millions worldwide. Join me as I explain one of the complicated types of dementia. In this week's episode, we'll explore Lewy body dementia, understand its symptoms, causes, stages, and how it can be treated. WHAT IS LEWY BODY DEMENTIA? Lewy Body Dementia (LBD) is characterized by abnormal protein deposits in the brain, leading to chemical changes and the death of brain cells. This results in various challenges with movement, balance, thinking, behavior, and mood. One key feature of LBD is the fluctuation in cognitive ability, making it challenging to determine the disease's stage. DO YOU HAVE SYMPTOMS OF LEWY BODY DEMENTIA? Symptoms of Lewy body dementia include memory problems, confusion, strange body movements, sleep disorders, hallucinations, and dizziness. People with LBD may experience auditory or vivid visual hallucinations, which can be distressing or gentle, depending on the image they are seeing. This type of dementia also affects the body's automatic functions, causing issues like changes in blood pressure, temperature sensitivity, and loss of smell. WHAT CAUSES LEWY BODY DEMENTIA? While the cause of Lewy body dementia remains unknown, it involves abnormal clumping of a protein called alpha-synuclein in areas of the brain responsible for thinking and movement. These clumps, known as Lewy bodies, interfere with the production of neurotransmitters, resulting in issues with muscle movement, memory, and thinking abilities. CHALLENGES IN DIAGNOSING LEWY BODY DEMENTIA Diagnosing Lewy body dementia can be tricky. Its symptoms can be similar to those of Alzheimer's or Parkinson's disease. Typically, a team of specialists, including primary care providers, neurologists, and psychiatrists, is needed for a thorough evaluation. Diagnostic tests may include cognitive assessments, brain scans, blood tests, and sleep studies. HOW DOES IT PROGRESS? In the early stages of Lewy body dementia, memory remains intact, but confusion and mild cognitive changes may appear. Attention span can vary and hallucinations and REM Sleep Behavior Disorder can occur. As Lewy body dementia progresses, cognitive decline worsens, attention span decreases, and confusion increases. Movement problems develop, leading to falls and difficulty with tasks like bathing and dressing. Communication becomes harder, swallowing may be challenging, and paranoia or delusions may worsen. In the late stages, muscles become very stiff and sensitive to touch. People need help with most daily tasks like eating and bathing. Speech becomes very difficult, often turning into a whisper or stopping completely. WHAT TREATMENTS ARE AVAILABLE? While there is no cure for LBD yet, there are treatments that manage symptoms and improve quality of life. Medications like cholinesterase inhibitors may help maintain cognitive function. RESOURCES You can learn more by visiting the Alzheimer's Association website at https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/dementia-with-lewy-bodies Visit my website at https://melissabphd.com/ to learn more. Download the 10 Warning Signs of Alzheimer's Disease: https://melissabphd.com/10warningsigns/ Download the checklist for Alzheimer's disease and dementia: https://melissabphd.com/diagnosischecklist/ ------------------------------------------------------------------------------------------------------------------------------- About MelissaBPhD Melissa Batchelor, PhD, RN, FNP, FGSA, FAAN. I am a nurse, nurse practitioner, nurse Please visit my website at MelissaBPhD.com to learn more about me, how you can work with me directly, and/or support future episodes of the podcast. Within the first 18 months of launching this podcast, we reached a ranking of top 10% globally. The best way you can help the podcast continue to grow is to LIKE the podcast with a thumbs up, SHARE the podcasts you like with others, SUBSCRIBE, and LEAVE A REVIEW. These things only take a minute of your time, but they really do help increase my rating and ranking; but more importantly, these actions help other people find the podcast. For the most up-to-date news and information about the podcast and other products and services, please visit my website to sign up for my newsletter and follow me on social media. If you are on Facebook, feel free to join my Group - look for This is Getting Old: Moving Towards an Age-Friendly World ~ and I'll see you there! https://www.facebook.com/groups/thisisgettingold
Dr. Jason Crowell talks with Dr. Christopher Gibbons to discuss his paper "Cutaneous Phosphorylated Alpha-Synuclein Deposition in Dementia with Lewy Bodies and Mild Cognitive Impairment." Show reference: https://index.mirasmart.com/AAN2024/SearchResults.php?Program_Number=PL4.004
