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Carers of people with dementia

Suspicions - early signs of dementia

Most of us, as we grow older, worry about lapses of memory, difficulty finding names, choosing a word, remembering appointments. We may worry that this is the beginning of Alzheimer's or another kind of dementia, and indeed in its early stages the changes in a person developing dementia may be so gradual that they are accepted as part of normal ageing for several years. Often there is a precipitating event which finally confirms the carer's mounting suspicions and it is only after this that previous symptoms fall into place.

Here, we record the experiences of carers who recall the months or years before a diagnosis was made when there were symptoms which hardly registered at the time. The husband of a woman later diagnosed with Picks disease describes how he failed to recognise symptoms at first.

 

Was slow to recognise that his wife was developing Alzheimer's.

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Age at interview: 57
Sex: Male
Age at diagnosis: 56
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Going back and starting from the beginning in hindsight, now the first stage is, is not recognisable I think, or certainly wasn't recognisable as far as I was concerned initially - which were mainly the behavioural changes that were taking place. And that's prior to the diagnosis because one is just not aware. And I was certainly not understanding either to acknowledge the fact that my wife was at the beginning of a serious problem, a serious mental health problem.

So that's, that's the first stage. Once I realised then, once it was diagnosed then I think that if I sat down and gave it serious consideration I could probably categorise it into three or four stages up to this point' pre-diagnosis. From the diagnosis a gradual change of the things that were happening, loss of remembering things, loss of names, loss of word recognition, loss of words relative to putting a conversation together, not recognising things in the shop, buying a tube of toothpaste or washing powder every time we went to the shops. 

It wasn't until I went into the cupboard at one stage to get a tube of toothpaste out that I saw that there were seven tubes of toothpaste, new in there. My wife was buying a tube every time she, or virtually every time she went shopping, so there was a lack of recognition of understanding the need for purchasing. She knew we had to have it but she didn't know we'd got sufficient in the home.

She couldn't recognize her vegetables. I said one evening, she cooked me liver for a meal and I said how nice it was and then I had that for the next three nights on the trot. And so she was obviously trying to please and still understanding that she was pleasing but not understanding the fact that she wouldn't normally have cooked me liver four nights consecutively.

So I think on hindsight now the changes initially were difficult to recognise, difficult to interpret because you didn't know there was a problem. Once I knew there was a problem and you began to understand the changes that were taking place and they became more frequently. But because I was with [my wife] continuously I think I was likely to less recognise some of the changes that were taking place than people that saw her less regularly because I was more understanding of the changes and recognising the changes but not always recognising the speed at which some of them were occurring.

In elderly married couples increasing forgetfulness may have been attributed to growing old. But equally a caring daughter may kid herself that the changes she is observing are normal.

 
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Daughter says that changes due to dementia were not always noticeable.

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Age at interview: 80
Sex: Male
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Obviously in the early stages, the first signs only occur very occasionally. So you find somebody trying to drive around a roundabout the wrong way, or never getting something out of the oven before it burns or not being able to balance a bank statement, periodically. And then it sort of, I suppose, gradually, becomes more and more frequent a recurrence. But, at that very early stage it's very difficult to make sense of what's happening really.

 
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Mistook early signs of dementia for old age.

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Age at interview: 45
Sex: Female
Age at diagnosis: 77
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She's eighty one and she has had Alzheimer's for, let me think, in terms of how long we've been aware of it has been the last four years, let's say four years. Perhaps a bit longer than that, maybe it was about five years that we suspected that she was, you know, rather vague and we put it down to old age. And I think there was probably then a couple of years that we kidded ourselves - I have three sisters - that there was nothing wrong with her at all, as you do.

A husband who had been married many years knew something was wrong but had no idea what it was. One daughter who saw her mother relatively rarely describes concerns which mounted over several years.

 

Knew something was wrong but didn't know what.

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Sex: Male
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Well as I said previously at first I thought we were having problems and it wasn't until the doctor gave us a scan that we realised something was wrong but prior to that life was pretty bad really because we had no idea what the problem was. You just felt as if things were going apart and you couldn't do anything about it and strange things were happening. Like, as I say, money being drawn from the bank, over spending, not looking after things as well as they were being looked after, but still not realising that there was a problem at all as regards health.

 
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Noticed that her mother was becoming more difficult.

