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.

LADD https://laddinc.org/

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

LuMind https://lumindidsc.org/down-syndrome-research-in-action

ABC-DS Study https://abc-ds.org/

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

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 Syndrome

https://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: podcast@agingwithdownsyndrome.com

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/documents

NTG: https://www.the-ntg.org/

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

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.pdf

Adult Down Syndrome Center
https://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: podcast@agingwithdownsyndrome.com

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: podcast@agingwithdownsyndrome.com