Alzheimer’s affects an unexpected population

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One of the joys here at the L.A. Daily News is working alongside three women who are from Tierra del Sol, an organization that encourages adults with developmental disabilities to learn various skills and contribute to the community.  Marcella, Linda, and Laney, photographed above with Los Angeles News Group Publisher Ron Hasse, have worked at the Daily News for nearly 20 years, and they are a gift. Their smiles, laughter and kindness remind me of the importance of being content with the moment, as they often are. In chatting with them one day, I learned that they and others with developmental issues are aging and some are even in retirement. The fact that they are living longer shows how much medicines and education have helped prolong their lives, but it also means many are experiencing dementia, a side effect of a longer life in many of them. Below is part of  story I wrote about how programs for the aging men and women with developmental disabilities are few and far between (Daily News, 2012): 

NORTH HILLS – 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.

 

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