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Carers of people with dementia

Diagnosis of dementia

When there are symptoms suggesting the onset of dementia, an accurate diagnosis is wanted from carers so that they can understand what is going on and make arrangements for care. However many of the carers interviewed felt that the diagnosis had never been formally made. Where adequate care was available, gradually progressive dementia may have been accepted as part of normal ageing. A professional diagnosis was often only sought, by some of those we talked with when they no longer felt able to carry on without some additional support.

 

Describes how he at least was not aware that his father had ever actually been diagnosed with...

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Sex: Male
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I don't know that he was ever diagnosed in the sense that how, well let me put it this way, the local Mental Health Centre is or was at [hospital] and I was aware he went there for one of his relief days. And he then started going to [village hospital] and I can't remember what it was but there was something to do with [village hospital] that happened and I sort of said 'I don't know what the hell's going on, because I didn't, I had no idea what was happening.' And I got a bit agitated about this.

And that's when I got a, I first got to meet [name] and she phoned me and said 'Look I run the Friday thing at, [village hospital] and I understand there's been some sort of communication failure, can I come and talk to you?' And I said 'Well that's very nice of you, yes do.' And she came and talked to me about what they did and how they, how dad had been referred to them by one process or another and she talked to me a bit about, about the disease and how she saw it in a way that I've found helpful ever since.

But I can't actually say that I understood that he'd ever been diagnosed in that sense. I think, I'm not sure that there is a diagnosis. I think actually he'd come to a gradual recognition that this is probably what's happening. I'm not sure that I mean you know if you asked me to define how, the point at which you know it's not just age deterioration so it's not just an age related dementia and it is Alzheimer's I have no idea.

But in other cases, and especially when the person showing signs of dementia is young, accurate diagnosis is critical. Many carers, especially those looking after people with one of the frontotemporal dementias, suffered agonies of uncertainty before a diagnosis allowed them to understand what they had been experiencing. Sometimes symptoms had been attributed to depression and learning the true diagnosis offered an explanation for changes in behaviour which had been causing annoyance and irritation.

 

Describes why it was actually a help to have the diagnosis of Alzheimer's disease confirmed.

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Age at interview: 62
Sex: Female
Age at diagnosis: 61
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I knew something was happening to him and he and sometimes I would say to him 'You know something's happening to you don't you?' And he, didn't say yes but he didn't say no, and I tried to play it down although I had this awful gut feeling that it was tremendously serious. But I tried to play it down by saying 'Perhaps it's something like a chemical imbalance in your system, and if you have blood tests and get sorted out by the doctor then it maybe can be put right with a course of tablets or something.' Which of course if it had been something like B12 deficiency which can be a cause of dementia then it could have been put right by the injections. I mean he has them now anyway on a regular basis.

Impotent fury I think would aptly describe the way I felt. Very, quite I felt quite depressed because I felt so helpless and I tried to get the help of the doctor and the doctor did say he would come out and see him but I thought probably he would refuse to talk to him anyway even if he came out. So impotence and anger, those were the two main feelings I can remember.

Here was he going along with his life as he wanted it and I was knowing something was going drastically wrong and yet unable to get him to do anything about it.

Did actually having the diagnosis help?

In some ways it did, it was, I suppose it really just made me accept that what I'd feared as the worst was actually the worst. That there was no doubt anymore if it was dementia and it was a progressive situation. And although it was upsetting it was calming in a way because you couldn't kid yourself any longer, not that I was kidding myself all the way along, but not that I really knew what was involved with dementia at the time. But yes, I suppose in some ways it was a calming but upsetting situation.

 
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Describes how she felt it easier to cope with her mother's behaviour once she knew she had...

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Age at interview: 53
Sex: Female
Age at diagnosis: 61
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I think because we thought it was depression you know the feeling around if it's depression it's a treatable condition. And I think we behaved towards her in a manner that would indicate that she would get better and would try and, when she had lapses of memory, would try and help her find a way of remembering things or try and, sometimes ignore the fact that she, that she, trying to say 'Yes it is Tuesday, you remember it's Tuesday.' You know, that kind of comment, which in retrospect I feel was a very damaging experience for all of us because we spent a lot of time not understanding what was wrong with her and we had, it resulted in a lot of anger and upset at times.

When we were trying to confirm that 'yes it is today' or 'no it isn't'. If we'd know that she was dementing then you wouldn't have used that, you would have just accepted that she couldn't remember and got on with life. And when we all, when we did do that life was much better for all of us. And I think that resulted in an unhappy time for, you know there were times that were OK but there, were a lot of times when you got so frustrated with her lapses and forgetting to do things, turning up at the wrong time, the wrong place.

