1. Nessa456

    Nessa456 Registered User

    Nov 19, 2004
    131
    West Midlands
    My Father is 70 and over the last 2 years his memory has got worse - he says that he often can't remember what was said in a conversation a few minutes previously. Other people. say they wouldn't know he had a problem. My Mother did tell me the other day however that on a trip to town she had arranged to meet back at the shop where she left him but on returning she couldn't find him and after looking for nearly an hour she went home and found him there which was rather worrying.

    He is assessed every so many months by people from a local NHS 'Memory Clinic' and he was prescribed Aricept, which he has been taking for several months now.

    What i would like to know is whether the fact that he's been prescribed Aricept categorically means that he has some form of dementia or Alzheimer's or whether Aricept is prescribed for general memory problems also? How bad does the memory have to be before Aricept is prescribed?

    Really I want to know what is likely to happen in the long run. I've asked my Mother what the people from the Memory Clinic have given as the diagnosis but she is very vague about it, which could either mean that they don't yet know or that she's hiding something from me.

    She doesn't generally like to talk about the subject but I feel we need to be aware of all the facts and prepare for a possible worsening of my Father's condition.

    I would like advice regarding how seriously we should be taking this situation and what we ought to be doing, if anything, in the meantime.

    Nessa
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Nessa, welcome to TP. You may find our fact sheet no. 407 useful. Really, you need to ask the specialists in charge of your Fathers treatment to find out what is going on. They are the only ones who can advise you of a diagnoses. You may also find it useful to look at some of the other fact sheets, they cover many subjects to do with dementia and possible ways to help cope with it. If your Father does indeed have the illness, there is much here which may be of use to you.This is a very worrying time for your family, here on TP we will do our best to help you find some answers should it prove neccessary and ways of coping. No two families have exactly the same journey, but we have many members with many experiences so you should never feel alone. Please continue to post so that we can support you through this difficult time. Love She. XX
     
  3. John Bottomley

    John Bottomley Registered User

    Apr 7, 2004
    30
    Nessa, I'd agree with you completely that it's worth knowing what's going on and get for feel for, as you say, "what is likely to happen in the long run."

    I've had peronal diffficulty here, with a hospital consultant refusing to share any information despite her having consent to do so, but thankfully this is pretty rare.

    Overall, what Sheila said :) Really you need more information from those getting/interpreting the information to get some sense of what the truth of it all is. Although guessing, I'd be surprised if a memory clinic is giving Aricept if there isn't dementia.

    Really you're in that tricky position of knowing all's not right, and treatment for something's been started, but the details just aren't clear. Maybe either visiting clinic with them, or writing a note for them to take to clinic, would shed some helpful light on things.
     
  4. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Nessa
    Welcome to talking point.
    my wife was diagnosed 7 years ago with Alzheimer's,by a consultant Psychiatrist specialising in care of the elderly.
    He prescribed Aricept 5mg and then increased to 10 mg.
    We attend every 6 months to assess my wife's memory state.
    I think that you need to know who is at thi memory clinic,and who prescribes Dad's tablets.
    Aricept is prescribed for dementia,one of only 3 tablets available.
    You should go with Dad to the clinic,if he is agreeable,I would surprised if the consultant objected.
    Regarding Mother being secretive this is quite common, people tend to try and manage alone and don't talk about the problem
    As Sheila says no two journeys are the same,but there are common threads applicable to all.
    Hope this helps keep posting we are here to try and help
    Best wishes
    Norman
     
  5. Nessa456

    Nessa456 Registered User

    Nov 19, 2004
    131
    West Midlands
    #5 Nessa456, Nov 20, 2004
    Last edited: Nov 20, 2004
    Hi

    Thank you all for your informative replies. I will ask my Mother if she can give me a bit more detail concerning what she's been told and perhaps give her some questions to ask on my behalf the next time my Father sees someone from the Memory Clinic (I think they visit him at home usually).

    I have read quite a bit about research being done into the possible causes of Alzheimers and it seems like they have made some major discoveries recently but that it will probably be a while before this can be put to practical use in the form of specific medication.

    Has anyone on the board taken part in new drug research trials?
    - these seem to me the best hope of potentially getting the most effective treatment.

    I would also like to point out that I may come across as a bit blunt - this is probably due to my having Asperger's Syndrome.

    Nessa
     
  6. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Nessa,

    If at all possible I'd really recommend going to the memory clinic with your father and mother - if possible.

    Write down a list of questions and try and get as many answers as you can - perhaps we can all help with that.

    If I don't do this I always end up getting baffled and confused and leaving non the wiser. I even do this with my GP as a 10 minute appointment goes in a flash....

    take care
    Craig
     
  7. Nessa456

    Nessa456 Registered User

    Nov 19, 2004
    131
    West Midlands
    #7 Nessa456, Nov 20, 2004
    Last edited: Nov 20, 2004
    Thanks Craig, I'll ask if I can attend My Dad's next appointment.
    It's just that I know my Dad is very sensitive about his loss of memory as he finds it very frustrating as he is the sort of person who 'lives in his head' and also prides himself on his intellectual abilities I think. So it's a potential 'loss of face' thing as much as anything and I didn't want my parents to think I was implying that they aren't managing the situation well already.

