Coping with Alzheimer’s

It is a disease that devastates families as well as patients, but there are things being done about it. Photo by Suzette Lucas

By: Rebecca Weltmann
   A woman is diagnosed with Alzheimer’s disease. Her family, in an effort to minimize confusion, clears the bathroom counter except for toothpaste and a toothbrush. And for a while, it works. And then one day a family member goes into the bathroom and the woman is holding the toothpaste in her hand and the toothpaste is in her hair because she thinks it’s hair gel.
   And then, said Keith Becker, 44, of Upper Freehold, it really gets wild.
   "She doesn’t recognize you and she thinks you’re trying to hurt her," he said. "So she fights you. When I heard this description of something that might be coming, it really hit me hard."
   Two and half years ago, Mr. Becker had a family member diagnosed with Alzheimer’s, the most common form of dementia. The family did not wish to identify the person or their relationship. Over 5 million people in the United States have been diagnosed with the disease, which attacks both long- and short-term memory. When Mr. Becker’s loved one was diagnosed with it, he said, he and his brother, Karl Becker, were not quite sure what to expect.
   For her, the brain degeneration process has been slower than most, thanks to a special medication treatment. Keith Becker said he doesn’t know whether the experimental treatment given to his loved one is the real pill or a placebo, but the slowing of the process is unmistakable. For the most part, he said, she is still active and aware of her surroundings. She hasn’t had quite the experiences that he described with the toothpaste.
   "She’s still living at home on her own, driving and cooking," he said. "She’s aware of it though and she understands it. She’s always been an extremely intelligent woman and she’s very, very independent. She doesn’t want to be taken care of by anyone."
   Karl Becker, though, said he knows her driving days are numbered. Already, he said, her scope of travel has shrunk from the United States, to New Jersey, to her town, and sometimes even smaller than that. The danger of a person with Alzheimer’s driving is the possibility of first, forgetting how to operate the vehicle in the middle of a drive, and secondly, forgetting where she was going and how to get home.
   This was the case for Marie Porter, 89, in Toms River. On June 27, police found her body on a rarely traveled road in the woods in Toms River. Her family confirmed that she had Alzheimer’s.
   On June 29, police found the body of 81-year-old Gordon Hector of Hamilton. He had been missing since June 15.
   Recently, a third man from Ewing, Frank DiDonato, 79, was reported missing. Though he was found safe, it was a rude awakening for the family who said they didn’t think it could happen to him. Each incident involved a patient with Alzheimer’s "wandering" and getting lost. It is instances like these that have reinforced the need for law enforcement officials to become more aware of how to handle a missing person’s situation involving a person with Alzheimer’s or other memory impairments.
New legislation
   In January, the state Assembly passed a bill that would establish stronger guidelines for searching for missing persons, specifically juveniles and Alzheimer’s patients. The Assembly approved the bill, A-420, on Jan. 29 and the state Senate approved the bill, S-2518, unanimously on June 21. Sen. Peter Inverso, R-14th, and Sen. Anthony Bucco, R-25th, sponsored the bill.
   The bill requires the Missing Persons Unit to "consult with Alzheimer’s support and child welfare groups in developing the guidelines, which would be binding on all State or local law enforcement entities."
   Previously, there were no mandatory, statewide minimum standards for the handling of missing person’s cases involving persons with Alzheimer’s disease and juveniles.
   According to a summary of the bill, state police training materials state that "a quick response to reports of a missing person suffering from Alzheimer’s disease are crucial. When an Alzheimer’s sufferer is found within 24 hours, there is a 99 percent probability that the person will survive. When found after 24 hours, almost half die due to hypothermia or dehydration."
   "It was a bill that was introduced in the Assembly and it came to my attention," Sen. Inverso said. "I thought it was a good bill. Today, we’re more aware of people afflicted with the Alzheimer’s disease and clearly they have a tendency to wander. I just thought it would be appropriate to take a look at what procedures are out there for finding them and finding out if there is a better procedure."
   The bill must be signed by Gov. Jon Corzine before it can become law. Sen. Inverso added he wasn’t sure when the governor was expected to sign the bill. Once it becomes a law, law enforcement officers would be required to examine their procedures for missing persons to determine whether their procedures are appropriate.
   "The bill itself does not specify guidelines," the senator said. "It asks police to evaluate what’s in place and see whether it would be more effective to have more standardized guidelines on a statewide basis."
   Gordon Dawson, chief of police in Florence Township, said each of the officers is expected to go through a training session for handling missing persons cases involving Alzheimer’s patients. The training provides not only background on the disease itself, but also gives officers tips for how to go about successfully retrieving missing persons with Alzheimer’s.
   "It certainly is different from a normal missing person’s case," he said. "If a person has been diagnosed, you’re looking for a person who is not necessarily a run-away like some are, such as juveniles. When looking for Alzheimer’s patients, we’ve had our officers under go training in that area."
   In the 25 years that Mr. Dawson has been on the police force in Florence, he said he can only remember three incidents involving patients with Alzheimer’s. In one of the instances, he added, the gentleman evaded police because he believed he was in a war-zone.
   "Fortunately, things turned out well under those circumstances," he said. Each of the three cases involved successfully finding the persons that had wandered off.
   For the Beckers, the possibility of their family member wandering away from home is a very real and scary possibility. To help give them some peace of mind, though, is the family member’s health-care facility at the University of Pennsylvania Hospital. At this facility, both brothers are enrolled in a program with their family member. The program provides workshops to help them understand what is happening to their loved one and what they can expect down the road.
   The program also takes routine photos to keep an up-to-date picture database for law enforcement should one of their patients becoming a missing person. The Beckers have also looked into the possibility of getting a bracelet for their relative that would act as a homing device should something unexpected happen.
   Fear of wandering is not the only concern, though. Alzheimer’s leaves many nerves unsettled. Karl Becker said an additional fear is the question of whether the disease has found a way into his genes.
   "I might have the genetic makeup to go along for the ride also," he said. "I’m hoping that I don’t. Being the proud father of none, I don’t have to worry about passing it on, at least, but it’s always there in the back of my mind. I’ve already informed my physicians that my (loved one) was diagnosed just so they can keep an eye on me."
What families can do
   Many family members believe they are not at risk of having their loved ones wander, but the reality is that Alzheimer’s is unpredictable and people who have the disease are unpredictable. One never knows when a person with the disease might decide to go for a walk and then forget what he or she was doing.
   There are devices, though, to help protect people with Alzheimer’s from getting lost and staying lost. These devices, worn as bracelets, have computer chips that act as "homing beacons" for law enforcement.
   New Jersey also offers a program, Project Lifesaver International, which is a nonprofit organization that partners with law enforcement officers to help search for missing persons. They have also offered training courses for law enforcement officers for dealing with missing persons cases involving Alzheimer’s patients.
   "It’s a little bit like AIDS," said Keith Becker. "When it first came about, nobody really understood it, and so they were afraid of it. With Alzheimer’s, it’s sort of similar. It’s really big and it’s really bad because you can’t control it, not completely, and you never know who might get it."
For more information about Alzheimer’s, visit www.alz.org or go to www.projectlifesaver.com.