Podcasts about care partners

Care partners—whether family, friends, or close loved ones—are the quiet champions who help manage medications, attend appointments, offer emotional support, and walk beside patients every step of the way. But what does that look like day-to-day? And how can care partners find the support they need, too? In today's episode we heard from:  Ruthie Eastman is a former massage therapist and office administrator.  She is passionate about health and exercise and rides her three-wheel assisted tricycle regularly.  She is a new NKF Peer Mentor for Care Partners. Jim Eastman has experienced two life-changing issues where Ruthie provided the role of Care Partner.  A traumatic brain injury in 1990 established a basis and need for care for Jim.  While bumpy in the beginning, we worked it out in couple's therapy.  When CKD entered our lives, the patient/care partner dynamic had been experienced.  Three years of PD and eight years post-transplant, Ruthie continues to be a Care Partner extraordinaire! Michelle Rowlett, MSW, LICSW is a dedicated nephrology social worker with 25 years of healthcare experience, including 16 years in kidney care. She currently serves as Social Work Supervisor and CKD Program Lead at Puget Sound Kidney Centers, supporting patients and families through chronic kidney disease, dialysis, and major life transitions. Additional Resources: Life Stress Inventory NKF Peers   Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.  

Send us a text"Caregiving" on PBS, premiere date June 24th.Wellbeings Share Your StoryA Caregiver's Heart, a short filmA Journey of Resilience, a short filmSupport the Alzheimer's & Dementia Resource Center

Host Mary Anne Oglesby-Sutherly shares from her heart, knowing that she'll experience loss and grief very soon in her life, coping with the very thing which she compassionately teaches that comforts others. Caregivers, doulas and professionals like Mary Anne are typically the first line of support as they assist other dementia patients and their family members to cope with serious illness, feelings of loss, and the end of life. But now, it's her time.  This episode begins with the celebration of a new building that is shared by both the Veranda Ministries and the Preferred Care Group. An extraordinary collaboration is available to both organizations as they learn and glean from each other. And then there's Doris' story. Doris is Mary Anne's sister and her life is in the balance of God's hand right now. The grief she is feeling about her younger sibling is the emotional response to loss, defined as the individualized and personalized feelings and responses that an individual makes to real, perceived, or anticipated loss. The last gift that Mary Anne will give her sister is her presence, her words and her gift of love.

Michael Feiveson and Michelle Lester joined Newstalk KZRG to discuss an upcoming Care Partner Network Summit. Join Ted, Steve, and Lucas for the KZRG Morning Newswatch!

In this powerful episode of It Happened To Me, hosts Beth Glassman and Cathy Gildenhorn are joined by author, advocate, and healthcare leader Laura Kieger, who shares her family's deeply personal journey with FAP (Familial Adenomatous Polyposis), a rare genetic condition that significantly increases the risk of colorectal and other cancers. Laura's memoir, Summer's Complaint, chronicles the emotional and medical challenges her family has faced across generations, from diagnosis and genetic testing to coping with loss and finding resilience. As someone who tested negative for the familial mutation herself, Laura also opens up about "survivor's guilt", the burden of watching loved ones endure cancer, and how her work in healthcare and leadership has informed her approach to caregiving and advocacy. Whether you're living with a hereditary cancer condition, supporting someone who is, or simply seeking to understand the human side of genetic risk, this episode offers insight, education, and compassion. Topics Covered: What FAP is and how it differs from other hereditary cancer conditions Laura's family's diagnosis journey and how it shaped their approach to screening and prevention The emotional experience of receiving a negative genetic test result when others in your family test positive The value of genetic counseling and early detection Misconceptions about FAP and what patients and families should really know How storytelling can raise awareness and build advocacy for rare diseases Highlights from Laura's memoir, Summer's Complaint, and what she hopes readers take away Laura Kieger is a healthcare human resources consultant, leadership coach, and author of Summer's Complaint. With decades of experience improving patient and employee experiences in healthcare settings, Laura brings both professional and personal insight to the conversation around rare diseases and inherited cancer risk. She's also a passionate advocate and speaker for organizations like the Ronald McDonald House and Care Partners.   Be sure to purchase your own copy of Laura's memoir Summer's Complaint; all proceeds go to continuing education credits for healthcare providers about hereditary cancer syndromes. During the episode Laura also mentioned a study about green bananas here and a private Facebook support group here.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.   

In this episode of The Care Social, Barry Price  and Gerry McMurdie talk about the important role that family and friends play as care partners in adult social care. They share honest insights and helpful advice on how care teams can work closely with families – from building trust and having clear conversations, to involving them in care planning and understanding risks.Whether you're a care manager, support worker, or looking after someone with dementia, this episode offers down-to-earth tips to help you involve families in the right way and make care more personal. Listen now to hear how working well with families can lead to better care, fewer complaints, and stronger relationships.In this episode:Why we use the term ‘care partners' – and what it meansTalking clearly about care and consentHow digital care planning can help keep families involvedIncluding families in care reviews and risk planningSetting expectations and dealing with any challengesWant to join the conversation?If you have a topic, you'd like us to cover or want to be a guest on a future episode, email us at qcs@qcs.co.uk

The Heart of Mary House (HOMH) began in a two bedroom home located in the South Nashville area on the campus of St. Edward Church. The mission of Heart of Mary House is to provide a safe, comfortable, and peaceful home-like setting for underserved people who have been given a terminal prognosis and need somewhere to stay and someone to care for them during their final days and weeks. They were able to host two residents at a time in this home. Today's episode, host Mary Anne Oglesby-Sutherly and HOMH's director, Kim Derrick. share in the celebration of a new property for HOMH that was obtained in November of 2024. They moved their first resident into the home on February 17, 2025. This home has six bedrooms, two living areas, two full baths, a full kitchen, and two office spaces. The design of the home is more perfect than they could have ever imagined. HOMH is grateful and excited to care for triple the amount of people needing a safe, comfortable and peaceful home-like setting.  Nothing could be more perfect than two very distinct ministries, with brand new locations (The Veranda Ministries and Heart of Mary House) celebrating new buildings at the same time.  Two hearts; One mission - to care for those in their desperate time of need. Ribbon cutting ceremony for the new location of “Veranda Ministries” will be  April 1st, 2025 at 1pm - 650 Nashville Pike, Building 4, Gallatin, TN 37066. Refreshments will follow. The public is invited.   https://heartofmaryhouse.org/ https://theverandaministries.org/ 

Timothy Pearman, PhD, ABPP, Northwestern University Feinberg School of Medicine, Chicago, IL Recorded on February 6, 2025 Timothy Pearman, PhD, ABPP Director, Supportive Oncology Robert H. Lurie Comprehensive Cancer Center Professor, Department of Medical Social Sciences and Psychiatry & Behavioral Sciences Northwestern University Feinberg School of Medicine Chicago, IL Join us for an insightful episode featuring Dr. Timothy Pearman from Northwestern University, as he explores the critical role of caregivers and care partners to a patient's healthcare team. Dr. Pearman discusses the challenges caregivers face, including burnout, relationship stress, and issues surrounding sex and intimacy. He also offers effective communication strategies to address these challenges and shares ways healthcare professionals can better educate and support caregivers. Tune in to this informative podcast for valuable insights and resources for caregivers! This episode is supported by Genentech, A Member of the Roche Group.

