It is not stubbornness, and it is not aimed at you
Around five or six in the afternoon everything unravels: your mother becomes anxious, wants to leave, keeps saying she needs to go home — while she is at home. At night your father gets dressed and walks out of the front door. This is not stubbornness and it is not aimed at you.
When the agitation builds towards the end of the day it is called sundowning; when the person walks without purpose or tries to leave, wandering or walking about. Both are common in Alzheimer's and other dementias: the day's tiredness, fading light, hunger, pain and slipping orientation combine into something the person can no longer manage.
Look for a physical cause first
Before concluding "the dementia is progressing", rule out what can be treated. Agitation that appears suddenly over a few days is almost never the normal course of the illness. The usual culprits:
- 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 sore 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 day to day
- Light before dusk. Switch lamps on early and close the curtains so reflections do not frighten. Darkness arriving is the single commonest trigger.
- A steady routine: same times, same order, same faces. Surprises exhaust.
- No late naps, no caffeine after mid-afternoon.
- Do not argue with the reality. "Your mother died years ago, you can't go home" causes real distress; "we'll go later — come and sit down, I've made tea" settles things. Joining the feeling instead of correcting the fact is not lying; it avoids needless suffering.
- Fill the late afternoon: folding laundry, laying the table, a walk before supper. Walking spends the agitation rather than containing it.
- Make the home safe without locking someone in: bolts high on the door and out of the line of sight, movement sensors, a GPS tracker or bracelet — and tell the neighbours and the corner shop. Many people are found because someone local knew. Consider registering with the local police's vulnerable person scheme, and the Herbert Protocol form, which stores a photograph and the places the person might head for so police can act immediately.
When home is no longer enough
The question is not "am I giving up on 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 then need is not any care home but a secure dementia unit: a closed unit where residents can still walk freely indoors, with a secure garden and staff trained in distressed behaviour.
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 at night, 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 position on restraint and on antipsychotic medication? Who decides, and how often is it reviewed? Antipsychotics carry real risks for people with dementia and should be a last resort, reviewed regularly — not a standing prescription.
- 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 (£69) puts together, usually within 24 working 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 assessed by a doctor.*
