Advertise on podcast: Aging with Down Syndrome

Dr. Hannah Graham shares insights into healthcare and health concerns for women with Down syndrome as they age. Pulling from years of experience and data treating patients at the Adult Down Syndrome Center, she tells us what we need to be aware of as our female loved ones get older. Because there is still a significant gap in research on women with Down syndrome, Dr. Graham's knowledge and expertise in this area is invaluable. Dr. Hannah Graham is a physician at the Adult Down Syndrome Center in Park Ridge, IL. Dr. Graham is also a mom of three, including a daughter with Down syndrome. Learn more about her here.  Resources: Women’s Health and Down Syndrome https://ndss.org/resources/womens-health-and-down-syndrome Women’s Health Guide https://ndss.org/resources/download-womens-health-guide Enhancing Women’s Health: Key Insights from the Primary Care Provider’s Guide to Women’s Health and Down Syndrome https://adultdownsyndrome.org/resources/enhancing-womens-health-webinar-10-8-2024/ Menopause in Women with Down Syndrome https://adultdownsyndrome.org/resources/menopause/ Menopause Visuals https://adultdownsyndrome.org/resources/menopause-visuals/ Hormone Replacement Therapy for Menopause Treatment in Women with Down Syndrome https://adultdownsyndrome.org/resources/hrt-menopause/ Effect of Menopause on Cognition in Women with Down Syndrome https://adultdownsyndrome.org/resources/menopause-cognition/ Breast Cancer Screening for Women with Down Syndrome https://adultdownsyndrome.org/resources/breast-cancer-screening/ Osteoporosis and Osteopenia https://adultdownsyndrome.org/resources/low-bone-density/ Urinary Tract Infections https://adultdownsyndrome.org/resources/utis/ Colon Cancer Screening for People with Down Syndrome https://adultdownsyndrome.org/resources/colon-cancer-screening/ Care Down Syndrome (education for primary care providers) https://careds.org/ We want to hear from you! Get in touch at: [email protected]

Kristin and Molly share insights from their own experiences navigating ER visits and hospital stays for older loved ones with special needs—emphasizing preparation, advocacy, and effective communication to ensure the best care possible. We talk about practical tips like Health Passports, go-bags, knowing health goals, and the most critical time of day to be present in the hospital. Links: https://adultdownsyndrome.org/resources/health-passports/ (Jadene combined several of these forms to make a customized Health Passport for her son) https://adultdownsyndrome.org/resources/prepare-for-hospital-stays/ iddtoolkit.org We want to hear from you! Get in touch at: [email protected]

When the work of caregiving for your loved one becomes unsustainable, stepping back is not abandonment but a thoughtful act of love, planning, and protection. Jadene shares the raw, complicated emotions of handing more responsibility to her son (Matt’s brother), while she’s still here to guide the transition—and the result is a conversation every caregiver needs to hear. Jadene opens up about the guilt, grief, and relief that comes with a decision like this. With Kristin and Molly, she unpacks what it means to shift roles, why the timing matters so much, and how making plans before a crisis can protect everyone involved. The conversation gets real about aging, health scares, family dynamics, and the emotional toll of realizing you can no longer do everything yourself. You’ll hear honest insights on:     • Why “passing the baton” before a crisis is a gift to your whole family     • The difference between caregiver responsibility and motherly love     • How others can step in thoughtfully when the original plan is no longer sustainable     • Why guilt shows up even when you know you’re making the right choice     • The urgent need for more community support for aging families in the disability world We want to hear from you! Get in touch at: [email protected]

Sometimes the most useful caregiving tools come from places you’d never think to shop. Molly and Kristin share more of the practical fixes and smaller purchases that made a real difference when caring for their loved ones, from safer toileting and easier feeding, to temperature control, skin care, and everyday comfort. If you’re navigating caregiving right now, or you want to be better prepared for when you are, this two-part episode is packed with real-world ideas for you.  Mentioned in this episode: Roho toilet cushion (be sure to get the cover, available separately) https://tinyurl.com/4xex5pz3  Egg crate cushion https://a.co/d/0281qXiO Skin brush https://a.co/d/062Nm1rm Squigz suction toys https://a.co/d/06ThJYUS Pill crusher https://a.co/d/04MiMrTL Designer Wellness protein smoothie pouch https://designerwellness.com/collections/protein-smoothies Syringes https://a.co/d/0hAqZC0w Nectars https://a.co/d/053bud01 Seatbelt adjuster https://a.co/d/00GfQ8EW  Bumpers (Molly used two: industrial bumper, with a softer baby bumper over it): industrial https://www.uline.com/BL_798/Foam-Bumper-Guards, baby bumper https://a.co/d/0aBugDRk Mouth swabs https://a.co/d/06s3bOSw Curved toothbrush https://colliscurve.com/  Mattress protector: zip-off https://tinyurl.com/fykhr6dn, cooling https://tinyurl.com/36k5jk9a  Neck fan https://a.co/d/0bNvDqyE  PandaEar reusable silicone feeder pouch https://a.co/d/02x077AW Immersion blender (Molly’s was Cuisinart, Kristin’s was Vitamix—but it doesn’t have to be fancy or have accessories, any brand will do) https://a.co/d/0aDv1aiE We want to hear from you! Get in touch at: [email protected]

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: [email protected]

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: [email protected]

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: [email protected]

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: [email protected]

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: [email protected]

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: [email protected]

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: [email protected]

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: [email protected]

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] 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: [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/s12912-017-0223-5 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: [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=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: [email protected]