Carers of people with dementia
Challenging behaviour
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In the medical field, challenging behaviour seen in people living with dementia may come under the umbrella term ‘behavioural and psychological symptoms of dementia’ or BPSD. The symptoms that can come under this term are: agitation, aggression, wandering, hoarding, sexual disinhibition, shouting, repeated questioning, sleep disturbance, depression, anxiety and psychosis. The researchers discussed this term with the public members who advised on the study and decided to refer to the person living with dementia as acting ‘out of character’. Here, the behaviour and psychological symptoms that carers talked about will be referred to as being ‘out of character’, with further explanations of what occurred and how the carer themselves adapted during this difficult time.
Every person’s journey will differ and the person living with dementia may not exhibit any of the symptoms we describe here. However, we felt it was important to share the experiences of carers who had particular difficulty in supporting the person with dementia when they acted ‘out of character’ for long periods of time.
Marian describes how a loved one acting out of character can cause upset.
Marian talks about her mother’s out of character temper.
Marian talks about her mother’s out of character temper.
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I mean… she had an accident on the way to the loo where she was fecally incontinent and wasn’t aware of it, but I think may have known somehow that something had gone wrong, and I ended up clearing up and sorting all that out, and… and then trying to get her to get dressed and she was really recalcitrant and cross with me, and I think that’s where I felt some… she was aware that something had… had gone wrong but she didn’t… couldn’t remember, didn’t know, was just out of sorts, and then later that morning when I was doing… I was doing the AGA, I was taking the ashcan out and she shrieked at me, and I mean she just said, “It’s cold with that door open,” which she says all the time, but it’s cold, [angry voice] “it’s cold with that door open,” and I was… and I was disproportionately upset, you know, just was the wrong thing at the wrong time, and I went upstairs and cried, and that was the point at which… and I… and I contacted my daughter, I contacted my sister and told them both, and they were both lovely, and my sister was saying, “Look, you need more support than you’re getting,” and that might be support for Mum.
Marian talks about her mother’s out of character temper.
Marian talks about her mother’s out of character temper.
I mean… she had an accident on the way to the loo where she was fecally incontinent and wasn’t aware of it, but I think may have known somehow that something had gone wrong, and I ended up clearing up and sorting all that out, and… and then trying to get her to get dressed and she was really recalcitrant and cross with me, and I think that’s where I felt some… she was aware that something had… had gone wrong but she didn’t… couldn’t remember, didn’t know, was just out of sorts, and then later that morning when I was doing… I was doing the AGA, I was taking the ashcan out and she shrieked at me, and I mean she just said, “It’s cold with that door open,” which she says all the time, but it’s cold, [angry voice] “it’s cold with that door open,” and I was… and I was disproportionately upset, you know, just was the wrong thing at the wrong time, and I went upstairs and cried, and that was the point at which… and I… and I contacted my daughter, I contacted my sister and told them both, and they were both lovely, and my sister was saying, “Look, you need more support than you’re getting,” and that might be support for Mum.
Mary who is helping to care for her sister-in-law describes the difficulty in calming her sister-in-law when she is emotionally upset.
Mary explains about her sister-in-law’s reaction when upset.
Mary explains about her sister-in-law’s reaction when upset.
To keep back the deterioration as much as possible and also to control her emotions as much as possible. So, ‘cause it’s quite disturbing when, when she’s upset, you know, she’ll try and, try and pull out her hair and physically you know, sort of [grrr] and, and be very accusatory, sort of like a paranoia. Which you know, I’m, sort of “I know what you’re doing, you know, I’m not a child” and you know, you know, quite upsetting if you’re in the street and that happens it’s, people will look and think, what the hell is going on here? But it’s just, it just like it will flip just like that. There’s nothing you can do apart from let it go. You know, just be there but not, just taking it and then hope that it passes and it kind of does usually. So but it’s quite disturbing [laughs]. Or to run off [laughs] and you have to run after her [laughs].
One person described how difficult she found it, to not get upset when her husband became hostile towards her.
Well, one of the hard things to take, I mean I knew he was ill so I didn’t take it badly, but hed say, ‘Well, its my money. Well, hed never been like that in his life. It was always our money, you know. But hed often say that to me, ‘Its my money and its my house. I think you can’t, when you realise that it is an illness.
