Aging with Down Syndrome

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 educat...

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) h...

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 s...

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 hea...

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 s...

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 pers...

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-d...

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 synd...

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, Ph...

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 declines Being present, and being in the moment, to help you find peace in...

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

The leaders of National Down Syndrome Society 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 all...

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...

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 iss...

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...

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 hea...