Changes in behaviour

Changing Behaviour

Predicting how someone will behave is incredibly difficult. There are many factors that influence how we might react to something. For example:

 When we consider the behaviour of people living with dementia, we need to take into account not only all of the factors that influence our own behaviour but also the way that dementia has affected that person.

Changes in memory may mean that a person with dementia starts to wake up early and attempt to go to work, even though they have been retired for many years. Forgetting can also make it difficult to recognise family members, friends, and their own reflection if the person they see is years older than they think that person should be.

Damage to other areas in the brain might make people more emotional, or change how they respond to particular emotions. Changes in brain structure and function might make people respond in ways that we don’t immediately understand.

Some of these changes might happen. Or they may never happen.

The way that a person with dementia behaves is a complex mix the life they have lived, the things they have learned, their desires and fears, their perception and their thought process in that moment.

It is impossible to know with certainty ahead of time how dementia will, or won’t, affect the way that a person behaves. What we have tried to do here is provide a brief overview of common changes in behaviour, and provide practical tips for how these changes might be supported. Where possible, we make links to outside sources where you can find extra support if you need it. As always, if you have questions, you can contact us.

Stress, Fear, Anxiety and Depression

There are a lot of reasons that people with dementia may experience stress. They may worry about how others will react to their diagnosis, or may feel uncertain about their future. They may feel stressed when they think about their need for support, and frustrated when they find something more challenging than they used to.

It is important to remember that stress, fear, and anxiety, can make it more difficult for people with dementia to think clearly. This, in turn, can create more confusion, more stress, and more fear. As people without dementia, it is often best to focus on what the person is feeling (like fear) and support them, rather than focusing on what they might be saying to express that fear.

We find the STOP acronym from Oldham Council helpful when supporting someone with dementia who is stressed and distressed. Try to:

STOP
S – See things from the point of view of person with dementia
T – Think about your own thoughts and feelings.
O – Observe and ask what the person is trying to communicate and what is going on
P – Be patient

Once the person with dementia is calm, take a moment to reflect on the behaviour. What did the person do? When did it start? What happened before? What helped to calm that person? These can all be important clues in understanding what is happening for the person with dementia. Remember to consider factors that might be less visible, ask yourself if the person might be unwell, if they may be experiencing pain, or if they have an infection.

It is also possible that the person with dementia is responding to something that isn’t there. Many people with dementia experience hallucinations. In her dementia diary talking about being admitted to hospital with pneumonia, Agnes talks about her hallucinations like this:

“It’s awful to be administered to without kindness.[…] Lower and lower I sink into this abyss, in this sea of loneliness, adrift with only my hallucinations for comfort. The hallucinations they’ve become more fierce, more I don’t know the word to call it, frightening. I now begin to pray for death, this is all too much for me.”

Several people with dementia talk about similar experiences with hallucinations in this booklet on sensory challenges in dementia, produced by the Life Changes trust. They say:

“I was looking at photos on the wall … I was frightened because the people in the photos were waving at me…“

Eddie

“I think I heard a noise in the house and I am up looking for it and there is nothing there…”

Alan

In these moments it is important to recognise that even if the person with dementia is responding to a hallucination, it is more important to respond kindly than to try and convince them that what they are seeing, smelling, tasting or touching isn’t real. Some people with dementia, particularly those with Dementia with Lewy Bodies, may also experience delusions. Delusions differ from hallucinations in that they are often a set of inaccurate beliefs, where the person might believe there is someone ‘out to get them’, or accuse the spouse of having an affair. Unforgettable gives a good rundown of common delusions and management techniques.

If someone with dementia is anxious for a long period of time, or seems to be depressed, seek advice from a healthcare professional. Many people with dementia experience anxiety or depression, but anxiety and depression are not part of dementia and be treated separately. You can also learn more about responding to distressed behaviour on the following websites:
Dementia support: understanding and responding to distressed behaviour
Understanding Behavioral Changes in Dementia
Coping with dementia behaviour changes

Frustration, Irritation and Aggression

Many people living with dementia will have times when they feel frustrated and irritated. For some people, this may escalate to the point where they express this through verbal or physical aggression. Episodes of aggression can be upsetting and frightening, both for the carer, and for the person with dementia themselves, and so it is important to look for clues that might indicate the cause of the behaviour and take steps to address it.

There are a number of reasons that a person with dementia may become frustrated or angry. Just as with periods of anxiety, it is important for the person without dementia to do their best to remain calm when providing support. There are several things to keep in mind when someone becomes frustrated:

Although it is difficult to predict what might make someone with dementia frustrated, there are a few common triggers that are worth thinking about once the moment has passed.

What happened before the incident? (What was the person doing? What was happening around them? What was about to happen?)

Was anything said before the incident? (When thinking about this question, remember that people with dementia often take longer to process spoken information and instructions, so don’t just think about the words that were spoken immediately before they became frustrated. Many instances of anger and aggression occur when someone is experiencing or expecting personal care, such as assistance showering, or toileting, for example. For others, however, incidents of frustration can be traced back to feeling ‘interrogated’, and becoming frustrated when they cannot answer the questions asked of them)

How was the person feeling? How are they now? (Often people with dementia can become frustrated or angry if they feel as though they have no choice or control in their lives. Consider if anything has changed recently, if the person has had their routine interrupted, if they slept badly the night before. It may also be worth checking whether the person has started or finished any medication recently, and consider if there might be an underlying illness or condition which might be causing them pain).