    I get the impression that perhaps where I'd give the Memory Clinic person the 3rd degree in terms of loads of questions, my parents, being more emotionally involved would probably actively steer clear of asking too many questions as they might not want to hear the answers. I don't mean I'm not concerned about my Dad and not sympathetic to his problems, just that I naturally tend to focus more on the information side of problems than the emotional where other people are concerned ie my empathy skills can be sometimes a bit lacking. That's why I want to help in terms of doing any research regarding the condition that is necessary.

    My Nan had dementia/possible Alzheimer's and I previously joined the Alzheimer's Society at the time she was ill to gain more information (I wasn't on the internet at that stage).

    She died about 6 years ago and spent her last months in a residential care home. I was very upset at this as she was evidently very distressed each time she had to go back there after coming to my parents' house for the day. I remember her punching my Dad on the arm as he took her inside and shouting 'You don't love me!'. It was heartbreaking as there was a perfect logic to her argument and I felt like just taking her out of there and bringing her to live at my house.

    Before the dementia, when she lived in her own bungalow, she used to say to me 'You won't let them ever put me in a home will you?' and I promised her I wouldn't, so I felt like I had betrayed her.

    I understood my parents' position though; my Mother, who is 70 (like my Father), said at the time that both her and my Father would not be able to cope if they had my Nan to live with them and I do believe that to be true - my Mother is a very giving and caring person and she would not say something like that lightly.
    My Nan had been living in Sheltered/Warden managed Accommodation at first but she had a fall and had to go into hospital and it was decided that the Sheltered Accommodation was not appropriate for her as it is for more independent people really so she wasn't totally safe there.

    I know that the unspoken fear in the back of all our minds is that my Dad might go the same way as my Nan.

    On the face of it though I don't believe this will happen as my Dad is a very logical person, not prone to displaying his emotions and as he uses his brain in terms of doing crosswords and thinking a lot I think he may have stored up more protection possibly.

    Nessa
     
  8. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Nessa, if it would upset your Dad for you to be there, is there any way your Mum could give permission for you to speak to the team caring for your Dad privately? I did this a couple of times for my Mum as she too was very proud and I wouldn't have hurt her feelings for the world. If you cannot be there, could your Mum perhaps pass on a letter quietly for you? Just ideas, may not be possible I know. Thinking of you, it's so hard, especially at the beginning when you are so desperately looking for answers. Love She. XX
     
  9. Nessa456

    Nessa456 Registered User

    Nov 19, 2004
    131
    West Midlands
    #9 Nessa456, Nov 21, 2004
    Last edited: Nov 21, 2004
    Thanks Sheila

    Myself & my parents had a very frank discussion about things yesterday and, as I'd suspected, they just don't want to dwell on things so don't really want to find out any more than is strictly necesary. My Dad said it's a morbid thing to dwell on and my Mother said it wasn't nice for my Dad to have it talked about a lot.

    She said they were well aware that things could/would get a lot worse but they would cross that bridge when they came to it; that there was no point getting themselves unnecessarily worried when there wasn't anything they could really do about it anyway.

    They agreed that I could see the consultant when they next attend though and we're about to start our own mini-trial of how effective taking daily vitamin B is over a measured period as this is said to reduce high levels of homocysteine and sharpen the mind. (This was in a very interesting article on Alzheimer's and the various tests that a person can take to establish a 'base cognitive level' ie something to compare future possible decline with. I think what my Dad probably has at this stage is what was referred to as ECI - 'Early Cognitive Impairment'.

    An organisation called OPTIMA are about to run a major study to measure the levels of homocysteine of people with ECI, to find out if B vitamins reverse the impairment. (Quoted largely from the Daily Mail of Tuesday Nov 16th 2004).

    I will be checking this out on their website.

    Thanks for everyone's support, I feel a lot more positive about things now.

    Correction - OPTIMA is the 'Oxford Project to Investigate Memory and Ageing', here is a link to the site:-

    http://www.pharm.ox.ac.uk/optima.htm


    Nessa
     
  10. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Nessa,

    Thanks for posting the link to optima, very interesting reading.

    My mum and dad don't like dwelling on the subject, especially when it gets down the nitty gritty medical issues and of course the future. I get round this by finding out as much information as I can and drip feeding this information to mum (and dad), as and when they need it. Good luck with the consultant - hopefully she/he will be very postive about you getting involved.

