Learn to Navigate Support Systems: Four Essential Tips / Alzheimer’s and Other Dementias

Elder law attorney Patrick Cawley is equipping dementia caregivers with the essential tools they need for estate planning, including advance care planning for end of life. Patrick guides family members as they navigate the health care system and complicated ways to pay for long-term care for their loved one. He is a certified dementia care consultant, and host of the Dementia Empowered podcast.  Patrick has lived experience with a family member who has Frontotemporal Dementia (FTD), so he knows firsthand what dementia caregivers face. Here are some highlights from this episode: Patrick endorses trying care solutions before going straight to legal solutions which might escalate problems and family dynamics. The biggest challenges for dementia caregivers that Patrick sees are financial issues, forming a care team, and complicated or discordant family dynamics.Patrick advocates for caregivers to be paid in certain situations, depending on estate taxes and the financial burden on the caregivers. Recording keeping is vitally important; Patrick recommends keeping a paper trail of transactions and healthcare decisions.  Listen to the Dementia Empowered Podcast here. Connect with Keystone Elder Law here. Connect with Patrick Cawley on LI Find an Elder Law Attorney in your area at naela.org You can find the Approaching Death Support Kit at bkbooks.com. Find all of Barbara Karnes’ products and resources at bkbooks.com. Read Barbara’s blog at bkbooks.com. Connect with Barbara Karnes on Facebook IG LinkedIn Twitter (X)  YouTube Hospice Navigation Services understands that you need unbiased, expert support to have the best end of life experience possible.  If you have questions about hospice care for yourself or someone you care about, Hospice Navigation Services can help. Whether you want to connect by phone or video, you can book a FREE 30-Minute Hospice Navigation Session, or a more in-depth 60-Minute Navigation Session for $95. If you need to troubleshoot the care you’re already receiving, we’re here to answer your questions. A 60-Minute Navigation Session by video call allows up to 3 family members to get the same expert information at the same time. We believe you deserve to have good hospice care. Book your session with an expert Hospice Navigator at theheartofhospice.com.   Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Social media: Facebook  Twitter  Instagram LinkedIn

"When it comes to caregiving, the assumption about being able to take what we've learned and just naturally grow is not always going to be true." How do you think you would feel if you were caregiving for a second or third person living with dementia? Would you feel more prepared because of your previous experience? If you answered "yes," you might be surprised by what research is revealing about experienced caregivers. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, both of us have been caregivers more than once, and we recently learned about enlightening research from Dr. Emily Mroz, a researcher at Emory University's School of Nursing who coined the phrase "experienced caregiver." Her research is shedding light on a common phenomenon that affects millions of families: providing dementia care for multiple loved ones throughout adulthood. Dr. Mroz is a tenure-track assistant professor and social behavioral scientist who studies how people think, feel, and act within their social and personal situations. With training in developmental psychology, gerontology, geriatrics, and public health, she uses her multidisciplinary perspective to develop resources and interventions that support people living with serious illness, family caregivers, and those who are bereaved. Through her research and interviews with caregivers, Dr. Mroz has identified crucial insights about experienced caregivers that challenge common assumptions and offer practical guidance for those stepping into the caregiving role again. Full Show Notes https://thecaregiversjourney.org/37-studying-experienced-caregivers-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Dr. Emily Mroz, assistant professor and social-behavioral scientist, discusses her research on improving how patients and caregivers navigate serious illnesses such as dementia, end-of-life care and bereavement. Link to study flyer here To join this study, visit survey.qualtrics.emory.edu/jfe/form/SV_cYfshxWcThSSV5s.Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Avoid Assumptions About Who Is Prepared to Be a Dementia Caregiver Tip 2: Assess How Prepared You Really Feel Tip 3: Don't Hesitate to Get Involved in Skills Training and Support Groups Tip 4: Share Your Stories with Grace, Not Judgment The Importance of Research for Experienced Caregivers Dr. Mroz's study is part of a growing recognition that experienced caregivers represent a significant population with unique needs and strengths. Her virtual research study involves participants completing surveys about their caregiving experiences and sharing their stories to help researchers understand the differences between new and experienced caregivers. Study details: Focuses on people currently in active caregiving roles, including those early in their journey with a second or third care recipientParticipants receive a $50 gift card honorariumSessions are conducted virtually and take about one to two hoursCan participate alongside other dementia caregiver research studiesResearch is crucial for developing resources specifically tailored to experienced caregivers Read More in This Blog here

