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As Ohio’s population shifts older, more adults are living with the progressive brain disease and more families and caregivers are trying to figure out the best way live with the diagnosis and symptoms.
Wandering is a common and dangerous — potentially deadly — symptom of Alzheimer’s and other related dementias. Just in the Dayton area, the Dayton Daily News found a dozen times since August where police were called to search for missing adults with dementia.
About six in 10 people with dementia will wander, said Sarah Cameron, Care & Support Coordinator with Alzheimer’s Association Miami Valley Chapter.
“And what I tell families is it’s really hard to know who that six will be and who that four is going to be,” Cameron said.
MORE: Tips for reducing wandering risk with dementia
Ohio taking action steps
Earlier this month, Gov. Mike DeWine signed into law a bill to create a task force to make a plan for the rising population with Alzheimer’s and other related dementias resources. An estimated 220,000 Ohioans, currently live with these diseases.
The planning process calls for the creation of a governor-appointed task force that will include Alzheimer’s caregivers, affected individuals, physicians, representatives of residential care, adult-day, hospitals and long-term care facilities, aging services as well as select members of the General Assembly and the Ohio Department of Aging.
“Alzheimer’s is not just an aging issue, it’s a public health issue, and Ohio is moving forward to combat the disease,” said Trey Addison, State Public Policy Director of the Alzheimer’s Association.
MORE: Local family caregivers struggle with care challenges
Dr. Steven Swedlund, a geriatrician with Wright State University Boonshoft School of Medicine, said there’s an argument to be made for more research dollars to studying the disease.
“I think dementia — major neurocognitive disorder — is like the fifth or sixth common cause of death for people 65 and over, so it’s right up there after cancer and stroke and things like that. So, I think there’s a good argument for doing more research to sort all this out because it is a very expensive thing to take care of,” Swedlund said.
Wandering off
Pamela Macha, a community health worker with Wright State University Boonshoft School of Medicine, helps families do a safety assessment after getting a dementia diagnosis and said one thing they always talk about is wandering.
“Because people do not expect their loved one to do that. They don’t expect someone who hates the cold to go out in her house shoes and pajamas and wander away,” Macha said.
Dave Coffey of Miami Twp. said he recently faced this with his mother-in-law who started wanting to visit loved ones and relatives who had been dead for years, putting a hot dog on for lunch and forgetting about it until smoke alarms blared, taking off in her car not being sure where she was going and foggy on how to get home, and most importantly, he said she started wandering.
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His mother-in-law tried to catch a bus, and visit her grandmother in West Carrollton, who had passed away many years prior. Luckily, he and his wife realized within about 20 minutes that she was missing.
“We jumped into our van and began searching. Within five minutes we spotted her “wandering” toward Miamisburg along State Route 725. It was a surreal vision: seeing an 84 year old great-grandmother staggering toward town while walking in a culvert ditch along a State Route,” he said.
After that, Coffey said it was clear that an assisted living facility was now a must.
“There are wrinkles still needing to be ironed out. (She) is still experiencing an overwhelming need to wander. Even though this reputable memory care facility is supposedly securely locked down, she has “wandered” out of the facility twice,” he said.
One of the challenges families face is when to get professional help or when their loved one can no longer live inside the home, said Macha.
“Most people think they can handle it themselves, and some people can, but most people at sometime in this journey are going to need assistance,” she said.
Safety steps
Macha tells families to consider simple and inexpensive alarms for their doors if they see wandering inclinations such as getting up at night and walking around confused. Locks up high on the door can be helpful, and depending on the home, window locks high up might also be helpful, she said.
There are devices like GPS tracking devices that can help such as watches, soles that can go in a shoe, bracelets or necklaces.
Cameron said the Alzheimer’s Association partners with Medic Alert for their Safe Return devices, which is not a GPS device but has information worn as a bracelet or necklace. There’s a number a caregiver can call for help if a person is missing or on the other hand, if someone sees the bracelet if a person has wandered away, then they can alert emergency contacts. There are also other brands of bracelets where people can get customized information engraved like medical information and an emergency contact to call.
MORE: Caregiver shortage a problem in Dayton area
Macha said one indicator of whether someone might be at risk of getting confused and wandering is whether you see a family member come out from the bathroom of a restaurant and seem disoriented looking for the table they came from.
“If they ever stand there and seem confused about where they are, if that person is taking longer than they should to do that, that is an indicator that they could wander,” Macha said.
