Carers of people with dementia
Signs of dementia
"I got a book out of the library on understanding dementia and it said 'Dementia is like a continual bereavement, because unlike a proper bereavement where you have the great grief when you lose the person because they die, you've got, you're losing a bit of that person all the time and you're watching it happen. So day after day you're grieving for the bit, perhaps the next bit that's going, or the bit that suddenly comes to you that day, so terrible grief'" (Interview 23).
This terrible, tragic loss occurs at different rates and in different ways. Here we report how carers have described the symptoms they've observed in the person they have cared for, including general memory loss, inability to recognise familiar objects, loss of a sense of place, loss of a sense of time, loss of language and changes in behaviour.
The loss of memory which is probably the best known symptom of Alzheimer's disease may not be obvious except when it leads to confusion and muddles. One husband described how his wife became ill and became confused and forgetful about things which she previously did without any problem, like shopping, washing, dressing, cooking and eating (see 'Suspicions - Early signs of dementia'). Later he became aware that the reason his wife seemed reluctant to get dressed was that she no longer understood what her clothes were for.
Realised that his wife was staying in bed because she had forgotten where her clothes were.
And I read an article in a magazine where somebody had, had the same problem and the wife had actually got the clothes out for her husband and put them on the bed and helped dress him. And that hadn't entered my head at all that my wife might no longer know where her clothes were or indeed what sequence to put her clothes on. And that simple little article helped me a lot because I then got clothes out for my wife, when she wanted to get up, helped her dress.
Some carers described behaviour suggesting that the person with dementia had difficulty appreciating the connection between one place and another so that moving to an unfamiliar place was bewildering and journeys were full of surprises. One woman described how her mother couldn't understand why she was unable to see her daughter's house from her own. Another described how her mother would fail to recognise her own house and muddle it in her mind with houses she had lived in before. Other carers were surprised that the sense of direction hadn't been lost and that a person could walk apparently purposefully for many miles, sometimes to a destination much further on, and not seem to be lost. What was lost was their perception of what was an appropriate journey to make.
Mother could not form a mental image of the space between her house and her daughter's.
The memory problems she was having were all short-term memory problems and problems of, I think some sort of spatial problems as well. The flat is about a half, a mile in more or less a straight line from here and from her window you could see across a playing field, the top end of our road. But of course between that road, the main road and the, besides the playing field and the main road, between that and us there were then a lot of houses because we are at the bottom of the road.
And she could not understand why she couldn't see the house and she would stand at her living room window with me and say 'Well whereabouts is your road?' and I would point it out and eventually she learned where that was and she'd say 'Oh its just there by that white house.
Well why can't I see your house then?' And no amount of conversation about it or drawing or illustration or any, any kind of example, or walking up the road, would convince her as to why she couldn't see my house from hers although she understood why she couldn't see her house from mine, presumably because the buildings are here and closer, and nearer.
Many carers who were not living with the relative who had Alzheimer's disease, described frequent telephone calls at all times of the night and day indicating that, not only had they forgotten making the previous call, they had also lost of the sense both of the time of day and of the time it took for things to happen. Carers described their exhaustion having to remain vigilant over a companion who didn't recognise the need to go to sleep at night. John Bayley described how his wife Iris Murdoch started to get up in the middle of the night and how he had to be sure the front door was locked so that she didn't wander off.
His wife would get up in the night and he was afraid she might wander out of the house.
Before going to bed I thought I'd better lock the door on the inside which I did and presently I heard her quietly, gently trying the door but I'd taken the key out. And that began to alarm me rather, considerably.
Difficulties with the use of language may develop slowly. Failure to keep up with spoken language may at first be mistaken for a problem with hearing. One man thought that his wife was going deaf because she repeatedly complained of being unable to understand what was being said on the television.
Difficulty understanding mistaken for deafness.
Her communication was going; speech was poor. She said she was, at one stage she said she was going deaf, but she had extensive tests. They went to a lot of trouble and said her hearing was actually perfect. But we realised what was happening was she couldn't cope with the speed of conversation, normal speed of conversation.
And the same applied to the television, I had already bought one of these headphone relay systems, cordless for her and she said it didn't improve her hearing but of course it was the speed of normal conversation. It was the speech was the problem, she wasn't coping with it. We realise all that now, didn't at the time.
Another man whose wife developed Frontal Lobe Dementia while still in her 50's told how, once he understood that there was a reason for the difficulty she was having in understanding and making conversation, he found it helpful to explain to friends and relatives what was happening and avoid awkwardness both for them and for her.
It helped to know why she was having problems taking part in conversations.
Conversation with neighbours, with friends and relatives changed because now I realise that she was losing her vocabulary, losing the understanding of words and therefore finding it difficult to have a conversation. After the diagnosis that became easier to understand and accept, and at least I could then explain to the people what was happening with my wife and the, the behaviour, the behavioural changes that were taking place.
