Aging Matters has been renamed to Xcell for Adults with Down Syndrome (ages 18+)
Xcell is a program for adults with Down syndrome (ages 18+) and their families/caregivers. Aging really does matter and the quality of life for our aging population should be the BEST:
B – Better Socialization
E – Exercise and Healthy Eating Awareness
S – Self Expression through Music and Art
T – Time for FUN with Peers
Each Xcell program is specifically tailored to helping individuals and families navigate each stage of adulthood – from high school transition to old age. Programs are dementia-capable and focus on providing individuals with inclusive community opportunities and experiences that enhance their quality of life and lead to self-fulfilled adulthoods. Caregivers can come together to network and connect, and learn more about each stage of the aging process through our caregiver support programs and workshops.
Xcell for Adults with Down syndrome program named in loving memory
Excell Henry Gauthreaux
June 20, 1967 -Oct 8, 2019 (age 52)
DSNetwork’s Aging Matters program has been renamed – Xcell for Adults with Down syndrome — in loving memory of Excell Henry Gauthreaux who was born in 1967 with Down syndrome. He won the hearts of everyone he met because of his award-winning SMILE. Excell and his mother Frances were the inspiration behind DSNetwork’s Aging Matters program. Frances continues to pave the way for other parents who have an adult with Down syndrome by sharing the vast knowledge learned while caring for Excell. Excell’s family – his mom, dad and sister – cared for him and supported each other through the challenges they faced, especially after he was diagnosed with Alzheimer’s disease. DSNetwork is proud to further the vision bestowed upon us from Excell’s family by offering the Xcell program for adults with Down syndrome.
Transportation
EACH MONTHLY Aging Matters activity includes FREE TRANSPORTATION and RESPITE CARE.
Transportation and respite care are available to participants with Down syndrome and their families at no cost to you! DSNetwork can assist you with travel arrangements by personally picking up/dropping off your loved one at one of three convenient valley-wide locations and taking them to the scheduled activity. Respite care is provided by Absolute HCBS and trained DSNetwork volunteers.
Learn more about our free transportation and respite service here.
Of course, parents and caregivers are always welcome to transport their loved ones and stay with them throughout the event.
Resources & Local Research
ASU’s Adaptive Exercise Program (ages 14+)
This program is run through ASU School of Health Solutions
Director – Adaptive Exercise Program at ASU: Simon D. Holzapfel, PhD, ACSM EP-C CIFT, Clinical Assistant Professor, Exercise Science & Health Promotion, Degree Coordinator – Clinical Exercise Science
Click here to REGISTER for fall semester
Location: Lincoln Family Downtown YMCA | 350 N 1st Ave, Phoenix 85003
When: FALL 2021 CLASS IS FULL
The following 4 time slots available for workouts :
Tuesdays: 4 – 5:30 pm or 5:30 – 7 pm
Thursdays: 4 – 5:30 pm or 5:30 – 7 pm
Here is how the program will look this fall:
- In addition to the in-person workouts, participants will receive workout videos to do at home or we live remote workout sessions via Zoom.
- Face masks must be worn by everyone at all times, even during exercise. Face masks must also be worn by parents, family members, or caregivers while inside the YMCA or SDFC building.
- Hugs and handshakes will be HIGHLY DISCOURAGED. Limited physical contact as much as possible.
- Your loved one will be paired with one or two ASU student trainers as usual to form a little ‘team.’
- Physical distancing within the team will not be possible but teams will be asked to stay 6 feet away from any and all other teams or individuals while in the facility.
- All equipment will be sanitized with EPA-approved disinfectant after single use.
- Gloves will not be required but frequent hand sanitizing or washing will be enforced.
- Exercise intensities will be limited to light and moderate intensities and stay away from vigorous intensities. There are a few organizations/agencies (e.g., World Health Organizations) which do not recommend wearing a face mask during vigorous activities. Because ASU is requiring everyone to wear a face mask indoors, including the fitness centers, no vigorous exercise intensities will be offered this fall.
- Regular monitoring of oxyhemoglobin saturation before, during, and after the workout to ensure it stays above 90%. This is done do due to the small chance of mask wearing leading to hypoxia. Anything below 90% is typically considered clinically concerning and exercise we would be stopped and monitored for any signs of hypoxia. Oxyhemoglobin saturation is measured via pulse oximetry, which is non-invasive and only takes a few seconds. This is how it works: https://www.youtube.com/watch?v=irVEYvEIb6o
- Additionally, I am certified in Basic Life Support and Advanced Cardiac Life Support and will always be on site.
DSNetwork’s Xcell for Adults families are invited to participate in ASU’s Adaptive Exercise Program. The workouts consist of evidence-based cardio, strength, and flexibility training in order to improve the health-related fitness of adults with Down syndrome. ASU undergraduate students, under the supervision of Dr. Holzapfel (aka. Simon), will be working on a 1:1 or 1:2 ratio of students to adults with Down syndrome to guide them through the exercises and ensure safety, to provide motivation and social interaction, and to learn from our wonderful adults with Down syndrome. Aspects of fitness will be assessed before and after the semester-long program in order to track progress.
Intervention Development for Caregivers of People with DS/IDD and ADRD
Arizona State University | College of Nursing and Health Innovations
Dr. David Coon and his team are currently recruiting family members, friends, and professionals to participate in a series of focus groups for caregivers of aging adults with Down syndrome or other developmental disabilities who also have/are experiencing memory loss or memory changes. Qualified study participants will be asked to provide their viewpoints on caring for people with DS/IDD who have developed memory changes/memory loss as they age and be compensated for their participation.
For more information please contact:
Philip Carll, MSW | Research Consultant | (602) 496-1239 | PCarll2@cox.net
Alzheimer’s Disease & Down Syndrome
The risk of Alzheimer’s disease in adults with Down syndrome can stir deep feelings of fear and anxiety for family, friends, and caregivers who are otherwise trying to focus on supporting and celebrating a healthy and fulfilling adult life for an individual that they love. Education is one way to reclaim some power over a situation where it is impossible to have total control. This booklet was written to help empower families and caregivers with knowledge about the connection between Down syndrome and Alzheimer’s disease, suggestions about how to carefully and thoughtfully evaluate changes that may be observed with aging, and guidance about how to adapt and thrive within an ever-changing caregiving role when a diagnosis is made.
Click here to download the Caregiver’s Guide
Aging & Down Syndrome
Adults with Down syndrome, along with their families and caregivers, need accurate information and education about what to anticipate as a part of growing older, so they can set the stage for successful aging. The purpose of this booklet is to help with this process. It is intended to be used by various learners: families, professionals, direct caregivers or anyone concerned with the general welfare of someone with Down syndrome.