Informal care partners are essential to the care of people living with dementia, but they often experience significant burden and receive minimal training, support, and resources. Multicomponent interventions can mitigate burden and other negative consequences of caregiving. In this episode, Gordon Smith, MD, FAAN speaks with Angelina J. Polsinelli, PhD, ABPP-CN, author of the article “Care Partner Burden and Support Services in Dementia” in the Continuum® December 2024 Dementia issue. Dr. Smith is a Continuum® Audio interviewer and professor and chair of neurology at Kenneth and Dianne Wright Distinguished Chair in Clinical and Translational Research at Virginia Commonwealth University in Richmond, Virginia. Dr. Polsinelli is an assistant professor of clinical neurology at the Indiana University School of Medicine in Indianapolis, Indiana. Additional Resources Read the article: Care Partner Burden and Support Services in 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 Host: @gordonsmithMD Full interview 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 Smith: This is Dr Gordon Smith. Today, I've got the great pleasure of interviewing Dr Angelina Polsinelli about her article on care partner burden and support services in dementia. This article appears in the December 2024 Continuum issue, which is on dementia. Ange, welcome to the podcast. And maybe you can begin by just introducing yourself to our audience?  Dr Polsinelli: Yeah. Well, thank you for having me. I'm very excited to be here. I'm Ange Polsinelli. I'm a neuropsychologist at Indiana University School of Medicine, where I work in the Department of Neurology. I also work with the Longitudinal Early Onset Alzheimer's Disease study that's led by Liana Apostolova. And I also do some work with the Outreach, Recruitment and Engagement Core of the Indiana Alzheimer's Disease Research Center. This topic that we're going to talk about today is extremely near and dear to my heart. Dr Smith: Well, thanks for joining me. And of course, IU is a powerhouse for Alzheimer's and basketball, in that order. So, we're really excited to have you. I'd like to get right into it. I'll emphasize, we were chatting a little bit about this, Ange, before we started recording, that your topic today is so important for all of us. And I think, you know, this is a podcast that not only neurologists listen to, but students and, and I think increasingly members of the lay public. And this conversation is going to be very important for neurologists and our neurology learners. But I lost my grandmother to Alzheimer's disease. I lost my uncle just in the last week. So, this touches all of us. So, I'm really excited. And then with that in mind, I wanted to begin with a statistic that- you can correct me if I misunderstood it, but it really blew my mind. And that is across the world, as I understand it, care partners provide one hundred and thirty three billion hours of care for people living with dementia yearly, which is pretty staggering. But what's really amazing is that by 2030 that number is expected to go to one point four trillion hours, which I couldn't grab my mind around it. So, I figured I'd try and determine how many years of person work is that and if my math is right, that's almost a hundred and sixty million person years of worth caring for people with dementia yearly across the world. One, are those numbers right? Did I get it right? And then, assuming so, can you put a human face or experience to these numbers?  Dr Polsinelli: Yeah, unfortunately those numbers are correct. And with our increasing aging population across the world, that's why you're getting that, you know, exponential increase in care per hours, compounded by the fact that the majority of the caregiving that happens is not done by doctors, physicians, but it's done by these informal care partners, these family members, these friends, these siblings, children, who are providing these really important services and unfortunately not being trained to do this, doing it largely on their own in a lot of respect. But again, these are people who are loved ones of the person living with dementia. There are a variety of kinships, as I mentioned, siblings, children, spouses, friends; and all sorts of age ranges as well. A large majority of them being spouses, and then the second largest majority being children. So, kind of a sandwich generation of people who are caring for parents with Alzheimer's or dementia and then caring for children as well. Dr Smith: Yeah, I was actually struck by the statistic that a quarter of caregivers or so called sandwich caregivers; in other words, they're taking care of a parent and a child. But listen to what you said. But just to call it out, two-thirds of care partners are women, which is a striking statistic.  Dr Polsinelli: Absolutely. Women are not only more likely to have dementia, but they are also more likely to be the care partners of somebody who has dementia. And so, the research shows, too, that if you're a care partner, you're at higher risk of developing dementia yourself. So, there's a lot of risk for women when it comes to dementia, development of dementia, but also that the burden and the majority of care needs that are that are supported by women as well. Dr Smith: Right. And there's a lot to unpack in that observation, and maybe we can come back to that. But I wonder if you might talk to us a little bit about the risk of dementia in women caregivers. That's really striking. Is there any thought regarding mechanism for that? Why is that the case? Is it a shared risk factor? Is it cause and effect? What's the story?  Dr Polsinelli: So, there are - this is kind of a dissociable or different - kind of two aspects to this, this question. There's the fact that women are at higher risk for developing dementia in general. I think the researchers feel sort of out about why exactly that is. It's not just that women are at higher risk or more likely to develop dementia because they're living longer than men, but there's probably some hormonal aspects of their higher risk factor for dementia. But then there's the other aspect of it too, is that as caregivers, caregivers are at higher risk of developing dementia. And because caregivers tend to be women, that increases or compounds the risk for women as well. We know with caregiving, particularly with someone who's living with dementia, there's more risk of developing things like depression, high stress, health problems, psychological distress, and all of these things increase somebody 's risk for developing dementia as well. Dr Smith: So, I wonder if you might talk a little more, Ange, about what you mean by burden? I think we have in our mind what that is. But in reading your article, there's a lot of- a lot more to it than may meet the eye. Dr Polsinelli: Yeah, it is a more complicated, I guess, topic or terminology that's gone through several iterations over the course of doing research into burden. But when we think about burden, it's really a kind of a combination of both objective experiences and subjective experiences. And these objective, subjective experiences fall into the categories of physical burden, emotional burden, psychological burden. So, there's a lot of different areas of life in which someone can experience burden. But really, it's a combination of factors of both the objective experience, lived experience, and the person 's perception of that experience or what they're dealing with. I should also mention that it appears to be more of that subjective experience or that perception that people have of their objective experience of stressors or burden. That really does determine the person's response to that, if whether they actually perceive their lived experience as being burdensome.  Dr Smith: One of the things I found really interesting was the societal and cultural context surrounding this, that there are different cultural expectations and societal dynamics, both in the nature of the burden care partners may feel and how they're viewed. I wonder if you could talk about that? I think it's something that it would seem all of us need to be attuned to as we're working with our patients and their families.  Dr Polsinelli: Yeah, this is a topic we could talk for a very long time on. I will try and- I will try not to kind of provide too much of a, or too lengthy of a response. But what we know now is basically that our models of stress and burden that we have typically used or historically used do not incorporate a lot of factors of cultural identity of social and structural determinants of health factors. And so, what we understand now is that stress and the way that people perceive burden is influenced by so many other factors than just kind of an experience and a perception. Because that perception is influenced by so many factors, including, as you mentioned, cultural factors that include how society's familial expectations for us, cultural expectations for us, as well as what our resources are that are determined by, again, structural and social determinants of health, what our community resources are. They're just a lot of different factors that go into how somebody perceives their ability to cope with, again, this kind of life-altering diagnosis that their loved one has received and them being the person who is caring for them through that. Dr Smith: Your article actually goes through in some detail the types of burdens and what drives the burden. And that changes over time. And so I wonder if maybe you can talk a little bit about what the specific natures of the burden are from the caregiver perspective. I mean, what  sort of tasks there are, you know, from the many of us who take care of patients, we still don't know unless we've been in the room or in the home watching this happen. So maybe you can describe that for those of our listeners who maybe haven't lived through this?  Dr Polsinelli: Yeah, absolutely. I will say upfront that the caregiving experience is going to be different for every single person. And again, kind of dependent on some of those factors that I mentioned before. So, it's going to look different for most people. It's also going to look different through the dementia journeys. The experiences and the requirements earlier on in dementia are going to be a vastly different than what occurs later on when dementia is in the more late stage, moderate or severe stages of the disease. Those care responsibilities absolutely change over the spectrum of that time as well. We know that early on the stage of disease, primary care partner might be spending forty plus hours a day. So, a full-time- or not a day. I'm sorry, a week. So, a full time job carrying it. But that number increases up to a hundred and fifty or so hours per week once the person is more advanced in their disease. So, I say that because the number of hours, I think, make all, like- putting that into perspective of somebody having a full time, multiple full time jobs, basically providing care, I think is really important. But the responsibilities of the care partner are going to range from everything from just helping the person early on in terms of managing finances or managing them, making sure they're reminding them to take their medications, scheduling their medical appointments for them, maybe taking over all of the driving to get them to their appointments or to get them to family outings and things like that. They're going to be the ones that's going to be the most responsible for reminding people to do something: to eat, to maybe stay on track for a recipe or something that they are making. So, kind of being the eyes and ears for this person right away, basically right at the beginning, even early stages. And then that progresses over time to the person who is caregiving, who is doing potentially everything for this person. So that means helping them use the restroom when they need to, helping them shower. So, there's a physical component to the caregiving as well as that- sort of what we call instrumental support in terms of organizing medical appointments and things like that. They're just basically doing it all for that person.  Dr Smith: So, what about a busy clinician who has half an hour to see a dementia patient follow up? Kind of hard to- in these days, you know, we've got, you know, these new therapies to think about as well. What advice do you have to neurologists and other professionals caring for patients? Dr Polsinelli: Yeah. And I think neurologists, I mean, we all have limited time. And I know neurology in particular is like primary care, has even more constrained time. I think one of the biggest things that neurologists can do is really check in with the care partner. So, take a moment to check in with the care partner who's there with the person with dementia to see how are they doing. You're looking for signs of burden or stress, so things like physical complaints like headaches or stomach ache, mentioning feeling burnt out or overwhelmed, maybe feeling depressed or something like that. There's also some short kind of questionnaires that you could give care partners prior to an appointment that they could fill out. You could kind of get a sense of where is this person at this point and then help connect them potentially to some resources that might be available. And I would refer people to that article that has a list of resources in there that you could just basically print out and give to somebody.  Dr Smith: Yeah, I was going to make the same point, Ange. Your article is a treasure trove of information. And you know, I'm certainly, I keep all of these on file, as you might imagine, but I'm keeping it in hand for future use. One of the things you talk about that really hit home for me among many is the idea of self-care, and I think sometimes the best care partners are susceptible to burnout because they they're so dedicated. You made the airplane oxygen mask metaphor, which I love. So maybe you can talk about what airplane oxygen masks have to do with dementia care and what advice you have for us and helping our patient's care partners take care of themselves? Dr Polsinelli: Yeah, absolutely. Self-care is the number one thing I tell care partners to do. It's also one of the hardest things for care partners to do. Like you mentioned, there is a deep, generally speaking, a deep love and caring for the person with who is living with dementia. And the focus becomes on them. And understandably so, the care partners sort of loses focus on themselves and making sure that they're doing okay. So I oftentimes use this oxygen airplane metaphor for people, which is basically, you know, when you're in an airplane and if there's some kind of pressure change in an airplane, they always tell you, put your oxygen mask on first before you help somebody else because you're not going to be any good to anybody if you're passed out. In the airplanes, the pressure changes, you know. You need to be available. you need to be getting what you need in order to help somebody else. So, I think that metaphor, that analogy really works well in dementia care is you need to be- the care partner needs to be caring for themselves and replenishing themselves in order to be the best care partner they can be for their loved one.  Dr Smith: Another challenge that, it strikes me as shared between people living with dementia and their care partner is that of social isolation and loneliness, right? If you're working a hundred and fifty hours a week doing anything, you don't have time to care for yourself or very hard to engage in social connections. And one of the loud messages I think I heard from your article is the power of social connectedness, both in terms of resilience and in many different ways. I wonder if you can talk a little bit about loneliness? And I just reflect that in a postpandemic world, this is probably a bigger issue than it was four years ago or four years and three months ago. Dr Polsinelli: Yeah, absolutely. Loneliness and social isolation was a big problem before, and it's even worse now is when I'm hearing from my patients. What I'm seeing in the literature is this postpandemic time is even more has been even more isolating and more problematic for people, but this social network cannot be, as you said, it cannot be overstated in terms of the importance for people. So that social network is important for not only providing potential instrumental care - so that practically care that care partners can use can lean on other people to come into the home to do things for the person living with dementia so the care partner can go practice self-care or go do those errands that need to be done - but also the emotional support as well that social networks can provide for people. And also, you know, social networks for not just the person, the care partner, but for the person living with dementia as well. We know that social engagement in particular is really good for brain health. I mean, we don't think about it, but social engagement is a very cognitive activity. And so, it helps give the brain a bit of a workout. So that social network is important for a lot of different reasons, and understandably a lot harder to maintain in this sort of postpandemic world as well. Dr Smith: As our time starts to come to- close to a close, we're not done yet, but I think we're probably going to have to start winding up. I wonder if we could pivot to something positive and then talk about the joy in this. And by that, I mean you describe and I think we've witnessed relationships and caring, caregiving situations that, as challenging as they are, provides fulfillment and the connection one has with a loved one or sort of that social aspect. Are there things that- predictive of that kind of positivity, and are there ways that we as professional caregivers for patients and their families can facilitate that? Dr Polsinelli: Yeah, there are. There are a couple of things. So, one of which is basically the quality of relationship between the care partner and the person living with dementia already. So that's the quality of that relationship. The better the quality of that relationship, the more likely it is that the care partner will experience more meaning and fulfillment and joy associated with caregiving, kind of outweighing that burden. But the additional piece of that is the more resources, the more mastery they feel about their caregiving or care partnering abilities, the more competent they feel and their ability to do good by the person, their loved one, the person living with dementia, the more likely they are to find that role fulfilling and meaningful. And I think that's where neurologists and other providers can kind of come in as helping people make sure that they have those resources that they are connecting to places where they can learn skills for giving appropriate care so that they can feel confident in what they're doing. There's the preexisting relationship piece that matters a lot. But I think that there's a lot of modifiability that neurologists have, too, in making a positive impact on the care partner and the person living with dementia. Dr Smith: That's really great advice, Ange. And I definitely will refer our listeners yet again to your article, which is a compendium of useful advice about this, both in terms of the text itself and in tables that provide lists of resources, websites, books, organizations, good case examples. It's a home run and I hope all of our listeners check it out. I'd like to wind up by talking a little bit about your work. And as I understand it, you obviously are very passionate about this topic, but you have specific interests in caregiver burden and underserved and marginalized communities. And then, we've touched on this, but this is a huge percentage of our population. And when you look out globally, it's even bigger than that. Tell us about what you're working on. And then maybe following that, what's the future look like? Where are we going to see advances in this in the coming years?   Dr Polsinelli: So just a really quick kind of brief history is that I've worked in dementia for almost twenty years or so now. And what I've consistently seen is when you give care partners good supports and education and resources, there are better outcomes for them and their families. The unfortunate thing is, a lot of these really great interventions and things that we have are not necessarily really accessible by a lot of people, but particularly not accessible by those living in underserved communities. The last few years in particular, I've really shifted into wanting to better understand that and better understand how do we provide culturally and socially appropriate interventions and education for these care partners and their families. With the current research project that I'm working on, we're looking at better understanding the needs of care partners of people who have early onset Alzheimer's disease, specifically from Black and African American individuals and other underrepresented groups. Again, the idea of this is to understand the needs before building an intervention for these groups, and I'm very excited about it. I know that there are lots of really great people who are working in this area, including Dr Dilworth Anderson and Kalisha Bonds Johnson, doing really fabulous work in this area. So, and building on what they're doing as well. In terms of what the future holds, one, I think we absolutely need to, we have lots of really great care partner interventions out there that have been lots of research going on, but it's not really transitioning into the clinical sphere. It's really kind of staying in that research sphere. So, I think it's really important that we get some implementation scientists who are taking those interventions and moving them into the clinical sphere, into the sort of like everyday, how do these actually work for people sphere. And then similar to some of this conversation we're having in terms of serving, making sure our interventions and making sure that our resources are appropriate and accessible for underserved communities, we really need to be taking a look at what these communities need rather than kind of saying, this is what's available. Kind of, hopefully this works for you. Speaking with these communities, engaging stakeholders and understanding what are the needs in these groups so that we can provide the appropriate resources, the appropriate interventions, the appropriate supports for care partners and people living with dementia. Dr Smith: And I'm just thinking, imagine what this looks like with effective treatments for Alzheimer's disease, that slow progression. And you know, that's going to make the caregiving even more important, it seems to me. But there's an opportunity to make it a better rewarding and a better-supported system as we develop these new therapies. So, this is a, like a Clarion call for learners listening that they should all become dementia neurologists and neuropsychologists like here. Thank you. That was outstanding. Say, Ange, I want to thank you a lot for a really engaging conversation. This fulfilled every hope I had coming into it. I was really excited to talk to you. I always love talking to neuropsychologists, but I think again, this is really useful for neurologists, learners, people who are nonneurologists everyone. And so, thank you very much. I've learned a lot and I really would encourage everyone to check out the article.  Dr Polsinelli: Well, thank you so much for having me on and giving me the opportunity to talk about the stuff that is really important to me and, I think, to most of us out there. So, hopefully people find the article and the resources in there useful and, and thanks again for having me.  Dr Smith: I'm sure they will. Again, today I've been interviewing Dr Angelina Polsinelli, whose article on care partner burden and support service in dementia appears in the most recent issue of Continuum, which is on dementia. Be sure to check out Continuum audio episodes from this and other issues. And thanks to you, our listeners, for joining us 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.

