Aging with Down Syndrome
Identifying Potential Needs for Seating & Positioning Support
- By Laurie Watanabe
- Feb 01, 2021
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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,
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 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.
CHARLOTTE WOODWARD TESTIFIES: COURTESY NDSS
Charlotte Woodward, 30, is the
Community Outreach Associate
for NDSS. She has Down
“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
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
“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
“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
“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
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.
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.
This article originally appeared in the Jan/Feb 2021 issue of Mobility Management.
Laurie Watanabe is the editor of Mobility Management. She can be reached at firstname.lastname@example.org.