Aging with Down Syndrome

Jadene Ransdell, Kristin Dailey, Molly O'Toole
  • 5.0 (27)
  • 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.

Episodes

  1. Aging and Anxiety

    3D AGO

    Aging and Anxiety

    Anxiety can be a challenging issue for families with loved ones who have Down syndrome, especially as they age. We talk with Dr. Ruth Brown-Ennis, a respected authority in mental health for those with intellectual and developmental disabilities, about potential causes of anxiety and strategies for caregivers and families to better support their loved ones experiencing anxiety. Ruth Brown-Ennis, PhD, is a Licensed Clinical Psychologist and Assistant Professor at Virginia Commonwealth University. She has worked closely with families and self-advocates with Down syndrome for over 10 years to better understand mental health needs and improve care for people with intellectual and developmental disabilities. Her research focuses on helping individuals with Down syndrome who are dealing with stress, anxiety, depression, or trauma. Her goal is to make mental health care more compassionate, accessible, and responsive to the real-life experiences of individuals with Down syndrome and those who love them. Resources Managing Dementia-Related Anxiety in Adults with Down Syndrome https://drive.google.com/file/d/1hjglZqWqViKrJJ5fYSQEA2TxBrzuVAyq/view?usp=sharing NTG https://www.the-ntg.org/family-caregiver-resources Do2Learn do2learn.com Hair pulling: - Trichotillomania Fact Sheet https://www.abct.org/fact-sheets/trichotillomania/ - Adult Down Syndrome Center, Trichotillomania https://adscresources.advocatehealth.com/resources/trichotillomania/ - Memantine and Trichotillomania https://psychiatryonline.org/doi/full/10.1176/appi.pn.2023.05.5.29 We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    52 min
  2. Molly’s Top Tips—What I Would Tell a Friend

    FEB 24

    Molly’s Top Tips—What I Would Tell a Friend

    On this episode, Molly shares her personal experience with her Aunt Cathy, and advice about caring for a loved one with Alzheimer’s.  She emphasizes the importance of: Meeting them where they are and getting rid of expectations to improve quality of life Decreasing stressors, because stress can be detrimental as cognition declinesBeing present, and being in the moment, to help you find peace in the midst of caregivingJoining them in activities for better engagement and outcomesJoining them in their reality to reduce isolation (and to have fun!)Finding the joy, because this journey can bring beautiful joys that you wouldn’t have known or experienced otherwiseRecognizing that caregiving can create deep and meaningful bondsKnowing that you are not alone in this journeyResources that Molly found helpful: Teepa Snow https://teepasnow.com/resources/for-families-and-friends/#resources Be Light Care—follow her on social Adult Down Syndrome Center Resource Library https://adscresources.advocatehealth.com/ NDSS https://ndss.org/resources Down’s Syndrome Scotland https://dsscotland.org.uk/resources/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    16 min

  3. FEB 10

    "Home is a Place of Love"

    As Jadene wrestles with planning for Matt’s future with Alzheimer’s, where he should live is top of mind. Molly and Kristin talk about where their loved ones lived, and how the onset of dementia changed those plans. LADD https://laddinc.org/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    31 min
  4. What the NDSS & LuMind Merger Means for Alzheimer’s Disease Research

    JAN 27

    What the NDSS & LuMind Merger Means for Alzheimer’s Disease Research

    The leaders of NDSS and LuMind discuss their recent merger and its implications for the Down syndrome community, particularly in relation to Alzheimer's disease research. About NDSS and Lumind: The merger combines NDSS’ deep advocacy roots, community leadership, resources, and policy influence with LuMind’s expertise in accelerating research and health equity. It allows NDSS to add research as a key pillar of their work, and increase those resources to families. Moving forward, NDSS now has the expertise and structure to accelerate treatment options and innovation for the entire Down syndrome community, especially in tackling our seniors' greatest current health challenge: Alzheimer’s disease. The vision for the newly combined organization is to advance a more equitable future where every person with Down syndrome has the opportunities and supports they need to thrive throughout their lifetime. More information: https://ndss.org/lumind-joins-ndss More about Kandi Pickard, CEO of NDSS and Hampus Hillerstrom, President of NDSS (formerly CEO of LuMind): https://ndss.org/meet-our-staff LuMind https://lumindidsc.org/down-syndrome-research-in-action ABC-DS Study https://abc-ds.org/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    27 min
  5. Jadene’s Advocacy Journey: How Her Son’s Undiagnosed Autism Shaped Her Lifelong Advocacy