Don't Walk Away: A Care Partner's Journey" by Marilyn Raichle is a compelling exploration of living with dementia, offering insights from both the patient and care partner perspectives. This book provides valuable guidance for those navigating the challenges of dementia care. In this video, we delve into the key themes of "Don't Walk Away," discussing the emotional and practical aspects of dementia care. Whether you're a caregiver, family member, or seeking to understand dementia better, this discussion offers meaningful insights. In her transformative book, Don't Walk Away, Marilyn Raichle shares an inspiring perspective on the intersection of art and Alzheimer's. Through moving stories and practical insights, this book highlights how creative expression can bring joy, connection, and understanding to those living with dementia and their loved ones. ✨ Learn how art can transcend memory loss and create meaningful moments. ✨ Explore the emotional impact of caregiving and the importance of patience and creativity. ✨ Discover real-life examples of how Marilyn has used art to connect with her mother, who lived with Alzheimer's. Whether you're a caregiver, healthcare professional, or simply interested in the healing power of art, this book offers valuable lessons on finding beauty and connection in the face of Alzheimer's. Don't Walk Away https://a.co/d/4Q4ndZ5

Being a care partner to someone with Parkinson's disease (PD) can be a shifting and complex role, as symptoms and life circumstances change. And sometimes, this can lead to stress and even burnout for the care partner. Tune into audio from this Third Thursdays Webinar to hear expert panelists discuss how to navigate care partnership, including everyday strategies to de-stress and find supportive community. Like our podcasts? Please consider leaving a rating or review and sharing the series with your community. https://apple.co/3p02Jw0 The Foundation's landmark study, the Parkinson's Progression Marker's Initiative, also known as PPMI, is recruiting volunteers. Join the study that's changing everything at michaeljfox.org/podcast-ppmi.

Marilyn Raichle - Don't Walk Away: A Care Partner's Journey. Enhancing the Lives of People Living with Dementia and their Care Partners. This is episode 732 of Teaching Learning Leading K12, an audio podcast. Marilyn Reichle, author of Don't Walk Away, grew up in the shadow of Alzheimer's. Nearly everyone in her father's family and many in her mother's had developed the disease. But Raichle became transformed in her views towards those living with dementia, inspiring the launch of a book and several non-profits that helps — and celebrates — those living with the memory-robbing disease.  Raichle began her career in the theatre, founding the Seattle International Children's Festival. She served for 11 years at North America's largest international festival for children, introducing children to world culture through the performing arts.   She then became the founding executive director of American Voices for nine years, building an informed, engaged, and good-humored community. In 2007, she received a Master of Public Administration from Harvard University's Kennedy School of Government. She received her BA from the University of Washington.  Upon returning to Seattle, her career changed when she became the family caregiver for her parents, both of whom were developing dementia. In 2010, inspired by her mother's newfound artistic ability, she founded The Art of Alzheimer's, celebrating the creativity of those living with dementia and the power of the arts to enrich and empower their lives.   In 2019 she became the Executive Director of Maude's Awards for Innovation in Alzheimer's Care, celebrating and rewarding innovative programs and practices of care that are enhancing the lives of people living with dementia, and their care partners.  Our focus today is Marilyn's book - Don't Walk Away: A Care Partner's Journey. So much to learn and think about. Thanks for listening! Please share! Before you go... You could help support this podcast by Buying Me A Coffee. Not really buying me something to drink but clicking on the link on my home page at https://stevenmiletto.com for Buy Me a Coffee or by going to this link Buy Me a Coffee. This would allow you to donate to help the show address the costs associated with producing the podcast from upgrading gear to the fees associated with producing the show. That would be cool. Thanks for thinking about it.  Hey, I've got another favor...could you share the podcast with one of your friends, colleagues, and family members? Hmmm? What do you think? Thank you! You are AWESOME! Connect & Learn More: Don't Walk Away – A Care Partner's Journey. Available Now on Amazon. (27) Marilyn Raichle | LinkedIn Length - 40:40

GEM Care partners with Blue Shield. Gov wants you to pay Medicare Part B premium.    

Linda Pituch joins hosts Ron Aaron and special guest co-host Tina Smith to talk about care partner resources on this edition of Caregiver SOS.

Send us a textMedicare's No Cost program for those with Dementia and their Care Partners is available nationwide. Do you qualify? Do you need a break for caregiving and help learning how to care for someone with dementia?www.guidedementiaprogram.com for frequently asked questions and secure referral formSupport the show

In a groundbreaking development to better delivery of cancer care in Connecticut, the Hartford HealthCare Cancer Institute at St. Vincent's Medical Center has been designated as the first Care Partner of Memorial Sloan Kettering Cancer Center in the United States. So, what does this mean for cancer patients in Connecticut? We spoke with Bill Jennings, Hartford HealthCare Fairfield Region President, and Dr. Christopher Iannuzzi, the Chair of the Oncology Department at Hartford HealthCare St. Vincent's Medical Center Cancer Institute. Image Credit: Getty Images 

This week, Teepa shares her “8 S's” framework for creating meaningful and manageable holiday celebrations for people living with dementia. Emphasizing smaller, simpler gatherings with the right sensory and social environments, Teepa goes over how we balance satisfaction for everyone involved. With practical tips and a focus on flexibility, this episode offers guidance for joyful, stress-free holidays. To learn more about Positive Approach to Care, visit: www.teepasnow.com.

Family caregivers of acutely ill patients are critical members of the care team. How can health care professionals better support these care partners?

As we wind down the year with a final couple of episodes, this may be the most important topic. November is caregivers' awareness month. The Caregiver Action Network (CAN) mission is to promote resourcefulness and respect for tens of millions of family caregivers across the country.  This not-for-profit organization is responsible for caregivers' awareness month. It is vital that we recognize this important person in our lives. They are the unsung heroes in our journey with Parkinson's or any other chronic disease. They are often overworked, overlooked, and overwhelmed. These important people are part of the care team and should have access to the resources and assistance they deserve. So, let's get some insight into the care giving from a couple of real-life caregivers who care for their partners with Parkinson's. Each has a different situation determined by the progression of the disease, current working status as well as other factors. This episode is for everyone. You never know when you might become a caregiver for a loved one. 17 Branches and the Parkinson's Experience recognizes and appreciates all of you who care for your partners and your family. Happy Thanksgiving. I am grateful for all the people who listen to the Parkinson's Experience podcast. https://www.dbsandme.com/en.html https://www.caregiveraction.org/ https://www.parkinson.org/library/fact-sheets/coping-care-partners  https://www.pingpongparkinson.org/ 

Too often, care partners remain invisible as they deal with the emotional, physical, and even financial burdens that go along with supporting a loved one who's living with multiple sclerosis.  November is National Family Caregivers Month, and I'm devoting this entire episode to a roundtable discussion with four remarkable care partners as they share their insights, experiences, and lessons learned caring for a loved one with MS. You won't want to miss my conversation with Barbara, Marina, Maiya, and Matt. We have a lot to talk about! Are you ready for RealTalk MS??! Giving thanks  :22 This Week: A roundtable discussion with four amazing MS care partners   1:31 Barbara, Marina, Maiya, and Matt discuss their roles as care partners  1:58 Share this episode  33:22 Have you downloaded the free RealTalk MS app?  33:43 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/378 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com The MS Care Partner Connection https://mscarepartnerconnection.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 378 Guests: Barbara, Marina, Maiya, and Matt Privacy Policy

Make sure you check out Sound Off Radio in the morning at 9am 98.5 KISS Fm The Big Station. November is National Diabetes Awareness Month. Jessica Mccray APRN,FNP-C and Michelle Hughes, HCPSC Diabetes Care Coordinator and Certified Lifestyle Coach of Health Care Partners of South Carolina will join us this week to discuss this important topic. 