Today on the show, a new understanding of Parkinson's disease. Parkinson's disease is one of the most common neurodegenerative disorders — right after Alzheimer's disease. It's familiar to many as a movement disorder: people with the disease develop difficulties with voluntary control of their bodies. But the real story is much more complicated.This week, we speak with Kathleen Poston, a Stanford neurologist who is at the forefront of efforts to redefine Parkinson's disease and related disorders based on their underlying biology — not just their symptoms. As Poston says: "The biology is the disease." Join us to learn about exciting advances in our ability to detect the brain pathology driving these disorders much earlier, even before symptoms arise, and how this is opening doors for early intervention and — hopefully — prevention.Learn MorePoston Lab at Stanford MedicineLewy Body Dementia Research Center of Excellence at StanfordUnderstanding Parkinson's Disease: Stanford's Dr. Kathleen Poston on latest advances (CBS News Bay Area - Video)A biological definition of neuronal α-synuclein disease: towards an integrated staging system for research (The Lancet - Neurology, 2024)International Working Group Proposes New Framework for Defining Parkinson Disease Based on Biology, Not Symptoms (Neurology Live article)Episode CreditsThis episode was produced by Michael Osborne at 14th Street Studios, with production assistance by Morgan Honaker. Our logo is by Aimee Garza. The show is hosted by Nicholas Weiler at Stanford's Wu Tsai Neurosciences Institute and Knight Initiative for Brain Resilience. Thanks for listening! If you're enjoying our show, please take a moment to give us a review on your podcast app of choice and share this episode with your friends. That's how we grow as a show and bring the stories of the frontiers of neuroscience to a wider audience. Learn more about the Wu Tsai Neurosciences Institute at Stanford and follow us on Twitter, Facebook, and LinkedIn.
Love and loss can lead us to become champions for a cause we never expected to face. My guest today is Mary Lou Falcone, an internationally renowned classical music publicist and strategist, who has spent five decades shaping the careers of prominent artists and institutions. However, it's her personal story that brings an added layer of depth to her illustrious career. Faced with her partner's diagnosis of Lewy Body Dementia, Mary Lou found herself in the most challenging role of her life – that of a caregiver. Her journey through love, loss, and caregiving has led her to become an advocate for Lewy Body dementia awareness, turning her personal struggle into a beacon of hope and inspiration for others. Throughout our conversation, Mary Lou will share insights from her book, 'I Didn't See It Coming: Scenes of Love, Loss, and Lewy Body Dementia.' Mary Lou shares how her early life experiences prepared her for caregiving, the challenges she faced while caring for her late husband, Nicky Zann, a popular 1950s rock 'n' roll musician who became a world-renowned cartoonist, illustrator, and painter, and why she chose to share their story with the world. We talk about Nicky's life, the profound loss, and the awakening to advocacy. We talk about the complex and often misunderstood world of Lewy Body Dementia (LBD), a condition that affects millions yet remains in the shadows. We'll explore not just the medical aspects of LBD, but the deeply personal experiences that come with caring for someone living with this condition. Mary Lou also shares about the importance of spreading awareness about LBD, the difficulties caregivers face, and the resources available for those battling this condition. This episode promises to be not just an exploration of LBD, but a testament to the power of love, resilience, and the human spirit in the face of adversity. To help increase awareness about Lewy body dementia, an often misdiagnosed neurodegenerative disease affecting approximately 11 million people worldwide, the film FACING THE WIND follows the journeys in real time of three families dealing with LBD. The film is scheduled to be released in late 2024 or early 2025. It was a delight to meet you and interview you, Mary Lou. Thank you for all you do to raise awareness and the many ways you advocate for those living with Lewy Body disease. Learn more at www.maryloufalcone.com *This episode is brought to you by Gigi Betty co. A boutique gift shop raising awareness and funds for caregivers and care partners. Show now at www.gigibettyco.com. Use the special code WILLGATHER20 for 20% off your order- Just for our podcast listeners! We are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. willGather has taken care in selecting its speakers but the opinions of our speakers are theirs alone. Thank you for your continued interest in our podcasts. Please follow for updates, rate & review! For more information about our guest, podcast & sponsorship opportunities, visit www.willgatherpodcast.com
