Today is D for Distressed behaviour in older people. 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 an A to Z of 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. 

D for Distressed behaviour

If the person you are caring for has dementia, or another condition that makes communication difficult, from time to time they will display behaviour that is a result of distress. That distress may be caused by noise or other disturbance. It may be that they are in pain or that they’re lonely or unhappy for some reason that you have yet to discover. They express this through behaviour. This behaviour can present as aggression, agitation or anxiety. It makes life very difficult for carers, and that’s why it is sometimes called ‘disturbing’ behaviour.

When my mother was in the first care home, she used to bang on the windows and doors, night and day, shouting to be let out. They tried to stop her, but nothing seemed to work and they asked her to leave. At the next care home that behaviour stopped. The staff knew how to keep a calm environment and how to distract her. (Davina, daughter of Irene, 67 with Young Onset dementia)

The care workers took the trouble to find out all about Irene. They discovered that before she went to stay in the care home she was a keen gardener and hill walker and spent time outside no matter what the weather. They devised a routine of getting her into outdoor clothes and shoes immediately after breakfast and taking her out for a walk until she was tired and wanted to come back for a cup of tea and a rest in the chair. Later in the day, if she was trying to leave, a quick turn around the garden was usually enough, or she could sit out there if the weather was good enough. In season, they encouraged her to work in their greenhouse, sowing seeds in pots or planting out. The distressed and distressing behaviour was a result of feeling trapped. The first home tried to reduce the behaviour by getting her to sit quietly and considered sedation. It was good that Irene ‘escaped’ that setting.

When you are faced with these problems at home you need to reach for help. There are addresses of websites where advice is given in the useful contacts and resources section in Carers and Caring the One Stop Guide. There you will find ideas for keeping a calm environment. In some care settings the staff use sedatives prescribed by the doctor to control this kind of behaviour. This is not ideal because it can give rise to sleepiness that causes falls and injuries. Training is now given for staff to help them understand how they can, through activities and environmental changes, reduce distressed behaviour. There is no room to outline all of these here in this section, but you will find lots of ideas on the website of the Dementia Services Development Trust, which also gives information about some helpful literature. There is also useful information on my website www.juneandrews.net You can use the enquiries form on that website for specific problems.

This kind of behaviour is exhausting for any carer, and if there is any aggression then it’s very important to remove yourself from danger. Don’t try to restrain the person because both of you may become injured in the process. In all the advice given about how to deal with it, the most common solution is to provide the person with plenty of exercise and prevent them becoming bored. Exercise seems to help people calm down, and maybe a friend can help by regularly taking them for a walk. You do need to discuss this with the doctor, or the community psychiatric nurse if you have one.

There is much more about how people behave in  Carers and Caring: The One-Stop Guide: How to care for older relatives and friends - with tips for managing finances and accessing the right support  available from all good bookshops from May 2022

Three hints:

1.     Distressed behaviour is common

2.     You can prevent, reduce or stop if it if you know the cause

3.     Get help from clinical staff and ideas from websites