But the sad irony is that people with Down syndrome have a genetic predisposition to Alzheimer's disease. With the average onset at the age of 58 - 13 years earlier than Alzheimer's in the general population - people with Down syndrome lose their ability to fight one condition and are immediately faced with a new challenge.
"Everyone who has Down syndrome, if they live long enough, will have Alzheimer's disease," said Dr. Paul Raia, director of patient care and family support at the Alzheimer's Association Massachusetts Chapter in Watertown.
Complicating the issue is the difficulty for direct care workers to recognize the symptoms of Alzheimer's disease - characterized by dimensia and memory loss - in developmentally disabled clients, who already have mental difficulties.
To combat this challenge, GWARC Executive Director Roz Rubin applied for and received a $4,500 grant from the Community Health Network Alliance, a coalition aiming to enhance access to health care, and promote health and prevention services.
The grant will be used for a multipart training program to help 40 GWARC staff members better address the needs of aging consumers with developmental disabilities. Rubin said about 40 GWARC clients, or about 25 percent of the people served by the nonprofit agency, have Down syndrome.
"I'm hoping to get going in June," said Rubin, who added the training program will begin at Springwell in Watertown, where workers will learn about symptoms and stages of normal aging and geriatric issues.
Raia will step in for the second component to the training, teaching staff members how to recognize symptoms of Alzheimer's and how to treat the disease. Having to completely shift in the approach to therapy is the hardest thing to reconcile when someone with Down syndrome develops Alzheimer's, said Raia.
People with Down syndrome are born with triple the amount of chromosome 21 as compared to the general population. The chromosome happens to be one of the key components in the genetic makeup of those who develop Alzheimer's disease later in life, Raia said.
"It's a hard message for families to hear and it's a hard message for people who care for these people to hear," Raia said.
But the message is not without hope. Education is key to delaying the onset and progression of Alzheimer's.
While people with Down syndrome have the ability to learn new skills through behavior modification, Alzheimer's disease is characterized by an inability to process new information. People suffering from Alzheimer's function by relying on old information, processed before the disease took hold of the brain.
Treatment of Alzheimer's focuses on a familiar environment and activities such as singing old songs, that evoke emotion associated with old memories.
"The last capacity to go with Alzheimer's is the person's ability to feel emotions," Raia said. "At every point in the course of the disease, the person is still in there. The quest is to find that part of the person that is still there and to develop a connection with that person."
Raia said helping direct care workers, who are used to dealing with people who have intellectual and developmental disabilities, to recognize and understand how Alzheimer's works could alleviate workers' frustration. And Raia said familiarity of people and surroundings is essential for Alzheimer's patients.
Awareness is very important for those who care for people with Down syndrome, according to Raia. He said research shows diet, physical exercise, mental exercise, and social engagement, can all help fight the onset of Alzheimer's.
"If you start young enough you may be able to delay the age of onset of Alzheimer's disease," Raia said.
Rubin said the training program will also certify four staff members to train new workers as they come to GWARC and look into programming for elderly developmentally disabled individuals in general.
Raia noted services at the Alzheimer's Association are free and encouraged family's to use his organization as a resource.
Nicole Haley can be reached at nhaley@cnc.com or 781-398-8004.