And, and it wasn't a case of patterning behaviour, 'Of course you remember,' or 'Why did you forget?' or 'Let's put things up here.' And just it was, if we'd known, if I'd known that it was never going, she was never going to be able to recall then, and had somebody told us then we could have used a different approach with her. And I think it would have been better.

Was that perhaps that, if you had known it was dementia you wouldn't have thought your mum was culpable?

Yes, I, I think, there was a time, because my mother had, she was quite histrionic at times and, and was, we began to think well maybe it's attention seeking kind of behaviour and that if we say, if we reprimand, well 'reprimand' sounds, but kind of take her up on issues then, then she'd, she'd pull out of and she'd remember and she'd behave in a way that was OK. Yes and that she was culpable for what she was doing to a certain extent.

And that she was in charge of herself, because she'd always been very much in control and responsible for her life and she always had made decisions for herself. So when she started making wrong decisions for herself there was an element of thinking 'OK, I don't agree with what she's doing and I think in fact she's wrong and I'm gonna tell her she's wrong' and the response came back was, you know 'So what, if I want to do this.'

And if you know that she'd demented and that she's not capable of making the right decision that I'm sure that would affect the way you would respond to her and maybe you could guide her to a better decision as opposed to challenging her on her wrong decisions and things that she did wrong, rather being more supportive.

People developing fronto-temporal dementia may be able to get by without people realising the extent or even the existence of their disability. This can be particularly painful for carers who may be made to feel that they are exaggerating the problem for some reason known only to themselves. In this case, to have a diagnosis is helpful but, unfortunately, many people still fail to understand the patchy nature of this group of dementias.

 

Describes how difficult it was when people did not believe her husband really suffered from...

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Age at interview: 52
Sex: Female
Age at diagnosis: 57
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One of the main difficulties that I and the rest of the family have with my husband's disease is people's total inability to understand it. When you mention the word dementia which its not always appropriate to mention but when you mention, a degenerative brain disease that's progressive, that sort of thing and you hint that its akin to Alzheimer's. People think of Alzheimer's disease, they think of somebody not remembering what your name is, not know what day of the week it is, not knowing who the prime minister is.

Now with a frontal-temple dementia, those kinds of things stay intact while an awful lot else is falling apart at the seams. So, you get a situation where because my husband is very articulate, because he can still read the paper and he's got time, he probably knows more about world affairs than most other people who've got busy lives. And he will discuss this with people and they will look at me as if actually it's me that's got the problem. What on earth am I talking about?

Our medical friends are some of the worst, my husband cannot drive, he cannot now practice medicine. They know what the diagnosis is, they've only got to go to the Internet actually, and bother to look up how it affects people. They come to us, they say 'Oh, are you back driving again yet [name]?' Now this is a degenerative disease, it isn't going to get better, it's actually getting worse. We've had remarks like 'Oh, are you doing any locums [name], to pass the time?'

And because they spend a short enough time with us that they don't see a problem, its deeply isolating and the children actually will daddy to, to blow a gasket simply in order that people will see that its real, what we are living with is very real.

The first step towards getting a diagnosis usually involves contacting the GP. This may not be straight forward because a person who needs to see the doctor may not wish to get any help. But a sensitive, understanding GP will usually find a way to meet with their patient and suggest further diagnostic tests. This may involve a physical examination and blood tests to rule out any other condition, as well as perhaps a short cognitive test.  

 

Describes her difficulty persuading her husband to see his doctor.

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Age at interview: 61
Sex: Female
Age at diagnosis: 70
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Well I think we'd just gone through a phase, just after we'd moved when I realised we had a very urgent sort of something going on, and I did suggest nicely several times 'Would you go and see the doctor?' or 'I think we need to go and see the doctor,' or I tried to persuade him that you know his memory was really poor and that perhaps we could get some help.

I remember really losing my cool one night and just saying 'I just cannot go on living like this, it's just too awful.' And it was just after Christmas I think I made an appointment to see his GP and I put him in the picture. I gave him some examples of what had been going on and you know how the changes had sort of become more obvious after the move and everything. And he said 'Well we don't have to think gloomy thoughts, there are other reasons why people become forgetful, we'll do a full MOT.'

So I did get [my husband] in to the doctor's with a view, I mean I was up front about it, I said 'I'm worried about your memory but the doctor said he hasn't seen you for ages and he'd like to give you a full medical.' He said 'Well I'm perfectly fit, I walk fifteen miles twice a week and all the rest of it,' and I said 'Well perhaps we'll just get you checked out, just to be on the safe side because I knew he had high cholesterol and I said 'You need perhaps to go and have your cholesterol checked if nothing else.'

So he did agree to go to the doctor and he let me go in with him on the first occasion and the doctor took lots of bloods and made another appointment and all the blood tests had come back pretty well OK. So he talked to [my husband] and [my husband] did agree eventually that he would go and see somebody about his memory.