What has the person been doing? (For some people, being bored can lead to frustration, which may escalate into anger and aggression. Consider if the person has enough opportunity to engage with activities, to access the outdoors, or to exercise)

In some cases, it may be extremely difficult to figure out what causes an episode of frustration. Consider making a small note of the above information after each incident- sometimes looking at them together after a period of time might reveal a pattern that you cannot see in the moment. If the person often becomes frustrated in the same room, for example, consider whether something in that room might be contributing to the behaviour (is there too much stimulation, or is it too dark for them to see clearly etc.).

If you are struggling to manage incidents of frustration, anger, or aggression, it is a good idea to seek support. Consider calling the Admiral Nurse hotline on 0800 888 6678 which is open 9am-9pm on Weekdays and 9am-5pm on Weekends. You may also find it helpful to join the carers forums hosted by the Alzheimer’s Society, or Carers UK. You can also talk directly to your GP about accessing more support. 

Uninhibited or ‘rude’ Behaviour

For some people, the effects that dementia has in the brain can lead to the person becoming less ‘inhibited’. This is particularly common in frontotemporal dementia, where damage to the frontal lobes (which manage self control). Someone with damage to this area of the brain might begin to act in ways that make sense to them, but are distressing or embarrassing to others. This is particularly true if the person was more reserved before diagnosis, as this might be mistaken for dementia “winning”.

It is not difficult to understand why talking about, or managing, uninhibited behaviours resulting from dementia might be embarrassing and upsetting- especially for family members and carers. As with the other changes in behaviour, however, it is important to remember that these changes are a symptom of dementia rather than anyone’s fault. Nevertheless, there are several factors to consider.

What is the person doing?

If the person with dementia is undressing publicly, consider what this behaviour might achieve. Might the person be too hot? Might the clothes they are wearing be uncomfortable (consider the tightness of the waistband, for example).

If the person is attempting to touch others, consider whether they are receiving touch. All humans need some element of human touch, but as we age, our opportunities to touch others become more restricted. For people with dementia, this may be further reduced when they enter residential or hospital care, where touch is usually associated with meeting a physical need (such as personal care or assistance with eating etc.).  If you suspect this might play a role in the behaviour, consider adding more opportunities for touch into their routine, such as providing hand massages or manicures, or physical interaction such as hugs, pats on the arm, or hand holding (where appropriate and welcomed by the person themselves).

If the person is behaving in a way that is sexually inappropriate (such as by masturbating in a public space, or attempting to interact with non- consenting others in a sexual way). Remember that developing dementia does not mean that the person loses all desire for sex or intimacy and that many couples continue to have an active sex life after a partner is diagnosed. This can make these types of behaviours particularly frustrating, both to the person with dementia and to those around them as:

The person with dementia may see nothing wrong with their behaviour.

Those without dementia may be embarrassed or angry when the behaviour occurs, or resist talking about it later.

It is important to remember in these moments that the behaviour is a symptom of dementia, and not a deliberate attempt to anger, or embarrass, anyone. The way that we build intimate relationships and communicate with our partner is incredibly complicated, and often built up over time. Could their behaviour be a misunderstanding? Might they think that the other person is indicating interest or willingness? Considering these questions might make it easier to understand their perspective.

It is also worth asking whether the person’s behaviour is actually sexual. For example, it is possible that a person who seems to be touching their genitals through their clothing is not indicating desire, but a need to use the bathroom. Undressing can be caused by discomfort, including tight clothing, itchy seams, or a reaction to washing detergent and so on. If the person is seeking pleasure, consider redirecting them to an appropriate location (the bedroom, for example) rather than attempting to stop the behaviour entirely.

If you have further questions about sexual intimacy, or sexual behaviour, the Alzheimer’s Society provides a good guide or you might call the National Dementia Helpline on 0300 222 11 22 for advice.

Summary

Although managing changes in behaviour can be challenging, it is important to begin by trying to understand why the person with dementia may be behaving in that way. Behaviour is always a method of communication, and it always carries some form of meaning- even if that meaning is simple (such as ‘I am content’, or ‘I am tired’).

Because behaviour is individual to each person, it is important to begin by getting to know that person as well as you can. Look beyond their illness, to the life that they are living now and have lived before: sometimes behaviour that makes no sense ‘now’, makes sense in a previous context (like trying to leave the house at a certain time for work).

Understanding the behaviour of people with dementia requires patience, and willingness to persevere over time. Try to be kind to both the person with dementia, and yourself, and do not hesitate to seek support if you need it. Organisations you may find helpful include:The Dementia Helpline on 0800 888 6678 , Alzheimers Scotland on 0808 808 3000, The Carers UK forum or talk to your Dementia Link Worker, GP or other Healthcare Professional.

Read more about behaviour for people with dementia through the DSDC resources. If you live in Scotland you can request the 10 Helpful Hint series for free, thanks to funding.

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