Wednesday, October 3, 2012

Fewer services for patients with Down syndrome who are affected by Alzheimer's

  by Susan Abram from Pasadena Star News: She had learned to care for herself, to work and count her money so she could buy food, set the table, tell time and use a phone to dial 911. Now 60 years old, Denise Steinberg is forgetting the little things. She puts her blouse on backwards or her pants on inside out. Her attention span has dwindled. She is acting out toward her roommates. "I'm seeing the signs more and more, and I'm freaking out because where is she going to go?" asks Terri Budow, Denise's younger sister. "I love her and I want her to be around people who care and who love her, too." Steinberg was born with a developmental disability at time when she and people like her expected to live only until they were 30 years old. Now, she is part of an unexpected trend: Those with Down syndrome or other development disabilities are living longer, but in some cases, not necessarily better. More than 90 percent of those with Down syndrome develop Alzheimer's disease by the time they are in their late 40s. "This is something the community has never had to deal with before," said Roschell Ashley, director for residential services for New Horizons. The nonprofit New Horizons formed in the San Fernando Valley in 1954 to help those with developmental disabilities learn life skills, find employment and receive housing. But a new need has emerged. As their clients age, New Horizons saw that its group homes were not adequate
for elder clients with Alzheimer's and dementia. Of the nearly 700 clients the agency serves, more than half are 40 years or older. So in 2008, the agency began plans for a six-bedroom group home just for those with Down syndrome who develop Alzheimer's, one of only a handful in California and nationwide.
The nonprofit bought a plot of land in Reseda and the $1.2 million home is expected to be completed in the fall of 2013. "These clients become totally dependent and need special care," Ashley said. "The home will be equipped with everything, even lifts." But the increasing need will no doubt outgrow that home, she said. The number of people who seek assistance through the California Department of Developmental Services increased by 60 percent from 1997 to 2007. "What is going to be a challenge in this subgroup population is they will have nowhere to go, because their caregivers are aging, and their siblings are not around," said Dr. Sikander Kajani, who specializes in geriatrics and is with Northridge Hospital Medical Center. "There is no one to advocate for them," Kajani said. "It starts out with families that kind of care for them. As their children get older, they need a special environment to house them." Kajani and others say the onset of Alzheimer's for those with Down syndrome is different, which is why a general nursing home may not be best. A 40-year-old's body ages faster, making him or her look as if she were 60. "The milestones of aging come faster," Kajani said. A study currently under way at UCLA's Longevity Center shows that brain scans of those with Down syndrome display evidence of plaques and tangle deposits, evidence of Alzheimer's, at an early age. "What's challenging with Down syndrome is intellectually, they are challenged, but in Down syndrome (with Alzheimer's) you tend to see behavior problems," said Dr. Gary Small, director of the Longevity Center and author of the "The Memory Bible." Small said one way to delay Alzheimer's, in this population and everyone, is more exercise and better nutrition. "We don't have a cure, but there's a lot of evidence that healthy lifestyle can delay the onset of symptoms," Small said. "We can't cure it completely, but it might stall symptoms for three to four years." At Tierra del Sol, a nonprofit agency in Sun Valley that also provides opportunities for the developmentally disabled to learn life skills and live independently, healthy lifestyles are promoted as well. "This is the first generation in history when people with intellectual disabilities are routinely outliving their parents," said Steve Miller, executive director with Tierra del Sol, which serves 500 people. "The life expectancy has doubled." There are several reasons, Miller said, including better health care and steering away from the practice of placing these young men and women in institutions, where infectious diseases often cut their life span. "We also have a focus on integrating people with disabilities into (the) mainstream where their peers are," Miller said. Because clients are living longer, the agency has forged relationships with senior centers across the San Fernando Valley. "We call it supportive retirement," Miller said. Miller said communities and society can play a crucial role in how to help aging people with developmental disabilities. The secret is respecting all seniors. "The most important thing is as it relates to senior services is to honor our aging parents and grandparents, and recognize that they raised us, that they put us through diapers and college," Miller said. "If we treat our seniors that way, then seniors with disabilities will benefit from that. "Aging is a great equalizer," Miller added. "I'm arguing we don't see any differences." On a recent morning at New Horizons, dozens of clients headed into the agency's workshop to fill up bags with lollipops or to ready packages for shipping. It's a job Steinberg used to have, her sister said. Steinberg and her sister and brother were all born in Inglewood, at a time when New Horizons had just been forming. "My parents took her to different doctors, and did different tests," Budow said. "What I remember as a child is a lot of families didn't know how or want to take care of disabled children." Budow remembers visiting institutions recommended by doctors. Disturbing images of how children were treated still trouble her. Her family found New Horizons when they moved to the San Fernando Valley. The family even invested in the first group home, where Steinberg now lives. "Thank God for them," Budow said. "It just changed our world around. It gave peace of mind to our parents, to my mother. Denise was and is a wonderful sister, and I love her death." But in the group home, Steinberg has been acting out toward roommates. She cannot go to a nursing home, where there are fewer nurses per patient, and Steinberg needs more assistance, Budow said. Budow said she is looking forward to New Horizon's group home for those such as her sister. "I am so thrilled," Budow said. "I want this really bad." 818-713-3664
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