Friday, March 3, 2017

Mary had become one of the “the wanderers” — patients with dementia or Alzheimer’s disease who see a doorway as a route home — even if the home they’re thinking of is one they haven’t lived in for decades.

When they wander: If someone you love has Alzheimer's or dementia, it's the nightmare scenario





Alzheimer's/Dementia and the problem of wandering


Jeff Marier remembers the panic he felt when he came home from a rare dinner out with friends four years ago to find the lights blazing and the front door wide open.

It wasn’t his valuables he feared was missing. It was his mother.

“At the time, I could still leave her alone. At least, I felt I could leave her alone,” says Marier, 62, an only son who lived with his mother and was her only caregiver.

“I walked in and there was no one there. I was scared. But there was a message on the phone from my neighbour. They said ‘We’ve got your mother here. We found her outside wandering around.’ Luckily she knocked on their door. She said she was lost.”

Mary Marier, now 90 and living in a long-term care, had been diagnosed with Alzheimer’s disease in 2006. Mary had wandered twice before, but nothing as serious as this.

“That was the final straw,” Jeff said. “From that point on, I knew I could not leave her alone. That changed everything. That meant I was here. There was no running to the store, no running to the bank. Either I’m taking her with me or I’m not going. It’s a scary feeling when someone disappears like that.”

Mary had become one of the “the wanderers” — patients with dementia or Alzheimer’s disease who see a doorway as a route home — even if the home they’re thinking of is one they haven’t lived in for decades.

Ottawa police don’t collect stats on how many of the 1,600 adult missing persons cases they investigated last year involved dementia, but Sgt. Reno Rushford of the Missing Persons Unit knows the number is rising quickly.

“After 30 years of being here, I can tell you without a doubt that those numbers are higher than they were even five years ago,” Rushford  said.

“It’s the ones where you go to an elderly couple’s house and they just don’t want to leave their home that are so heartbreaking,” Rushford said. “You have an elderly lady and she says, ‘He was doing fine. He was sitting in his chair. I thought I would have 20 minutes to at least take a shower today. But I came out and he was gone.

“Then the search is on.”

More than half a million Canadians are living with Alzheimer’s disease or dementia, a number that’s likely to double in the next 15 years, according to the Alzheimer’s Society of Canada. There is no cure, not even a proven treatment to slow the disease’s progression.

About 60 per cent of those afflicted experience at least one incident of wandering during their illness. Those who don’t are probably just too disabled to walk, says Dr. Frank Knoefel of Bruyère Research Institute’s Memory Program.

“If everyone with Alzheimer’s was physically fit, then there would come a time where everyone would have a period of (wandering),” Knoefel said. “As the disease progresses, physically you’re still very well, but cognitively you don’t remember. And if you don’t recognize that you’ve been to this place before, then your mind map starts breaking down.”

“Mind maps” are nothing more than a collection of memories built up over time: We know that to get home, we turn left at the church then right at the gas station. Alzheimer’s and dementia strip away memories like peeling layers off an onion, Knoefel said.

“Bits and pieces of the map disappear. I’ll see the gas station but if I don’t remember to turn there, I’ll just keep going.”

Often someone with dementia reverts to an earlier time in their life.

“If when I was 40, my morning routine was to go out and get my coffee then buy my newspaper, then that’s what I’m going to do, even if I don’t live in the same place I did when I was 40. When I step outside, suddenly it’s ‘Where am I? Where’s home?'”

That can be profoundly disturbing for loved ones. Jean’s husband, Dan, was a forester who used to tend a 1,400-acre woodlot near Sault St. Marie and a sailor who could precisely navigate his 27-foot sailboat the length of Lake Superior in heavy fog. Jean was one of about 70 people who attended an information session on Alzheimer’s disease last month hosted by MPP Lisa MacLeod. (The Citizen agreed to not use the couple’s real names to protect the family’s privacy.)

“The forest was his home,” Jean said. After the couple moved to Ottawa, he still loved to walk. Then in 2015, Dan was diagnosed with Alzheimer’s.

“He used to walk through the neighbourhood. Then he started not coming home. That’s when I got scared.”

Jean bought a GPS tracker for Dan to wear like a watch. Once he disappeared and they found him wandering in a construction site two kilometres away. Another time, he wandered on to a golf course.

“My fear is that he would get tired and just lie down somewhere. It was summer, but on a golf course, who’s going to find him? I was very scared.”

Dan now lives in a secure retirement home in Nepean.

Most searches end quietly and quickly — about 95 per cent are found within a half kilometre of home — but occasionally they are gone for hours or are found kilometres away. When the weather is harsh, wandering can be deadly, especially since the loss of “executive function” in the brain can make people walk out into sub-zero weather without proper winter clothing.

Earlier this week, police spent the night looking for a 70-year-old man with dementia and diabetes who wandered away from the retirement home where he lived during the confusion of a shift change. He was missing for 20 hours until officers found him the next morning walking on Heron Road. He couldn’t say where he’d spent the night.