Getting a diagnosis was not always easy. Not only did some people resist going to their doctor but some were so fixed in their denial of symptoms, or of their need for attention, that their GP felt unable to proceed further. Some GPs were suspected of having little experience in dealing with people with dementia, failing to respond to the carers concerns. They might even have seemed to imply that in old age dementia is 'just one of those things' and have failed to put the carer in touch with any sources of support or advice such as the Alzheimer's Society. Attempts to calm the anxiety of a person who may aware that they have a problem but who is terrified of admitting it (for instance by seeing them in their home) may to some extent be helpful but it is unwise to ignore the fact that questions designed to expose possible memory loss can be recognised for what they are by the person being tested.

 

Describes the sensitive approach used by the psychogeriatrician to counteract his mothers denial...

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Sex: Male
Age at diagnosis: 65
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The GP was I think quite good initially, he went out to visit her, went out to visit her again a week later to see how much she remembered of the visit. Did the standard things to examine for physical illness, which I think is important at first, you mustn't categorise somebody as having dementia unless you've excluded other things that can make them confused, especially in the elderly, there's a lot of things that can do that.

So he took blood tests and arranged a CT scan to see if there was anything happening intercranially with my mum, which there wasn't and went back to talk to her and felt that she was slightly depressed and slightly confused and very anxious. So referred her to a psycho-geriatrician who came to assess her at home and I went down for that assessment because I felt it was important for somebody to sort of give mum some support. And also one of the problems with my mum's illness throughout is that she's been in complete denial that there's anything wrong.

So somebody going into her house and asking her a lot of questions about the mini-mental test score for instance which has got questions which is fairly obvious to anybody whose not very, very demented you know that they're asking you about your memory. And you know when you can't answer those questions as happened with mum, she got very uptight and quite, agg., not aggressive but, the realisation there was something wrong and she wasn't giving the doctor the answers that she wanted made her get quite anti about it really. A bit 'bolshie' I suppose.

And I think, I left the doctor to talk to my mum in the living room and went into the kitchen and sat in the kitchen listening to her answering the questions to the mini mental test. I think that was the first time I realised quite how wrong things were because listening to her trying to answer those questions is a good test. Some bits of it were completely normal and you could see the areas, different areas of cognition and memory that it was testing and some were fine and then there were others like short-term memory and language skills and things which my mum as an ex-teacher and very interested in English and history and literature she had always prided herself on her control of language and use of language and listening to that from the other room I just realised that she was really quite handicapped, already.

So at that stage the doctor had made a diagnosis of borderline dementia but trying to explain that to my mum was very difficult. She obviously wanted to know why this doctor was coming into her house and talking to her and asking her all these silly questions. And sort of, at that stage the doctor did say 'I feel there's something wrong with your memory,' and, she completely denied that and got very upset and that's another reason I think to be with people when they're seeing the doctor, even in a home setting, with a home visit. Because one thing I've found over appointments with different professionals is that after they've gone you're often left to sort of pick up the pieces of somebody who is very upset and it's takes a while to, to do that.

Its not the fault of the person who has come to do an interview or talk to the patient, it's just the realisation that people are looking at somebody's mental state. When their doctor comes and takes blood or examines you or looks at your physical state then that's a, you know that's an affirmation that there's something physically wrong with you and our society is clearly happy with the idea of labelling somebody as being physically ill.

But there's still an enormous stigma, especially with elderly, more, people who are older in our society about

In February 2009 the Department of Health launched Living Well with Dementia' A National Dementia Strategy’ that was implemented in England over a five-year period to 2014. It set out 17 objectives for transforming dementia services, with the aim of achieving better awareness of dementia, early diagnosis and high quality treatment at all stages of the illness and in all settings. The following objectives are quoted from that strategy:

•    Objective 2: Good-quality early diagnosis and intervention for all. All people with dementia to have access to a pathway of care that delivers' a rapid and competent specialist assessment; an accurate diagnosis, sensitively communicated to the person with dementia and their carers; and treatment, care and support provided as needed following diagnosis. The system needs to have the capacity to see all new cases of dementia in the area.
•    Objective 3: Good-quality information for those with diagnosed dementia and their carers. Providing people with dementia and their carers with good-quality information on the illness and on the services available, both at diagnosis and throughout the course of their care.
•    Objective 4: Enabling easy access to care, support and advice following diagnosis. A dementia adviser to facilitate easy access to appropriate care, support and advice for those diagnosed with dementia and their carers.

Since the National Dementia Strategy 'Living well with Dementia' was launched in 2009 by the Department of Health there have been many improvements in the care and support of people with dementia across the country including streamlining the assessment process. However services differ across the country. In 2016 the Department of Health published the ‘Dementia Atlas’, an interactive map of England, which shows  standards of care by area.

Last reviewed Feb 2020.

Last updated July 2018.

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