It was the same when he used to get into a rage, I knew it wasn’t him. I don’t say, I mean there may have been one or two occasions when I was losing my temper a little bit, when he was really awkward at night, you know. You can only take so much and when he was saying something nasty, it was only afterwards that I’d think, “Oh well, that wasn’t him, don’t feel upset about that”. But it’s a natural thing in a way. You just crack up in that way. I tried not to, because, I realised, I say, all the time it was in my mind, well its an illness and you’ve got to accept that, its not him. He would never have raised his voice to me at all. He was the most amiable of chaps.
Dave who cares for his father realised his father would become unsettled in his own home after giving up sequence dancing, a daily part of his routine.
Dave describes the negative change in his father when he went back home.
Dave describes the negative change in his father when he went back home.
And interestingly what I noticed was when we would go back to his, he would be far more agitated, far less settled, and that we were still back to this situation where in that, I viewed it as the triggers there were, ‘well, he’s meant to be doing something, he’s meant to be dancing,’ which of course was still all… all off anyway, and he was far less relaxed, which incur… made me much more on… on edge for him being up there, so subsequently… but the right thing to do now, when we look back, was this dual thing, and then it wasn’t that it was from one day he’d live there, and come here : he’d… he’d got used to, over the period of time, to do that.
Julie who is caring for her friend in the same town, describes the inappropriate comments her friend makes and the embarrassment she feels around other people.
Julie talks about her friend’s inappropriate comments to others.
Julie talks about her friend’s inappropriate comments to others.
She can be very embarrassing in public, very embarrassing in public, she… all the time she’s saying to people things like “Oh, she only comes here because there’s a man here,” about me, “and she’s always after the men,” and all this sort of thing, and, “oh, you’ve done this, and you’ve done that,” and she tells them, “Oh, she always bullies me, she does this to me, and she does that,”
But it can be very embarrassing sometimes with a stranger.
On one occasion: she came out of the bedroom and she looked at my grandson who was then… he must have been just 14, and his mate that we’d taken with us, who was also 14, and she looked at them and they were on their… you know, these devices that they’re on all the time now, and she said, “I hope you’re not looking at naked girls on there,” and they said, “No, [friend’s name], we’re not,” and he… she said, “Well, if you’re looking at naked men, that’s ever worse,” and of course, there’s [daughter’s name] and I, my daughter, cringing, and I’m saying, “[friend’s name], do you want a cup of tea,” [huh] I said to the boys afterwards, I said, “I’m really sorry, she said something like that,” you know, and they said, “It’s all right, don’t worry, we understand,” you know, but, you know, she is inclined to be very inappropriate at times, [chuckles] so she just sort of forgets that you can’t do things.
One person described her concern as her husband made embarrassing overtures towards young girls.
Was not prepared for her husbands disinhibited behaviour.
Was not prepared for her husbands disinhibited behaviour.
Or this disinhibition I mean he's inclined occasionally now to just drop his trousers. He did it at my daughter's the other night but luckily the children didn't notice. And he'll unzip his flies and just sort sit and stroke himself. I mean he's always wearing a pad but he'll quite happily sit with his flies' open and just sort of touch himself.
And, oh two or three years ago now we were waiting at a, we must have been out for a walk and we were waiting at a bus stop and he just suddenly came towards me, I was wearing probably a tight t-shirt or something, and just grabbed my breasts and said 'What are these then?' And I thought you don't do that at a bus stop, you know!
Yes, and he makes no bones about what he wants to do I mean, when it comes to - what's the word - urinating or as he calls it 'poohing'; he'll talk about it quite loudly wherever we are, and quite graphically as well. He doesn't sort of say 'Oh I think I need to use a toilet'. He'll say 'I need to do a pooh and its coming out'. It doesn't matter who's around, he'll just say it, just like that!
That I do find a bit difficult and I say I, I hadn't come across people doing that when I was in the hospital, I suppose it didn't arise. And then when he was at [the respite unit] last time he, there were a few sort of evacuations while he was in the bath, and they deal with it there without any problems, but its not exactly a party trick is it?
So yes I did know about dementia but I didn't know much about frontal-lobe syndrome. That can be a shock.