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Age at interview: 53
Sex: Female
Age at diagnosis: 61
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She came to help me when I had my youngest son, who is now sixteen and I can only say that help was in inverted commas because I found actually having her in the house quite difficult. She would start jobs and not finish them, she'd clean out the fire and then leave everything. 

She'd start preparing a meal and then not finish and actually I was running around, although she'd come to help me, I was actually running around and asking her to do things for me. So I began to feel there was something wrong then, so that's sixteen years ago. At the time I just put it down to possible depression and her being just difficult. So that's…

She returned to Scotland and I was, to be honest, quite relieved at that point. But during that period she would quite often just phone up and say 'I'd like to come down.' and she would and she'd come on the train, no problems at all. I went to Scotland when my youngest son was about four or five months and I then had friends again saying to me 'Do you think your mother's alright?' and I again presumed it was depression. I talked to her about it but she wouldn't talk about it.

Another year went past when we, I visited Scotland and she came here, we, you know, she was still independent, there wasn't any problem but there was already signs that she wasn't OK. So we had a holiday with my sister in Switzerland and it was very obvious that she was really not alright. She couldn't remember anything. You know, we talked, my sister was going to go on to work in Africa for two years. 

The purpose of the holiday was to kind of say farewell to her; she couldn't grasp that, she couldn't understand why she was packing but all the same functioning at a perfectly normal level but we couldn't make her understand that my sister was going away for two years and that we were all there to say goodbye to her.

At that point because it led to family arguments, a big argument, we begged and pleaded her to go and see a doctor, so we're now talking about fifteen years ago and to talk about depression. She did go but my mother had been, the person she chose to go to was a psychiatrist whom she had been at university with and she went privately. She came away from that saying 'There's nothing the matter with me, I'm perfectly alright.', at which point I was distraught because I knew there was something wrong and I couldn't find out what.

That's how it was left. We just continued like that for a bit with my mother getting increasingly forgetful, difficult, I mean she was quite difficult at times. Her friends finding her more unreliable, she would forget to turn up at pre-arranged appointments. She'd turn up unexpectedly, quite often at mealtimes but without being aware that it was a mealtime. I think that went on - I'm trying to kind of date it now - certainly for another year and a bit. That's how it went on.

For some carers what they remember noticing are changes in behaviour which for some time go unexplained. A husband describes a series of changes which he only later realised were signs of his wife's developing dementia.

 
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Describes warning signs and his wife's reluctance to find out what was wrong.

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I mean when you talk to other people about the first insights that you have everybody says the same things that it's a series of unrelated and apparently insignificant things that happen. It's only now that one can look back and make sense of them, so let me give you one or two examples of what I mean.

For example we went on holiday in 1996 to Falmouth and drove along the coast, stopped at the beach and I remember saying to my wife 'Would you lock the car up and I'll go and get a parking ticket and then we'll go off.'  We went off and came back an hour later and all the doors of the car had been left open. 

At the time we kind of laughed about it, no harm was done. But a year later when my daughter was relating to a doctor at the [town name] School of Medicine where she works and she mentioned this incident as one of a number of inexplicable events, his immediate reaction was 'It's probably Alzheimer's.' And that business of leaving the car doors open was something that became a sort of a thread really that went on for several years. That's one example.

I think the second is a much more profound experience and this must have begun about 1997. Sorry, there were other incidents like failing to take telephone messages down accurately so friends or colleagues would ring me and I didn't get the message or I got a message that was incorrect. But really the really significant thing that happened was, round about 1997 when my wife had returned to work successfully, been at work for about two years but had then decided to give up because of the physical problems that she was having resulting from the accident. 

I began to notice that when we'd had a meal in the evening, round about 7 o'clock, we would come into here and it was a kind of ritual really, we always read the newspapers for about an hour after dinner and talked about what was in the news and so on and it was something that we'd done for the past twenty years. 

But she wasn't doing that any longer and all she was doing was sitting in this chair staring into space. I would say to her 'Is everything alright?' And she'd say 'Yes I feel fine I'm just thinking.' This happened night after night and looking back now it was a sign of a sort of detachment that has become characteristic of her illness, when she can go off into a dream world for quite long periods unless I'm there to bring her back. So that was that sign.

