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Woman's overnight death shines light on dangers of dementia

Malini Hall has found mattresses outfitted with restraints and makeshift contraptions assembled to hold elderly patients in their beds.

An occupational therapist, she works in the homes of Toronto residents who have dementia, helping to make their surroundings safer, and says that desperate spouses and children often confide that they have locked their loved ones in their bedrooms while they slept.

"People think at night, 'Maybe I can lock them in,' but it's really unsafe," said Ms. Hall, who works for Saint Elizabeth Health Care. "It can really backfire on you."

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The death of a 66-year-old woman found frozen on a Scarborough sidewalk early Monday morning has shone a glaring light on the worst nightmare of many of those caring for the 500,000 Canadians living with dementia: the possibility that their wife or father could wander off in the night, lost and confused.

Across the country, police blotters are filled with reports of missing elderly men and women, their disappearances reported to 911 by caregivers in the hopes that they will be found safe.

Janice McCaffrey, a competitive race-walker from Calgary who has represented Canada in three Olympic Games, is embroiled in a desperate search for her 85-year-old father, Hugh Turner, who has been missing in Mesa, Ariz., since Christmas Eve.

Although her father had not been diagnosed with dementia, several people reported spotting him in the neighborhood up to 24 hours after he was reported missing, suggesting that he was disoriented and unable to find his way home.

"We're of the mind that a cognitive event occurred to incapacitate him and make him wander off and be confused," Ms. McCaffrey said from Arizona on Monday.

Police, search parties and even a psychic group have been engaged in the prolonged search, which has plastered the city with 16,000 posters and is now focused on the surrounding desert.

But Ms. McCaffrey wishes her father had been wearing some sort of tracking device or bracelet, which are gaining favor with the families of dementia patients.

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"I know it's a terrible thing and people don't want to lose their independence and be tagged, but if anybody's got a family member that's pretty senior, you've got to do something," she said. "You don't ever want to go through this."

Technology is playing an increasingly prominent role in the safety of those with cognitive impairments, and will likely become even more prominent as the population ages.

The number of people with Alzheimer's disease and related dementias is expected to double in the next 20 years, and Mary Schulz of the Alzheimer Society of Canada said wandering will become a growing concern.

"We can expect the number of people who become lost and, sadly, perish, to go up," she said. "One of the things we need to think about as a country: Are we really laying this all at the feet of families?"

The Alzheimer's Society offers a program called Safely Home, which has 33,765 registrants across Canada. A $35 fee provides an ID bracelet, and a registration number that is added to a national database accessible by local police forces.

But Ms. Schulz said a national strategy on dementia is required, and that governments should play a role. This could include tax credits for families who make physical changes to their home to increase the safety of elderly residents, she said, just as home owners are reimbursed for environmental improvements to their properties.

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Families must also educate themselves about the disease, she said, and understand that someone who is used to rising at four a.m. throughout his or her lifetime of employment might revert to that habit in the throes of dementia.

"You have to plan for that," she said. "But it's so difficult. And no one family can do it all, no matter how devoted they are."

There are no Canadian statistics on how many people with dementia wander off each year, requiring police involvement. But in the United States, the National Alzheimer's Association's Safe Return program, similar to the Canadian registry, averages 500 calls and 150 wandering incidents per month.

In Texas, a Silver Alert program was implemented in 2007, modeled on the Amber Alerts used to notify law enforcement and media outlets about missing children. It is used whenever someone over the age of 65 who has dementia or another cognitive impairment goes missing.

Many Canadian regions have also started local chapters of Project Lifesaver, a U.S. organization that sells wristbands embedded with traceable radio beacons, similar to avalanche tracking devices.

The bands are sold for about $300 and are also tracked by local police forces.

Ken Snider, the chief of operations for Search and Rescue Society of British Columbia said his agency has done about five searches through Project Lifesaver in Victoria.

The devices reduce the average search to about 45 minutes from 8-12 hours, he said.

"The longest was three hours and that's because she got on a ferry," he said. "Once it took us a half an hour to find the guy but he was on a bus and it took us 15 minutes to catch the bus."

Mr. Snider said his agency has experimented with replacing the beacons with GPS units, which are popular with private companies selling devices to track dementia patients. But satellite positioning systems cannot find someone if they are inside or upside down, and their batteries must be regularly charged. The radio beacon lasts for 30 days, said Mr. Snider and is changed by Project Lifesaver volunteers, who he said take the opportunity to check in on their clients.

"The GPS thing has to come off every night," he said. "Think about what could happen when it comes off."

In Toronto, Ms. Hall said many low-tech solutions can prevent people from leaving the house unnoticed.

She has plastered homes with signs, reminders about which door leads to the bathroom and which to the front porch. She has advised her patients to install a bell on the bedroom door that will wake up a spouse if disturbed, or to set up a motion sensor at the front door that will trigger an alarm.

But taking these steps can be difficult for families, she said, who are struggling to come to terms with a diagnosis of dementia.

"They're already dealing with emotions of their loved one changing, and to have to implement all these things, it's just overwhelming," she said.

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