We were also very vigilant from then on that [he] should not be left alone with, with children. That has been possibly my, biggest concern. Because when his grandchildren come and stay there's two little girls, they're what about 7 and 8 now, and when they were here last time he was standing in a doorway watching them get dressed. I mean they had their knickers and vests on but he was standing there watching them and they felt very uncomfortable about that.
And when we go out he makes comments, not, so much in the last few months he's, but back in the summer we were on a boat trip and there was a little girl on the boat and [my husband] kept looking at her and I kept trying to distract him. And then he kept saying 'Do you think she's wearing knickers?'
And it was just so, shocking and another time he was looking, there was a picture of a very young, well sort of probably late teens girl on the front page of a magazine and she was wearing very brief shorts and she had her thumb stuck in at quite a provocative attitude and I, could hear him talking and when I came in here he had this book in his hand and he was saying 'Go on, pull them down just a little bit, go on, go on'. And it was really creepy; the voice, I've never heard his voice like that before and so it really spooked me.
Carol who cares for her partner talks about her partner having visual distortions and how it can affect his thoughts and well-being.
Carol talks about her partner’s visual distortions and how he must feel.
Carol talks about her partner’s visual distortions and how he must feel.
But yes, I mean, I think couple of weeks ago he phoned me to say I was standing in front of him and I said no, I’m at home. And then he said there was a lady in his place with a black shawl so, yeah, it’s strange, very strange, really. I don’t know if he realises he’s imagining it or not, really. Yeah and he saw horses in the garden which is impossible [laughs] for anything to get in the garden. So, that was one evening. And I just said to him, oh I said, “They won’t hurt you.” I said, they are outside, they won’t hurt you.” But yes, I mean he, and little people, he sees little people. He said, “They come in and steal things.” But I haven’t had it in the last two weeks I don’t think. But we were gonna ask the consultant about that. As well, yes, ‘cause I think there is some medication they can give for that sort of thing. Because it must be quite scary if you’re actually think you’re seeing someone in your home and it’s not, you know, they aren’t really there.
Some behaviours that were seen in the earlier years of a person living with dementia may become increasingly uncontrolled when memory problems begin. Johnny talks about his experiences trying to limit his partner’s alcohol drinking that was getting out of hand.
Johnny explains about his partner’s whiskey drinking.
Johnny explains about his partner’s whiskey drinking.
And I remember the doctor saying, she’s… “You’ve got to do something about this drinking,”
And all these bottles of whiskey, and opening draws and there’s half bottles of whiskey everywhere.
And gradually we… we got the half bottle of whiskey down to… I was putting water in it and doing that, and that went for years, and years, and years, this boozing problem, and it’s only in the last few years, the last two years, that she doesn’t ask for… for drink now. I got from whiskey down to wine, from wine to watered wine, I’d get a bottle and put, you know, a cup of water in it, and I had it down to a half a bottle, down to… in fact I bet there’s some bottles round there now that have still got half a bottle of wine with water in it, so we overcome the drinking.
There are times when outside support from a care agency can be difficult, particularly when a person living with dementia’s actions pose a danger to themselves or others. Ellie talks about the difficulty of managing home care for her mother when they began to employ care workers to support her.
Ellie talks about her mother’s reaction to care workers in the home.
Ellie talks about her mother’s reaction to care workers in the home.
For the first couple of years, we didn’t have any carers in. It was, we could manage it and then we had home care, which was, was really difficult at the start because mum went through a really aggressive phase where she was physically, she was physically violent towards them. And she would refuse help from them and so even though we had carers that I would kind of end up doing most of the work when they were there.
A lot of the care companies refused to [laughs] refused to come into the home anymore because of her aggression, like the way her disease kind of took on.
For some people living with dementia, they may need extra support to keep their home tidy. However, some people described difficulty coping with the level of clutter they witnessed.
Julie who is supporting her friend in the same town describes the state of her friend’s house. She takes on the responsibility of taking care of the bills.
Julie explains about managing the day-to-day with her friend and the clutter in the house.
Julie explains about managing the day-to-day with her friend and the clutter in the house.
I mean I… you know, I try and grab the post before she does and say, “Oh, that’s for you, that’s for you, and that’s a bill for me,” or something, or, “that’s important, I need to keep that,” you know, her tax coding and thing came the other day, and they just disappear in the house, and everything disappears. I had a red bill the other day, and I had to get in touch with them and say, “Look, I’m sorry about this, but I didn’t know the bill had come,” because she swears that she hadn’t had one, and I can’t find it because you just can’t find anything in her house’; there’s stacks of stuff everywhere.