And coupled with that was a general sense of depression. Eventually I must have shown quite a lot of concern because on one particular occasion I remember her saying 'Why are you always getting annoyed with me?' and I remember saying to her 'It's because I'm so worried about you.' And she was absolutely distraught at that moment and I remember saying to her 'Look, let's go and see the doctor.' And she agreed to that, when it came to it, on the morning of the appointment she wouldn't go and so I went down on my own. At that stage he thought it was depression.

One daughter remembers her mother falling out with people as a result of muddling arrangements. John Bailey didn't believe that Iris Murdoch was developing Alzheimer's disease until she failed to realise that a lecture she had given had gone disastrously wrong.

 
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Her mother would blame other people for muddles she had made.

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Age at interview: 59
Sex: Female
Age at diagnosis: 82
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It had become evident by 1997 that she was in some difficulty living on her own. She was falling out with people that she'd been friendly with a long time. She was blaming people for things that I think she'd done herself or that hadn't been done that she thought she'd done and then, I mean for example putting her name down for an outing. 

She would say she didn't want to go so her name wouldn't be put on the list and then she would turn up for the bus with everybody else and be very upset that she wasn't allowed to get on it because she hadn't put her name down and there was no room. And she would say that she had put her name down and that somebody had crossed it off.

 

Failure of close person to recognise the early stages of Alzheimer's disease.

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Age at interview: 78
Sex: Male
Age at diagnosis: 76
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One thing I think is important in the early stages of Alzheimer's is that I think if you are very close to the person, if you're the wife, the husband or even the mother or the father or the children, you may not notice things as quick as the outsider. I, in fact the first person who I think really saw that something rather strange and perturbing was going on was my present wife who was a great friend of Iris. We, she and her husband and Iris and I had been sort of a foursome we'd done a lot of things together and been very close. 

And after the death of her husband we saw [present wife] very often and she was extremely kind and helpful. And I think she was the first person to see something was a little unusual in Iris's behaviour. I think, I think if you're the wife or the husband on these occasions you tend to take things rather for granted. Even unusual behaviour doesn't necessarily bother you, you just say oh well that's the sort of thing he does or she does sometimes.

I think quite rightly [present wife] didn't say much to me for a while but she once or twice, when we were staying with her, she did mention the fact that she wondered if we, I'd better take Iris to a doctor. I was rather surprised by this.

I mean I, and as our doctor was a busy man and was more concerned naturally with health than with the mental state of the patient, I didn't do anything until we went in 1995 to Israel to take part in one of those sort of discussions, a general kind of cultural programme. And Iris was always very good on those occasions, she loved talking to people, she loved answering questions, it was her favourite form of participation. She wasn't so keen on giving a lecture herself, she didn't have to give a lecture but she would have been excellent at discussion and question answering.

However, on this occasion she was rather, curiously tongue-tied and sometimes unable to see what the questioner was asking and to reply very coherently. I was a bit bothered about this and remembered what [present wife] had said about it not very long before.

And after the programme so to speak, which was not a success from our point of view at all and the Israeli audience got rather sort of restive, bored and a bit impatient. An Israeli author, a very nice man whom I got to know later on came up to me and said 'Is anything wrong with Iris?' And I said 'No, I don't think so, perhaps she's tired or something.' And I then said to Iris 'Do you think it went badly?' and to my surprise Iris said 'No, I thought it went rather well, rather better than usual in some ways.' So I didn't say any more to her.

But when we got back I did think we'd better see the doctor. And our doctor didn't take it very seriously but he said, and we were talking the three of us, he suddenly said to Iris, 'Iris, who is the prime minister?' A stock question as I realise later on. Iris looked rather baffled and amused too and said 'Well I don't think I know but does it matter?' And I thought this was a very good reply.

Often explanations are invented to try to account for unexpected behaviour. For instance one carer described her initial reaction to the difficulties her elderly husband seemed to be having first with reading and then with talking.

 

Her husband was having difficulty reading and later with finding words.

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Age at interview: 60
Sex: Female
Age at diagnosis: 72
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In the early nineties I became aware that my husband was getting a little bit less quick on making decisions or remembering things. He was older than I, so he was then in his seventies, well early seventies, and I just thought oh he's getting on a bit you know. But it was clearly more than that, after a little while I realised.