In this episode you will:  Learn about how the Aphasia-Friendly Reading Approach was developed. Hear about the importance of actively engaging care partners in therapy through this storytelling approach. Learn the importance of celebrating stories and how to host your own version of a Waffle Night.   Katie Strong: Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a  member of the Aphasia Access Podcast Working Group. I'm also a faculty member at Central Michigan University where I lead the Strong Story Lab. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Harold Regier and Dr. Erin O'Bryan. We'll be talking about the Aphasia-Friendly Reading Approach that Harold developed for his wife, Rosella, who had aphasia and how Dr. O'Bryan took this approach into the lab to refine it for clinicians to use in sessions. Before we dive into the conversation, let me share a few details about our guests. First a bit about Harold. Harold R. Regier, B.S. Ed., BDiv. Theol., is a retired minister with a career path in programs addressing social justice issues. In retirement, his spouse, Rosella, had a stroke resulting in aphasia. His passion shifted to becoming an aphasia care partner focused on helping to recover language and communication skills. He is the author of “A Decade of Aphasia Therapy,” subtitled “Aphasia-Friendly Reading: A Technique for Oral Communication,” published in 2021.  Our second guest is Dr. Erin O'Bryan. Erin is an Assistant Professor in the Department of Communication Sciences and Disorders at Wichita State University, in Wichita, Kansas. Her major research, teaching, and clinical interests focus on helping people with aphasia communicate through scripts, stories, and phrases and teaching students and care partners how to support communication. Dr. O'Bryan directs the Wichita Adult Language Lab whose current projects focus on supported storytelling and Melodic Intonation Therapy. Welcome Harold and Erin. I'm looking forward to our conversation today. Erin O'Bryan: Thank you, Katie! I've been listening to Aphasia Access Podcasts for years, and so many of my heroes have been interviewed in this series. It is really an honor that you invited Harold and I to be on the podcast today! Katie Strong: I am so excited for our listeners to hear about how the Aphasia-Friendly Reading Approach was developed and expanded. This work is near and dear to my heart – particularly in this unique way of developing and telling stories. I feel compelled to disclose to our listeners that I am grateful to have been involved in this work as it was refined for clinical environments. So, I am going to come right out and say, this is my bias. Harold, I'm a big fan of yours and the Aphasia Friendly Reading Approach and of you Erin for how you brought this approach into the lab and studied it so that clinicians can use this approach. So, now let's get started! Harold, can you share a bit with us about how the Aphasia-Friendly Reading Approach came to be? Harold Reiger: Sure. Thank you so much, Dr. Strong, for the privilege of being here to share just a bit of our story. You know, Rosella and I would have celebrated our 65th wedding anniversary if she had stayed with us just a few weeks longer. We had a very long and very happy marriage. She used to kid me, “We've been together so long we know what the other person will say before he or she says it.” Well, actually, aphasia kind of shattered that theory. But maybe there was a little bit of that was true. Well, anyway, Rosella was a retired public-school teacher with part of her career also involving children's curriculum development. She led many workshops, was a storyteller, and was a frequent guest speaker. Communication and broad coalitions were a strong suit for her. So, aphasia, loss of language was a huge loss for her. Perhaps that sets the stage for working so hard to restore some major storytelling. But I'm sure this is the same kind of feeling that every person who is a care partner with the person with aphasia has. How did we discover a technique for storytelling through oral reading? Really, I think I just stumbled into it. The cues came from Rosella. She could say many words. She had a strong voice, but she did not put words together in a way that made it possible for a listener to understand what she meant to communicate. So, I was highly motivated, wishing there was a way to help her tell her stories. Looking back, I now can see three of what I call ‘indicators' that led me to the technique that I eventually called Aphasia-Friendly Reading. They were painting, reading, and church liturgy. So let me explain. Indicator number one, completely on her own, Rosella began to paint. Just shy of two years after her stroke, Rosella began to paint. She painted for four years. She painted 250 paintings. The choice of her subjects were all hers. Objects, scenery, flowers, roadside sightings, trips and vacations, past memories. And yes, stories, family stories, stories that she didn't have words to tell, but she could tell them with a brush. She gave every picture a title or caption, signed it, and dated it. And somehow she found those one, two, or three words to intelligibly, that is accurately, identify the picture that she had just painted. But after four years of painting those pictures, she put her paintbrush down, never to pick it up again. And yet I kept remembering that she was able to identify pictures accurately using those few words to explain what it was that she was telling with her pictures. But then indicator number two came, reading periodicals and books. She underlined periodicals with many circles, much underlining. For a long time, Rosella delved through as many as 40 or 50 books per month. She turned every page, but did she understand what she was reading? Frankly, I often wondered and doubted it. One day, Rosella was reading orally beside me, and I pressed my iPhone video button. Listen to just a few seconds of that reading. And while you listen, think of two questions. Could you understand what she was reading? What was the story that she was trying to tell? And secondly, do you think that Rosella was understanding what she was reading? So listen to that clip. Excerpt of Rosella reading from a book. You heard Rosella reading the story of she and her sister, Anna Grace, requesting radio station KNEX out of McPherson, Kansas to surprise their mother by playing it for her birthday. It was a song that the girls knew that their mother loved. And you heard her read those words, “I love those dear hearts and gentle people.” And then as she continued reading the lyrics of that song, she exclaimed, “Oh, Harold”, which was her way of saying how excited she was to recall that particular story. Now, that explanation, of course, was not in the book. Then there was a third indicator that I recognized, and that was liturgical reading. One day in church we were reading a call to worship displayed on the screen. We were reading responsibly with the leader reading the first line and the congregation reading the second line. I glanced to my side and was surprised to see Rosella reading with the congregation. Maybe it was only the first three or four words of the line, but she read these words accurately. A light went on in my mind. Might this be a hint of how to help Rosella participate in oral reading? Short sentences read with a co-reader who read every other line and written in an easy to follow format? And so I adapted various psalms into very short lines formatted for us to read responsively. I read the first line, she read the second. The result was amazing success. Let me just illustrate by us reading just a very short psalm for you. This is Psalm 150 that Rosella and I will read together. H: Praise the Lord! R: Praise God in his sanctuary. H: Praise God in his mighty firmament. R: Praise Him for his mighty deeds. H: Praise the Lord for his greatness. R: Praise him with the trumpet. H: Praise him with the lute and harp. R: Praise him with the dance. My thought then was, could we try to write other stories and read them in what I began to call Aphasia-Friendly Reading format and style? And so, I began in earnest to try to write other stories. Short sentences, familiar words, larger font. Each line considered a sentence, even if it was only one word. Label the first line H for Harold and the second indented line R for Rosella. As I started reading and continued to read every other line, this could set the tone, the rhythm, and the pattern for saying every word clearly. I thought it was time to try. And then I began to wonder, is there a setting that we could read stories to others? Could we create an audience in some way? When COVID hit, of course, I could not see Rosella in person anymore, for an entire year we were separated. And the only contact we had was FaceTime telephone calls. And those were really a disaster because we found it very difficult to communicate with each other when Roselle was not able to understand me and I wasn't able to understand her, except when we read Aphasia-Friendly stories. And so, I wrote many stories during that year. And we read those stories then as our connection during our FaceTime calls. And somehow we were able to survive COVID. But it was after COVID then that we were able to again get back together occasionally. And I would bring her back to my apartment. And there I would invite friends, usually a couple or two individuals to come over and I would serve waffles. I'm not a kitchen person, but I could make waffles. So, we'd have a simple meal, a simple supper that we could visit with each other and talk about anything that we would like. And Rosella almost always simply said, “I remember exactly”. Because as others told stories that she was familiar with, she could comment that way. Otherwise, her conversation skills were not there. So that was our first hour that we would spend together simply informally visiting with each other. And the second hour that we spent together, we would go to what I would call “my theater,” our living room with a 50-inch television. And there we could read Aphasia-Friendly stories. I would stream the story to the television set. I would have them formatted so that there would be an H for Harold, an R for Rosella, and we would read the story so that the folks who were listening and watching could see the story as well as hear the story. And if we made any mistakes, they could make the corrections in their own mind. There was a way that she was able to, again, participate. It's worth telling. But there was one waffle evening when she turned to me, and said, “China”. I knew she had a story in mind, but her look said, “you tell it. I can't do it.” And so, I did. It was a story about a cracked tea cup And so I decided certainly next Waffle Night we need to let her help tell that story of the cracked tea cup. Here is that story. Cracked Tea Cup. H: This is as story of a cracked tea cup. R: Harold and I were youth sponsors. H: Rose was one of the youth. R: Winifred was her mother. H: She invited me to her home. R: “Thank you,” she said. H: “Thank you for being Rose's sponsor.” R: We visited. H: Before leaving, she said R: “Let me pray for you.” H: It was a pray of blessing… R: …for our work in Mississippi. H: Then she added, R: “Wait!” H: “I have something for you.” R: She got a tea cup. H: Erland brought it to me from China. R: It's cracked. H: Put it in your china cupboard. R: You'll never use it. H: “But you'll remember be when you see it.” R: Sixty years are gone. H: This tea cup is still in my china cupboard. R: And I remember Winifred. H: It reminds me R: Of the grace, H: Of the affirmation, R: Of blessing, H: Of the seminary president's wife.   And so those Waffle Nights became the favorite parts of our week when we could spend time with friends and Rosella could be part of the conversation by reading stories together with me. Katie Strong: So beautiful! This is really just a fabulous way of having such a natural thing, a shared meal, a celebration to share stories. And it sounds like everybody enjoyed Waffle Nights. So, thank you for sharing, Harold. Erin, I was wondering if come into the conversation a bit more and tell us how you got involved with Harold and the Aphasia-Friendly Reading Approach? Erin O'Bryan: Thank you, Katie. Even though I've heard Harold's story so many times, I still get teary every time I hear him talk about their year of not being able to see each other during COVID and the Waffle Nights that were just so wonderful. So, I met Harold in 2019 when I first became an Assistant Professor after 10 years of working as an SLP in healthcare. And Wichita State already had a weekly aphasia group, and I couldn't wait to meet the members. So, I went to aphasia group and there I met all of the care partners in the observation room and Harold showed me a video of him and Rosella reading a story together. I had been watching Rosella in the aphasia group and I'd seen that most of her utterances were short one- to two-word phrases and that much of her communication was nonverbal. But then in the video, she was reading full sentences aloud, taking turns with Harold. And what really struck me was that she was so motivated and happy to read the story. I was so impressed. Harold asked me, “Do you think that other people with aphasia could benefit from doing this?” So many thoughts were running through my mind as we were having this conversation. Earlier in 2019, I had visited Audrey Holland, who was one of my mentors when I was in grad school at University of Arizona. And we'd actually set up this meeting through an online Scrabble chat. She invited me to her home. Katie Strong: How very ‘Audrey'. Erin O'Bryan: Yes, it was lovely. And I got to visit her with all her kitty cats. So, I asked her advice because I was applying for an Assistant Professor position after 10 years of working in health care. And I remember that she was so excited about her speechpathology.com video series and the related book that she was working on with Roberta Elman that she liked to call the Social Imperative of the LPAA, which I believe is the subtitle of that book. And Katie, I think you were a part of both the video series and the book. Katie Strong: I was, yes. Erin O'Bryan:  Well, Audrey just loved that. She was so excited about that, and she told me to learn everything I could about the LPAA. And she said, “I must join Aphasia Access.” She said, “that's where all the important work is happening.” So that year I listened to loads of Aphasia Access podcasts, and I got very familiar with the Chapey and Colleagues LPAA Values chapter. So then as I'm sitting there talking to Harold, I'm thinking about the LPAA value, everyone affected by aphasia is entitled to service. So, I mean, who is affected more than a spouse? So definitely I was thinking about having the care partner being involved seemed like a wonderful thing. And I was also thinking that Harold and Rosella's approach shared so many similarities with Script Training, which I have loved and have been using in healthcare care since grad school. And there also are similarities with ORLA and Multiple Oral Rereading. And all of these are evidence-based treatment approaches. So, I felt pretty confident that Aphasia-Friendly Reading could be a very valuable intervention. So, I said to Harold, “I'd like to try using your approach with other people with aphasia and their care partners in our clinic”. And Harold was happy for us to try it. Katie Strong: I love that. I love that. And just for our listeners, we'll put some links and references in the show notes for some of the approaches like ORLA and Script Training that Erin has mentioned in addition to Harold's book and some other some other resources too. Erin O'Bryan: Yes, thank you, Katie. Those are all wonderful resources for people to be looking at. So, my grad students and I started a pilot study with a woman with aphasia and her husband. And they were actually friends of Harold and Rosella's from their aphasia group. We use the pseudonyms Cora and Dave when we describe them in our papers. It became clear that we needed to make a few adaptations to Harold's approach