    JAN 13

    Jadene’s Advocacy Journey: How Her Son’s Undiagnosed Autism Shaped Her Lifelong Advocacy

    Jadene talks with Kristin and Molly about events in Matt’s life that led her to be the advocate she is today. This episode dives into her experiences as a mother navigating the complexities of raising a child with multiple disabilities, highlighting the resilience of mothers and the profound love that drives them to seek better lives for their children. About Jadene: Jadene Ransdell has spent the past 51 years advocating for her son Matt and creating support systems for other caregivers along the way. As a young mother she worked to increase awareness of the need for community support for military families in Germany and helped establish Parent to Parent groups in Florida. When Matt faced an Alzheimer’s diagnosis, she began online Down syndrome and Alzheimer’s support groups. Later, she created the National Down Syndrome Society’s Adult Summit. Jadene is also the author of Unwrapping the Gifts of Disability: A Mother's Reflections on Raising a Son with Down Syndrome and is currently writing her second book which is about Down syndrome and Alzheimer’s. Jadene is the recipient of many awards including the 2017 Spirit of the NTG, and the 2019 NDSS Stephen Beck Jr. Champion of Change. Unwrapping the Gifts of Disability: A Mother's Reflections on Raising a Son with Down Syndrome https://www.amazon.com/Unwrapping-Gifts-Disability-Reflections-Syndrome/dp/1922828955   Jadene’s blog https://www.agingwithdownsyndrome.com/blog   We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    30 min

  6. 12/30/2025

    A Tool to Help Screen for Dementia

    Today we are talking about the Early Detection and Screen for Dementia (EDSD)—which is a checklist to help families and caregivers track changes in their loved one's behavior, skills, and abilities as they get older. Age-related cognitive changes can happen slowly over time. The EDSD offers an easy way to monitor and document these changes, so that families and staff are able to recognize issues sooner, adapt supports accordingly, have informed discussions with medical providers, and advocate better for their loved ones. But you can use the EDSD even before you notice changes, to establish a baseline of what healthy functioning looks like for your loved one. For that reason, the EDSD is recommended for folks 35 and up.  The EDSD was created by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), and it was specifically designed for people with developmental disabilities.  Dr. Lucille Esralew is a licensed psychologist and a Certified Clinical Neuropsychologist specializing in individuals with developmental disabilities, and people with dementia. Among her many roles, she serves on the steering committee of the NTG and she spearheaded the development of the EDSD.  You can learn more about the EDSD here: https://www.the-ntg.org/ntg-edsd/documents NTG: https://www.the-ntg.org/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    23 min

  7. 12/16/2025

    Common Health Issues Over 40: A Conversation With Dr. Chicoine

    Dr. Brian Chicoine talks about some common health concerns facing people with Down syndrome as they get older—including thyroid issues, sleep apnea, and Alzheimer’s dementia. Dr. Chicoine is the co-founder and Medical Director of the Adult Down Syndrome Center in Park Ridge, IL. He has provided medical care for adults with developmental disabilities for over 35 years and has presented and written extensively on caring for adults with Down syndrome. These days Dr. Chicoine works full time on research and education projects to share his knowledge with the community, and help improve health outcomes for all people with Down syndrome. Down’s Syndrome Scotland booklet about living with dementia: https://adscresources.advocatehealth.com/assets/1/13/Living_with_Dementia.pdf Adult Down Syndrome Center https://adscresources.advocatehealth.com/about/ Adult Down Syndrome Center Resource Library https://adscresources.advocatehealth.com/ NTG's EDSD (screening tool): https://www.the-ntg.org/ntg-edsd   CARE Down Syndrome: https://careds.org/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    48 min

  8. 12/02/2025

    Welcome to Aging with Down Syndrome

    Join a mother, a sister, and a niece as they share honest and heartfelt conversations about the changing needs of their loved ones over 40 aging with Down syndrome. In today’s episode, Jadene, Molly and Kristin will give some background of their lived experience, and what inspired them to start this podcast. We hope this podcast will be helpful resource for families and caregivers.  We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    15 min
  • 8 Episodes

Ratings & Reviews

5
out of 5
27 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
    8
  • Rating
    Clean
  • Copyright
    © 2026 Aging with Down Syndrome
  • Show Website
    Aging with Down Syndrome

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