Wandering in Alzheimer's and Dementia: Prevention, Preparation and Technology

For families caring for a relative living with Alzheimer's or another form of dementia, one of the most frightening scenarios is that one day they leave home and cannot find their way back. The fear is well founded: according to the US Alzheimer's Association, 6 in 10 people living with dementia will wander and get lost at least once during the course of the illness, and it often happens repeatedly.

In this guide we look at the reasons behind wandering, the measures you can take at home, how technology can help and the steps to take if your relative goes missing.

Why do people with dementia wander?

Wandering is a behaviour caused by dementia itself; it is not stubbornness or carelessness. Common reasons include:

• Wanting to carry out a task from the past: Someone who retired years ago may set off for work; a mother whose children are grown up may go to collect a child from school.
• Disorientation: Not knowing where they are, even on a familiar route.
• Physical needs: Being unable to express needs such as the toilet, hunger, thirst or pain.
• Restlessness and anxiety: Feeling unsafe in a noisy, crowded or new environment.
• Sundowning: Restlessness and confusion that increase in the afternoon and evening.
• Wanting to "go home": Wanting to go to their childhood home even while in their own home.

Signs of wandering risk

• Difficulty getting to familiar places (the shop, a place of worship, a neighbour) and back
• Saying they want to go to a job they used to do
• Repeatedly saying they want to "go home"
• Restless pacing, being unable to sit still
• Difficulty finding rooms, the bathroom or the kitchen at home
• Coming back from a walk or a drive much later than expected

Measures you can take at home

Keep the routine

A regular daily routine (meals, walks, sleep times) reduces anxiety. Planning calming activities, especially in the afternoon, can ease evening restlessness.

Meet their needs

Regular reminders to use the toilet, enough water and food, and noticing possible pain can reduce the urge to wander.

Provide a safe place to walk

Rather than blocking the need to move entirely, it is healthier to offer a safe place to walk (a garden, supervised walks).

Adapt the doors

• Extra locks can be fitted outside the person's eye level (very high or very low).
• A simple chime or sensor that sounds when a door opens makes night-time exits easier to notice.
• Painting the door the same colour as the wall or hanging a curtain over it makes it less noticeable for some people.

Put away keys and car keys

If driving is no longer safe, keep car keys out of sight. Discussing this with the doctor makes the decision easier to accept.

Familiar objects and signs

Picture labels on doors (toilet, bedroom) can reduce getting lost inside the home and the restlessness that comes with it.

Preparing for the possibility of getting lost

However many precautions you take, the risk may not disappear completely. That is why preparing in advance is so important:

Identification

• Make sure they carry a card, bracelet or pendant with their name, a relative's phone number and the words "memory problems".
• The same details can be sewn into the inside pockets of coats and bags.

A recent photo

Keep a recent, clear photo of their face ready on your phone. It is the first thing you will show the police and people around if they go missing.

A list of familiar places

Prepare a list of places such as their old home, former workplace, the neighbourhood they grew up in, and the place of worship, park or shop they often visit. People who get lost often head towards places that were important in the past.

Neighbours and local shops

Let neighbours, the caretaker and nearby shopkeepers know about the situation. Leave your number so they can call you if they see your relative alone and confused.

How technology can help

Location sharing

Location sharing through a phone or smartwatch that the person always carries can greatly speed up finding them if they get lost. Important points:

• Consent: In the early stages of the illness, while the person can still decide, talking with them about location sharing is both ethical and practical. In later stages, the legal representative or the caring family makes this decision.
• Keeping the device with them: The best location technology is useless if the device stays at home. Build a habit of always carrying the phone or watch (a lanyard, a fixed pocket).
• Charging: Make charging the device part of the routine.

Safe zones

Defining the area around the home as a safe zone means you are notified when the person leaves it. This shortens the critical time before anyone notices they are missing.

In Koriva, the family is notified of arrivals at and departures from safe zones, and family members can see each other's location on the map; it works on Android and iPhone. Once the phone is set up, the person does not need to open the app. There is also a one-tap "I'm OK" on a simple screen and an emergency button. For the principles of location sharing, see our family location sharing guide.

First steps if your relative goes missing

For a person with dementia who has gone missing, the first hours are critical. Weather, traffic, falls and missed medication make it essential to act quickly.

1. Quickly check the home and the immediate area: Cupboards, balcony, basement, garden, stairwells, car park. People are sometimes hidden or stuck inside the home.
2. Check their location: If location sharing is on, look at their last location.
3. If you cannot find them within 15 minutes, call the emergency number (112 in the EU, 911 in North America, 999 in the UK). There is no need to wait; there is no 24-hour rule for reporting someone missing. Always tell the operator that the person has dementia.
4. Share the recent photo and details: The photo, what they are wearing, the list of familiar places, their medication.
5. Send people to familiar places: Their old home, former workplace, place of worship, park.
6. Have someone stay at home: The person may come back on their own or be brought home; someone needs to be there to answer the phone.
7. Tell neighbours and local shops.

When they are found, do not be angry or blame them; they are most likely frightened and tired. Reassure them in a calm voice, offer water and food, and then have them checked by a doctor.

Carers need care too

Caring for a relative with dementia is physically and emotionally exhausting. Being constantly on alert can lead to burnout:

• Share caring responsibilities within the family.
• Make use of support groups and associations for carers.
• Look into home care and day care services offered by local authorities and social services.
• Set aside regular time to rest yourself.

Conclusion

The risk of wandering in dementia is serious, but it can be greatly reduced with precautions taken in advance. A regular routine, adaptations at home, identification carried at all times, a recent photo, an informed network of neighbours and well-used location technology protect both your relative's safety and your peace of mind.

For more general information on keeping older relatives safe, see our article on elderly parent safety.