for use in the clinic. For one thing, I wanted the person with aphasia to have the largest role in selecting the story topic and deciding what she wanted to say. For our first session, we asked Cora and Dave to bring ideas for a story that Cora wanted to tell. And we also suggested they consider bringing some related photos. In our first session, Cora, Dave, my grad student, Addison, and I all sat around the table and together we brainstormed about the story. Cora wanted it to be about a Caribbean cruise that she and Dave had gone on. She brought photos from that trip. Dave helped with supplying names and information about places that Cora wanted to talk about. Places from their shore excursions, such as having their picture taken with a donkey in St. Thomas and visiting the Bomba Shack on the island of Tortola. We got Cora's feedback on every line that was proposed, fine-tuning the story until Cora liked every line. And we also adjusted some of the lines to make them easier for her to say. So once Cora and Dave were happy with the story, we helped them practice during our sessions, one hour per week with my grad student, Addison and I at the clinic. And we gave a printout of the story and a practice log to record notes about their home practice. In this first pilot project, Cora and Dave practiced their story for eight sessions until Cora said she was ready to plan their story sharing celebration. Then they shared their story with their friends in aphasia group. And the clinicians and the other people with aphasia in the room were just amazed. And other people in the aphasia group said, “I want to do that!” So, after two people with aphasia and their care partners did Aphasia-Friendly Reading projects, I wrote a manuscript reporting the pilot results. And Katie, I had seen online that you were an editor of Perspectives at the time. So, I emailed you my manuscript and asked if it was appropriate for Perspectives. And you emailed me back and said, “let's meet online and talk about it.” I was so delighted that you were interested in my project. You suggested that I consider exploring the value of the intervention by interviewing the participants. And I didn't know anything about qualitative research. But, Katie, you helped me write great interview questions for the care partners. And you helped me learn thematic analysis so we could find the themes in the care partner's quotes. And so, after learning from you, I have come to love the thematic analysis process. I really think it leads to deep listening. What we learned from the interviews is that the care partners felt empowered by being included in the intervention and the care partners really valued the collaborative nature of the storytelling project and especially that the intervention was so different than the previous therapy experiences that they had had because it was person-centered, it was fun, and they got to share their story with other people in their lives. So, then the three of us, Harold, Katie, and I wrote our first article about Aphasia-Friendly Reading and it's published in Aphasiology and the title is, “I wasn't just sitting there”: Empowering care partners through the Aphasia-Friendly Reading Approach. And then in 2023, the three of us went to Boston and presented it at ASHA. Katie Strong: Thanks for sharing that, Erin. You know, I think the experience of the care partners saying that therapy was fun important to note. And Harold has mentioned that Rosella thought it was fun, and the other participants thought it was fun. And I guess I just want to bring home that hard work can, can still be fun or therapy can be fun. And especially when it comes from the person with aphasia and their care partners. The topics are generated by the client and care partner. They're sharing things that are really important to them that have happened in their past. I love it. Erin O'Bryan: And one of the care partners even said that they learned better when it was fun. Katie Strong: I love it. Fantastic. Erin, I was wondering if you could share some tips for clinicians who might be listening that are thinking about how they might be able to incorporate this Aphasia-Friendly Reading Approach into their practice. Erin O'Bryan: Thank you for asking, Katie. So, in the past year, you and I have been talking about how we want to make it as easy as possible for clinicians to use our storytelling approaches in regular clinical settings, outside of research. And we really want clinicians to realize that it takes almost no time to prep for a person-centered storytelling session. You just have to go into the session ready to actively listen to what the person with aphasia wants to say. I love the acronym PULSE that you and Barbara Shadden wrote about in your paper, The Power of Story and Identity Renegotiation. And then in our paper, we reviewed PULSE again. So just for our listeners, I'm going to go through it real quickly because I think these are great things for clinicians to keep in mind. The P in pulse is for partnerships, partnering with the person with aphasia. And in the case of Aphasia-Friendly Reading, the clinician partnering with the care partner also. The U in pulse is for uniqueness. So, the clinician should be prepared to help the person with aphasia tell their unique story. The L is for listening. The clinician needs to learn how to really listen. And S is for supporting the person with aphasia in telling their stories. For example, using communication ramps in Supported Conversation for Adults with Aphasia strategies to support communication. And then finally, the E impulse is for explore. So as a clinician, be ready to go off-road with your client to explore the story that they want to share. And as a clinician, know that it's okay, even it's great for you to do that. Katie Strong: I love that. I love that. Erin, I guess that leads us into sharing that we do have a paper that came out in 2024 called Person Centered Stories on the Main Stage in Intervention, which highlights examples from three different story projects, including Aphasia-Friendly Reading. So, we'll link that to the show notes as well. Erin O'Bryan: Yes, and this year at ASHA 2024, Katie, you and I are going to be also giving a talk about this work called Elevating Person-Centered Stories to the Main Stage in Aphasia Intervention. And we are looking forward to presenting this work hopefully to an audience of clinicians. Katie Strong: Yes, yes, we hope to see folks in Seattle for sure. Well, I want to bring back both Harold and Erin into this conversation. And I think one of the things that I've recognized through this collaboration that you and Harold and Rosella and later on I got to be a part of is that we really are all better together. And I was hoping each of you could take a moment to share how this work has changed your thinking or maybe some ideas about sharing with others about what you've learned from this collaboration. Harold Regier: Well, for me, one of the things that I think I really learned from this is that we care partners need the therapist and the therapist needs us care partners. And there are more ways in which we can work together than perhaps sometimes we have done it when we have just been sitting there. And so, I really, I'm so pleased to be able to feel that that we care partners are more involved or can be more involved in the whole therapy process than what so often we have been. But I think that one of the things that the therapist needs to help us understand is when is it appropriate for us to be part of the process and when it is not appropriate for us to be part of the part process. It's not a matter of us being there all the time and sometimes being in the way. So, I think that kind of very frank candid conversation with us would help us understand that. And I certainly understood better that that the role of the care partner in terms of helping the person with aphasia be able to communicate better is very different from the role of the therapist. I never tried to be the person who was the teacher, trying to let Rosella know how she should do better and how we might be able to improve our reading. We just did it and it came out the way it came out. But then when I see how Erin was working with other clients and the persons with aphasia and the family members together identified the stories that they were interested in putting together, and the therapist helped put that together into words that they then could repeat or share together and in a storyline, that that is the place where I think we can be so much more collaborative with the therapist in a process like that. So I just always was telling myself, “Don't be a therapist. Don't be a teacher. Don't try to say, well, you can do better than that. Just simply do what is natural.” And then I wish that the therapist would take the other role and really work hard to help the person with aphasia do better with their reading and their performance. We didn't do our reading for production. We did it for fun, as you were saying earlier. And then we did it because we wanted to share that fun and that experience with others. And that was so very, very satisfying for us. Those are some of the thoughts that have come to me in terms of the relationship between therapist and care partner. Katie Strong: Thanks Harold. Yeah, Erin, any thoughts? Erin O'Bryan: I've learned so much from this collaboration. From Harold, I learned what a difference it makes when a care partner puts so much time and thought into supporting their partner with aphasia's communication and her quality of life. Also I've seen how much Harold has done and I hope that me you know as a busy professor stopping and taking the time to tell him that I saw so much value in what he was doing at home with Rosella reading those videos together. I hope that this helped him realize that it was valuable to share. And I'm thrilled to say that Harold has been going around the state of Kansas giving talks about aphasia at colleges and senior living facilities. He's doing so much and I love to see that. And from collaborating with you, Katie, I've learned the importance of making the story sharing a really beautiful celebration honoring the person with aphasia and you know bringing special things like favorite food treats, beverages, flowers, and especially inviting the people that are important to the person with aphasia. We've now had five or six story sharing celebrations. It seems like everyone is more beautiful than the last. I've learned so much about that. And I've also learned that qualitative research helps me capture the meaningfulness of these projects and the meaningfulness as we're working with people with aphasia and that this research can be so fun and rewarding. Katie Strong: I love that. I love that. As I was listening to you, Erin, respond to Harold, it just sounds like together we can validate one another. The work that you're doing, you were doing with Rosella, Harold is very validating and then Erin bringing it into the lab to test it out and it's all beautiful. It's, it really is. And I guess as I reflect on this thought about what I've learned is to reiterate, Erin, something you said, that listening to family members or care partners and the ideas that they have to engage their loved ones in communication activities are so powerful and taking that time even if you are busy to listen and think and validate and see how that connects to the existing evidence-based literature. I think is really powerful. But I also think that there's this collaboration and the combination of care partners and clinicians and researchers. And of course, the person with aphasia at the center of all of that, making a powerful team to develop innovative methods of storytelling is really one of my big takeaways from all of this. Erin O'Bryan: Yes, that's wonderful. Harold Regier: I would like to give kudos to the therapists who worked with Rosella over the many, many years. Ten years of aphasia therapy, four of which were one-on-one, six of which were part of a support therapy group. Those therapists were such relational people, such encouraging people, and also knew the techniques that work in therapy. So, I wanted to say that those years were very, very meaningful, very, very helpful, and helped us with the day-to-day kind of living with hope, with the expectations that things can continue to get better. Katie Strong: Thank you, Harold. Yeah. Erin, any other thoughts as we wrap this up today? Erin O'Bryan: Well, I just wanted to say that I would never recommend that all intervention involve the care partner because I understand that it's good for the person with aphasia to get one-on-one time with the clinician. But don't forget that that care partner is often with the person with aphasia almost 24/7 and we may only see them one or two hours a week. So, it's so important that we do more to really educate the care partner about how to acknowledge the competence of the person with aphasia and really how to support their communication. So that's why I really want us to do more with in involving the care partner and in intervention. So, I'll get off my soapbox. Thank you, Katie, for letting us share about this project that I love. Katie Strong: I'm so delighted that we could have this time together today. Harold, thank you for your generosity and sharing your ideas and Rosella's stories with us and this beautiful work of Aphasia-Friendly Reading and Erin for your work in the lab and bringing it to the clinic. On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Katie Strong. Thanks again for your ongoing support of Aphasia Access. Contact information for Guests – Harold Regier hrregier@cox.net  Erin O'Bryan, PhD., CCC-SLP erin.obryan@wichita.edu  Resources Aphasia Institute's Introduction to Supported Conversation for Adults with Aphasia (SCA™) eLearning. https://www.aphasia.ca/health-care-providers/education-training/online-options/ Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons-Mackie, N. (2000).Life Participation Approach to Aphasia: A statement of values for the future. The ASHA Leader, 5(3). https://doi.org/10.1044/leader.FTR.05032000.4 Cherney, L. R. (2010). Oral reading for language in aphasia: Impact of aphasia severity oncross-modal outcomes in chronic nonfluent aphasia. Seminars in Speech and Language, 31, 42–51. https://doi.org/10.1055/s-0029-1244952 Cherney, L. Babbitt, E., Oldani, J., & Semik, P. (2005). Efficacy of repeated choral reading for individuals with chronic nonfluent aphasia. [Clinical Aphasiology Paper]  http://aphasiology.pitt.edu/1548/  Kaye, R., & Cherney, L. R. (2016). Script templates: A practical approach to script training in aphasia. Topics in Language Disorders, 36(2), 136–153. https://doi.org/10.1097/2FTLD.0000000000000086 O'Bryan, E. L., Regier, H. R., & Strong, K. A. (2023). “I wasn't just sitting there”: Empowering care partners through the Aphasia-Friendly Reading approach. Aphasiology. https://doi.org/10.1080/02687038.2023.2272956 O'Bryan, E. L., & Strong, K. A. (2024). Person-centered stories on the main stage in intervention: Case examples from the My Story Project, Aphasia! This Is Our World, and Aphasia-Friendly Reading. Perspectives of the ASHA Special Interest Groups. https://pubs.asha.org/doi/10.1044/2024_PERSP-23-00272 Regier, H. (2021). A Decade of Aphasia Therapy: Aphasia-Friendly Reading: A Technique for Oral Communication. Independently published Available on Amazon Strong, K. A. & Shadden, B. B. (2020). Stories at the Heart of Life Participation: Both the Telling and Listening Matter. Chapter 5. In A. L. Holland & R. J. Elman (Eds.) Neurogenic communication disorders and the Life Participation Approach: The social imperative in supporting individuals and families (pp. 105-130) Plural Publishing. Strong, K. A & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. ASHA Perspectives, SIG 2, 5, 371-383. https://pubs.asha.org/doi/pdf/10.1044/2019_PERSP-19-00145 Youmans, G., Holland, A., Munoz, M. L., & Bourgeois, M. (2005). Script training and automaticity in two individuals with aphasia. Aphasiology, 19(3/4/5), 435–450. https://doi.org/10.1080/02687030444000877

