Supporting a loved one with dementia can be challenging. It is not only heartbreaking to watch your loved one change, but also upsetting to witness them exhibiting uncharacteristically problematic or antisocial behaviour. And sometimes, it can be hard not to get frustrated or embarrassed by this challenging behaviour, particularly when it occurs in a public place. In this article we discuss some of the challenging behaviour dementia can bring on, as well as nine strategies to deal with social embarrassment in dementia.
What is dementia?
According to Dementia Australia, dementia is not one specific disease but a collection of symptoms caused by disorders of the brain. More than 100 diseases are known to cause dementia, with the most common types being Alzheimer’s disease, vascular dementia and dementia with Lewy bodies.
While dementia is most commonly associated with memory loss, it can also cause a range of other symptoms. These include:
- impaired planning and problem-solving abilities
- difficulty completing everyday tasks
- confusion about time or place
- trouble comprehending distances, depth and space in our surroundings
- difficulty with speech, writing or comprehension
- decreased or poor judgement
- changes in mood and personality.
What are some of the challenging behaviours of dementia?
Unfortunately, dementia can give rise to a series of challenging behaviours that can be both upsetting to witness and difficult to manage. When they happen in public, these behaviours can cause social embarrassment for both the individual and their carer, particularly if the challenging behaviour is directed at members of the public.
Challenging behaviours are usually uncharacteristic of the person, and may include any combination of behaviours that are either dangerous to the person themselves or the people around them, or considered antisocial. Importantly, these behaviours differ from the general frustration that a person may experience as a result of dementia.
Some of the challenging behaviour dementia patients can exhibit includes:
- Physically aggressive behaviours, such as hitting, kicking and biting;
- Verbally abusive behaviours, such as shouting at others (e.g. telling a stranger they are doing something wrong);
- Destroying theirs or others’ personal belongings or other objects;
- Being agitated, angry or catastrophising;
- Hoarding;
- Inappropriate sexual behaviours;
- Wandering; and
- Being excessively clingy and shadowing others.
Dementia affects everyone in different ways, which makes it difficult to predict which, if any, of these behaviours your loved one may experience. Furthermore, the precise cause of these behaviours isn’t always clear. While some may be caused by changes in the individual’s brain, others may be the result of changes in the person’s environment, health or medication. The type of challenging behaviours your loved one exhibits will likely also change over time as their dementia progresses.
Nine strategies to respond to challenging behaviours caused by dementia
When a loved one exhibits challenging behaviours in public, it can not only be upsetting, but also cause social embarrassment. Even the most patient carers can sometimes be frustrated or embarrassed by certain behaviours.
Below are nine strategies that can help carers and other family members or friends respond to the challenging behaviour dementia can cause, as well as help alleviate some of the social embarrassment that can come along with these behaviours.
1. Remember it is not your loved one’s fault
When you are frustrated and upset it can be difficult not to blame your loved one for their behaviour. But it is important to remember the challenging behaviours are not your loved one’s fault, and that they may be frightened and confused about the behaviour they are exhibiting. Getting angry or frustrated with them will only make the situation worse. Instead, take a moment to try and be empathetic and imagine how they might be feeling.
2. Remain calm
Staying calm is easier said than done, particularly if the person’s challenging behaviour is directed at you or a member of the public. However, it is important to stay calm and not aggravate the situation by getting angry with your loved one. Instead, try and ask them calmly to stop the behaviour, or draw on another strategy (such as the ones outlined below) to change the situation.
3. Ignore the behaviour
Depending on the severity of the behaviour, ignoring it can be a helpful strategy. While this won’t work for more aggressive behaviours that need to be stopped, it can be useful for milder behaviours that the person will likely stop of their own accord if given enough time. For example, this could be helpful if your loved one is asking repeated questions, or talking about something inappropriate in a way that won’t affect others.
4. Distract the person or move them away from the situation
Challenging behaviours can sometimes be successfully managed by distracting the person. For example, if they are getting frustrated and angry about something, try acknowledging their concerns and pointing something else out in the immediate environment or changing the conversation. This can help to reduce the behaviour by focusing them on something different.
If distraction doesn’t work however, you may need to move them away from the situation altogether. This is particularly important for more aggressive behaviours, such as verbal or physical abuse of others, or if your relative or friend is becoming highly distressed. To reduce any feelings your loved one may have of being moved away unfairly, or without their consent, try and move them away from the situation as kindly as possible.
5. Apologise to people around you
If your loved one has directed their behaviour towards a stranger, the best way to deal with the social embarrassment caused is by simply apologising to the person. If you feel the need, you could let the individual know that your loved one has dementia, and that is what caused the behaviour. The majority of people are understanding and will likely accept the apology without fuss.
It is important to keep in mind that apologising to the person and explaining your loved one has dementia, in front of your loved one, may make your loved one uncomfortable or angry, prompting more challenging behaviour (e.g. denying that they are sick). If this is a concern for you, try apologising to the stranger out of earshot of your loved one.
6. Identify behavioural patterns and triggers ahead of time
One of the most difficult parts of dealing with social embarrassment in dementia is not knowing when challenging behaviour is about to occur. Things can be going along well, and then suddenly your loved one reacts to something seemingly out of the blue. Learning to identify patterns in your loved one’s behaviour, and being aware of what triggers the challenging behaviour can help you be more prepared to respond effectively to the behaviour. Keeping a diary for one or two weeks to track their behaviour and answer the following questions can be helpful:
- Do certain behaviours happen at a particular time in the day?
- Do certain locations trigger a particular type of behaviour?
- Do certain activities trigger a particular type of behaviour?
- Are certain behaviours triggered when your loved one is asked to do something they don’t want to?
- Is there anything in their home environment upsetting your loved one that you could easily change?
7. Take note of what strategies help calm the person
As well as keeping track of when behaviours are likely to occur, and what sets them off, it is a good idea to keep track of which strategies work best to calm the challenging behaviour dementia brings on. Different behaviours will likely require different strategies, and the same strategy may not work every time. However, it can be reassuring to have a strategy to fall back on that you know has worked in the past. It can also help you to respond more calmly and quickly to the situation.
8. Speak to your loved one’s doctor if their behaviour is changing
Challenging behaviour is a common symptom of dementia, particularly in the later stages as the illness progresses. However, it is important to keep your loved one’s doctor and care team up to date with changes in your friend or relative’s behaviour as these might signal an underlying health problem, or require particular changes to their care plan, such as an adjustment to their medication. The doctor will also be able to provide you with advice on the best way to manage your loved one’s behaviour.
9. Ensure your loved one is getting the care they need
While the challenging behaviour dementia causes is difficult to avoid, it is possible to improve your loved one’s quality of life by ensuring they are getting the care they need. In turn, this can help to reduce some of the challenging behaviour dementia causes which are the result of your loved one’s frustration and discomfort.
In addition to ensuring their living environment is appropriate for their needs, and their health is properly looked after, physical exercise, sensory activities and games are some of the best activities for dementia patients to boost happiness and improve their quality of life.
Resources
- Dementia Australia, 2022, Behaviour Changes
- Gavin J Andrews, 2006, Managing challenging behaviour in dementia
- Lifted Care, 2016, Dementia and embarrassing behaviour: how to cope
- NHS, 2021, Coping with dementia behaviour changes