The developmentally disabled are aging too
By Rebekah Gordon
© 2005 Rebekah Gordon and Columbia University Graduate School of Journalism
Living in a group home for developmentally disabled older adults on 30th Street in Manhattan, Charlie Wattenstein does pretty well for himself. The 64-year-old, who has Down syndrome, contributes to house chores, works odd jobs such as stuffing purses with tissue paper, and gets around the neighborhood on his own.
But one Saturday after work nearby, Wattenstein became confused and couldn’t find his way back, an early-stage sign of dementia. “He wasn’t getting older, it seemed like he was just stable,” said Patricia Williams, the assistant manager of the home, which is run by the Association for the Help of Retarded Children (AHRC). “And all of sudden, one day you look at him, and then it’s as if he has aged ten years. And you think, but wait a minute, what’s going on here?”
It is not uncommon that Wattenstein developed this new complication, or that he has lived as long as he has. Thanks to medical advances and better treatment, for the first time in history people with developmental disabilities like Down syndrome are living normal life spans. But with this phenomenon has come uncharted territory for doctors, social workers and caregivers to understand and address the unique medical and social issues the developmentally disabled face as they age.
The 2015 Project at New York State’s Department of Aging estimates that as many as 500,000 elderly in the U.S. are developmentally disabled, and that the number is expected to double by 2030. While any chronic disability that begins before age 22 and severely impacts major life activities like language and independent living is considered a developmental disability, the aging effect in Down syndrome is particularly noticeable.
“Imagine a Down syndrome person who develops Alzheimer’s,” said Jeff Minde, an attorney for the disabled in Coral Springs, Florida, and head of the National Special Needs Network, a nationwide coalition of disability service providers. “You’ve got a double whammy going on.”
Alzheimer’s and Down syndrome are both genetic mutations of the 21st chromosome, Minde said, so the diseases are closely related. As a result, there is a high probability that a person with Down syndrome will develop Alzheimer’s or Alzheimer’s-like dementia after the age of 50. It makes caring for them more difficult and severely limits their already inhibited independent functioning.
But cognitive decline is not the only challenge. “What I’ve found with Down syndrome in general, and with most developmental disabilities,” said Marcia Richman, a registered nurse and the health care coordinator for group homes at AHRC, “is that they age at least 10 to 20 years sooner than your typical adult would age.”
Symptoms of aging like diminished hearing, the development of cataracts, respiratory difficulties, the onset of menopause, and obesity-related diseases like high cholesterol and diabetes can all occur earlier in those with Down syndrome, she said.
In addition, for those with developmental disabilities who are cared for at home, living a normal lifespan leaves them now outliving their parents. “There are times when you have a 50-year-old and an 80-year-old parent, and that 50-year-old is having cognitive declines, as is that 80-year-old,” Richman said. With the 50-year-old Down syndrome patient really functioning at a level of someone at least ten years their senior, Richman said, the needs of the parent and child can be nearly identical. “So you wonder, who is taking care of who?”
Most end up being moved to group or nursing homes after their parents pass away or become too frail to care for them, a massive life transition that can trigger depression. Though group homes can help ease the individual in, nursing homes are not geared to handle someone with Down syndrome, Minde said, where their needs are largely ignored or misunderstood. “You need to be able to gear the human side of things to the individuals,” he said. “Nursing homes are not doing the job.”
And as Wattenstein struggles with his added complications, caregivers at his group home like Williams, the assistant manager, struggle along with him. “You watch them every day get a little bit older, a little bit more forgetful, a little bit more difficult, a little bit more demanding,” she said with a tinge of laughter.
“The needs of the disabled are only the senior needs increased by a factor of ten,” Minde said. “It’s an area that’s got to get addressed. It’s only starting to be recognized now.”