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: podcast@agingwithdownsyndrome.com

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: podcast@agingwithdownsyndrome.com

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: podcast@agingwithdownsyndrome.com

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

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

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

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

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