The GP may carry the initial cognitive tests, including questions about the date, the location and a short term memory test. Many carers witnessing these tests reported being amazed to discover just how much memory loss there was. Usually further tests are carried out in a specialist department. The decision as to whether the ongoing referral is to a neurologist, psychiatrist, geriatrician or psycho-geriatrician will depend on the nature of the symptoms, especially in younger people where dementia is rare and neurological or psychiatric problems may need to be excluded first. For a lot of the people we interviewed it was not uncommon that the diagnostic process including waiting for a specialist referral took at least a year; this has hopefully improved since the National Dementia Strategy was introduced.
A complete assessment will include taking a thorough history of the symptoms, talking to friends/relatives where possible, and carrying out investigations for any conditions that might have caused the symptoms described, this may include blood tests and X-rays. Specific tests for dementia always include cognitive tests. A doctor usually suggests that the patient has a brain scan, usually a CT scan, and sometimes an MRI scan. A CT scan takes only a few minutes and does not require the patient to actually go inside the scanner, so is acceptable to most people. Some carers are anxious that a scan may be frightening, however, so in some cases a diagnosis may be made without supporting evidence of a scan.
- Age at interview:
- Age at diagnosis:
- Husband caring for his wife of 54 years. They have one son. Carer is retired. Patient had been a seaside landlady as well as a housewife.
OK. Right, 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.
The GP didn't leave it at that fortunately but referred us to a local hospital and the doctor there who took great interest in these kind of situations said something that wasn't quite right as far as the diagnosis, the GP's diagnosis went. And she had scans, MRI and - what's the other one called? - MRI, CAT, and CAT scans and they both showed no brain shrinkage, no problems which puzzled him a bit.
So we were then referred to a consultant who in more detail, went into more detail and admitted to being rather baffled and asked us if we were prepared to go to [town] to see a Professor [name] at the medical research council there. Which we duly did. We had a full day's appointment starting at nine in the morning which went on until about three in the afternoon, saw Professor [name] and then various other doctors.
They wrote and asked if my wife would be prepared to go into [name] hospital at [town] for a week for full tests to further try to establish exactly what was wrong. Which eventually turned out actually to be Pick's disease with the sub heading fronto-temporal dementia. This was all explained to us, what the problems were and the differences in Alzheimer's.
The diagnostic process should involve taking a thorough history from the carer as well as the person with dementia. In some cases, particularly where an elderly couple are living independently, another family member may be needed to give a clear picture of the situation. Several carers expressed concern that they were not included in the process of taking a history. Doctors did not ask for the carer's account of their day to day existence and their abilities and accepted the patient's account of things, which the carers felt bore no relation to reality. Some specialists appeared to forget that once they had made their diagnosis the problems of the person with dementia and of their carer had not necessarily been resolved.
- Age at interview:
- Age at diagnosis:
- Carer is a husband in his 50's looking after his wife with Picks disease. They have three children.
I think perhaps the most difficult thing there is that none of the hospitals appear to be geared up, geared up perhaps is over-stating what I mean, but understanding of people with any form of dementia. They just assume that people are OK mentally and if they're not then there doesn't appear to be any way in which they can cope within the system.
And certainly on several occasions when my wife was being asked questions, questions which the person answering wouldn't know whether they were right or wrong, by me being there and knowing it was my wife, and knowing they were wrong, I found that they were pretty reluctant to actually talk to me. And on several occasions I had to say 'That is not the situation between my wife and I.'
For example, they were asking my wife if she had sex and she said 'Yes, regularly.' I knew full well that we hadn't had any sex for a number of years. I knew it was the wrong answer. But the person asking the questions wouldn't know that it was a right or wrong answer. That's only one example of the type of questions that were being asked that I knew full well from sitting there that my wife was giving an incorrect answer. Which again the person answering, asking the questions wouldn't have had a clue whether it was the right or wrong answer.
So I think that, and indeed I did make one recommendation to one consultant that we saw that it might not be a bad idea to have a set of questions for the carer, if they're a close carer, not necessarily the same questions that they were asking the person that they were asking the questions of, but asking if they had experienced any behavioural changes. And indeed I did sit down - I haven't got a copy now, but I wish I had - but I did sit down at one stage and list all of the types of changes and it, and experiences of the changes that had taken place with my wife.
And I did suggest that it might not be a bad idea to ask the carer questions as well. Because I am sure that the carer can give a lot of information about the changes because they're the one that's seeing and experiencing the changes that are taking place. Which could perhaps help earlier with a diagnosis. I'm not sure if it could help with diagnosing what form of Alzheimer's it actually is. You might even be able to do that or, or help along the way.
But I found that a number of the hospital staff were not taking any notice of what I wanted to say sometimes for and on behalf of my wife and sometimes to assist the person answering the questions to, get more of an understanding of what the situation was, really was. Than what they were getting from asking my wife the questions and didn't realise until the latter stages that my wife was saying yes in some places and sometimes it was a yes; but in other cases it was a yes and it should have been a no.
But she was sometimes not able to interpret the words or indeed understand what she was being asked, to understand, to be able to give an answer to the question. So I think I, one of the biggest problems I found was one, hospital staff not understanding people with dementia and two, when you are in a situation where they could get more information from the carer to help with the diagnosis they were not doing that.
I think that, once the diagnosis is made I'm not sure if a consultant or any of the researchers have a responsibility to do it, but once a diagnosis is made I think that's probably where communication ought to start to help the carer. Whether that communication, I assume that it goes back to the GP, we didn't see the GP anymore after the diagnosis from the consultant.
Since the National Dementia Strategy was launched in 2009, the process of diagnosing dementia seems to be quicker for many than it was for the people we interviewed, but services differ across the country and many are not yet able to access improved support.
Last reviewed March 2015.
Last updated March 2015.