Behaviour changes in dementia
I spend a lot of time helping people to understand that in dementia most of the time a person is just themselves – maybe a bit slower or more easily confused and forgetful, but otherwise the same.
The dramatic images of dementia in the public imagination are difficult to shake off, and sometimes people think it can’t be dementia unless the person is behaving in wild, noisy, and difficult ways all the time.
In this blog I’m going to dive in and look at some of the most difficult behaviour changes that might be presented to family carers and professional caregivers. It’s as well to know about them in case they suddenly crop up, but there are many people with dementia who never have these problems.
“When someone with dementia does anything that makes you feel uncomfortable or distressed yourself, they are communicating with you. In a way they are communicating their own distress and discomfort. ”
Difficult symptoms could include the following eight problems described here, but there may be a lot of variation. When someone with dementia does anything that makes you feel uncomfortable or distressed yourself, they are communicating with you. In a way they are communicating their own distress and discomfort. Working out what is causing their problem is the first step, but you have to accept that sometimes it is impossible to say what the problem is, and you need to get help, and remove yourself from the situation until you feel well enough to try again. The most general point about reducing the behaviours that are symptoms of distress is that reducing stress almost always helps, and as a family carer, you may be in a good position to say what it is that is causing the upset.
Agitation – the person is restless and pacing, unable to sit or eat, or stop long enough to interact with you. They might resist strongly or fight you if you try to use touch to slow them down or get their attention.
Anxiety – the person show signs of terror, and can’t rest, desperately trying to get somewhere else, such as home, or even to a place that doesn’t exist anymore or is irrelevant like their work place or their child’s nursery when the child is now an adult.
Aggression – where their distress is leading to a storm of flight or fight reactions, and they misperceive you as a threatening stranger, or they know who you are but accuse you of trying to hurt them and they hit back at you.
Emotional distress – when the person is inconsolable, and suffering a wave of grief or loss that you can’t touch, and which you can’t explain.
Delusions – this is the word used when there is a fixed, false belief that cannot be shaken by explanation or logic, and which is causing harm and distress to the person.
Hallucinations – this is like a delusion in that it has no connection with reality, but it is where the person sees, or hears something that is not there. The worst is if it is something frightening or distressing.
Sleeplessness – for people at home sleeplessness in the person with dementia causes sleeplessness in the caregiver, who may be exhausted but still need to get up for work the next day. It even affects you if the person is in another place as they may make repeated telephone calls throughout the night.
Calling out and shouting – repetitive vocalisation can include the same question over and over, or chanting of distressing words that sound like a continuous call for help, even when there is no help that can be offered, giving the impression to others that the carer is ignoring or neglecting the person affected. There is no peace for anyone.
Over the next few blogs I am going to explore practical ways of dealing with these changes, which used to be called “disturbing behaviour” because the carers were definitely disturbed by it. Then it was called “disturbed behaviour” in a recognition that the person behaving this way was themselves responding to something in their environment. Now we generally called it “distressed behaviour” because anything that is done to reduce stress or distress can really make a difference.
Practical ways of reducing distress are covered in my following blog posts, but you can find a lot of that information already in Dementia the One Stop Guide, which is both in paperback, Kindle and an audio book.
