Why is it so hard to get a diagnosis?

Discussion in 'Younger people with dementia and their carers' started by HeatherR, Jun 30, 2004.

  1. HeatherR

    HeatherR Registered User

    May 19, 2004
    6
    Derby
    Why is it so hard to get a diagnosis?

    I am a 49-year-old female who has been having memory problems for about 4 years. When I saw a neurologist just over a year ago he said that I mild cognitive impairment or mild early onset dementia and that I had an 80% chance of that progressing on to AD. I have had to wait a year for an MRI scan (OK) and my latest memory testing has shown that my memory has not declined significantly, however I feel that my personality has been hit this time as even I can identify significant changes in my behaviour. I am now waiting to visit the neurologist again, but he has already warned me that he is unable to make a diagnosis until my memory testing shows another fall from 28 to the magic figure of 26 on the MME.

    As I saw my Grandmother decline with this dreadful disease, I am only too aware of what is happening to me. It is very hard to look back and admit that I have already had to give up my career (computer consultant and lecturer) and that I am having problems just going out of the house or talking to people without my mouth saying the strangest of words!!

    Talking Point and the local Alzheimer’s branch have been a brilliant source of information but as I have not yet had a diagnosis there is no other support available. My GP has not got a clue as to what to say to me, he can only suggest yet another anti-depressant (which make me feel dreadful and even more confused than normal) to fill in time while I wait for the next appointment. My husband works long hours and he simply cannot face what is happening to me at the moment.

    What I don’t understand is this need to let me decline to a certain point before I can receive any treatment to help my quality of life. I feel that I need a diagnosis so that I can move forward rather than waste time and I desperately need some support.

    Has anyone any suggestions?

    HeatherR
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Heather,

    First of all, thanks for coming to the forum.

    Why is it so hard to get a diagnosis? I think we have all asked that.

    Well, I'm no medic, but I see the situation like this.

    It would be all too easy for a doctor to simply say "ah, that's dementia", but it might be a totally wrong diagnosis, and one that cannot at this stage be backed up with evidence.

    Your symptoms include memory problems.

    What sort of memory problems? Remembering names? Remembering where your house is?

    Many people can't remember names of people they are introduced to, or even have known fleetingly. I'm one. I reckoned that out when I was 12, and ever since, I never refer to anyone by their name in a conversation, even for those I know well. That's because I have to be consistent, otherwise it shows that I don't know the name. So with me, that memory problem is normal. Normal, but always inconvenient.

    Other reasons could be depression [as a cause, not an effect], or excess alcohol.

    Forgetting where your house is would be more challenging, but if you had a lot on your mind [eg worrying hugely about possible dementia] then you might momentarily be unable to focus on something very normal. Again, alcohol could cause that - don't get the idea I am suggesting you are a lush, it is just that at one stage our GP believed that my wife might have been an alcoholic, so obviously that happens. She wasn't, by the way!

    Some medications can cause problems.

    There are probably lots of possible reasons why people have memory problems, and that is a problem to the doctors. Weeding out what precisely is wrong.

    Personality can be hit if you are really scared about what is happening to you. Confidence goes. You may become introvert where before you were extrovert [like my wife]

    What sort of personality changes have you noticed?

    The uncomfortable fact is, that dementia is often the diagnosis of last resort, because there is no absolutely clear indicator. If a person with dementia came out in green spots, and that only happened with dementia, then it would all be so easy to diagnose.

    From the moment I suspected that my wife had dementia, which was five years before I had the formal diagnosis, I decided that we would try to enjoy ourselves and wring as much value out of our time together. I'm eternally glad we did that. As far as I know, Jan never knew exactly what was wrong, though she was tons brighter than I was/am so probably figured it out. That worked as much as it could.

    You say "I feel that I need a diagnosis so that I can move forward rather than waste time and I desperately need some support"

    If you had such a diagnosis, what would you do differently than you do now? One thing many of us have learned is to live each day for itself. Actually, that's a pretty good maxim for life anyway.

    A final thought: do try and engage your husband in this; it does no good for him to stay aloof from your concerns. He is your closest link and the sooner that he involves himself, the better for him and for you.

    By the way, early onset dementia does not only mean Alzheimer's; the end result is the same but the passage is different, according to the type of dementia. Most people tend to use Alzheimer's as a shorthand for dementia of any flavour.

    A post final thought.... and I always suggest this to others as it is what I did [I was in the computer business too, from 1965 until last month when I'd had enough] - keep records of your days; things you note about yourself, feelings you have; what you cannot remember; what you can remember, etc. If you don't do it daily, then it may all merge into a continuum where you can't recall what happened and when. Such records may help doctors understand your situation in more detail.