And he was also becoming increasingly concerned about his eyesight, having lost the sight of one eye during the war, and the other not very good. Looking back I now realise this was because he was beginning not to recognise letters and it was the beginning of him not being able to read signs or the newspaper quickly and things like that. At the time I just thought he was possibly having more problems with his eyes, but this turned out to be, it turned out to be the case but wasn't related to what I now feel was really wrong with him.

His speech also became very, less clear. He'd always been a very clear and decisive speaker using the right words and, and syntax and everything. So there was, he used to stumble for a word - a perfectly normal word, nothing peculiar - and not being able to grasp what had been said to him very quickly. And after about a year I thought maybe he'd had a slight stroke.

So I took him to our GP who sent him to a, I think he's called a geriatrician, who gave him all sorts of tests and came to the fact there was nothing wrong other than the possibility of the beginnings of, dementia. He suggested taking an aspirin every day to stop any deterioration, or help with any deterioration, which he did. And this went on for some years with him getting steadily worse and in the end very much worse.

One of the commonest mistakes made is to confuse early Alzheimer's disease with depression. It is often not difficult to provide reasons why someone might be depressed' the death of a husband, a car crash, moving house, losing a job, or a previous history of depression. In some cases the event itself may have been part of the early presentation of the condition. For instance one man who may well have lost his job because he was in the early stages of Alzheimer's was diagnosed as suffering from depression. This mistake is particularly likely to happen when the person developing dementia is young.

 
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Early symptoms masqueraded as depression.

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Age at interview: 63
Sex: Female
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It really starts in the summer of 1993 when I took early retirement from teaching. My marriage had been in trouble for some eight years then and one of my motives was the thought that if I got away from the stress of teaching I might actually be able to help the marriage as well. Unfortunately at that same point and in fact three weeks before I retired [my husband] was made redundant with, retired on redundancy grounds and so he was home just before me and while I jumped he was pushed. 

And he was very distressed about that, partly because he was working in the Health Service and his job was not going to be done anymore and he was working in the community with people who he felt really needed him and who were essentially going to be abandoned. And the reason for that preamble is that this is why his dementia masqueraded as depression and was thought to be depression for a long time. 

And I saw his behaviour to me which was increasingly angry and often bordering on hatred, as the thing that I had chosen to retire. I had, I'd been counselling with Relate Marriage Guidance for twenty years so I had set up in private practice and my retirement was really going and his was a shambles.

And so it was some time before we realised what was really wrong. Ironically in those first few months he became an advocate for the Alzheimer's Society. And he actually went into the, one of the local nursing homes and saw conditions there and he also saw what Alzheimer's looked like at close, close to. And he I suspected it quite early on. I can remember lying in bed and freezing and thinking 'No, no it can't be this'. And it was probably a couple of months after that, that he said 'I wonder if I've got Alzheimer's?' And he also said 'If I have I don't want to live.'

And we arranged to see our GP who in fact was marvellous, really very good all through this and who knew some of the things that [my husband] was, [he] was doing. I mentioned in the written thing that he would come into the house, he would open up all the windows and go out again. He would lose things. We had a holiday booked for New Zealand and he completely sabotaged the bookings. It actually cost me about £1,000 to get that sorted out.

And it all, there was the thing, is this just, is this anger, is this depression or is this Alzheimer's? And so the doctor arranged for him to see a neurologist who said 'No, it was depression' and arranged for him to see a psychologist who did tests and who said, 'No, this was depression'. When I think back on the results of those tests, no way did they represent depression. They were very specific losses of memory but she made a good case for this only being depression.

 

Diagnosis was missed for two years when he was thought to be suffering from depression.

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Age at interview: 62
Sex: Female
Age at diagnosis: 50
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Looking back why did it take two years of problems? He was diagnosed as having endogenous depression for which he took the appropriate pills. And yes he was depressed but with 20/20 hindsight, why didn't they look behind what was depressing him, where they would have found classic signs of dementia, the forgetfulness and confusion, particularly losing spatial awareness. Because it turned out that the most significant thing that he couldn't do was to read the music especially tracking from line to line.

But to go back to the question, why did it take two years, I think for someone aged 50, dementia was not on their agenda, so a whole lot of other things had to be ruled out. Eventually when he went to [town] and got lost driving in familiar surroundings, then that really rang alarm bells and I took him straight off to the doctor again.

In some cases there was evidence that the person developing Alzheimer's was aware that something was happening to them that they were unable to explain.

