Aging with Down Syndrome

Jadene Ransdell, Kristin Dailey, Molly O'Toole
  • 5.0 (30)
  • Education

Join a mother, a sister, and a niece as they share honest and heartfelt conversations about the changing needs of their loved ones aging with Down syndrome. You will hear from leading experts about insights and advances in the field. You will meet professionals who are supporting individuals with Down syndrome through their senior years, and hear first-hand accounts from families who have navigated this caregiving journey. They will talk candidly about the unique challenges and joys found in this aging process, issues related to Alzheimer’s dementia, and give practical tips from lived experience.  Historically speaking, resources on this topic have been limited. Thankfully—as people with Down syndrome are living longer—more information is starting to coalesce. We hope this podcast will be a helpful resource for families and caregivers.

  1. Aug 25

    Our Favorite Things | Small Stuff Edition

    Molly and Kristin talk about the little items that made the biggest difference in their day-to-day caregiving. Mentioned in this episode: Squirt bottles https://a.co/d/034vIlPq (Molly’s exact squirt bottles aren’t available, but these are the same type) Continuous spray bottle https://a.co/d/07X0umdM (Molly’s exact spray bottle for shampooing isn’t available, but any continuous spray bottle will work) Shower and toilet grab bars https://a.co/d/07ejlZ5t No rinse shampoo cap  https://a.co/d/0ha9K7Pp Hand held shower with long hose  https://a.co/d/02BtTj8c No rinse bathing wipes https://a.co/d/07wU1gy2 Over the bed table https://a.co/d/041tozdk Large and extra large soft, washable pads (chucks)  39x55 https://a.co/d/0il6CT9A 36x60 https://a.co/d/052EDWtE 34x36 and 34x52 Amazon.com Knee pillow https://a.co/d/0a8eckVM; Pillow for in between the ankles https://a.co/d/00AJi0oA "Magic skincare potion" https://a.co/d/01h0UnKu; https://a.co/d/07yALMB8; Amazon.com : Dynarex Vitamins A & D Ointment, Ointment with Vitamin A and Vitamin D Skin Protectant, for Diaper Rash and Discomfort, White, 4 - 15 oz Jars of Dynarex Vitamins A & D Ointment : Health & Household Fidget blanket custom made from Etsy https://www.etsy.com/shop/TotallySewn Stackable foot stool https://a.co/d/08ks6AUI Foam yoga blocks https://a.co/d/086eIqH0 Bean bag chair https://a.co/d/06wWq7Sv Tubi https://a.co/d/0iI2XPVC TV antenna https://a.co/d/0bi1qCCX (Molly’s exact antenna isn’t available) Wireless retro telephone handset https://a.co/d/0iI2XPVC We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    Our Favorite Things | Small Stuff Edition

  2. Aug 11

    Brain Donation | One Woman's Gift to the Next Generation with Down Syndrome

    In this heartfelt episode, Molly shares her family’s experience with brain donation, and its incredible importance for Alzheimer's and Down syndrome research. She talks about why they decided to do it, how it worked, and what surprised her the most. Her experience with her Aunt Cathy illustrates the personal journey and questions many of our families face when considering brain donation. This intimate and honest conversation shines a light on not only the practical, but the emotional aspects of making this decision, and provides actionable insights for families who want to learn more. Links: About the Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS) https://abc-ds.org/participants/ ABC-DS brain donation one-pager https://drive.google.com/file/d/1ih7NkHDtzRQu6g9y8FjpCoctAEK5Jo25/view?usp=sharing ABC-DS brain donation pamphlet https://drive.google.com/file/d/1QHQLYF7d2qwVnkoMr4o1WUg5WpyO13Vj/view?usp=sharing We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    Brain Donation | One Woman's Gift to the Next Generation with Down Syndrome

  3. Jul 28

    What If a Caregiver Has an Emergency?

    What happens if a caregiver has a medical emergency while caregiving? And what if the person being cared for doesn’t understand, or can’t call for help? That was the scary situation Jadene’s son was in recently.  Jadene tells us what happened, and we talk through the emotional and practical implications of the event, as well as brainstorm possible solutions for her moving forward. That frightening, real-life incident opened the door to a wider discussion about the realities of supporting a vulnerable loved one, the challenges of solo caregiving, and the importance of having emergency plans in place before a crisis occurs. Links: National Down Syndrome Society’s Caregiver Toolkit https://ndss.org/media/2565 Smart 911 https://www.smart911.com/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    What If a Caregiver Has an Emergency?

  4. Jul 14

    Kristin’s Top Tips

    Kristin learned some valuable lessons as her brother Matthew progressed through Alzheimer’s disease. Here, she shares her advice for caregivers who are on the dementia journey.  Takeaways include: Take care of yourself!Trust your gut and trust your love Acceptance is key to better caregiving, because it allows you to meet them where they areRecognize the grief, but allow yourself to let go of what you can’t controlStay present—don’t obsess over a timeline, or how much time you have left The power of touchWhat matters: are they safe, are they clean, are they comfortable?The disease is unpredictable, so be willing to pivotCaregiving can be a giftWe want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    Kristin’s Top Tips