    My very best wishes to you for the future. Please do wring as much out of the forum as you can.
     
  3. HeatherR

    HeatherR Registered User

    May 19, 2004
    6
    Derby
    Thanks you for your points Bruce.

    Sadly, however, I have battled down the path of other alternatives and I am facing the only one left. I have had extensive testing done by a psychologist on my memory and the neurologist said that the faults that they found there are more indicative of AD.

    Whilst I understand the difficulty of diagnosing dementia, being left in limbo facing the probability of a future diagnosis of dementia without any support is enough to drive anyone right around the bend. It seems that I am caught between being too ill to work and function as myself, yet not ill enough to be given a diagnosis.

    I have learned to live for the day, as each one can be so different. Some days I can face the world and manage a trip to town for an hour, but in contrast, on bad days the cats and I retire to the wardrobe for some peace and tranquillity. I don’t stray too far from home as I become very frightened when lost, and I have learned not to stress myself by doing too much.

    All of this is very different from the person I used to be. I feel as if I am backing away from the world because I understand less and less of what goes on around me. I simply cannot process the information that is flooding into my brain and I have problems both using the correct words and getting them to come out in the right order!!

    Have you any tips that I can try to help my husband face what is happening in my head? He is a workaholic, working long hours to try and wipe out what he does not want to see at home. He refuses to talk about why he finds me in tears after a bad day, or why I cannot understand some things anymore. He thinks that by shouting at me I will understand better, and he cannot understand why I have lost most of my organisational ability. We did manage a long holiday in New Zealand earlier this year and I think he began to realise then that there is a problem, but he simply does not want to acknowledge it now.

    HeatherR
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Heather,

    To be honest, you quite stun me! There are so few people who have been diagnosed who are able to subscribe to the forum, and your steady courage is an inspiration.

    There are two important things, I think, for me to say to you.

    I'd guess that, having been a lecturer, and having been involved with all the logical imperatives of computer-related work, you may be able to stand just a little objectively away from your illness.

    So, you will have ready information about what may happen - always keep hope anyway! - so you know that, as we all do, you have a finite time left. As I say, that's the lot of all of us, you just have a little less.

    I'm renowned for meandering in my writings, so here's another bend in my trail: some years ago, as a person advising a university in Yorkshire how and why to implement my company's software in their statistics courses, the person I was helping build the courses was full of life, and really enthusiastic. We talked of all the highly important things their graduates would know. At the end of one key meeting, I drove the 5 hours home really excited and two days later, the university called to say he had been knocked down by a car outside the university gates, and he had been killed.

    The point is that, while you have less time than some of us - you have more than others who may be younger, fitter, etc. The point I would take on if I were you is that, unlike the man I have mentioned, you [AND YOUR HUSBAND] have time to plan that style of living for the day. I never did that until Jan came down with dementia; I live for every second now!

    Firstly, about your husband.

    I don't know his work circumstances so can only suggest things. My company was magnificent in the lengths it would let me manage the amount of time I worked. For a period of 6 months I did nothing at all, yet they still paid me, and kept me on. His may not be able to be so good.

    But he needs to know that in 6 months, a year, two years time, he may be bashing his head against a wall, saying to himself that he wished he could have his time over again, to enjoy every second of your time together.

    You say he is a workaholic - that implies that he works so hard and long out of choice [to wipe things out, whatever], not out of necessity.

    Have you said clearly to him that you need his help in negotiating this business? Men find that tears in women are difficult to handle because understanding the reasons can be painful, and we don't usually have the neccessary soft skills to help.

    If he knows the diagnosis you have so far, then he is simply in denial at present. Doesn't really work at all. Best he learns that sooner rather than later.

    All I can say is that what I did - rather than to run as far away as fast as I could, which is what all my senses [and some of my family and friends] told me to do - was to turn the other way and try to beat the worst effects by understanding what was going on, and giving Jan as much support as I could.

    Between the two of you, you have a fairly unique situation. You as a patient are clearly intelligent and still at the very early stages. Your husband, as your husband but also as an 'observer', could, if he chose, gain insights as to how you are progressing far better than the doctors can get. He can help them as well as helping you.

    I can only speak as the equivalent of your husband. It may have been that the only way I could handle the situation was to look at Jan in two separate ways - as a very dear wife, and as someone I was trying to understand, almost objectively.

    I kept and still keep copious observations on day to day happenings good - and less good. In doing this, I was turned from being scared at what was happening, to recognising it, and being bl**dy certain that if there was a way to sort it, then I would try.