In this deeply personal podcast episode of, I Saved You. Now, Do the Dishes, I share the raw, nerve-wracking experience of bringing my husband home from the long-term cancer wing before I was ready. He wanted out of the hospital, but I wasn't prepared for everything I had to do for him. I shared my anxiety with the internal medicine department in hopes that they would keep him longer, but the team saw no reason to keep him, despite my pleas and the visible reality of our situation. My concerns were brushed off as caregiver overwhelm and I was advised to bring in an at-home nurse to help me with feedings, cleanings, and the drugs. I got a quick tutorial of how to feed my husband through his feeding tube by hand every three to four hours, a box of formula, a box of syringes and a vial of anti-anxiety prescription I had to give him before radiation every day. This is the reality of caregiving in crisis and what it takes to keep going when you are given more than you know what to do with and even more questions. If you're a family caregiver, reach out to me at www.carrieseverson.com or follow me at https://www.instagram.com/authorcarrieseverson/. #caregiver #caregiverburnout #marriage #cancer #mentalhealth #cancertreatment

On-call, after hours, 24/7 services - no matter what you call it, hospice care is available to patients and caregivers every hour of every day. Regardless of the day of the week, whether it’s a holiday, or the office is closed, a member of the hospice team is accessible all the time. Some hospice agencies have answering services or triage teams, but the final result of a call is connection with a nurse. If another discipline is needed, that’s going to be coordinated by the agency. No question or concern is dumb. Hospice agencies offer this service to make sure patients and caregivers feel comfortable in their homes while experiencing the end of a life.  Here are some of the reasons a caregiver or patient might want to contact the hospice team when the office is closed. The patient has had a change in condition, and is showing different symptoms.Your person (the patient) has died. There’s a question about medications. A piece of critical equipment isn’t working (oxygen, BiPap, electric hospital bed, air mattress or overlay).There are spiritual or faith needs, and the chaplain’s (or social worker’s) support is needed.  The patient has had a fall and there’s an injury.  You can find the Approaching Death Support Kit at bkbooks.com. Find all of Barbara Karnes’ products and resources at bkbooks.com. Read Barbara’s blog at bkbooks.com. Connect with Barbara Karnes on Facebook IG LinkedIn Twitter (X)  YouTube Hospice Navigation Services understands that you need unbiased, expert support to have the best end of life experience possible.  If you have questions about hospice care for yourself or someone you care about, Hospice Navigation Services can help. Whether you want to connect by phone or video, you can book a FREE 30-Minute Hospice Navigation Session, or a more in-depth 60-Minute Navigation Session for $95. If you need to troubleshoot the care you’re already receiving, we’re here to answer your questions. A 60-Minute Navigation Session by video call allows up to 3 family members to get the same expert information at the same time. We believe you deserve to have good hospice care. Book your session with an expert Hospice Navigator at theheartofhospice.com.   Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Social media: Facebook  Twitter  Instagram LinkedIn Email: [email protected] Book podcast host Helen Bauer to speak at your event or conference by sending an email to [email protected]. Find more podcast episodes from The Heart of Hospice at The Heart of Hospice Podcast (theheartofhospice.com)

