For years, the medical community has known that there was a genetic link between Alzheimer’s disease and Down syndrome, Jody Boyum, a licensed practical nurse for REM Woodvale V said.

Saturday, August 28, 1999

For years, the medical community has known that there was a genetic link between Alzheimer’s disease and Down syndrome, Jody Boyum, a licensed practical nurse for REM Woodvale V said. But only in recent years has this link received more attention.

Alzheimer’s rarely surfaced in Down syndrome patients because Down patients rarely lived past the age of 35. Due to medical advances, people with Down syndrome are living longer lives. The result – people with Down syndrome are three to five times more likely than others to develop Alzheimer’s.

Also, symptoms of Alzheimer’s seem to surface in Down syndrome patients decades sooner than the average person. For most, symptoms of Alzheimer’s typically appear after age 65. With those who suffer from Down syndrome, the onset of Alzheimer’s can occur as early as age 35.

&uot;There’s three clients with the dual-diagnosis between the three sites. That’s what we know for sure,&uot; said Boyum. She has worked with REM Woodvale V for nine years, but also has knowledge of clients at REM Woodvale VII in Albert Lea and REM Woodvale in Edina.

Boyum has been working with the Alzheimer’s Association to provide training for the staff. Yet, she admits it is a challenge.

&uot;Some of our clients come to us after living at another facility or their parent’s home. They’ve seen the changes that occur. We don’t,&uot; Boyum said.

Many of the early symptoms of Alzheimer’s include behavioral changes. However, if the REM staff is not familiar with the client’s behavior, it’s certainly not easy to spot any anomalies.

&uot;The staff is trained to pick up behavior changes. If a client who is usually happy and easy-going becomes aggressive, we can see that. But with new clients, it’s harder, because we don’t know how they normally are,&uot; she said.

Cheryl Biel of the Alzheimer’s Association agreed it can be difficult for care givers to spot the onset of Alzheimer’s in their clients.

&uot;Persons with development disabilities already have some form of cognitive impairment, so it is difficult to recognize additional signs of cognitive loss that occur with the onset of Alzheimer’s,&uot; Biel said.

&uot;For untrained care givers, it’s easy to interpret this progressive loss as difficulties associated with the individual, not the disease,&uot; Biel added.

Boyum noted that when some new clients come to REM, their former care giver already suspects Alzheimer’s disease may be affecting the client. With that, it’s easier for the REM staff to make an evaluation and the adjustments needed to treat a client with a dual diagnosis.

&uot;We have to make changes as far as how they eat,&uot; Boyum said. Some of clients require plates with upturned edges so they can eat with more ease.

&uot;And we’ve also had to get jumpsuits with zippers in the back.&uot; Boyum noted they had a client with a dual diagnosis who would try to disrobe himself.

Some clients have tried to escape the apartments while others are too afraid to go outside.

Additional staff is also needed for the clients who have both Down syndrome and Alzheimer’s disease. At REM Woodvale V, four clients live in an apartment while one staff member is always present. An additional staff member is added to the apartment that houses the client who suffers from Alzheimer’s.

Boyum credits medical advances and greater acceptance in the medical community for the longer life spans of Down syndrome patients. Although they are living longer, their bodies tend to age faster than the average person. And that’s why Boyum suspects Alzheimer’s disease affects them so quickly.

People with Down syndrome are likely more susceptible to Alzheimer’s because the protein that is responsible for the disease is carried on chromosome 21. Since 96 percent of people with Down Syndrome have three chromosome 21’s, scientists theorize that they are producing that protein at an abnormal rate, according to the Alzheimer’s Association.

Since there is no cure for Alzheimer’s disease, Boyum said all they can do is make adjustments for the client’s care and use medications to slow symptoms of the disease down.

For client Gary Hanson, who is in the later stages of Alzheimer’s, there’s not much anyone can do to prolong his life, Boyum said. Physicians prescribed Ritalin to make the man more alert, but the medication failed.

Now the staff simply tries to make the man comfortable, Boyum said.

&uot;Our focus with all our patients is respecting and maintaining the quality of life,&uot; Boyum said.