 

He realised that his wife was aware that something was happening to her.

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Age at interview: 75
Sex: Male
Age at diagnosis: 67
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The first indication of any problems was probably about nine years ago. Very minor things happened. My wife became less reliable than she had been when asked to do anything. She would cease to, the house, little things in the house were not as clean as they were before. Small things to start with which were noticeable because she had been meticulously clean always.

And then she started to ask me 'Who was that?' when we'd spoken to someone in the street, someone we'd known for years probably but not seen frequently. And then when I tried to explain who they were very often it didn't seem to ring a bell at all with her.

Then we decided it would be as well to see the GP about all this and the GP suggested that another appointment of about twenty minutes, and he suggested she almost certainly was starting to develop Alzheimer's disease which was a fear she'd had, she'd expressed a fear of this, a vague fear previously.

But eventually her behaviour changed, her character changed, she would get up in the middle of the night, put anything on the stove without, without any liquids in it, or plastic items melted and had to be thrown out. She would sit downstairs in a cold house without any heating on; with a little persuasion go back to bed.

All these kind of things went on and on and then she started to go off on, not just wandering, very positively to take herself off to somewhere with intention of going somewhere quite logical but without any hope of achieving the destination because of the distance that was involved. In one case she was setting off to go one hundred and seventy miles - on foot - to, to where she came, the town she came from, which was obviously, the direction was right, she was eight miles away when she was picked up, still going strong but the, it was impossible for her to reach the destination. Anything could have happened to her on the road.

All these, these kind of things went on and on and on, gradually getting worse. She wrote little notes which I found, or kept finding, long, a long time afterwards tucked away' 'Whatever's happening to me? Have I got Alzheimer's?' She was very worried about all this and yet she couldn't really, she didn't really seem to be able to express them in any detail.

One day she was, we found her tying the gates of an old disused cemetery quite close to home, very overgrown. She knew about this cemetery but she was tying the gates with her, from the inside. And I brought her home and asked her what, what on earth she was really doing and she said 'I want to die.' It was as simple as that. She realised there were big problems coming and she was very worried about it and that's what she said.

Most carers believed that their friend or relative had no insight into their impairment, some felt the need to avoid using words like Alzheimer's or dementia. One carer expressed relief that her husband's condition had deteriorated meant that there was less risk that he might be aware of what was happening to him. Another expressed fears that for a diagnosis to be given early in the disease might result in the patient wanting to kill themselves.

Moving house or even staying somewhere unfamiliar sometimes seemed to expose difficulties which had not previously been recognised. Sometimes a holiday lead to what seemed to be the first symptoms of dementia. One carer described how she thought her husband was joking when he woke up while on holiday in Rhodes and seemed not to know who she was. A daughter whose mother was fiercely resistant to any suggestion that there was a problem describes her getting lost on the way home from Australia and ending up in Greece.

 

Describes how her mother got lost on the way back from Australia.

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Age at interview: 60
Sex: Female
Age at diagnosis: 80
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One time my mother decided to go to Australia for Christmas, because Christmas is always a problem in our family with my parents being separated. So, this particular year, I think it was about 1992, mother decided to go to Australia for Christmas to spend Christmas with a nephew, flew out there. Ten days later decided she didn't like it and was coming home again. So they had to phone us from Australia, to say she was coming back.  

We, my sister and I, went to meet her at the Heathrow and she never arrived. So after meeting three planes and she wasn't on them, we didn't quite know what to do, so we came back here and I reported her missing to the local police. And the Police said that if we haven't heard anything in twenty four hours, we'd get Interpol. Anyhow, at quarter to five that night, my sister's daughter phoned and said the British Consul in Athens has found granny, can someone go out and rescue her? I think the cheapest way to go out to Australia was to go to Athens and then change planes.  

So I just had to put the phone down, phone Thomas Cooks and say 'I need to go to Athens tonight'. They were absolutely marvellous. I went on the half past eleven plane from Heathrow, picked up the tickets there. But the British Consul couldn't hang on to her because she had to go to a 'do' at the Embassy, and mother wouldn't go to a hotel. So in the end she put her in an all night police station. 

She gave me the address, so when I got to Athens, I grabbed a taxi, showed the taxi driver this address and he took me to this police station. He was very good. He waited to make sure that the police let me in and they had barricaded the door to keep mother in. And so at half past six in the morning I picked her up and we were wandering around Athens trying to look for her suitcase. She couldn't remember where she'd left it. 