“He hadn’t been seen since noon and we weren’t called until that night so already we were six or eight hours behind,” Rushford said. “He was OK, but imagine what would have happened if it had been -20 that night.”

Rushford remembers one man who went missing in Billings Bridge who turned up hours later in a coffee shop near Parliament Hill after walking straight up Bank Street.

In another call in Orléans, the man walked to a fire station where the firefighters called police.

“We were able to get him back, but it was difficult because he was very aggressive,” Rushford said. “He said, ‘I don’t need your help. I’m a grown man. You’re embarrassing me.’ His wife was there and she was completely drained. It’s just very sad to see that deterioration of someone.”

When a call for a missing senior comes in, front-line officers must decide whether it must be treated urgently. Is the person on medication? Do they suffer mental-health issues? Have they wandered before? Is there a pattern to their wandering — to old neighbourhoods or former workplaces?

Finding wanderers is also more difficult today because few people know their neighbours anymore.

“It used to be, I could go to a house on a street and say, ‘Have you seen Mr. Jones?’ and everybody on the street would know who he was,” Rushford said. “Today, it would be ‘I didn’t know there was a man living there.’ There’s a neighbourhood disconnect that wasn’t there 20 years ago.”

Lesley Sullivan knows how worrisome wandering can be for families dealing with Alzheimer’s or dementia. Sullivan owns the Ottawa franchise of Home Instead, employing 120 caregivers who provide care and support for about 180 area seniors.

“It’s not that they’re wandering aimlessly, there is intent,” Sullivan said. “They’re trying to go home or trying to go to work. It can be something as simple as being taken out of a routine. Maybe they used to go to Tim Hortons for coffee with their buddies every Thursday and all of sudden they can’t do that anymore. But in their mind, it’s Thursday and they have to go.”

“Sometimes they’re just looking for a bathroom. They don’t find it and they just keep looking and looking and looking.”

In January, Home Instead rolled out a free online alert system — Missing Seniors Network — that lets families register a person with dementia and establish a network of family members, friends or even local businesses that can be alerted if the person goes missing. The system has been used in the U.S. since last summer and rolled out in Canada last month.

“It’s a great tool,” she said. “It’s like an Amber Alert system for seniors. If Mom or Dad goes missing, call police first, then send a blast out for everyone to keep their eyes open.”

Sullivan advises families to keep a record of when and why the wandering occurs to look for patterns in behaviour.

“Keep an eye on those times when they do wander. Keep notes on where they go — that’s the first place to look. But don’t waste too much time looking for them. If you don’t find them in 10 minutes, it’s time to get police involved. They’re probably still in the general area.”

The “sundowning period” is a frequent time when wandering occurs, the end of the day when the person can feel especially agitated. They may be tired, or confused by the change from day to night, or become bored or restless as the day winds down.

It’s important to keep a close eye on them in these periods or to provide some sort of stimulus to keep them occupied.

Jeff Marier remembers the sleepless nights he spent worrying about his mother.

“You don’t sleep. You’re lying there at night and you hear her and it’s “Uh-oh. She’s getting up. What’s she doing? Oh, she’s just going to the bathroom. OK.”

Eventually the constant worry and the demands of caregiving grew too much. Three years ago, Mary was placed in a city-run long-term care facility.

Leaving her there was the hardest day of his life, Marier said, harder than even the day he found his father dead at home. And there is emotional toll of becoming the caregiver of the parent who cared for you as a child — a tragic reversal of life roles. Marier visits his mom several times a week in her new home. Her smile radiates when he comes in. She knows his name; knows he’s her son.

“But she doesn’t remember my dad. And she doesn’t remember anything about her own life or any of the things that she’s done. To me, that’s the saddest thing of all.”

He and Mary had become regular speakers for the Alzheimer’s Society of Ottawa and Renfrew County.

“What concerns me most is the people who won’t accept it, who deny the disease. When Mom was first diagnosed we sat down and had a talk. I said, ‘Mom, it’s a disease.’ There’s nothing to be ashamed of. We’re not going to hide it.

“As the disease progresses, it becomes easier for the patient and harder for the family. Mom is in her own world now. There is no yesterday. There is no tomorrow. There is no five minutes ago! She just lives in the moment. … She’s happy in her own little world.”

The Alzheimer’s Society of Ottawa and Renfrew County also offers an online resource,, with information and tips about how to prevent wandering and what to do if a loved one goes missing.

The warning signs for Alzheimer’s

Source: Alzheimer’s Society of Ottawa and Renfrew County

Julie Ali · 
A very sad and true account of families struggling to care for family members with dementia or Alzheimer’s disease.

Hard for the person with dementia but also very tiring for caregivers who are always required to be guards for family members.

Better supports need to be in place to provide respite care for families struggling with care of family members with dementia or Alzheimer’s disease.
LikeReplyJust now
Grace Kamps Westra
Very good article.
LikeReply9 mins

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