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Aging with Down Syndrome

Identifying Potential Needs for Seating & Positioning Support

down syndrome

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Admittedly, entering middle age isn’t easy, even for people without disabilities. There are newly random aches and pains. Longer recoveries after strenuous activities. Dealing with a body that seemingly rebels in a dozen ways as it gets older.

For people with Down syndrome, advancements in medical interventions, therapeutic regimens and early interventions have led to longer life expectancies and greater independence and function starting in childhood. As people with Down syndrome age, however,

DOWN SYNDROME CAUSES & PRESENTATIONS

Down syndrome occurs when a baby is born with a full or partial extra copy of chromosome 21, says the National Down Syndrome Society (NDSS, ndss.org).

NDSS adds that there are three types of Down syndrome. Trisomy 21, the most common type, accounts for 95 percent of cases and occurs due to cell division error. Translocation, which makes up about 4 percent of cases, happens when a full or partial extra chromosome 21 attaches to another chromosome. And Mosaicism, which accounts for just 1 percent of cases, happens when some cells have the usual total of 46 chromosomes, but some cells have 47 chromosomes, including an extra chromosome 21.

In all types of Down syndrome, the extra chromosome 21 impacts development as a fetus grows. Probably the best-known visible characteristics of Down syndrome, according to the Mayo Clinic, are a flattened face with a small head and a short neck; a protruding tongue; an upward slanting of eyelids; short fingers; and small hands and feet.

Children with Down syndrome typically have poor muscle tone relative to typically developing children, and also demonstrate excessive flexibility. They grow more slowly and remain shorter than typical children the same age. Congenital heart defects, often structural, are present in about half of all people with Down syndrome. The lungs of children with Down syndrome don’t develop as fully as the lungs of typical children. And craniofacial features, such as the flattened mid-face, can raise the risk of or exacerbate respiratory issues, including chronic aspiration, frequent and serious respiratory infections, and sleep apnea.

Low muscle tone, excessive or poor flexibility, and vestibular issues can cause balance problems, according to Children’s Hospital of Philadelphia. And the Down’s Syndrome Association says that while excessive weight gain isn’t inevitable for people with Down syndrome, factors such as low muscle tone, lower metabolic rates, and less physical activity and stamina can raise the risk for obesity.

People with Down syndrome typically have mild to moderate intellectual disabilities, NDSS says. And they are at higher risk for dementia, especially Alzheimer’s, which tends to present in people with Down syndrome at earlier ages versus the general population.

MEET CHARLOTTE WOODWARD, SUPER ADVOCATE

Charlotte Woodward

CHARLOTTE WOODWARD TESTIFIES: COURTESY NDSS

Charlotte Woodward

Charlotte Woodward, 30, is the Community Outreach Associate for NDSS. She has Down syndrome.

“A typical workday prior to the COVID pandemic was I would get up and have breakfast and get ready for work,” Woodward told Mobility Management. “I would then commute to work by a car service into the District of Columbia and get to work at the National Down Syndrome Society’s office, where I take on many projects to advance NDSS’s mission.

“Right now, during the COVID pandemic, I’m at home. I have traveled pre COVID. Now that COVID is around, I do Zoom calls.”

Colleen Hatcher, the NDSS Senior Manager of Community Relations, said Woodward, who lives in Virginia, travels regularly by car, train and plane: “Charlotte probably travels five or six times a year outside of the D.C. area with us, whether that was to New York City or to Florida or whatnot. But then Charlotte went to a [Capitol] Hill meeting about every other week.”

And working for NDSS is just one of Woodward’s many activities.

“Not only am I working at the National Down Syndrome Society, I’m also working toward a degree in sociology at George Mason University with a focus on social change and inequality,” she said. “A few of my goals through NDSS are developing training tool kits, expanding NDSS’s employment campaign, and working toward representation of people with Down syndrome in the media. In my spare time, I enjoy watching movies, doing baking projects and arts and crafts, dancing, going out to eat, and playing with my dog.”

