It’s common for someone with dementia to occasionally act in an odd or embarrassing way with their carer. Here’s why it might happen and tips on how to handle it…
If you care for someone with dementia, chances are you’ll have experienced one of those cringe-inducing, face-reddening, ground-swallowing moments where a loved one has done something that’s really quite embarrassing.
It can happen frequently, particularly in public situations, with certain types of dementia and when there are lots of strangers around.
Why does it happen?
In many cases, the embarrassing behaviour can occur because the part of the brain that controls inhibitions has been damaged by their dementia. This means they have lost the ability to recognise social ‘cues’ or ‘stoppers’ to certain types of behaviour such as bad language, lewd comments or nudity.
It can be particularly common in frontotemporal dementia (sometimes known as Pick’s disease) because this condition damages the frontal and temporal lobes, which control personality and behaviour.
However, it can sometimes be a result of boredom, being confused or disorientated, or not being able to communicate a need properly such as needing the toilet or being too hot.
Sometimes, if someone with dementia is living in a particular time period or moment, they may behave improperly because at that particular time, that was accepted. For example, inappropriate sexist comments or racial slurs, which may have been ignored or accepted as the norm 60 years ago.
How to deal with embarrassing behaviour
In reality, embarrassing or odd behaviour tends to be more of a problem for the carer than it is for the person with dementia. Often, they have little concept that what they’re saying or doing is inappropriate.
Here are some tips for how to cope:
– Ignore it
Sometimes, kicking up a fuss can cause more of a problem than simply ignoring the behaviour. Obviously, if they’re doing something which is causing offence to someone else, then you may need to acknowledge it and try and stop them, but if what they’re doing or saying isn’t affecting or harming anyone, then you could try ignoring it.
If they’re acting in a way that’s turning heads, you could try distracting them. For example, if they’re talking about someone or something loudly, you could ask them a question so that they have to think about that and how to answer it. With any luck, they’ll soon forget about the original issue.
– Remain calm
As much as you may want to hush, argue or correct a loved one or tell them off if they behave inappropriately, the best thing you can do is stay calm and try to remind yourself that it’s the disease talking, not the person themselves. Welcome the behaviour if possible. By this, we mean, if a loved one tends to chat away to complete strangers, embrace the fact that they’re socialising, which is undoubtedly good for their mental health.
– Move them away from the situation
This can also be a slightly controversial action as some people may feel like they’re being ‘bundled’ or ‘manhandled’ away. However, if it’s suitable, encouraging the person with dementia to move into a more private space is one way to deal with any embarrassing behaviour.
– Apologise if needed
If the person you’re caring for says something or acts inappropriately to a stranger (for example, makes a lewd commend or acts out sexually), calmly tell your loved one that it’s inappropriate to show that the behaviour is not acceptable. Apologise to the person for their behaviour if your loved one can’t or won’t, and then try to move them on or distract them. While it may be shocking for the stranger to experience this behaviour, an apology can go a long way to pacifying the situation.
Preventing or reducing embarrassing behaviour
– Look for a pattern or trigger
Certain types of behaviour may happen because of particular physical need, which they are unable to verbalise. For example, if a loved one tends to remove clothing at inopportune moments, it might be because they’re too hot. If they’re touching themselves inappropriately, they may need to use the toilet.
– Explanation cards – the argument for and against
Some carers like to hand out explanation cards, which explains that the person has dementia and that’s why they’re behaving that way. Others may simply explain verbally to the people around what the situation is. While this may help to enlighten anyone nearby who doesn’t know what to make of your loved one’s behaviour, it has the potential to backfire, too. If the person with dementia sees you handing out the cards, or overhears you explaining that they have dementia, they may react even more, denying that there’s anything wrong and even getting angry and aggressive. Some feel handing out cards is demeaning to the person with dementia. Ultimately, it’s up to the carer to make that judgement call on how they think their loved one will react to them.
– Seek out dementia-friendly venues
The growth in communities and places that are geared towards dementia, coupled with an increasing awareness, can help to make it easier to deal with embarrassing behaviour.
For example, if your loved one gets flustered or upset at the supermarket, many check-out assistants and managers have received dementia training, so will hopefully be able to handle it and not take offence or become impatient.
Likewise, if you wish to take a friend or relative with dementia to the cinema, but are worried about them talking, exclaiming or asking questions loudly during the showing, you can now go along to dementia-specific film screenings. Museums and art galleries are also taking steps to be more dementia aware and provide events that suitable for people with the condition.
We’ve all been there…
Sometimes, all you can do is have a chuckle at the embarrassing experiences that may occur as a result of a loved one’s dementia, move on and share with others. Here are some of the Unforgettable team’s own ‘embarrassing stories’ – please share yours in the comments box at the bottom of this page.
‘We were on a family outing to see Lord of the Rings at the cinema, when during a particularly tense moment where Bilbo is being chased by the Ringwraith dark riders and he’s about to put The Ring on, my mum stood up in the middle of the cinema and shouted “Put it away you silly boy!” We were mortified at the time, telling her to sit down and be quiet, although I can look back now and laugh.’
‘Another embarrassing experience that happened on a regular basis was when my mum insisted on walking through the McDonalds drive-thru. The people at the service window were refusing to serve her, but I had to tell them that she wouldn’t move unless they did (there was a queue of cars waiting behind her).’
Olivia, customer services
‘My mum once decided to visit a restaurant we went to a lot and announce that she wanted food made for her as she owned the restaurant. Fortunately the actual manager is a lovely man and made her a meal free of charge. I wasn’t remotely embarrassed by her behaviour, but I can imagine that some people might be. For me it was just funny.’
‘My mum once accused her home help/carer of ‘stealing her shoes.’ She was adamant and said “that woman walked out wearing them. I watched her walking out the door in them, I never want her back in this house again.” We spent days trying to persuade her she was wrong. Looking back, I was probably very patronising when I kept saying, “honestly mum, your home help would NOT steal your shoes, it’s ridiculous.”
‘Eventually we had to speak to the home help about it because mum was refusing to have her back. I was squirming with embarrassment when I had to confront her; “I’m so sorry but Mum seems to have got it into her head that you’ve stolen her shoes,” I said. The home help started to laugh and said “oh yes, I did borrow a pair last time I was here. My shoes were soaking wet from the rain and your mum insisted I took a pair of hers – I was going to bring them back but I forgot.”
‘So mum was right. The home help HAD walked out of her house wearing her shoes but my Mum couldn’t remember having offered them to her. I felt bad for not believing her, but was more annoyed with the home help for accepting them when she knew how confused mum was. So, don’t always assume a person with dementia must be ‘wrong’ – no matter how unlikely their story seems.’
Share your stories below…