I mean she’s even started forgetting to put the rubbish out on a Thurday night, and I remind her: by the time she’s got to the car, to the door, she’s forgotten, and if I go in earlier and say, “Oh, shall we put the rubbish out now?” “No, no, no, I’ll do that later. No, no, leave it, I’ll do it later,” which is OK most of the time because there isn’t anything really, you know, nasty there because she doesn’t cook, but there are times when I thought oh god “Let’s get this out of here,” and then she’ll put it round the side of the house, because there’s a little alleyway at the side by the back gate, and she’ll put it round there, and there’s bags there that have been there since before [friend’s husband’s name] died.
Andrew recalled receiving a call from the police that his mother was living in a bad state. Her home was a fire risk and needed fire services to step in.
Andrew describes the level of clutter in his mother’s house.
Andrew describes the level of clutter in his mother’s house.
Called the police, they went round and, and yeah, I received a call while I was out in my garden and that’s kind of when, yeah, I guess the world fell apart for me they said that she was surrounded by litter and general detritus, but also faeces and all that and, and she was in a very bad state and they thought that she was, she might not have long to live.
So, I went to my mum’s house and found yeah, I had a key for it. Managed to get in and most of the downstairs was pretty much waist deep in in rubbish. And there were sort of drifts that were very high and, and sort of this, there is rubbish everywhere essentially. My mum was in hospital at that point and I understood that the fire service had, had basically requested that she was kept in no matter what because it was unsafe to get back. She is a heavy smoker and she was smoking in this room, her living room that was surrounded by boxes a huge fire risk.
Some people talked about the ‘out of character’ behaviour of people living with dementia was serious enough for the person to be admitted to mental health services.
Neil who is caring for his civil life partner described how his partner was sectioned under the Mental Health Act and hospitalised. The type of behaviour his partner was displaying eventually became a risk to continuing home care.
Neil talks about his civil life partner’s out of character behaviour when he was discharged back home.
Neil talks about his civil life partner’s out of character behaviour when he was discharged back home.
And he was home for 12 weeks, which wasn’t too bad, and we had a bit of support to start off with from social services, but when that dried up he didn’t want anybody to come and help him, so I had to wash him, dress him, and if I left out the wrong clothes – he’d put on the previous day’s clothes as well as that day’s clothes, so that was really awkward. And he’d got to the point where he got really aggressive, really stroppy. I had to have him on tranquilisers for awhile, and then one day he was threatening hellfire and damnation out in the garden, [oh] he was going to kill everybody, then he wandered off and we couldn’t find him and I had to get the police out to find him.
And then the rapid response team for the care of the elderly, in this neck of the woods, came round and convinced him that he should go back into hospital, which he reluctantly agreed to. So I took him, because we couldn’t get an ambulance to take him, so I took him and admitted him, and as I walked in the door, the staff said to me, “Just leave him with us, give me his bag, leave him with us, you go off,” so I did. He was there for just on four weeks, if he’d have stopped any longer he’d have gone from a section 2 to a section 3 under Mental Health Act.
Ellie who was supporting her mother, experienced difficulty managing home care with care workers. After a risk assessment, her mother was sectioned and hospitalised under the Mental Health Act.
Ellie’s mother was sectioned and hospitalised after doctors assessed the home care risk with care agencies.
Ellie’s mother was sectioned and hospitalised after doctors assessed the home care risk with care agencies.
She was sectioned just due to the fact that the, she was quite physically aggressive to the carers that came into the house. She would try and hit them. And sometimes she would just say things that were awful. At this point, she was still quite verbal actually and she could speak. She did reach a point where she couldn’t speak. It was just jumbled it came out. But yeah, they, they just said that they couldn’t come into the home anymore due to the level of risk, which I completely understood, but yeah, the doctors then kind of said to us, you know, “We’re struggling to find any other care company that would be willing.” And we didn’t really have, I felt like we didn’t really have much choice and they said that they wanted to section her or to get her meds assessed and get her in a stable place due to the, due to the I guess it was kind of escalating at the point that her behaviour was getting really, really quite bad.
Last reviewed: November 2023
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