 In this inspiring episode of A Time to Care: The Caregivers Podcast, we sit down with Alara Rosenberg, a retirement coach who helps individuals navigate the emotional and practical transition into post-career life. Alara shares that one of the most essential steps in this phase is taking the time to reflect on key questions: Who are you now? What do you want to do? Who do you want to become? She emphasizes the importance of social connection, encouraging retirees to build meaningful relationships and embrace the freedom to explore new interests. Retirement, she reminds us, is not a fixed destination—it’s a journey of self-discovery where everyone’s path is different. Alara invites retiree listeners to experiment with new hobbies, seek out fresh friendships, and pursue long-forgotten passions. This stage of life is a unique opportunity to realign with your values and find joy in new experiences. She leaves us with three powerful pieces of advice: Take intentional time to plan your retirement journey.Identify your new values, goals, and priorities.Take care of your brain and body to maintain vitality and good health. Tune in to be inspired and to rethink retirement not as an end, but as a new beginning filled with possibility.

Could artificial intelligence be the solution to our eldercare crisis? In this riveting episode, we dive deep into the intersection of technology and compassionate care with Breana Patel, founder and CEO of Owie AI. The statistics are sobering – we're facing a projected shortage of half a million nurses within the next decade while our aging population grows exponentially. But Breana's innovative approach offers a ray of hope in what can seem like an overwhelming challenge. Her company is developing contactless AI monitoring systems that can predict patient needs, prevent adverse events, and reduce the administrative burden on already overwhelmed caregivers. Imagine a world where technology can alert staff before a fall occurs, detect early signs of dehydration, or recognize when a non-verbal patient is in distress. These aren't futuristic dreams but tangible solutions Breana's team is currently piloting in healthcare facilities. What makes this approach revolutionary is its focus on enhancing rather than replacing human care – giving caregivers more time for meaningful interactions by automating documentation and routine monitoring. We explore the profound implications for transparency in long-term care, how AI might serve as a digital companion for isolated residents, and the careful privacy considerations built into these systems. Breana shares her personal motivation behind founding Owie AI after witnessing a loved one's complications from undetected health events, highlighting how technology can help prevent similar situations for countless families. As our society grapples with policy decisions that will fundamentally shape eldercare for decades to come, innovations like these represent our best hope for creating dignified, quality care for all. Join us for this thought-provoking conversation about how artificial intelligence might become our most powerful tool in ensuring no one is forgotten or neglected in their vulnerable years. Want to learn more about the challenges facing our long-term care system? Watch our documentary "No Country for Old People," releasing August 1st on Amazon. CONTACT BREANA PATEL OWIE AI Support the show Be a ROAR-ior!! JOIN THE R.O.A.R. MOVEMENT for quality long term care! Visit the No Country For Old People Website for more information. YOU CAN ALSO SUPPORT THE ABSOLUTELY CRUCIAL PROMOTION OF OUR DOCUMENTARY "NO COUNTRY FOR OLD PEOPLE" BY MAKING A TAX DEDUCTIBLE DONATION THROUGH THE NATIONAL CONSUMER VOICE HERE Follow us on Twitter, FB, IG, & TiK Tok 💜 Listen on your favorite platform 💜 If you like what you hear leave us some love. 💜

Essential employee benefits for working caregivers. In this insightful episode, we explore into the critical intersection of caregiving responsibilities and career management. With a staggering 73% of employees juggling work and caregiving, it's essential to explore how workplaces can better support this significant portion of their workforce. We discuss leveraging Employee Resource Groups (ERGs) as valuable tools for both employers and employees. For organizations, ERGs provide crucial insights into the needs of working caregivers, informing the development of relevant employee benefits and fostering a supportive company culture. We explore which employee benefits are most valued by caregivers. Furthermore, we address the challenges faced by individuals who have stepped away from their careers to provide care. We offer practical advice on effectively positioning oneself for re-entry into the workforce, emphasizing how to highlight the valuable skills acquired through caregiving. This episode provides essential guidance for both employers seeking to support their caregiving employees and individuals navigating the complexities of balancing career and care. Our Guest: Zack Demploplous, author Working Caregivers - The Invisible Employees Zack Demopoulos has over 36 years of diverse experience working in the corporate and small business environments. His expertise spans across sales management; executive leadership; human resources; diversity, equity, and inclusion; small business; board leadership; and caregiving. Zack was drafted into a long distance caregiver for his father when he had a stroke and needed help with activities of daily living for six years until he passed away in 2011. During this time Zack traveled back and forth to North Carolina while holding down a full-time high-level leadership role for his organization. Today, Zack does the same for his mother who also lives in North Carolina.

