Go to the Globe and Mail homepage

Jump to main navigationJump to main content

(Christinne Muschi for The Globe and Mail/Christinne Muschi for The Globe and Mail)
(Christinne Muschi for The Globe and Mail/Christinne Muschi for The Globe and Mail)

Community, not technology, is what people with dementia need Add to ...

Early Monday morning, the frozen body of 66-year-old Judy Tak Fong Lam Chiu was discovered on a sidewalk just a few hundred metres from her home in suburban Scarborough, Ont.

Six days earlier, the frozen body of 88-year-old André Marchand was found along the shore of Rivière-des-Prairies, a stone's throw from the nursing home where he lived in the Cartierville district of Montreal.

More related to this story

Ms. Chiu and Mr. Marchand both suffered from Alzheimer's disease and were prone to wandering.

That common problem is the bane of every Alzheimer's caregiver: You are there, standing on guard 24/7, but turn away for a minute or try to grab a quick nap and suddenly your loved one is gone. When it happens at 4 a.m. in the dead of winter, it can prove deadly.

There are hundreds - nay, thousands - of these cases on police blotters every year. Very few are reported in the media.

That is because only a minority end in such visibly public tragedy, as in the cases of Ms. Chiu and Mr. Marchand.

But when deaths do occur and the angst-ridden stories appear, the reaction is predictable. We need better technology to protect these poor souls.

For instance: Why don't we slap a GPS (global positioning system) ankle bracelet on every person with Alzheimer's disease, the way we do with criminals who are under house arrest? The Montreal police have seriously considered this idea because searches of missing Alzheimer's patients consume so much of their time and resources.

Why don't we equip people with dementia with a wrist band embedded with a traceable radio beacon, the devices that backcountry skiers wear in case they are buried under an avalanche? Project Lifesaver, a non-profit group, sells these bands for about $300. The group has several chapters in Canada.

There are also sensors that can track a person's movements around the home, remote video monitors, door alarms and computerized pillboxes, to name a few other bells and whistles.

Another initiative is the Silver Alert program, which is modelled after the Amber Alert, and is activated when a person with dementia goes missing.

The Alzheimer Society of Canada has a program too - Safely Home - which consists of a low-tech ID bracelet with a number that is in a national police database. It distinguishes itself in that it requires actual human interaction.

These devices and programs are well intentioned and sometimes useful. Statistics show that about half of wandering dementia patients die if they are gone more than 12 hours. Tracking devices can bring that time down to under an hour, and Silver Alerts can entice people to open their eyes and ears.

But shouldn't our eyes and ears be open to those around us at all times? Especially the most vulnerable? Isn't that an integral part of being a citizen?

One of the most pitiful aspects of Ms. Chiu's story is that, before she succumbed to hypothermia, she had screamed for help, tried to enter neighbours' homes and clawed at the door of the car right beside where her body was found.

Nobody came out to see why a little old lady with no coat was screaming or why there was a rattling at the door. Nobody called the cops.

Toronto police Sergeant David Dubé stated the issue bluntly: "As a community, we have an obligation to look after each other."

You can imagine people were busy - in front of the TV, the computer, maybe on the phone.

The cacophony of daily life, it seems, has left us inured to cries from the heart.

Yet those cries are going to become ever louder and more frequent. The number of people living with Alzheimer's and related dementias stands at about 500,000 today and is expected to rise to 1.1 million by 2038.

For how long can we remain willfully blind to their presence and needs?

The deaths of Ms. Chiu and Mr. Marchand remind us too that many people today are essentially neighbourless. They are merely anonymous occupants of houses. This isolation is particularly hard on the frail elderly, those with dementia and their caregivers.

They are people who desperately need a sense of connectedness. Paradoxically, in our wired world, where we are connected to gadgets such as BlackBerrys 24 hours a day, real relationships and real communities are increasingly more difficult to forge. The distance between us can be measured in terabytes.

But what is community?

John McKnight, director of the community studies program at Northwestern University in Chicago and author of the seminal work The Careless Society: Community and Its Counterfeits, gives this definition: "To some people, community is a feeling, to some people it's relationships, to some people it's a place, to some people it's an institution."

But the definition Prof. McKnight prefers is: "Community is a place where people prevail."

Building community takes determined effort - time and money and effort and a conviction that there is a social contract. It blossoms out of parks, rec centres, churches and schools and the subtle gestures such as introducing yourself to the neighbours.

Still, the investment in community is worth it: It's not a place where our elders freeze to death in plain sight.

We need to recognize that people with such brain diseases as dementia - as well as those with psychiatric illnesses (schizophrenia) and developmental disabilities (autism) - are part of our lives and our communities, and will continue to be in ever-larger numbers.

We don't need to track their movements with electronic gadgets or lock them up. Rather, we need to help them become engaged as citizens, and do so ourselves, with all the rights and responsibilities that entails.

Technology is no substitute for community.

Follow us on Twitter: @Globe_Health

In the know

Most popular video »

Highlights

More from The Globe and Mail

Most Popular Stories