It is not defiance, and it is not aimed at you
Around five or six in the evening everything comes apart: your mother gets anxious, wants to leave, keeps saying she has to go home — while she is at home. At night your father gets dressed and walks out the front door. This is not defiance and it is not aimed at you.
When agitation builds toward the end of the day it is called sundowning; when the person walks without purpose or tries to leave, wandering or exit-seeking. Both are common in dementia: the day's fatigue, fading light, hunger, pain and slipping orientation combine into something the person can no longer manage.
Rule out a physical cause first
Agitation that appears suddenly over a few days is almost never the normal course of the disease. The usual causes:
- a urinary tract infection — in older adults it often shows up as confusion alone, with no fever and no pain;
- pain that is not being expressed: arthritis, constipation, a tooth, a pressure injury starting;
- a new medication or an interaction;
- dehydration, poor sleep, or uncorrected hearing or vision.
A doctor's visit and a simple urinalysis sometimes save months of behaviour wrongly blamed on the dementia.
What genuinely helps at home
- Light before dusk. Turn lamps on early and close the blinds so reflections do not frighten. Darkness arriving is the single most common trigger.
- A steady routine: same times, same order, same faces.
- No late naps, no caffeine after mid-afternoon.
- Do not argue with the reality. Joining the feeling instead of correcting the fact is not lying; it avoids suffering that achieves nothing.
- Fill the late afternoon: folding laundry, setting the table, a walk before dinner. Walking spends the agitation instead of containing it.
- Make the home safer without locking someone in: slide bolts placed high and out of the line of sight, motion sensors, door chimes, a GPS tracker. Tell the neighbours, and consider registering with a local wandering-response programme such as MedicAlert Safely Home, which links a bracelet to police records — many people are found because someone had the information in the first ten minutes.
When home is no longer enough
The question is not "am I abandoning them." It is: can I guarantee safety at night? If the person leaves while everyone is asleep, if they have already been found outside, if you have not slept properly in weeks, the honest answer is often no — and that is not a failure.
What you need then is not just any home but a secure unit (often called memory care or a special care unit): closed, but with room to walk freely indoors, an enclosed garden and staff trained in responsive behaviours.
Questions to ask on the tour
- Is the unit secure, and can residents walk a loop inside and get outside into an enclosed garden?
- How many staff overnight, for how many residents? It is the number that matters most and the one least often volunteered.
- What do you do when a resident wants to leave at three in the morning? ("We walk with them" is a better answer than "we take them back to bed.")
- What is your policy on physical restraints and on antipsychotic medication? Provincial legislation restricts restraint use and requires consent and review, and the share of residents on antipsychotics without a diagnosis is a reported indicator — ask for the home's figure.
- How do you shape the late afternoon — lighting, activity, mealtimes — for residents who sundown?
If you need to move quickly
Finding a home with a genuinely open bed in a secure unit is much harder than finding an ordinary room — and it is exactly what families worn down by sleepless nights need. Curalune Care Help (CA$99) puts together, usually within 24 business hours, a shortlist of 3 to 5 homes that fit — secure unit included where needed — with direct contacts and the questions to ask.
*General information, not medical advice. Any new or sudden agitation should be evaluated by a physician.*