We didn't quite know what to do, because Thomas Cook's said that we could have gone back on the same plane, but they said in case there's a problem, its only an hour and a half turn around, so they booked me back on an afternoon plane. 

So, in the end, we went to the Intercontinental, because that was the nearest hotel to the police station, which was £100 a day, and booked a room there. We stayed in that room and then came home that night. But it was marvellous, mother had all her money; she required a coat, apparently, because her luggage had gone missing and she hadn't got a warm coat, somebody had taken her to a shop to buy one. And she had some sort of story of having been given a night's stay by strangers, but we never discovered what happened to her hand luggage, and her main luggage turned up three months later. 

One woman who had a strong family history of Alzheimer's disease recognised her own early dementia when she became confused while driving and later when on holiday abroad.

 

His wife recognised her problem early having had experience with family members who had Alzheimer...

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Age at interview: 80
Sex: Male
Age at diagnosis: 68
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In the case of my wife and myself we were I suppose, should I say, fortunate in that two of her aunts developed dementia in their 70s so it was not a new experience for us although we never thought that we would be personally involved. But we first noticed it when my wife was driving. 

We used to drive down to Spain for the winter and my wife was a very, very good, very confident driver so the way we did it was one of us would drive for 2 hours while the other one would have a snooze in the back seat and that way we used to do the 750 miles down to Malaga very often in a day. And on one occasion fortunately I wasn't snoozing in the back I was sitting in the passenger seat when we came to a large traffic island and my wife suddenly said "Which way do I go round?" and we realised then there was something strange happening and after the next stop and changeover my wife said "I don't feel I can drive any more." That would be in 1991.  

Then we didn't think too much about it at the time except that occasionally she said she had wavy lines in front of her eyes which was a type of migraine and it passed if she lay down for a little while but it was evidently something more serious.  

And then in I think it would be about October 91, we flew out to Kuala Lumpur to see our son who was working out there and while we were staying there my wife began to lose her way between the block of apartments where we were staying and the restaurant over the road where we used to go to breakfast every morning. We would set off and she wasn't sure which way to turn. So when we got home we talked about this and said you know well this is what happened to Auntie Madge and Auntie Renee we'd better do something about it. And my wife said "Yes what do we do?"  

Another situation which may lead to recognition of a problem which may have been progressing unnoticed for some time is a visit from a family member or friend who hasn't seen the affected person for some time. A doctor concerned about his previously independent professional mother describes her panic when she realised that she no longer knew how to care for her young grandchild. A husband who had spent several years hoping that he was wrong about his wife's condition was unable to ignore symptoms apparent on a visit to their son and his wife.

 

His suspicions were reinforced by family members who had not seen his wife for some time.

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Age at interview: 72
Sex: Male
Age at diagnosis: 62
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I remember the first time my daughter really noticed a problem was we went up to look after their son who was about 2 years old in I think '95, yes January '95 while she had her daughter. And [my wife] was still fine for cooking and things like that. I mean I'd married her partly because she was a catering officer! I knew I'd get well looked after!

And [my daughter] said to me after we were staying in the house, after she'd come back from the hospital' 'Mum's saying some peculiar things and her concentration's going.' 'Oh,' I said 'it isn't just me who has noticed it.' My daughter and husband had been to Italy when they were first married, about a year after they were married which would be in about '86 and we were discussing this. And [my wife] suddenly out of the blue said 'Oh I remember when we did so and so in Italy,' and I knew and [my daughter] knew - my daughter - that she'd never been to Italy. And that's where [my daughter] first picked up signs that something wasn't quite right.

And the other thing that occurred which is so typical I realise now is when she was asked to cook so and so for lunch or do something, a quarter of an hour later she'd have to refresh her memory over it, ask [my daughter] again exactly what she wanted. So I suppose '95, January '95 we really began to realise that things weren't going to go back to normal.

But this was I think about four years after the original worry when [my wife] herself had worried about the fact that she was tending to forget birthdays and things like that.

In later summaries we will describe the processes undertaken to establish a diagnosis of Alzheimer's disease and the symptoms commonly found during the middle and late stages of the disease.

Last reviewed Feb 2020.
Last updated March 2015.

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