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 are
• Recognize the grief, but allow yourself to let go of what you can’t control
• Stay present—don’t obsess over a timeline, or how much time you have left
• The power of touch
• What matters: are they safe, are they clean, are they comfortable?
• The disease is unpredictable, so be willing to pivot
• Caregiving can be a gift

We want to hear from you! Get in touch at: podcast@agingwithdownsyndrome.com

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