Routson of Fairfield said one of the simple things he learned was that it is easier to redirect his mom than to try to correct her or argue. If she’d ask about where her dad was, “I’d just say he’s not here right now.” His mother started to always want to take care of a baby doll, which could be one way to redirect. Another thing Routson said that can be helpful is music.
He it was like getting to know his mother twice, and the second person was more patient and helped him learn mindfulness as she stared out the window on car rides focusing on the ordinary things.
“I went through the grieving process of two different people, the person that brought us up and then she was a whole completely different person after her dementia,” Routson said.
MORE: Local nursing homes struggle with staffing. Here’s what we know.
Macha said it can be the kinder thing to do to redirect someone or distract them.
“I call it the therapeutic fib,” Macha said. “You don’t want to say ‘Mother, you know, those people are dead’ ‘That home, you don’t have that home anymore.’ It’s kinder to say, ‘we’ll talk about that in a few minutes, why don’t we have a snack, and we’ll talk about that in a few minutes.”
People could potentially wander before they are diagnosed with anything. Wright State’s Swedlund said that one of the early things people start to notice is short term memory loss, such as telling the same story and forgetting they already told it.
“So basically for the layperson, a lot of times that dementia, particularly Alzheimer’s type of dementia, starts with loss of short term recall,” Swedlund said.
To diagnose Alzheimer’s dementia, doctors evaluate signs and symptoms and conduct several tests, as well as rule out other conditions. Dementia — or major neurocognitive disorder as Swedlund said it’s starting to be called — can be a hard diagnosis to take in for both the person being diagnosed as well as the family. He said it’s common to get depressed and a lot of his patients get treatment with antidepressants and talk therapy.
“There’s a process to go through and we don’t usually do it in one visit. We usually see the patient back a second, third time, and it’s hard to break news like that,” Swedlund said.
Search and rescue
Law enforcement is one of the front line agencies dealing with wandering when they are called to search for a missing person.
In October, a missing 87-year-old woman in Yellow Springs was found safe after a Greene County Sheriff’s deputies used rescue dogs, drones and a helicopter, as well as an Ohio State Highway Patrol dispatched helicopter, to search. A few weeks before that, Kettering police issued an alert for a missing 87-year-old with dementia drove from home and was in need of medication. Around 4:45 a.m., police announced he was found safe.
Greene County Sheriff Gene Fischer said when he was an officer in Xenia there was a case where a man walked away from his home and was found deceased several months later.
“Those are the sad effects of these diseases that people get,” Fischer said. “We have a friend of this agency that is showing signs of this now and he’s twice walk away from his house and actually was able to get in cars and drive away and found over an hour away both times.”
Fischer said they have new technology they can use to help with search, such as drones to look overhead into fields, and they also have a mounted search team that’s a group of volunteers horseback that will go out into the fields on horseback.
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The sheriff's office in Miami and Clark counties are among law enforcement agencies that are a part of Project Lifesaver, which is an electronic tracking system to track people who have physical or developmental conditions which could contribute to their wandering from their residences.
Capt. Mike Marion, who is with the Miami Project Lifesaver team, said the deputies in the program also have information they keep of the clients so they can see a picture, diagnosis as well as interests and hobbies so they can talk to about something familiar with the person and gain trust who might otherwise be anxious about law enforcement.
The free program now serves 23 Miami County clients. As required by the contract to participate, all the clients also have a caregiver with them, said Marion.
“Anyone who is going to wander like this, it doesn’t mean that there isn’t somebody by their side all the time. You could be in the kitchen doing dishes and they get up and walk out and you don’t know,” Marion said.
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Who is at risk of wandering?
Anyone who has memory problems and is able to walk is at risk for wandering. Even in the early stages of dementia, a person can become disoriented or confused for a period of time. It’s important to plan ahead for this type of situation. Be on the lookout for the following warning signs:
• Returns from a regular walk or drive later than usual
• Forgets how to get to familiar places.
• Talks about fulfilling former obligations, such as going to work
• Tries or wants to “go home,” even when at home
• Is restless, paces or makes repetitive movements
• Has difficulty locating familiar places like the bathroom, bedroom or dining room
• Asks the whereabouts of past friends and family
• Acts as if doing a hobby or chore, but nothing gets done (e.g., moves around pots and dirt without actually planting anything)
• Acts nervous or anxious in crowded areas, such as shopping malls or restaurants.
Source: Alzheimer’s Association
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