Aging with Down Syndrome

Jadene Ransdell, Kristin Dailey, Molly O'Toole
  • 5.0 (29)
  • 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. Swallowing Issues & Other Challenges

    6D AGO

    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

    46 min
  2. Navigating Grief

    MAY 5

    Navigating Grief

    Sometimes grief shows up in the most unexpected ways, long before our loved ones take their last breath. If you're caring for someone with a terminal diagnosis (like Alzheimer’s), or navigating loss, this episode offers insights into the many faces of grief you may have not known existed. Brooke Heinrich—a Certified Grief Educator and former hospice volunteer, whose beloved sister with Down syndrome passed away due to Alzheimer’s—shares her deeply personal journey. She reveals how her grief evolved into a lifelong process of finding meaning, healing, and hope. Brooke’s compelling story tackles the unspoken realities of caring for loved ones with complex needs and the types of grief that come with witnessing their decline. You'll discover how grief isn’t linear, and why trying to "move on" is a myth. We talk about the stages of grief and practical tools for staying present amidst pain, and honoring your loved one in small yet meaningful ways. Brooke emphasizes that grief is a lifelong companion, not an end state, and offers advice for those feeling stuck or overwhelmed. This episode is essential listening for caregivers and loved ones facing tough diagnoses, or already in the depth of love and loss. So whether you're currently in the midst of mourning or preparing for what lies ahead, Brooke’s wisdom will resonate. Join us for this courageous conversation about grief in all its forms, because understanding it can help you start to heal and connect.  About Brooke Heinrich: After Brooke’s precious older sister with Down syndrome passed away at 55, she was sent on a painful, confusing, and unwelcome journey of grief. Living without Arron, her Honey, was heartbreaking. In an effort to process her grief while honoring her sister, Brooke enrolled in a Grief Educator Program led by renowned grief expert David Kessler. Today, as a Certified Grief Educator, Brooke supports others walking through grief by offering peer-to-peer support and facilitating grief support groups to those experiencing the loss of a loved one with Down syndrome and Alzheimer’s disease, or the loss of a sibling with disabilities. Brooke understands how hard it is to navigate grief and the days of living with a grieving heart. Helping others has become a meaningful and important part of her own healing journey. Brooke can be reached at brooke.griefandhoney@gmail.com Mentioned in this episode: Down syndrome & Alzheimer’s online support group http://Facebook.com/groups/dsalz David Kessler https://grief.com/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    47 min
  3. Life Story | A Simple Tool for Connection

    APR 21

    Life Story | A Simple Tool for Connection

    Unlock the power of telling a loved one's life story to enrich their care, preserve precious memories, and foster deeper connections. Hear firsthand from Jadene and Kristin, who share how they’ve crafted photo albums, memory books, and videos that became invaluable tools for both the family and the caregivers. Discover how life stories not only serve as a bridge for staff to understand a person’s history and preferences, but can also be an important source of comfort and emotional support for the individual. Creating a life story celebrates a person’s unique history and journey. It paints a vivid picture of their life that not only helps them feel good about themselves, but enhances person-centered care from staff. It provides an opportunity to deepen understanding, reduce frustration, and honor the individuality of loved ones as they age. Resources about creating life stories: Adult Down Syndrome Center Creating an Orientation Book https://adscresources.advocatehealth.com/resources/orientation-book-for-people-with-alzheimers-disease/ NHS Life Story Work: What and How https://leedscommunityhealthcare.nhs.uk/our-services-a-z/adults-speech-and-language-therapy-2/communication-in-dementia/life-story-work/ St. John’s Using Life Stories https://dementia.stjohnsliving.org/caregive_resources/using-life-stories-in-at-home-dementia-care/ BMC Nursing The use of life stories and its influence on persons with dementia, their relatives and staff https://link.springer.com/article/10.1186/s12912-017-0223-5 Mentioned in this episode: EDSD, a tool for dementia screening https://www.the-ntg.org/ntg-edsd Video that Kristin had made of her brother Matthew https://youtu.be/_PLhTu5nRp4?si=YycJcBPV_LcJR6GC We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    35 min
  4. Seizures with Dr. Seth Keller | Part 2

    APR 7

    Seizures with Dr. Seth Keller | Part 2

    In this second episode of our two-part series, we continue our discussion with Dr. Seth Keller, a seasoned neurologist, about seizures and aging with Down syndrome. We delve into myoclonic seizures, first aid for seizures, medications, and more. Resources on seizures: Adult Down Syndrome Center https://adscresources.advocatehealth.com/search/?keyword=seizures NTG https://www.the-ntg.org/epilepsy-dementia Mentioned on the podcast: The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) is a non-profit organization focused on advocating for the needs of aging adults with intellectual and developmental disabilities who are at risk of or who have been affected by Alzheimer's disease and other forms of dementia. https://www.the-ntg.org/ The American Academy of Developmental Medicine & Dentistry (AADMD) is a non-profit, membership organization of interdisciplinary health professionals—including primary care physicians, medical specialists, dentists, nurses and other clinicians—committed to improving the quality of healthcare for people with intellectual/developmental disabilities. https://www.aadmd.org/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    54 min
  5. Seizures with Dr. Seth Keller | Part 1

    MAR 24

    Seizures with Dr. Seth Keller | Part 1

    In this two-part episode, we delve into the complex world of seizures, particularly in individuals with Down syndrome. With the expertise of Dr. Seth Keller, a seasoned neurologist, we explore the prevalence of seizures in our loved ones, the intricacies of diagnosis, and the importance of tailored care. Dr. Keller addresses the pressing question of seizure prevalence in individuals with Down syndrome. He explains that the neurodevelopmental changes associated with Down syndrome increase the likelihood of seizures throughout a lifetime. This higher risk exists from infancy and continues into older adulthood with changes that occur in the aging brain. The onset of dementia, in particular, is when myoclonic seizures become prevalent. In part one, Dr. Keller gives an overview of seizures, including types of seizures and possible causes.  Coming up in part two, we will delve into first aid for seizures, medications, and talk more about myoclonics. Adult Down Syndrome Center resources on seizures: https://adscresources.advocatehealth.com/search/?keyword=seizures National Task Group on Intellectual Disabilities and Dementia Practices resources on seizures: https://www.the-ntg.org/epilepsy-dementia We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    41 min
  6. Aging and Anxiety

    MAR 10

    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
  7. Molly’s Top Tips

    FEB 24

    Molly’s Top Tips

    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 (especially the "Let's Talk About" booklet series) https://dsscotland.org.uk/resources/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    16 min
  8. "Home is a Place of Love"

    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. Mentioned in this episode: LADD https://laddinc.org/ We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

    31 min
See All (13)

Ratings & Reviews

5
out of 5
29 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
    13
  • Rating
    Clean
  • Copyright
    © 2026 Aging with Down Syndrome
  • Show Website
    Aging with Down Syndrome

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