Dementia: Signs, Symptoms & Stories of Lewy Body. Dementia is a complex neurological condition that encompasses a range of cognitive impairments affecting memory, reasoning, and daily functioning. One specific form of dementia is Lewy body dementia (LBD), characterized by the presence of abnormal protein deposits called Lewy bodies in the brain. Recognizing the signs and symptoms of LBD is crucial for early diagnosis and effective management. Common signs of Lewy Body dementia (LBD) include fluctuating cognitive abilities, visual hallucinations, and motor symptoms such as Parkinsonism. Patients may experience vivid and often distressing hallucinations, adding a unique dimension to their cognitive decline. Additionally, individuals with LBD may exhibit difficulties with attention and problem-solving, further impacting their daily lives. Sharing Stories as a Form of Advocacy Stories of those affected by Lewy body dementia shed light on the emotional and practical challenges faced by patients and their caregivers. These narratives emphasize the importance of fostering a supportive environment, raising awareness, and promoting research to better understand and address this specific form of dementia. By sharing these stories, we aim to enhance public understanding and empathy toward individuals living with Lewy body dementia, ultimately contributing to a more compassionate and informed society. Our guest is Mary Lou Falcone an internationally known classical music publicist/strategist. Combining communication skills with her background as a performer and educator Mary Lou adds another layer: advocate for LBD awareness. Her late husband, the illustrator Nicky Zann, died from LBD in 2020 and was the catalyst for her first book, I Didn't See It Coming. ++++++++++++++++++++++++++++++++++++++++ Related Episodes: Understanding Lewy-Body Dementia Living with FTD W/Janice Swink ++++++++++++++++++++++++++++++++++++++++ Sign Up for more Advice & Wisdom - email newsletter. ++++++++++++++++++++++++++++++++++++++++ Make Your Brain Span Match Your LifeSpan Relevate from NeuroReserve With Relevate nutritional supplement, you get science-backed nutrition to help protect your brain power today and for years to come. You deserve a brain span that lasts as long as your lifespan. ++++++++++++++++++++++++++++++++++++++++ Please help us keep our show going by supporting our sponsors. Thank you. Stop 100% of Unwanted Calls with imp. Did you know people with Alzheimer's can receive nearly 200 spam calls a week? You can put a stop to those now. ++++++++++++++++++++++++++++++++++++++++ Join Fading Memories On Social Media! If you've enjoyed this episode, please share this podcast with other caregivers! You'll find us on social media at the following links. Instagram Twitter LinkedIn Facebook Contact Jen at hello@fadingmemoriespodcast.com or Visit us at www.FadingMemoriesPodcast.com
Listen as Dr. London Smith (.com) and his producer Cameron discuss Lewy Body Dementia with special guest Hermy T. Elf (Marc Hershon). Sponsored by Caldera + Lab (use code "jockdoc" to get 20% off!). Not so boring! https://calderalab.com/pages/podcast-special-offer?show=Jock+Doc&utm_medium=podcast&utm_source=JocDoc https://www.patreon.com/join/jockdocpodcast Hosts: London Smith, Cameron Clark. Guest: Marc Hershon. Produced by: Dylan Walker Created by: London Smith
Learn about Lewy Body Dementia, why it is difficult to diagnose, and the special challenges faced by caregivers. My guest Mary Lou Falcone has been an advocate for Lewy body dementia awareness since her dear husband Nicky Zann died of the disease in 2020. Mary Lou is internationally known as a classical music publicist who… Continue reading Ep. 428 Love and Loss as a Caregiver Dealing with Lewy Body Dementia with Mary Lou Falcone
Today on the podcast, you'll hear from Mary Lou Falcone, Founder and owner of M.L. Falcone, Public Relations Mary Lou Falcone 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 Nicky Zann who died from LBD in 2020, was the catalyst for this her first book. This conversation was so inspiring to me - Mary Lou has SO MUCH wisdom to share for musicians today about seeing opportunities, about learning on the job, about taking agency, about integrity and kindness and paying it forward. She has such beautiful words about caregiving, and she relates it so beautifully to what we do in so many realms of our lives. I wanted her to keep talking forever. The book, I Didn't See it Coming, came out October 3 and I recommend it highly, but first please listen to this beautiful conversation. Mary Lou's website is https://maryloufalcone.com/ Thanks for joining me on Crushing Classical! Theme music and audio editing by DreamVance. You can join my email list HERE, so you never miss an episode! Or you could hop on a short call with me to brainstorm your next plan. I'm your host, Jennet Ingle. I love you all. Stay safe out there!
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