Wandering and Getting Lost in Dementia

If someone you love has started leaving the house unexpectedly, or you're worried they might, this is one of the more frightening parts of dementia to plan for, and it's worth doing so calmly, in advance, rather than only after a real scare.

Why it happens

It's rarely aimless. Common underlying reasons include:

• A strong, purposeful feeling of needing to be somewhere, work, home, collecting a child, even if that need belongs to decades ago
• Genuine disorientation about time, believing it's a different time of day or a different point in life entirely
• Restlessness or discomfort they can't otherwise express
• Simply following a long-held routine, a daily walk, a familiar journey, that no longer fits safely into their current life

Understanding the likely pull behind it, rather than just the behaviour itself, often makes it easier to respond calmly and sometimes to prevent it happening again in the same way.

The Herbert Protocol: register this before you need it

The Herbert Protocol is a genuinely useful, UK-wide scheme used by every police force, named after George Herbert, a war veteran with dementia who died after going missing while trying to find his childhood home. It lets you register key information about your loved one in advance, a recent photo, physical description, medical details, and places they might realistically head to. If they ever do go missing, this means the police have everything they need immediately, rather than family having to recall crucial details while frightened and under pressure.

You can register online (search "Herbert Protocol" plus your local police force) or ask your local force for a paper form. It costs nothing, takes a few minutes, and simply sits ready in case it's ever needed.

Reducing the risk day to day

• A door sensor or chime that alerts you when an external door opens, inexpensive and widely available
• ID worn or carried at all times, a bracelet, a card in a pocket, with a contact number
• Keep a recent, clear photo easily accessible on your phone
• If a particular time of day tends to be riskier (evenings, for instance, are common), plan extra reassurance or a distracting activity around that time

None of this replaces genuine supervision where it's needed, but together it meaningfully reduces risk and buys valuable time if something does happen.

If it happens: what to actually do

1. If it's genuinely only been a couple of minutes, quickly check the most obvious nearby places, a garden, a neighbour's, the end of the street.
2. Don't wait long. Call 999 as soon as you're seriously concerned, you will not be criticised for calling too early, and the sooner a search starts, the better the outcome.
3. Tell the call handler you have a Herbert Protocol profile if you've registered one, this speeds up the response significantly.
4. Have a recent photo ready to send if asked.

A word from The Care Compass

This is a genuinely frightening possibility to think about in advance, but doing exactly that, calmly, before it happens, is what makes the difference if it ever does. A few minutes now can make a real difference to how quickly someone gets found safely.

This article is for general guidance only and does not constitute medical advice. If someone is missing and you're seriously concerned for their safety, call 999.

You don’t have to navigate it alone.