It is not defiance, and it is not aimed at you
Around five or six in the afternoon everything unravels: your mum gets anxious, wants to leave, keeps saying she has to go home — while she is at home. At night your dad gets dressed and walks out the front door. This is not defiance and it is not aimed at you.
When agitation builds towards 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 people 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 medicine or an interaction;
- dehydration, poor sleep, or uncorrected hearing or vision.
A GP review and a simple urine test sometimes save months of behaviour wrongly put down to the dementia.
What genuinely helps at home
- Light before dusk. Switch 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 towels, setting the table, a walk before tea. Walking spends the agitation instead of containing it.
- Make the home safer without locking someone in: slide bolts high and out of the line of sight, sensor lights, door chimes, a GPS tracker. Tell the neighbours, and keep a current photo and a written list of the places she might head for. Free support is available through the National Dementia Helpline and Dementia Support Australia, which helps families with exactly these behaviours.
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 dementia unit: closed, but with room to walk freely indoors, a secure garden and staff trained in changed behaviours.
Questions to ask on the visit
- Is the unit secure, and can residents walk a loop inside and get out into a safe garden?
- How many staff overnight, for how many residents? Care minutes are reported per home — ask for the figure and check it alongside the star rating.
- 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 position on restrictive practices — including locked doors, restraint and psychotropic medication? Each requires assessment of alternatives, informed consent, documentation in the care plan and regular review. Ask how many residents in the unit are on psychotropics and why.
- 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 available place in a secure dementia unit is much harder than finding an ordinary room — and it is exactly what families worn down by sleepless nights need. Curalune Care Help (A$109) 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 doctor.*