Aging Matters: Growing Older with Down Syndrome

https://www.dsnetworkaz.org/programs/aging/

Down Syndrome Network, Inc.​

Tempe, Arizona

https://www.dsnetworkaz.org/

Down Syndrome Network of Arizona’s Aging Matters: Growing Older with Down Syndrome program is leading the provision of person-centered, dementia capable care for adults with Down syndrome and their families. Monthly programs focus on exercise, nutrition, self-expression in art and music, meaningful peer relationships, research and caregiver education. There are 250 regularly attending program participants. Since establishment in 2016, there has been 50% annual participation growth. The program is aided by volunteers who provide 300 hours/year of physical and safety supports, as well as encouragement.

This is the first generation of individuals with Down Syndrome who are living long enough to acquire Alzheimer’s. Adults with Down syndrome experience accelerated aging and may begin experiencing geriatric complications 20 years earlier than their typical peers. Life slows down in their 30s and 40s. By age 60, 56% of adults with Down syndrome are diagnosed with Alzheimer’s, and 80% will experience some type of dementia. But when the adult is placed with typical aging peers for support, they do not feel like they belong since they don’t see a reflection of themselves.

Because of childhood medical advances, the life expectancy for those with Down syndrome has nearly doubled in the past quarter century, from about 25 years in 1983 to 60 years today. For the first time, adults with Down syndrome are outliving their caregivers. Aging Matters empowers individuals and families to prepare for the unique challenges associated with growing older with Down syndrome and supports them every step of the way.