Some people who are quite able to speak can have difficulty retaining the meaning of what they have just heard. Sometimes this is shown by frequent repetitions of single words picked out of a sentence. In others the same question is asked repeatedly with no apparent recall of the answers that have already been given.
Associates loss of language with loss of memory.
His short and long term memory have both gone. His language is very repetitious and very limited. His understanding of what's said to him is very limited too. He'll pick up on a few key words and repeat them, but doesn't really, fully take them in, although he can do things, but sometimes you have to ask him or tell him three or four times before he does them.
An inability to understand written language is usually associated with loss of speech and understanding. One woman described her husband's apparent lack of concern over the mistakes he was making in spelling and in the writing of numbers but at the same time believed that he behaved in a way to suggest that he was aware that he was having trouble reading.
Was not sure if her husband was aware that he had a problem with reading and spelling.
It gradually became clear that he was having severe problems with reading and talking and understanding what people said to him. He had lots of problems with numbers; he was having problems with spelling. He used to do all the household paperwork and all the finances. But I took over that. He accepted that he was having problems with spelling but that it was still his job to do the finances so he would bring cheques to me so that I could see that they were properly spelt. And he brought one cheque that was a telephone bill that was about £100 and he'd filled it in for £1,000.
And again he couldn't understand why I thought that was bad. Because OK so we overpaid this time but they wouldn't charge us so much next time, so what. And the fact that we didn't have the money in the bank and that the cheque would bounce, he didn't care. I don't think he actually understood it. But anyway at that stage I took all over the finance.
Our children had started school. There were all sorts of silly things like [husband's name] wouldn't read the children a story and eventually whenever I sat down to read a bedtime story to the children, [he] went away. I mean if he was sitting there he would get up and go somewhere else, which I found very upsetting but in fact it was I subsequently realised that he didn't like to be reminded that he couldn't read. I mean as the children's reading skills improved, his went down hill.
One carer described how difficult she found it, to not get upset when her husband became hostile towards her. Others described various examples where a person behaved in an uncharacteristically crude or otherwise inappropriate way. One carer described her concern as her husband made embarrassing overtures towards young girls.
Trying to accept that her husband's hostile behaviour towards her was a symptom of his 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.'
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.
Several carers described delusions, hallucinations and confusion about what was real. Particularly common was the assumption that what was happening on the television was real and that there were intruders in the house. One woman thought her own reflection in the mirror was that of an ugly stranger. Another example was a tendency to assume that when something couldn't be found, it was because someone had been in the house and had stolen it.
One of the most distressing symptoms of advancing dementia is extreme agitation and restlessness. One carer describing this attributes it to her mother's attempts to bring order to her chaotic world. She goes on to describe the calming effects of music.
Feels her mother's restlessness and agitation was caused by her attempt to bring order to the...
I think I probably had this myth like a lot of other people think, once you start forgetting things it's alright because you don't remember. What I didn't know, I had no idea was the awfulness of not knowing things and not, the anxiety that went with it, just the constant trauma of not knowing what you're doing all the time and that got worse. I don't think anything prepared me for that, this terrible distress that was in her, because in the flashes that she had, she knew there was something wrong but there was this constant activity with her and it just got worse and worse.
Wondering where she should be, what she should be doing, she'd forgotten to do something, she'd forgotten…and all of these things she had done, so there were times when she knew but you know, she'd go up and down stairs a hundred times you know thinking she'd left something upstairs or downstairs.
And the constant feeling that she ought to be on the move and doing something else and something different than what she was doing. And you know scrabbling for bits of information, all the time she'd be looking through old letters, try to make sense, it felt like trying to make sense.
In fact when I was talking to my husband about your coming he said he remembers her already, before, if I split into say the last two years, but somewhere between 1990/'92 when she was already quite bad and we'd go up for the weekend and she'd always get up very early and she'd be just constantly moving, turning letters over, trying to work out what day of the week it was, trying to work out what meal it was, trying to work out.... I think Terry said to her 'What's the matter?' and she said 'I don't know what I'm doing, I don't know what I'm doing.'
And nobody prepared me for that and the anxiety just got worse and worse and it was awful, just awful. I can't remember her feeling relaxed and calm. Fortunately music was wonderful and she could play the piano and I could get her to relax a bit by playing the piano. But she'd go to a concert for example and get up half way through you know at the interval and go home because she couldn't work out, she couldn't relax.
These are some of the most common signs of dementia. There are of course many others most of which have been discussed in other summaries. (see 'Self care', 'Money', and 'Wandering') Changes in behaviour have also been discussed in 'Suspicions - Early signs of dementia' and 'Living with change'.
Last reviewed February 2020.
Last updated July 2018.