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.
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.
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.
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.
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.
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.
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.
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.
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', 'Challenging behaviour' and 'Living with change'.
Last reviewed November 2023
Last updated January 2024
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