This week, Ari Medrano delivers a powerful testament to the depth and complexity of caregiving. As a Mexican immigrant who came to the United States at age one, Ari's approach to caregiving is deeply rooted in her family's values of service, love, and compassion. Throughout the episode, she shares multiple experiences of caregiving, including caring for her cousin with bone cancer, a homeless woman named Teresa, her brother who was a victim of a violent crime, and her mother during critical health challenges. Her caregiving journey is marked by a remarkable ability to love creatively and find joy even in the most challenging circumstances. Ari's approach goes beyond traditional caregiving, incorporating humor, sensory experiences (such as using specific scents to uplift spirits), and an unwavering commitment to supporting not only the patient but also the healthcare workers around them. Her personal experiences, including her health challenges like heart disease and a brain tumor, have shaped her perspective, allowing her to approach caregiving with empathy, resilience, and a profound understanding of both giving and receiving care. What stands out most about Ari is her philosophy of "givers gain" and her conviction that we can experience both pain and joy simultaneously. Her stories illustrate how caregiving is not just a duty, but a calling that requires creativity, emotional intelligence, and a deep capacity for love. Whether it was bringing Santa Claus to her mother's hospital room, providing comfort to a homeless woman, or supporting her brother through his challenging health journey, Ari embodies the true spirit of compassionate caregiving. About Ari: Ari Medrano is a Mexican immigrant who arrived in the USA as a one-year-old, the middle child in a family of five. Her parents have been married for 58 years. Ari's caregiving journey deepened when she moved from Texas to California to care for her mother and youngest brother, who both became ill simultaneously. She provided home hospice care for her brother in his final weeks, following his brutal injuries from a bank robbery. Concurrently, she cared for her mother in the hospital for six months; her mother is now at home, receiving care from all siblings. As a mother of two sons, Ari also acknowledges their caregiving role during her own extensive health battles, which included multiple tumors, heart disease, a brain tumor, and numerous surgeries. She refers to herself as an "Olympian patient" and serves as a go-to health advocate for her family, friends, and community. She is notably a "1% Medical Miracle" who regained full mobility after being paralyzed by a craniotomy for a brain tumor extraction. Ari's legacy is defined by her philosophy: "Love God, Love People...creatively." Support the show Confessions of a Reluctant Caregiver Sisterhood of Care, LLC Website: www.confessionsofareluctantcaregiver.com Like us on Facebook! Tweet with us on Twitter! Follow us on Instagram! Watch us on Youtube! Pin us on Pinterest! Link us on LinkedIn! Tune in on Whole Care Network Share