SEATING & MOBILITY SUPPORT FOR AN AGING DOWN SYNDROME POPULATION

Woodward used a wheelchair as a young child, not because she had difficulty walking, but because an atrioventricular heart defect limited her stamina.

“When I was a baby and a toddler, I benefited from early intervention and received occupational therapy and physical therapy,” she said. “I did for a while have to use a wheelchair when I was little, but that was only an occasional fallback option if I was tired.

“One accommodation that helped me a lot was the three-wheeled bicycle, as it helped stabilize my balance and gave me confidence to keep at it. I am privileged to be ambulatory, and I recognize that people with physical conditions need these kinds of supports to help them live independent lives.”

As she grew, multiple surgeries failed to resolve her heart issues. “When I would go at a fast pace in hot weather, I would have syncope, a fainting episode,” Woodward said.

In her early 20s, Woodward had a heart transplant, a rarity for someone with Down syndrome. A January story in Forbes described the difficulties that people with disabilities such as Down syndrome frequently face when trying to qualify for organ transplant lists (see sidebar).

ACCELERATION AT MIDDLE AGE

While very young children with Down syndrome are usually delayed in walking, they typically remain ambulatory through childhood, adolescence, and young adulthood.

But once they reach middle age, they often experience “accelerated aging,” says the NDSS. That means that people with Down syndrome who are in their 40s and 50s can experience age-related issues typically associated with much older people (see sidebar).

Those difficulties can include vision and hearing losses; hypothyroidism (which can lead to weight fluctuations, fatigue and irritability); osteoarthritis; osteoporosis; instability of the cervical spine (atlantoaxial instability), which can raise the risk of a spinal cord injury; and early-onset Alzheimer’s disease. Low muscle tone and a general lack of stamina can raise the risk of unwanted weight gain, which can further hamper mobility.

Supporting the challenges faced by people who are aging with Down syndrome is a topic expanding in importance, as the number of middle-aged people with Down syndrome is growing. A study published by the National Library of Medicine estimated that in 2013, some 210,000 people who had Down syndrome and were 55 years or older were living in the United States.

But every person’s aging experience, of course, is unique — and for some, the fitness routines established and maintained earlier in life can pay off in middle age.

Chandra Colwell and her family are experiencing the aging process first hand through her twin brother, Ryan, who has Down syndrome.

“We are 45 years old,” Colwell said. “Ryan lives in Carolina Beach, N.C., with my parents. He is very active, working out regularly. He spends lots of time with friends and is an amateur photographer.”

As he enters middle age, Ryan continues to be active, Colwell said: “Ryan walks and climbs stairs without any assistive devices. He boxes with a heavy and a speed bag. He has not had any difficulties with heart abnormalities. He works to maintain his muscle tone and demonstrates excellent muscle mass in his arms and legs. He is interested in yoga. All of these things improve his muscle tone and physical fitness.”

As her brother ages, Colwell said he’s doing well, though also experiencing ups and downs typical for people in middle age.

“Ryan remains active,” she said. “He surely has a few more aches and pains, but is exceptionally healthy overall.”

RESOURCES: Working with People with Down Syndrome

Is it Down’s syndrome or Down syndrome… and what’s the history behind each term? The Preferred Language Guide from the National Down Syndrome Society (NDSS) explains that and provides other people-first tips. Also available on the NDSS site: Explaining Down syndrome to kids, and Down syndrome myths vs. facts.
https://tinyurl.com/downsyndromelanguage

Health & Well-Being Guidebook: This NDSS publication can help people with Down syndrome, their families, caregivers, and healthcare professionals to better understand what to expect from the aging process. Especially helpful to seating team members: How to optimize your communications with someone experiencing Alzheimer’s or dementia.
https://tinyurl.com/NDSSaging

This article originally appeared in the January/February 2021 issue of Mobility Management.

About the Author

Laurie Watanabe is the editor of Mobility Management. She can be reached at lwatanabe@1105media.com.

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