    Bottom line is that the sooner he buys into the situation, the longer the two of you will have together.

    Oh I wish I could say something uplifting every so often, but above is the best I can do.

    A final point, as, I fear, with me there is always a final point. some say I never stop....

    Jan was intelligent, as you are. I so welcome your posts and do encourage you to add more over time. We who care for other people rarely get such important feedback as you have already given. We can all gain from using this forum, both in giving and accepting.

    My very best wishes.
     
  5. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Heather
    what a remarkable person you are,to be able to discuss and realise what is happening.
    When my wife was first diagnosed AD I could not accept it,for a while I burried my head in the sand.
    When the situation finally became clear to me I determined to give all the love and care that I could for as long as I was able.
    I am not sure does your husband go with you to see any of your medical people,if he does do they not explain the situation to him?
    I he doesn't go with you could you arrange that he did and could they then discuss the situation with him?
    I hope this is useful for you when I understood what was happening I found it easier???? to cope
    Very best wishes
    Norman
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,708
    Female
    Dundee
    Hi Heather
    I obviously can't understand what and how you feel - that is beyond me but I do empathise with you and your husband. My husband has been having treatment for three years now and is, like you, at the early stages of the disease. I know that he was showing symptoms before this and I suppose I did try to keep my head in the sand to begin with. I have a demanding career and as he is in the early stages I have kept working. Since his diagnosis I have gone to all of his appointments and have been asked to contribute to his assessments by answering questions about his capabilities. In this way I have grown to understand what is happening and while I might not like it I try (sometimes not very successfully) to understand what's happening and how he must be feeling. I do have times when I get angry (sometimes at him when I know I shouldn't) but that's life. It has really taken us the 3 years since the diagnosis to take steps forward For ages we didn't tell anyone about the diagnosis. Eventually we told family and only in the last couple of months have told our two closest sets of friends. I am so glad that I stopped trying to ignore what was happening. I now feel part of my husband's programme of care and I have a say in what's happening - this is especially important in terms of powers of attorney etc. While he is in the early stages we are doing everything we can together. He may not remember exactly what has happened in a holiday but he knows he had a good time in Egypt or wherever - at the moment that's better than nothing and it means we're still sharing things. Now our close friends know they can still come to dinner and they understand why my husband talks about things which happened 40 years ago rather than last week!

    I do hope your husband reads this forum - persuade him if you can. Ther is so much he could find out from others in similar situations and I'm sure, like me, he will be grateful for it as time goes on. As someone else said the sooner he accepts what's happening the sooner he will realise that he needs to enjoy every minute he can. My husband became very depressed at one point and I'm sure that's because I was reacting the way I was. Although he is now on anti-depressants I feel that the improvement in his mood is partly due to the fact that I am more accepting of what's happening.

    As far as my work is concerned I no longer go to conferences which involve an overnight stay or undertake anything which means that I will have to stay away from home for any length of time. While I know he could cope I would be worried sick in case he forgot to take medication or became really upset or depressed. I rather be at home with him than be abroad delivering inservice courses!!

    Sorry for the ramblings. Good luck and take care.
    Izzy
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Thanks again Heather for starting this thread. It is one of the few where two sides of the caring partnership can talk together and I know it helps illuminate things uniquely for me.

    Like Izzy, during the early stages of Jan's illness, I started to curtail attendance at conferences and making trips that were overnights. The first signs that Jan showed were faints/fits/strokes - I always called them faints as that is how they appeared, to me. One night when I was staying over in Belfast, I called Jan as usual and she fainted mid-phone call.

    I was scared stiff because I had no way of knowing if she was okay, or of getting home to help her before noon the next day. Fortunately I have a good memory for numbers so I was able to call a near neighbour to have them check she was okay. They called me back later to say she was.

    I never stayed overnight on business again, unless I could arrange for my Mum to stay - and she had stroke/diabetes problems and lived 100 miles away!
     
  8. John Bottomley

    John Bottomley Registered User

    Apr 7, 2004
    30
    Hope

    As Bruce said, it's always worth trying to be hopeful.

    On a positive note, although you've problems, you've seen psychology who reckon they've not bad enough to call dementia. Although managing uncertainty is hard work that takes a toll, it's very good news that things haven't progressed to such a state that folks are talking of dementia.

    Also, it's worth remembering that ideas of dementia (and you've not yet been diagnosed with this) have shifted markedly over the last decade . . . there are people in the USA with proven Alzheimer's Disease who have had the condition for over 20 years.
     

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