Episode 44: HLTH 2024: Behind the Glitz – Real Insights and Bold Innovations in Health IT In this lively recap of the HLTH 2024 conference in Las Vegas, they dive deep into the event's biggest topics with host Tony Schueth, CEO of Point-of-Care Partners, and guest co-host Seth Joseph, Managing Director of Summit Health and contributor to Forbes.com. Known for its forward-looking focus on healthcare innovation, HLTH 2024 was packed with discussions on artificial intelligence, data interoperability, data security, and the emerging technologies shaping the industry. Find all of our network podcasts on your favorite podcast platforms and be sure to subscribe and like us. Learn more at www.healthcarenowradio.com/listen/

Katie Fagan, Senior Program Coordinator & Clinical Social Worker at Northwestern University Parkinson’s Disease and Movement Disorders Center, joins Lisa Dent to talk about Northwestern Medicine patients performing at Second City’s Improv for People with Parkinson's Disease and their Care Partners tomorrow at 3 pm. For more information or to register, visit nm.org or email […]

If you're one of the 11 million Americans providing unpaid care to a loved one with Alzheimer's disease, you know that caregiving is both incredibly rewarding and challenging. What makes caring for someone with dementia so emotionally and physically demanding, and what resources and strategies are available to help? In this episode, Bonnie Nuttkinson joins us to discuss the unique needs of dementia caregivers, tips for navigating each stage of the disease and ways to find support along the caregiving journey. Guest: Bonnie Nuttkinson, MS, research program coordinator, Wisconsin Alzheimer's Disease Research Center   Show Notes Read the Alzheimer's Association's 2024 Facts and Figures report that Dr. Chin mentioned at 7:29 Get 10 tips and more resources for caregivers from the Caregiver Action Network that Dr. Chin mentioned at the 12-minute mark. Visit “Resources for People with Dementia and Care Partners” on the Wisconsin ADRC website. Find caregiving resources on the National Institute on Aging's (NIA) Alzheimer's Caregiving website. Download or order The Caregiver's Handbook from the National Institute on Aging (NIA) for free. Alzheimers.gov has information and resources for caregivers managed by the NIA at the National Institutes of Health (NIH). Find local elder care resources with the Elder Care Locator that Bonnie mentioned at 23:30.  Learn more about Bonnie from her profile on the BerbeeWalsh Department of Emergency Medicine website. Read “UW–Madison Alzheimer's program staff featured in Badger Talks series during National Family Caregivers Month” on the Wisconsin ADRC 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.

In this episode, Emma Case, Planning and Advocacy Specialist at The Senior Alliance, talks to Jim Mangi, Founder, and Director of Dementia Friendly Saline, an advocacy group in Saline, Michigan. Jim is also a Care Partner to his wife. They talk about how his personal situation inspired him to create Dementia Friendly Saline, which advocates for people living with dementia to help make their lives easier. We hear how a city or a community can become dementia-friendly, the programs and initiatives they implemented, and how to work with businesses, service providers, and residents to become more accommodating to those living with dementia. Great information!  www.thesenioralliance.org. Produced by The Senior Alliance and Blazing Kiss Media. The post Inside The Senior Alliance: Dementia Friendly Saline (Ep 50) appeared first on The Senior Alliance.

Care Partners in Action: Celebrating Friendship and Support- Episode 177 - Transcript Join host Stephanie Buxhoeveden, an MS clinician and researcher, as she welcomes Sharon Vaughn and her care friend, Eileen Dubois. In celebration of Caregivers Month, Sharon and Eileen share their inspiring friendship and the unique ways they support one another. Discover the powerful bond between a  care partner and friend living with MS, as well as practical insights and heartfelt stories that highlight the importance of connection, compassion, and resilience in the face of challenges. Here we will have uplifting conversations that honor the vital role of care partners in our lives! Thank you to EMD Serono for their support of this podcast episode. Disclaimer: This podcast provides general educational information. Can Do MS does not endorse, promote, or recommend any product, service, or diet associated with the content of this program.

In this lively recap of the HLTH 2024 conference in Las Vegas, The Dish on Health IT dives deep into the event's biggest topics with host Tony Schueth, CEO of Point-of-Care Partners, and guest co-host Seth Joseph, Managing Director of Summit Health and contributor to Forbes.com. Known for its forward-looking focus on healthcare innovation, HLTH 2024 was packed with discussions on artificial intelligence, data interoperability, data security, and the emerging technologies shaping the industry.Tony and Seth kick off the episode by reflecting on HLTH's unique vibe, contrasting it with other industry events like HIMSS. They offer honest reactions to the glitzy atmosphere and networking opportunities that HLTH provides and discuss how its “futuristic” focus is a magnet for healthcare investors, entrepreneurs, and thought leaders. Seth provides a candid look at the range of perspectives on AI in healthcare. While excitement around generative AI applications remains high, he notes a growing willingness to challenge its real-world impact and value, marking a shift from last year's unbridled enthusiasm to more cautious optimism. Tony echoes this sentiment, observing that AI and other tech innovations will only prove their worth when they meaningfully improve patient care and operational efficiency.Throughout the episode, Tony shares exclusive clips from his one-on-one interviews with several key industry leaders who each offer unique insights into the conference themes and the road ahead for health IT. The interviews include:Bevey Miner, EVP of Consensus – Bevey shares her views on HLTH as a stage for innovation and the importance of collaboration in advancing health IT solutions.Frank Harvey, CEO of Surescripts – Frank discusses the critical role of data and interoperability in healthcare, and how AI could streamline data exchange and improve patient outcomes while noting the limitations of isolated “point solutions” that need a more holistic approach.Tim Pletcher, CEO of MiHIN – Tim emphasizes the importance of regulatory compliance, particularly with TEFCA, HTI-1 and HTI-2, as well as the need to build trust across state lines to enhance data-sharing frameworks.Charlie Harp, CEO of Clinical Architecture – Charlie dives into the challenges of data quality and the vital role of accurate, clean data in effective AI applications.Brian Anderson, MD, CEO of CHAI – Brian brings a thoughtful perspective on responsible AI use in healthcare, stressing the need for realistic expectations and industry-wide collaboration to ensure AI's impact matches its promise.Tony and Seth revisit the recurring theme of interoperability, an area of focus for POCP. They discuss its complex challenges and how data standards and regulatory shifts are beginning to create a more integrated system. Highlighting Blue Shield of California's partnership with Salesforce on prior authorization as a standout announcement, Tony notes the significance of innovations that simplify administrative burdens on providers and reduce care delays for patients.The episode wraps up with Tony and Seth's thoughts on HLTH's atmosphere, especially the mixed reactions from attendees about the conference's glitzy setup. While some question the balance between style and substance, Tony appreciates the energy and enthusiasm HLTH brings to healthcare, believing it encourages important investment and public interest in health IT. Seth offers a dose of realism, pointing out that while glitz can attract attention and funding, the true test will be in the hard work and strategic planning needed to implement these innovations at scale.For those eager to hear about the latest in healthcare innovation, this episode delivers a nuanced take on HLTH 2024, blending high-level industry insights with grounded observations on where health IT is—and isn't—making an impact.

