Shadowing in dementia

What is shadowing in dementia?

Shadowing is when a person with dementia follows someone around like a shadow. They usually follow their main caregiver around and want to be with them all the time. While some caregivers may be okay with this, it’s common and perfectly okay to feel suffocated.

Shadowing behaviour is often just part of their dementia and may be accompanied by behaviours such as wandering or checking. 

Signs of shadowing behaviour include:

• Following you from room to room.
• Wanting to know where you are or where you are going all the time, even if you are just leaving the room. If you don’t live together, they might call you frequently to run through everywhere you are going to be that day and what time you will be home.
• Becoming agitated when they can’t see you, they may search for you or call for you, even if you’ve only been out of sight for a moment.
• Getting in your personal space or disregarding boundaries, like talking to you when you’re on the toilet.

Why do people with dementia shadow?

Shadowing is usually borne from fear of being alone. People living with dementia can experience a whole host of symptoms that prompt this, including:

• They feel anxious a lot of the time. They may worry a lot that something has happened to you or that you’ve left them and want to be near you, or they just find your presence reassuring.
• They have difficulty with problem solving so cannot analyse situations and respond to them alone (even small things like answering the phone).
• They struggle with facial recognition and you are someone they are sure that they know and can trust.
• They have lost a lot of self-confidence.
• They experience hallucinations and feel afraid when you are not there to tell them what is real.
• Their dementia makes them feel disorientated so moving about is more difficult and they don’t want to lose you and not be able to find you.
• Their poor memory has meant that they have not been able to maintain activities and friendships that they once had so now you are one of the few people in their life.

Your loved one’s shadowing behaviour might be worse at certain times of day, such as in the morning when you used to leave for work or at sunset if they experience sundowning.

How can I manage shadowing?

These tips can help the person who is shadowing to feel safer alone and may help prevent shadowing behaviour if you start them early.

Reassure them that they are safe

It can be really hard not to snap at your  loved one to leave you alone if they have been tailing you all day, but doing so could make them feel more alone and magnify their behaviour. Instead, try to recognise that they are feeling anxious or alone and comfort them. You may want to set up ways for them to know that you are always there if you need, such as a dementia mobile phone or something they can use to get your attention, alarm pendant or even a noisy object like a bell or rattle.

Find something for them to ease their nervous energy with

Like wandering, shadowing can be a release for people with dementia who are full of nervous energy. Finding ways for them to exercise can help this, such as going for a walk each day or buying exercise equipment that they are able to use comfortably.

As they can’t exercise all day, you may need other outlets for this energy. These can keep them occupied and be relaxing and therapeutic. They might enjoy arty pastimes like knitting, latch hook rug making or adult colouring books, or prefer gardening, model trains or music. If your loved one was (or is) a smoker, keeping their mouth occupied can be calming, so they may benefit from chewing gum or dementia jelly drops.

Help them to feel safe and independent in their environment

As well as adapting your home to support a person with dementia, you can help them to feel reassured that they are safe and cared for in their home, even when they can’t see you, and capable of doing some things without you.

This could be photos of you, recordings of your voice or a chart saying where you are and how long you’ll be. It could also be easy-to-read instructions on how to do they things they often ask of you pinned around the home, and the answers to questions they often ask you.

Provide structure

A routine can be very beneficial to anyone, particularly those with memory problems. They will be more likely to remember what they are doing that day and so build their confidence, as well as feel safe that they know what you’ll be doing that day and where you’ll be.

You could try to get them involved in day care for adults, dementia singing groups and other meaningful activities. It may not always be feasible, but trying to have your own routine that they can rely on can help too. Have somewhere that they can reference both of your activities whenever they’re unsure, such as a family calendar. The Alzheimer’s Society sell large-print calendars.

Bring more trusted people into their life

Widening their circle of people whom they can rely on will give you more breathing space. Friends and relatives may be happy to offer regular support, but in order to keep a routine, this might be too much of a commitment for them. You could start looking into companionship care, someone who can take your loved one out and about and who will become a trusted friend. There is also a Befriending Service run by the Alzheimer’s Society.