Living with dementia: talking, responsive behaviours and staying safe

Marcel Lalonde is sixty-four, a retired paper-mill worker in Cornwall, Franco-Ontarian, a man who fixes anything with pliers. His wife, Lucie, is sixty-six, a retired grade-three teacher who still sings in the kitchen. Two years into her dementia, she asks what day it is twenty times an afternoon. Around dusk she gets restless and angry, and Marcel, patient all day, snaps.

So here's the question. What helps, day to day, when dementia is at home with you? And what does the evidence say about the ways of talking, and the drugs, people will offer? I'm not a doctor; this is general information, not medical advice. Never start, stop or change a medication on your own. That's a conversation with the doctor.

A Cochrane review from 2023, thirty-seven trials, found that cognitive stimulation, meaning enjoyable, social, thinking-based activity such as music or old photos, gave a small, short-term boost to thinking and communication. Moderate-quality evidence, the best in this area. Validation therapy has too few trials to judge, the reality-orientation review was withdrawn, and no trial shows that arguing, correcting or quizzing helps.

So when experts say go along with her reality, offer simple either-or choices, and gently redirect, label it honestly: expert consensus, not a proven treatment. Ontario calls the restlessness and repeated questions responsive behaviours, and a 2015 clinical review in the British Medical Journal found they usually have causes: pain, hunger, constipation, a noisy room, a new face, a rushed approach. Non-drug approaches come first.

Antipsychotics are sometimes offered for agitation. In a 2005 analysis of fifteen short trials, three and a half percent of people taking them died, against two point three percent on placebo: a small but real extra risk. In 2024, about one in four Canadian long-term care residents were on one without a psychosis diagnosis. If one is suggested, talk to the doctor and ask three questions.

The Alzheimer Society's Finding Your Way program says six in ten people with dementia become lost at some point, often without warning; it offers a free identification kit. MedicAlert's Safe and Found program gives a person identification that tells first responders who to call. In many Ontario regions, families can also ask Behavioural Supports Ontario directly. In an emergency, call 911.

Now, their side. For Lucie, a behaviour is often a message. She may be in pain she can't name, frightened by the fading light, bored, or lost in a room that's too loud. The repeated question isn't stubbornness; each time, it's new to her. It's fair to guess she wants to feel safe and useful. Try: would you help me fold these towels?

Let's change one fact. Lucie has moved into long-term care, and the team suggests a sedating drug for the evenings. Marcel asks the three questions. Could this be pain, infection, constipation, hunger, a noisy room or a new face? What non-drug approach have you tried? What's the plan, and the date, to review or stop the drug?

The mistake families make is correcting and quizzing. Don't you remember? It comes from love and exhaustion, and it can't work, because the memory isn't there to find. The other is going it alone. In data from 2015 and 2016, the Canadian Institute for Health Information found forty-five percent of dementia caregivers showed distress, against twenty-six percent of caregivers of other seniors.

Here's the rule, in one breath. Join her reality, look for the cause behind the behaviour, and treat any new pill as a question for the doctor.

This week, do one enjoyable, thinking-based activity together: a photo album, the songs from her twenties. Notice what she enjoys, not what she gets right.

Next time, protecting your parent: elder abuse, misuse of a power of attorney, scams, and who to call, even when the person causing harm is family.