Episode 43: Transforming Pharmacy and Public Health through Health IT - Insights from Pam Schweitzer On this episode, POCP hosts Tony Schueth, CEO of Point-of-Care Partners, and Kim Boyd, Regulatory Resource Center Lead, sit down with Pam Schweitzer, former Assistant Surgeon General and current Chair of the NCPDP Foundation Board of Trustees. Together, they explore the transformative power of health IT in reshaping pharmacy practice and public health. The conversation dives into key topics like interoperability, public health data modernization, and the evolving role of pharmacists in healthcare, especially in rural communities. Pam offers valuable insights into the regulatory landscape, highlighting policies such as CMS 0057 and HTI-2 and how they are driving real-time data exchange between payers, providers, and public health systems. This episode is a must-listen for those interested in healthcare interoperability, pharmacy standards, and the future of public health integration. Find all of our network podcasts on your favorite podcast platforms and be sure to subscribe and like us. Learn more at www.healthcarenowradio.com/listen

How do caregivers find the strength to continue day after day, navigating the complexities of dementia?It's a journey that demands resilience, patience, and an often-overlooked capacity to find joy in the simplest moments. Our guest, Angela Lunde, M.A., has dedicated over 20 years to understanding the experiences of those living with dementia and their care partners. Her insights into the emotional landscape of caregiving are both profound and encouraging.       Angela is not just a researcher but a true advocate, working tirelessly to improve the quality of life for people impacted by dementia. She serves as an Associate in Neurology at the Mayo Clinic's Alzheimer's Disease Research Center and has contributed to numerous publications and books on topics ranging from mild cognitive impairment to innovative solutions for wellbeing. Angela believes in the power of community and the importance of reducing stigma, integrating persons with dementia into everyday life, and supporting those who care for them. Today, Angela sheds light on the ways caregivers find resilience, how new patterns of communication can transform relationships, and the role of acceptance in navigating the caregiving journey.       In this episode, we'll also discuss the Connect2Caregivers Study at Mayo Clinic, a research initiative aimed at providing peer-to-peer emotional support for dementia caregivers. We'll be joined by Joan Carp, a care partner for her husband living with Alzheimer's, who has personally experienced the benefits of a mindfulness-based dementia caring program. Together, we talk about the real-life challenges caregivers face, the surprising sources of strength they tap into, and the importance of creating supportive, connected communities. Whether you're a caregiver, a family member, or someone interested in the well-being of those impacted by dementia, this conversation promises to be heartfelt, insightful, and inspiring.   Resources mentioned: Mindfulness Based Dementia Care – Presence Care - https://presencecareproject.com/   Book: Day to Day – A guide for offering care and support - https://mcpress.mayoclinic.org/product/day-to-day-living-with-dementia/   Mayo Clinic Dementia Hub - https://connect.mayoclinic.org/blog/dementia-hub/   Connect2caregivers https://connect.mayoclinic.org/discussion/seeking-current-and-former-family-caregivers/   Dementia Action Alliance https://daanow.org/   Lorenzo's House https://lorenzoshouse.org/   Alzheimer's Association https://www.alz.org/   LBDA https://www.lbda.org/   AFTD https://www.theaftd.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!  

What if the silent heroes of Parkinson's care aren't the patients themselves but the dedicated partners standing beside them? Join us as we uncover the vital, yet often overshadowed, role of care partners in navigating the Parkinson's journey. Hosts Travis Robinson and Judy Yarris, bring our personal experiences to light, highlighting the emotional and physical hurdles faced by those supporting someone with Parkinson's. Our conversation delves into the reality of denial in newly diagnosed individuals and how this can ripple through their support networks, emphasizing the imperative need for community support and the unsung resources that can make all the difference.We also explore the evolving landscape of independence, where modern transportation options like Uber and Waymo are reshaping the dynamics of care. The episode sheds light on the importance of self-care and open communication for care partners, especially in a world still reeling from the isolation of the COVID era. Through personal stories, we touch on the unique challenges faced by families dealing with young-onset Parkinson's, offering a message of strength and unity. By sharing both struggles and triumphs, we aim to foster a sense of community and inspire listeners to connect, support, and empower each other through the Parkinson's journey. Co-hosts: Judy Yaras & Travis Robinson Editor & Audio Engineer: (EP1-100) Spencer Yaras Audio Engineering Intern: Ana MacAller Social Media Intern: Ana MacAller www.INDYpodcast.net

In this episode of The Dish on Health IT, Tony Schueth, CEO of Point-of-Care Partners, and Kim Boyd, Regulatory Resource Center Lead, are joined by Pam Schweitzer, former Assistant Surgeon General of the United States and current Chair of the NCPDP Foundation Board of Trustees. Together, they deliver an in-depth discussion on critical topics impacting the health IT landscape, including interoperability, public health data modernization, and evolving healthcare regulations.The episode begins with introductions from Tony and Kim, highlighting Pam's extensive career in healthcare, ranging from her leadership roles in the Indian Health Service and the Veterans Affairs (VA) system to her current position as chair of the NCPDP Foundation. Pam reflects on her experience overseeing the transition from paper to electronic health records and how this complex shift required the coordination of multiple healthcare departments, including radiology and labs.Pam shares her insights into how policy changes, such as CMS 0057 and the HTI-2 proposed rule, are shaping the future of healthcare interoperability. The trio discusses how these regulations, aimed at improving data sharing between payers, providers, and public health systems, will ultimately drive real-time data exchange. They also emphasize the importance of infrastructure, standards, and innovation to support these efforts.As the discussion moves forward, Pam talks about her work on public health initiatives, particularly around pharmacy interoperability, maternal health, and the broader impacts of nutrition and food supply on community health. Kim and Pam also explore the evolving role of pharmacists in public health, especially in rural areas where they often serve as the primary healthcare providers.The conversation includes key steps for modernizing public health data systems, such as addressing the data silos between healthcare and public health systems. Pam emphasizes the need for greater collaboration and data sharing to enable a more effective public health response, especially during crises like pandemics or natural disasters.Pam, Kim, and Tony also touch on the role of the Trusted Exchange Framework and Common Agreement (TEFCA) in promoting data fluidity and expanding the integration of pharmacists and other healthcare stakeholders into the broader healthcare ecosystem.The episode wraps up with Pam expressing her optimism for the future of health IT and public health interoperability, while stressing the importance of ongoing collaboration between stakeholders, from policymakers to healthcare technology vendors. Kim adds that the evolution of pharmacy practice and regulatory changes are driving significant improvements in patient care and medication management.Listeners can tune in for a deep dive into the intersections of health IT policy, pharmacy standards, and public health modernization, with practical insights from leaders in the field. This episode is a must-listen for those interested in healthcare interoperability, the impact of CMS and ONC policies, and the future of public health and pharmacy integration.Catch the full episode on your preferred podcast platform, including Apple Podcasts, Spotify, and Healthcare Now Radio, or watch the video version on YouTube.Other resources you may be interested in:Healthy People 2030 – Data and Information Systemshttps://health.gov/healthypeople/objectives-and-data/browse-objectives/public-health-infrastructurePublic Health Infrastructure - Healthy People 2030 | health.govhttps://health.gov/healthypeople/objectives-and-data/browse-objectives/public-health-infrastructureStrategies for Public Health Interoperability | PHDI | CDChttps://www.cdc.gov/data-interoperability/php/public-health-strategy/index.htmlMarch 27, 2024 – Draft 2024-2030 Federal Health IT Strategic Planhttps://www.healthit.gov/sites/default/files/page/2024-03/Draft_2024-2030_Federal_Health_IT_Strategic_%20Plan.pdf2023 – Infrastructure for Scaling and Spreading Whole Health – Health Informaticshttps://www.nationalacademies.org/our-work/transforming-health-care-to-create-whole-health-strategies-to-assess-scale-and-spread-the-whole-person-approach-to-health 

Don't Walk Away, A Care Partner's Journey   Lori La Bey talks with Marilyn Raichle is the Executive Director of Maude's Awards for innovation in Alzheimer's Care. In 2009 she became a caregiver for her mother Jean, and together they navigated a fulfilling life with dementia. She is also the author of the book, Don't Walk Away, A Care Partners' Journey.   Learn: What does Don't Walk Away Refer to? How did paying attention to her mother humming make a difference in Marilyn's caring journey. Capturing Legacy Ask questions, but make sure to wait for their answers. How caregivers will benefit from Marilyn's book. The importance of art as a form of communication.   Watch the Video Interview Below https://youtu.be/JJ3RurdRr9s   Listen and Subscribe to Alzheimer's Speaks on Apple Podcast   Listen and Subscribe to Alzheimer's Speaks on Spotify   Alzheimer's Speaks Blog   Contact Marilyn Raichle      Website  http://dontwalkaway.net LinkedIn  https://www.linkedin.com/in/marilynraichle Amazon   https://www.amazon.com/Dont-Walk-Away-Partners-Journey/dp/B0CVDMYFQQ Maude's Awards   https://maudesawards.org    Contact Lori La Bey with questions or branding needs at www.AlzheimersSpeaks.com Alzheimer's Speaks Radio - Shifting dementia care from crisis to comfort around the world one episode at a time by raising all voices and delivering sound news, not just sound bites since 2011. Alzheimer's Speaks is part of the Senior Resource Podcast Network.  Support this Show: https://alzheimersspeaks.com/donate-now/See omnystudio.com/listener for privacy information.

On this episode, POCP hosts Tony Schueth, CEO of Point-of-Care Partners, and Pooja Babbrah, PBM and Pharmacy Lead, are joined by Shivani Patel, Executive Vice President of Patient Access Operations and Technology Solutions at Asembia. Together, they delve into key topics including specialty prescribing, pharmacy interoperability, TEFCA, and consent management, highlighting how technology, policy, and process improvements can drive positive changes in healthcare. Find all of our network podcasts on your favorite podcast platforms and be sure to subscribe and like us. Learn more at www.healthcarenowradio.com/listen/

Host Mary Anne Oglesby-Sutherly and producer, Sue Duffield revisit the amazing and healing story of one of Mary Anne's exceptional clients, Martha. It was Martha's dignity that was challenged with incontinence, but to the quick thinking of those around her, she was spared the horror of the embarrassment of losing bodily functions in a public place. One day you may find that someone you care about — a spouse, parent, relative, or close friend — needs help negotiating the very simple daily tasks of life. Perhaps that day has already come. There is so much to learn here in this episode. Caregivers worldwide deal with this kind of thing every day. But understanding that the loved one with a cognitive disability is always forefront, doing whatever it takes to make them comfortable, even using a brand new coat to cover and protect the new seat in a truck, is quite okay. www.theverandaministries.org  

Welcome to "The Dish on Health IT," a podcast brought to you by Point-of-Care Partners, a leading health IT consultancy. Each episode features a rotating panel of senior consultants and guests who discuss trends and innovations in health IT, providing insights and recommendations to help organizations leverage advances to solve their business problems.In this episode, POCP hosts Tony Schueth, CEO of Point-of-Care Partners, and Pooja Babbrah, PBM and Pharmacy Lead, are joined by Shivani Patel, Executive Vice President of Patient Access Operations and Technology Solutions at Asembia. Together, they delve into key topics including specialty prescribing, pharmacy interoperability, TEFCA, and consent management, highlighting how technology, policy, and process improvements can drive positive changes in healthcare.The conversation kicks off with an introduction to specialty prescribing. Shivani explains that specialty prescribing involves treatments that are typically more complex than standard prescriptions due to factors like high cost, special storage requirements, and adherence challenges. She points out the logistical gaps and barriers in the specialty space, such as prior authorizations and communication challenges between stakeholders. Pooja adds that the lack of a standardized definition for specialty medications further complicates the process, leading to delays and confusion.Moving on to pharmacy interoperability, Pooja describes it as the ability to share clinical data between pharmacists, providers, and other stakeholders. She emphasizes the importance of providing pharmacists with the right information they need, instead of overwhelming them with excessive data. For instance, pharmacists should not have to sift through 500 pages of patient records to find relevant information. Instead, they need targeted, pertinent data to improve patient care and streamline processes.The discussion then shifts to TEFCA (Trusted Exchange Framework and Common Agreement), which aims to fill information gaps in the healthcare system by setting standards for data exchange. Shivani and Pooja discuss how TEFCA can enhance transparency and interoperability, helping pharmacists and other stakeholders' access and share necessary patient information more efficiently. Shivani notes the potential of TEFCA to establish a universal patient identifier, which could significantly improve data sharing and patient care coordination.Consent management is another crucial topic covered in this episode. Effective consent management is essential for pharmacy interoperability and ensuring patients' privacy and data security. Shivani and Pooja explore how consent management can be improved to make the sharing of patient information more seamless and secure. They emphasize the need for standardized consent processes that allow patients to control their data while ensuring that relevant information is accessible to healthcare providers.Throughout the episode, the panel highlights the role of technology in improving the prescription journey. Shivani discusses how Asembia uses technology to support the industry by connecting stakeholders and providing tools to manage patient care better. This includes everything from prior authorizations to benefit checks and copay cards. Pooja underscores the importance of industry collaboration and transparency to create standardized solutions that benefit all stakeholders.Towards the end of the episode, Shivani shares insights about the Asembia Summit, an annual event that gathers industry stakeholders to discuss trends and innovations in specialty pharmacy. She invites listeners to attend AXS25, the next Asembia Summit, which will take place from April 27th to May 1st, 2025, at the Wynn Las Vegas. The event offers a premier forum for learning, networking, and exploring the latest advancements in the industry.Tune in to this episode to gain a deeper understanding of the complexities of specialty prescribing, the importance of pharmacy interoperability, and how collaborative efforts in technology, policy, and process can enhance healthcare delivery. Don't miss the insights shared by industry stakeholders on why they attend the Asembia Summit each year. For more information and to suggest future topics, email us at podcast@pocp.com or tweet us at @POCPHIT.

