W is for Wandering?

In the run up to publication of my new book Carers and Caring; the One Stop Guide; how to care for older relatives and friends I am sharing some of the practical solutions learned from research and experience. If you think any problems have been missed you can email me and tell me, and I’ll make sure they are covered in the next edition and online on my website at www.juneandrews.net. 

Wandering

Some writers about dementia are very emphatic that this is the wrong word for the behaviour when someone, confused and possibly living with dementia, becomes lost. This is because it seems to them that ‘wandering’ is a word that suggests the person is moving aimlessly. In fact the person usually has an aim, but circumstances suggest that it is risky or inconvenient for everyone else because they lose their way, get into danger, or go out at a strange time in the wrong clothes. The person with dementia might feel they are going to work, to a job from which they retired decades ago. They might think they are going to the school gate to pick up their children, who are grown up and have children of their own. The person might be heading out in the snow in their shirtsleeves in the middle of the night, risking death from cold, but they might have a clear idea of what they want to do. They might be responding to an overwhelming need to get away from their current discomfort. The politically correct terms I see include ‘walking about’, ‘unwanted exiting’, ‘elopement’ and ‘walking with purpose’. Families tend to call it ‘wandering’ or just “going missing”. 

When someone you care goes missing

The worst nightmare of caring for a vulnerable person is if they go missing. Many carers will tell you about multiple incidents. The mixture of relief and anger when they return is sometimes channelled into trying to make the house as secure as a fortress to make sure that it doesn’t happen again, which may only cause frustration and anger in the person who wants to walk out and about. They redouble their efforts to get away.

It can be useful to take a smartphone photo of the person each morning when they are dressed, in case later in the day you are asked to circulate a description of what they are wearing. As a carer there may be days when you can’t even describe what you yourself are wearing, so it’s no wonder you’d forget. People who go missing often go back to places they used to frequent, like a previous house, or back to the school to pick up the children, or back to work.

The blog on the Herbert Protocol describes a useful system that may exist in your area. It is based on some basic principles: the sooner you look for the person, the more people are looking and the more you know about their habits, the better your chance of finding them. Providing some biographical details, such as where the person usually likes to hang out (for example, their favourite café or shops), and a recent photograph allows the central control to send out an alert to many people to let them know that your person has gone missing. They suggest spending less than ten or fifteen minutes looking around the house and garden or street yourself before calling for help. You probably know that on average a missing adult usually turns up within twenty-four hours, and so the police are often reluctant to start a search within that time. If the person is registered on the protocol the police don’t hesitate to start looking for them immediately. 

The protocol would be less necessary if people carried locator devices. For example, family members can download an app on their smartphone which will allow them to locate each other on the phone’s map within a few yards. That has the advantage that you can look at where they are and decide either not to worry or to go and retrieve them. It is sometimes called geofencing, because you can get an alert if the person goes beyond a boundary that you have agreed is safe. One problem is that the person you care for might go out without their phone. There are alternative locator devices, including those that look like a wristwatch or can be inserted into a shoe or other item of clothing. This makes them less likely to be left behind, but there are no guarantees. You will find more about this equipment on the AskSARA website, details in the Useful Contacts and Resources in the book and a link to the Herbert Protocol on your local authority website. 

Three hints:

1.     Have an emergency plan after the first incident

2.     Introduce a locator device early on

3.     Join the Herbert Protocol