The Dementia Rescue Missions

On the afternoon of November 23, 2012, Sam Counts left his home on East Ninth Avenue in Spokane Valley to pick up bread from the grocery store. Simple enough. He had just gotten back from Christmas shopping with his wife of 45 years, now also his full-time caretaker. Counts, 71, had been diagnosed with dementia less than a year earlier. Hanging onto normalcy before the disease progressed further, Sam’s daughter Sue Belote would visit him several times a week, and he would still call her on the phone, she says. Sam’s doctor had said it was OK to drive, as long as someone else was in the car. On this Friday, Sam got into his white 2012 Kia SUV alone.

After two hours Donna called her daughter, worried. “I don’t know what to do. Dad didn’t come back and he never stays away this long,” she said. Three hours after he left, the family reported Sam Counts missing.The next morning, Saturday, radio and television outlets reported versions of the same story: a local man missing, trim, six feet tall, last seen in a red-and-black jacket, jeans and white tennis shoes. A description of a car and its license plate number was included.

Over seven frantic days, with the help of the Spokane County Sheriff’s Office, friends and family led a search that spanned parts of three states. They enlisted the help of a family friend who worked for the Spokane transit system to flyer local buses, and former colleagues of Counts in the postal service put up missing person photos in post offices. In the meantime, the family faced public criticism. Why was he allowed to get into the car alone? Why didn’t he have a cell phone?

Wandering behavior has become increasingly familiar. Yet Washington is not prepared to deal with this emerging public health threat. Few police departments have policies or training to educate officers on Alzheimer’s or dementia. An Amber Alert-like system set up in 2009 to help find wandering people is underused, its coordinator acknowledges, and bills to create a formal Silver Alert system like those in more than 20 other states foundered in both houses of the state Legislature this year.  Washington is also one of just six states that haven’t even started work on a statewide Alzheimer’s plan, even as the population at risk of wandering surges.

Over the same five-year period, at least 33 Washington residents with dementia who wandered have been found safe, according to news media reports. In each of those cases, law enforcement became involved either as a result of a missing persons report filed by family or a caretaker or when alerted to unusual behavior by a member of the public. King County Search and Rescue has responded to 10 cases involving Alzheimer’s or dementia since the start of 2012, all of which ended safely. Countless other cases are not reported to the police, not reported in the media, or both, according to experts.

There is no mandatory waiting period to report endangered adults as missing. That can happen in the first hour that a dementia sufferer is missing, authorities say.The number of people at risk is increasing. In 2010, 110,000 people aged 65 and older with Alzheimer’s lived in Washington, a 33 percent jump since 2000. By 2025, the Alzheimer’s Association expects there to be 150,000. And six in 10 Alzheimer’s patients will wander.

The question that a growing coalition of search and rescue professionals, caregivers, and policymakers across the nation face is this: How do we stop people with Alzheimer’s or dementia from going missing — and how do we design systems to bring them home safely when they do?It was more than a year before Sam Counts went missing when his family first started to worry that something might be wrong. They started noticing changes, like how he’d no longer push his grandchildren on the tire swing hung from a tree outside the house when they called for him. He was increasingly forgetful.

Even so, doctors were slow to make a diagnosis. That didn’t happen until one of Counts’ daughters, a registered nurse, flew out to Washington to stay with her parents for a week, keeping a daily journal of his behavior. Soon after, Counts was put on a drug regimen to try to slow the loss of memory that had been carefully documented in the notebook his daughter gave to the doctor.

“Maybe that’s what changed (the doctor’s) mind, I don’t know,” Sue says. But she remembers clearly her mother’s phone call when the dementia diagnosis was official. “I just was devastated. As soon as you hear the word, like cancer, it’s like everything flashes through your mind what your loved one is going to experience.”

The science behind Alzheimer’s disease and dementia, which is a symptom of Alzheimer’s but can also be caused by a host of other maladies or injuries to the brain, is still emerging. There is no cure for Alzheimer’s; there’s not even a surefire way to slow its progression.

The most common type of the disease appears to start in a part of the brain called the temporal lobe, up above the ear, says Dr. Kristoffer Rhoads, a neuropsychologist and memory specialist at Virginia Mason Medical Center in Seattle, as he rotates a plastic model of a human brain in his hands.

He points to the hippocampus. “In here is a critical piece for new learning and memory, especially short-term memory,” he says. “In the early stages of the disease, the structures are still there, but they’re not running well.”

As the disease progresses and more parts of the brain begin to atrophy, patients may lose the ability to perform more complex day-to-day tasks like driving. Medium-term memory can be affected, essentially taking individuals back in time to where their only memories are of homes and workplaces from years and even decades earlier.

On foot, wanderers tend to stay in the community, and most are found near where they were last seen. Seventy-five percent are found within 1.2 miles in flat, temperate areas such as Eastern Washington, and half are found within half a mile, according to Robert Koester, author of Lost Person Behavior and a speaker at the most recent state search and rescue conference. If someone with dementia gets stuck while wandering, or encounters an obstacle, he is likely to sit down and end up hidden away. When a vehicle is involved, the search radius immediately grows, but there is still an intended destination in most cases.

“Their characteristics are very predictable, in a bad way,” says Dr. Meredeth Rowe, a professor at the University of South Florida College of Nursing. Wanderers aren’t able to seek out help when they are lost. They won’t answer when their name is called. They can’t tell if they are too cold, too hot, or need a drink of water.

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