  5. Jun 30

    CARE Down Syndrome | A Conversation with Kandi Pickard and Brian Chicoine

    Have you ever wished you lived closer to a specialized Down syndrome medical clinic? Have you had to rely on healthcare providers who—even if they are well-meaning—lack the expertise or experience to provide knowledgable care for your loved one? Well, we’ve got good news for you, and it’s called CARE Down Syndrome. This new initiative from the National Down Syndrome Society is a free online education and resource hub designed to equip any healthcare professional with the knowledge, tools, and confidence needed to deliver exceptional care to adults with Down syndrome. And this is so needed! Most of us rely on primary care professionals who often have limited experience with Down syndrome and may have received minimal training in medical school on how to provide appropriate care. CARE Down Syndrome enlisted more than 40 experts, including Brian Chicoine, MD, of Advocate Medical Group Adult Down Syndrome Center, to extend their expertise to primary care professionals worldwide. Most importantly, CARE Down Syndrome supports better health outcomes for adults with Down syndrome regardless of their proximity to a specialized healthcare provider. So, if you have a doctor who wants to learn more, please share this exciting new resource with them. Most doctors and nurses have to take continuing education courses anyway. This hub is not only free, but it makes getting those continuing education credits easy. It’s flexible and self-paced. They can start and stop courses at leisure, they can get credit for reading articles, and they have access to an in-depth resource library of relevant subjects all in one place. And did we mention, it’s free?  So spread the word! Because every adult with Down syndrome deserves quality healthcare, regardless of where they live. Links: CARE Down Syndrome https://careds.org/ Project Echo https://www.dsmig-usa.org/project-echo Down Syndrome Medical Interest Group (DSMIG) https://www.dsmig-usa.org/ About Kandi Pickard, CEO of National Down syndrome Society https://ndss.org/meet-our-staff About Dr. Brian Chicoine, Medical Director of the Adult Down Syndrome Center (Advocate Medical Group) https://adultdownsyndrome.org/team-member/brian-chicoine-md/  We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    CARE Down Syndrome | A Conversation with Kandi Pickard and Brian Chicoine

  6. Jun 16

    Our Early Signs of Dementia

    Jadene, Kristin, and Molly look back and share what they recall were the earliest signs of dementia in their loved ones. They discuss which symptoms were the same and which were different between the three of them, the importance of documentation, and personal insights into when they each knew the diagnosis was real. Mentioned in this episode: Early Detection Screen for Dementia (screening tool) https://www.the-ntg.org/ntg-edsd/documents  Down Syndrome & Alzheimer’s online support group http://Facebook.com/groups/dsalz We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    Our Early Signs of Dementia

  7. Jun 2

    Succession Planning with John Nadworny

    John Nadworny—a retired Certified Financial Planner with over 30 years of experience working with families of individuals with special needs—reveals how true succession planning goes beyond financial security and legal documents. Succession planning takes into consideration the various things that are required for your loved one’s life to continue with fulfillment and joy after you’re gone. John shares practical strategies including a letter of intent, building a trusted team, and fostering ongoing conversations that future-proof your loved one’s care. He also emphasizes that planning isn’t a one-and-done task, it’s a continuous lifelong process that honors your loved one’s happiness as well as security. Discover how to start today, adapt as life unfolds, and ensure your loved one continues to thrive—no matter what tomorrow brings. In this episode we talk about the emotional, practical, and relational layers of planning:  - Thinking through roles and responsibilities of who will take over when a parent is no longer here, or unable to continue being the caregiver.  - The importance of emotional acceptance when planning, and the difficult feelings that often come along with it.  - Selecting the right guardians or trustees—even if you’re starting late, or are unsure who in your circle to choose. - Starting the difficult conversations and creating an ongoing process. - Establishing a vision for your loved one's future so they can continue doing the things they love. John Nadworny is the co-author of The Special Needs Planning Guide (Brookes Publishing, 2007 and 2022), and was a Certified Financial planner and Wealth Advisor for decades. He’s a father of three—James, Alex, and Ben. James is 35, has Down syndrome, and lives with John and his wife Susan. His other two children, Alex and Ben, worked with him as financial advisors, until 2023 when John retired. Their family company was acquired by Sequoia Financial Group because of Sequoia's commitment to working with families of individuals with special needs. Alex and Ben continued on with Sequoia so they could focus on planning with families rather than managing a company. Links: Future Planning: A Roadmap: https://drive.google.com/file/d/1r4ol8DYIXZMJbedITh5boRl2-Dufihjm/view?usp=sharing Sequoia’s special needs planning resources https://specialneedsplanning.com/resources/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    Succession Planning with John Nadworny

  8. May 19

    Swallowing Issues & Other Challenges

    In this episode, we talk to Jadene about Matt’s recent onset of swallowing issues and other challenges he’s facing in this new phase of the Alzheimer’s journey. Our conversation touches on adapting routines, the myriad of therapy options available, modifying interventions, the importance of compassionate and tailored approaches, and navigating the emotional aspects of these changes. We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    Swallowing Issues & Other Challenges
See All (20)

Ratings & Reviews

5
out of 5
30 Ratings

About

Join a mother, a sister, and a niece as they share honest and heartfelt conversations about the changing needs of their loved ones aging with Down syndrome. You will hear from leading experts about insights and advances in the field. You will meet professionals who are supporting individuals with Down syndrome through their senior years, and hear first-hand accounts from families who have navigated this caregiving journey. They will talk candidly about the unique challenges and joys found in this aging process, issues related to Alzheimer’s dementia, and give practical tips from lived experience.  Historically speaking, resources on this topic have been limited. Thankfully—as people with Down syndrome are living longer—more information is starting to coalesce. We hope this podcast will be a helpful resource for families and caregivers.

Information

  • Creator
    Jadene Ransdell, Kristin Dailey, Molly O'Toole
  • Years Active
    2025 - 2026
  • Episodes
    20
  • Rating
    Clean
  • Copyright
    © 2026 Aging with Down Syndrome
  • Show Website
    Aging with Down Syndrome

You Might Also Like