1. meka

    meka Registered User

    Jan 25, 2006
    2
    After reading some of the messages about younger people with dementia i am left feeling a little confused. My sister was diagnosed around four years ago at the age of 53. Most of the people that have posted seem to be aware that they have a memory problem but my sister has never appeared to realise this. I have even seen a program with a dementia sufferer saying that without the aricept drug he could not tie his shoelaces, drive or hold a conversation but without it he cannot. I cannot imagine how someone with dementia could ever be able to drive. my sister cannot even write her surname and has forgotten how to use the bathroom without someone leading her all the way and even then it is difficult for her. Just recently she has had a few urinary accidents day and night but doesn't seem to realise what has happened. It is difficult to know how to deal with this especially in public. when i have to go into a toilet cubicle in public with my sister i find it embarrasing for me and for her but she just does not know what to do on her own. Any tips on dealing with this. my sister looks perfectly ok and i wonder what people must be thinking. It makes me feel a bad person to even be worried on how to deal with this and that i should just take it in my stride but it is difficult.
     
  2. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    #2 Lynne, Feb 22, 2006
    Last edited: Feb 23, 2006
    Hello Meka, and welcome

    How sad for you and your sister, to have to cope with dementia. Has your doctor suggested Aricept for your sister? Whilst it can't cure, it can buy quality time IF the patient doesn't have an adverse reaction.

    Dementia and/or Alzheimer's Disease is so difficult to pin down; there seem to be infinite individual variations in symptoms, stages & rate of deterioration. At the same time there are many common symptoms when you look at Dementia overall.

    Some people seem to realize they have memory problems and, depending on their individual characters, seem to accept it, get distressed about it, go 'into denial', or vigorously resist any suggestion that anything's wrong.

    Regarding embarrassment at dealing with 'incidents' in public places, I have seen the suggestion here of the carer carrying a ready-prepared card, simply explaining in your own words, that your sister has a health problem and sometimes needs your assistance. This can be shown to (for instance) shop assistants, so that they can more easily understand the situation. Most people are kind & considerate, so long as they can be assured that there is no need to be concerned.

    Please don't feel bad about being worried how to deal with unexpected events; we're all just ordinary people, who feel embarrassment, guilt, sorrow, worry and all the other emotions. Just take things one at a time, day by day. You may find it useful to keep a diary of your sister's health, and any changes in her abilities to manage things. When you next visit the doctor, or are visited by your sister's social worker or Community Nurse, you will have this information available for them.

    I hope you will find Talking Point to be helpful; people here understand what you are dealing with.

    Best wishes
     
  3. meka

    meka Registered User

    Jan 25, 2006
    2
    sister early dementia

    Thank you for your reply, My sister has been on aricept for some time but is about to come of it as there does not seem to have been any improvement at all, in fact there seems to have been a more rapid decline recently. My sister is cared for by her family but myself and my other Sisters take it in turns to take her out. I feel lucky that there is more than one of us to help out. It must be a nightmare for people who get little or no respite. I really don't know how people cope on a one to one basis as i know it is a 24hour job. My sister tried the day care centre but hated it. It is a horrble thought to know that things will get worse. (i know that this sounds depressing but i am just being realistic) I don't know how quickly things change in people with early demetia but i have heard the decline is usually quicker in early dementia sufferers. Is that true? Also the last memory test done at the hospital gave my sister a result of 9 points, the previous one was 12 points. how bad is that on the scale of things. Thanks again for your reply
     
  4. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Radar Key

    Meka,
    I think it is wonderful how you are sharing the care of your sister, and you are right in thinking that this task is a little easier if it can be shared.
    A small practical tip re. your sister's need for assistance in the toilet: ask your local council for a 'Radar Key' (they are usually free of charge if you can explain why your sister needs it). This gives you access to all disabled toilets, and I am not exaggerating when I say that it was an absolute godsend for us - the cubicles are large enough for both of you, you have somewhere to deposit bags/coats etc. and still assist your sister, and what's more, they are invariably a lot cleaner than ordinary public toilets. You will soon have a mental note of where these toilets are, which will make your trips out a lot more enjoyable.
    Good luck, and enjoy your outings!
     
  5. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Mecka

    Depending on the indvidual consultant,the results of the MMSE may be taken with the consultants observations and how he/she considers the patients general mental health to be.
    Low scores alone are not bound to be conclusive.
    Based on my own experiences.
    Regards
    Norman
     
  6. Trebor

    Trebor Registered User

    Mar 21, 2006
    7
    up North
    The main purposes of the MMSE are as a repeat test to show deterioration over a period of time and unfortunately to determine appropriateness for anti-dementia treatment. The MMSE on its own should no way determine diagnosis. I use the MMSE almost daily and Im not a big fan of it for measuring levels of dementia. Scores can be skewed by IQ, education, dysphasia etc. For example some of my colleagues have difficulty spelling WORLD backwards!
    Evidence of maintenance of daily living skills are just as important especially as observations from carers.
    The medics and the powers that be in the NHS like such measures and scales. The most important thing is that clients needs are met and that them and their carers are supported in every way possible.
     

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