Blending aromatherapy and sound bathing into the care of dying patients comes naturally to end of life doula and hospice nurse Carrie Oram. Carrie has witnessed deep, relaxing responses from clients as they experience the vibrations of Tibetan sound bowls. Regardless of diagnosis or disease progression, people who are at the end of their lives become more relaxed during treatments with aromatherapy. The benefits are many - calm, an elevated sense of happiness and wellbeing, comfort, connection with pleasant memories and sensations, even appetite stimulation.    Carrie integrates her doula work into her work as a hospice nurse, being sure to separate responsibilities that are under her nursing license from her doula tasks. You can find Carrie at angelheartholistics.com. Carrie is the compassionate owner and operator of Angel Heart Holistics, where she combines her extensive background in healthcare with her deep passion for holistic healing. As a hospice nurse with years of experience, Carrie has witnessed firsthand the profound impact that emotional and physical well-being have on a person’s overall quality of life.   Connect with Carrie on Instagram (@angelheartholistics) Hospice Navigation Services understands that you need unbiased, expert support to have the best end of life experience possible.  If you have questions about hospice care for yourself or someone you care about, Hospice Navigation Services can help. Whether you want to connect by phone or video, you can book a FREE 30-Minute Hospice Navigation Session, or a more in-depth 60-Minute Navigation Session for $95. If you need to troubleshoot the care you’re already receiving, we’re here to answer your questions. A 60-Minute Navigation Session by video call allows up to 3 family members to get the same expert information at the same time. We believe you deserve to have good hospice care. Book your session with an expert Hospice Navigator at theheartofhospice.com.   Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Social media: Facebook  Twitter  Instagram LinkedIn Email: [email protected] Book podcast host Helen Bauer to speak at your event or conference by sending an email to [email protected].

“An educated and confident family caregiver who knows what to do in their role is really the absolute best medicine for the care receiver.” Dr. Carolyn Clevenger Do you know extensive research specifically focused on dementia caregivers is being conducted? Are you aware of innovative studies designed to equip family caregivers with navigation skills? Now you will, and you’ll be learning about valuable opportunities to strengthen your caregiving journey. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we are continuously learning new ways to support our health and well-being, and that of our care receivers. We recently discovered the groundbreaking dementia caregiver research, the CANDO Study, Dr. Carolyn Clevenger, DNP, RN, GNP-BC, AGPCNP-BC, FAANP, FGSA, FAAN, Professor at the Emory University Nell Hodgson Woodruff School of Nursing is conducting. When most people think about dementia research, they focus on studies involving people living with dementia or pharmaceutical treatments. This crucial area of research focuses on supporting the family caregivers themselves. Dr. Clevenger is a professor and gerontological nurse practitioner who is nationally recognized as an education leader in advanced practice nursing and geriatrics. Carolyn founded, and directs, the comprehensive dementia care model called Integrated Memory Care (IMC), which provides memory and primary care in a single integrated approach for people living with dementia and their care partners. Full Show Notes https://thecaregiversjourney.org/36-learn-to-navigate-support-systems-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Dr. Carolyn Clevenger, a nationally recognized educational leader in advanced practice nursing, geriatrics and gerontology, shares her groundbreaking work on dementia family caregiver education programs that teach new caregivers how to transition into the role and navigate various support systems.For more information about joining this study, visit scholarblogs.emory.edu/CAN-DO/.Savvy Caregiver course: Available face-to-face or online (in-person version includes support group benefits)“Best Programs for Caregivers” website: A collaboration between the Benjamin Rose Institute on Aging and Family Care Alliance featuring only research-proven programs.Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Additional Resources Mentioned Takeaways Tip 1: Understand Different Levels of Care Early Home-Based CareCommunity-Based ProgramsResidential Care Options Key considerations: Each level has different eligibility requirements and payment structuresAvailability varies by state—some follow federal guidelines, others have state regulationsPeople often wait until they desperately need memory care but try to access assisted living instead, creating unnecessary stress Tip 2: Stay Ahead of Financial Challenges Protect your assets while maintaining oversightUnderstand the early warning signsWatch for judgment impairment issues Tip 3: Leverage Legal Support from Elder Law Experts What sets elder law attorneys apartSpecialized dementia expertiseLong-term benefits Tip 4: Take Evidence-Based Classes What makes evidence-based courses effectiveMeasurable outcomes The CAN-DO Study: Training Caregivers as Navigators Dr. Clevenger's current research project, CAN-DO (Caregiver As Navigator Developing Skills Online), trains family caregivers to navigate four critical systems: healthcare, financial, legal, and family systems. Course structure: Six-week online course following three families through different types of dementiaEach day presents real-life scenarios with appropriate responses and preventive measuresVideos from subject matter experts including elder law attorneys, investigators, estate planners, and healthcare providers