Traveling with your care partner can be stressful. Carol Giuliani of Senior Travel Companion Services is here to provide strategies and some little-known tips for caregivers. She has planned and executed over 125 domestic and international trips through all 50 states and across the globe. In this episode, Carol and I discuss tips for traveling with your care partner, everything from how to plan your trip, which airlines and resources can assist best how to handle long car rides, traveling with medical equipment, and everything in between. SHOW NOTES

In this episode, Rick Kes, Health Care Partner, RSM US LLP discusses the current state of the private equity deal market, the impact of high interest rates, and the challenges faced by investors due to fewer exits in 2022 and 2023. Rick shares insights on the factors influencing deal activity and the importance of interest […]

In this episode, Rick Kes, Health Care Partner, RSM US LLP discusses the current state of the private equity deal market, the impact of high interest rates, and the challenges faced by investors due to fewer exits in 2022 and 2023. Rick shares insights on the factors influencing deal activity and the importance of interest […]

Traveling with your care partner can be stressful. Carol Giuliani of Senior Travel Companion Services is here to provide strategies and some little-known tips for caregivers. She has planned and executed over 125 domestic and international trips through all 50 states and across the globe. In this episode, Carol and I discuss tips for traveling with your care partner, everything from how to plan your trip, which airlines and resources can assist best how to handle long car rides, traveling with medical equipment, and everything in between.  SHOW NOTES

Steve Gurney from the Positive Aging Community interviewed Katie McQuaid, author of the "Everybody Loves Grace" book series, and Tyra Hunter from Care Partners. The "Everybody Loves Grace" series, initially intended for children, has found a unique place in senior care. The books are used in reminiscence therapy, helping seniors recall past experiences and engage socially. The program also includes a plush toy of Grace, the dog from the series, which provides comfort and stimulates conversation. The books are also available in audio format for those with vision impairments. The program has been praised for its versatility and its ability to facilitate connections across generations. LIVING WITH GRACE PROGRAM DOES FOR SENIORS: Living with Grace—A Seniors Program supports caretakers in their mission to provide seniors with a fuller and happier life. The messages the program delivers are positive, timely, and relevant to their special needs. Living with Grace—A Seniors Program can inspire happiness for everyone in your community and will add value to your organization's existing activity programming. Join us in spreading positivity by connecting seniors through literature! https://www.everybodylovesgrace.com/living-with-grace/ CarePartners programs are located across the Greater Houston area. We collaborate with more than 60 different partners and over 1,200 volunteers to deliver high-quality programming for older adults, individuals with dementia, and family caregivers. https://carepartnerstexas.org/

In this episode, Rick Kes, Health Care Partner, RSM US LLP shares a market update.

In this episode, Rick Kes, Health Care Partner, RSM US LLP shares a market update.

Conscious Caregiving with L & L is "Tackling the Tough Conversations."   The topic of this episode is on "Legalities & Seniors" and features an All-Star Panel.   Mary Farquhar - CEO of Roger Fisher's Care: Mary Farquhar started as a colleague to her husband, Roger Fisher when he was diagnosed with Mild Cognitive Impairment in October 2018. As Roger's disease progressed to Alzheimer's, Mary reluctantly promoted herself to CEO of Roger Fisher's Care.    Attorney Ramsey Bahrawy: Attorney Ramsey Bahrawy has 43 years experience as an Estate Planning and Elder Law Attorney. During that time he has advised countless clients (individuals and families) in both simple sophisticated estate planning strategies. He also advises families with special needs, whether children or adult, on estate planning matters. Attorney Bahrawy represents elders and caregivers to plan for future or, in some circumstances, an immediate need for institutional medical care. In this regard, Attorney Bahrawy assists elders in protecting assets in order to qualify for Medicaid, making or adjusting estate plans such as Wills, Trusts, and Advance Directives, administering estates, guardianship of elderly persons, and financial elder abuse. Attorney Bahrawy is a former member of the National Academy of Elder Law Attorneys  Deborah Snyder – Care Partner for Her Husband and Aging & Disability Resource Center Specialist: Deborah Snyder is a Care Partner in her husband's care who is experiencing brain change with Behavioral variant Frontotemporal Dementia (BvFTD). He was diagnosed in 2019, and life changed. She is a Certified Independent Consultant with Positive Approach to Care, Teepa Snow, and has worked in the arena of senior care and aging resources since 2017. Deborah presently works for North Star Counsel on Aging as an Aging & Disability Resource Center (ADRC) Specialist.   Lance A. Slatton and Lori La Bey Co-Host and Produce Conscious Caregiving with L & L. Visit their website at: https://consciouscaregivingll.com/   To learn more about Lance A. Slatton and Lori La Bey you can visit their websites.    Connect with Lance A. Slatton: Official Website: https://lanceaslatton.com/ Official Website for All Home Care Matters: https://www.allhomecarematters.com  Connect with Lori La Bey Official Website: https://alzheimersspeaks.com/ Official Dementia Map Website: https://www.dementiamap.com/  

This special episode provides insights and coverage from the recent HIMSS24 conference. Hosts Pooja Babbrah, the PBM and Pharmacy Lead and Jocelyn Keegan, Payer/Practice Lead with Point-of-Care Partners dig into their observation from HIMSS24 before reacting to stakeholder interviews from the floor of the Interoperability Showcase on topics ranging from the impact of the final CMS interoperability & prior authorization, benefits of API adoption and pharmacy interoperability opens with a montage of HIMSS24 attendees. Find all of our network podcasts on your favorite podcast platforms and be sure to subscribe and like us. Learn more at www.healthcarenowradio.com/listen/

Sometimes dealing with dementia and the end-of-life process can be as clear as mud. But today's guest, Helen Bauer, comes as an expert in hospice care with exceptional detail that every care-partner needs. You'll hear phrases like “senile degeneration of the brain” and “the difficulty in assessing someone with dementia at end-of-life with only a snap chat” and “the importance of education and mutual understanding of grief.” All this, and a whole lot more, during this episode includes the value of “touch, gentleness, respect and how the patient is spoken to." This is the personhood and perspective of Helen Bauer. Helen Bauer, BSN RN CHPN, End of Life Educator and Advocate (The Heart of Hospice, LLC) has worked in nursing for over 30 years, specializing in hospice and end-of-life care since 2009. She is a Certified Hospice and Palliative Care Registered Nurse with a background in compliance and consulting. As owner of The Heart of Hospice, she provides end-of-life education and consulting for services for both hospice providers and consumers. The Heart of Hospice Podcast is in its eighth season as a high-ranking international podcast, heard on many networks. More about Helen Bauer: www.theheartofhospice.com www.theheartofhospice.com/podcast www.theheartofhospice.com/services www.theverandaministries.org    

Nearly 7 million Americans are living with Alzheimer's or some other form of dementia, and those who care for someone with the disease often need help navigating services. A new Alzheimer's Association report offers insight on how to make the process easier.

I have a “life verse.”  Before adopting this so-called life verse, I always thought of people who said they had one as being a little woo-woo.  I didn't understand how to claim something from the Bible as my own.  I'm sure I was a little cynical about life verses before finding mine, because I assumed that people would find something they liked without a deep personal story and just roll with it. I was dismissive of the randomness of picking a verse.  I want to apologize to anyone that I didn't pay attention to because of that attitude.   A life verse can be consequential and anyone who claims one may have a story that is worth considering. Really, anything that is a lifelong commitment is worthy of our attention because of the great care it takes to select and cultivate.  I tend to not want to make life defining pronouncements. This is probably because they may be more of a fleeting fancy than something with the substance of a true resolution. As I write this, it is Lent in the Christian calendar. I normally honor the season by stopping or starting a habit as a way of focusing on the coming of Easter. This year, I decided to start reading the four Biblical gospels and stop eating food after dinner. Little more spiritual nourishment and a  little less dessert nourishment. I picked them as short-term commitments.  It seems logical that a long term commitment like a life verse would require even more consideration than what to do for Lent. However, what I'm about to tell you isn't so much about me picking a verse, it's a story of a verse picking me.As I was going through graduate school, I also worked full time at our local hospital.  To manage my stress level, I gravitated towards a hybrid role that was a mix of a floor secretary (processing medical orders from doctors and nurses), a Care Partner (having direct patient care responsibilities in partnership with the nurses), and, for difficult patients, a Sitter (literally sitting with them and carefully watching so they wouldn't fall, pull out their IVs, or commit self-harm). I sat with lots of people who were in critical condition. While I never saw someone pass away, there were a number of patients who I spent the last days or hours with - being on high alert monitoring the patients' vital signs and taking care of the family's needs.On my last day at the hospital - a day that I had no idea would actually be my last - I brought my Bible. It wasn't ever my expectation to read to the patient, but some days when I was responsible for sitting, I needed a good long read. I would only read the Bible to the patient if they directly asked me to share with them. It happened to be on this day, the patient was curious about what I was reading.  So I read to them this passage:“Then we will no longer be infants, tossed back and forth by the waves, and blown here and there by every wind of teaching and by the cunning and craftiness of people in their deceitful scheming. Instead, speaking the truth in love, we will grow to become in every respect the mature body of him who is the head, that is, Christ. From him the whole body, joined and held together by every supporting ligament, grows and builds itself up in love, as each part does its work.”My Bible does have lots of notes scribbled on the margins of the pages. However, it rarely lists the time and place when a verse carried indelible personal significance. I did make a note of this verse that day. March 2010. Soon after reading to the patient, I was asked to go to HR. I had been in two patient fall cases in recent weeks when I misjudged when I should give them privacy while they were using the bathroom. It was time for me to resign. Four years later, after a long bout of depression, I found myself on the edge of another resignation. I didn't know when it was going to happen, but it definitely felt like there was a strong possibility that I would need to step down. Many of my coworkers knew that I had been hospitalized the previous year...