Aging with Down Syndrome

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 [email protected] in this episode:Down syndrome & Alzheimer’s online support group http://Facebook.com/groups/dsalzDavid Kessler https://grief.com/We want to hear from you! Get in touch at: [email protected]

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/s12912-017-0223-5Mentioned in this episode:EDSD, a tool for dementia screening https://www.the-ntg.org/ntg-edsdVideo that Kristin had made of her brother Matthew https://youtu.be/_PLhTu5nRp4?si=YycJcBPV_LcJR6GCWe want to hear from you! Get in touch at: [email protected]

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=seizuresNTG https://www.the-ntg.org/epilepsy-dementiaMentioned 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: [email protected]

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=seizuresNational Task Group on Intellectual Disabilities and Dementia Practices resources on seizures: https://www.the-ntg.org/epilepsy-dementiaWe want to hear from you! Get in touch at: [email protected]

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.ResourcesManaging Dementia-Related Anxiety in Adults with Down Syndrome https://drive.google.com/file/d/1hjglZqWqViKrJJ5fYSQEA2TxBrzuVAyq/view?usp=sharingNTG https://www.the-ntg.org/family-caregiver-resourcesDo2Learn do2learn.comHair 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.2023.05.5.29We want to hear from you! Get in touch at: [email protected]

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/#resourcesBe Light Care—follow her on socialAdult Down Syndrome Center Resource Library https://adscresources.advocatehealth.com/NDSS https://ndss.org/resourcesDown’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: [email protected]

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: [email protected]

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 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-staffLuMind https://lumindidsc.org/down-syndrome-research-in-actionABC-DS Study https://abc-ds.org/We want to hear from you! Get in touch at: [email protected]

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 Syndromehttps://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: [email protected]

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/documentsNTG: https://www.the-ntg.org/We want to hear from you! Get in touch at: [email protected]

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.pdfAdult Down Syndrome Centerhttps://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: [email protected]

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: [email protected]