    Kind Regards
    Craig
     
  11. Nessa456

    Nessa456 Registered User

    Nov 19, 2004
    131
    West Midlands
    Thanks Craig

    Nessa
     
  12. MJK

    MJK Registered User

    Oct 22, 2004
    54
    We've been in a very similar situation, with my father suffering from dementia, but my mother refusing (or forgetting) to pass on information about his health to us. This week my brother saw their GP who was very informative, and filled in a lot of details for us. I think it depends on the attitude of the GP as to whether they will divulge confidential information like this, but we were impressed by his understanding in providing informmation to concerned family members.

    Maybe you could try talking to your parents GP.
     
  13. thompsonsom

    thompsonsom Registered User

    Jul 4, 2004
    97
    halifax
    hi Nessa

    In terms of vitamin B i would ask the doctor is a blood test has been taken for this as with my m/in/law, we had been seeing the mental health consultant for about 4 months before he finally said he would do a blood test for various things it came back that she was lacking in b12 but it is not good taking it in tablet form when your body is so low of it, it has to be taken in a course of injections, 3 a week for 2 weeks. We have found the mental health system quite slow in helping my m/in/law and it has taken 6 months to actually get her on the aricept when we feel it would have benefited her months ago before she had got as bad as she did. We are seeing a slight improvement in her memory now since she has been on it 2 months she suprised us the other day by remembering a relative had been to visit the day before. Also she is putting sentences together and holding a conversation better.
    all the best
    jan
     
  14. Nessa456

    Nessa456 Registered User

    Nov 19, 2004
    131
    West Midlands
    #14 Nessa456, Dec 11, 2004
    Last edited: Dec 11, 2004
    Hi Jan

    Thanks for your reply. I told my parents about the possible benefits of vitamin B and gave them a supply which my Dad was going to start taking. I haven't checked since whether he's been taking them as I felt that I had a bit of a rant at them when the subject was first brought up, so thought I'd leave it up to them and not interfere too much.

    I was surprised that they did actually go along to a social meeting group for retired civil servants though (I advised them that they should do some sort of socialising type group thing as this would be of benefit). My parents aren't really gregarious - family get togethers are the main form of group socialising or one to ones with friends, and this is much more my Mother than my Father. Anyway, they said they'd be going again so I was really pleased about this as I feel that they have a lot to offer other people in social situations as the are both very nice, polite people, good listeners and can make interesting conversation as opposed to just waffling on about nothing as a lot of people tend to do.

    Vanessa
     
  15. Chesca

    Chesca Guest

    Dear Nessa

    Have you told the consultant that your father is taking vitamin B supplements? He may, or at least the CPN may, need to be aware of this in monitoring your father's progress.

    I am rather alarmed that there appears to be a supposition that an enhanced intellect may subsequently serve to reduce the impact of AD. There's an awful lot of evidence to the contrary in my experience. I believe that to be a fiction. As I do the use of caffiene and other bits of what, in my opinion and experience, are mumbo jumbo. The cold, hard fact of the matter is that AD is no respecter of class, intelligence or lifetime accomplishment. If you have it, you have it. How you manage it is up to you and your loved ones at the end of the day.

    Isn't it rather unkind to dismiss the 'waffling' of those who may be a little less fortunate than others in their social skills? Forgive my bluntness, it's my nature.

    Good luck
    Chesca
     
  16. Nessa456

    Nessa456 Registered User

    Nov 19, 2004
    131
    West Midlands
    Hi Chesca,

    Thanks for your reply. I think I might not have explained things very well. I advised my parents to attend some sort of social event precisely because my Father doesn't socialise in groups that much and because it has been recommended that social interaction (of any kind) is good for the brain in terms of the neural connections it encourages etc. It also brings people out of theselves, which if my Dad was dwelling on his loss of memory functions would be a good thing.

    I certainly had no intention of implying that my parents were superior intellectually or socially. They are shy and retiring and have tended to often prefer their own company to that of groups.

    I wasn't linking intellect with Alzheimers, just saying that socialising is recommended as mental stimulation.

    I apologise for the 'waffling on about nothing' point - I often don't think through the implications of what I say or type. I did mention in an earlier post that I have Asperger's Syndrome, which while it doesn't excuse my bluntness does give a partial explanation for it.

    Vanessa
     
  17. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Nessa,

    I'm not sure if communication / sociailising will slow down the onset, but for what it is worth, I've definitely noticed an improvement in confidence and well being since my dad has started meeting more people. Confidence is a big issue with dementia, as people can feel withdrawn and depressed very quickly when they lose the ability to communicate. It is of course down to the individuals personality, but in my humble opinion, the more that a person can continue communicating in any form, the less likely they are to become withdrawn and depressed.

    Distractions and variety keep a bit of quaility in someones life.

    Good luck
    Craig
     
  18. Nessa456

    Nessa456 Registered User

    Nov 19, 2004
    131
    West Midlands
    I totally agree Craig.

    I myself am quite isolated and don't tend to get on very well in groups so work plays a major part in helping me to get out and mix with people. I get very depressed if I'm not in a job as work gives me a lot of my self esteem; it doesn't come from the social side of life which I'm not very good at.

    I think work was providing this function for my Dad too so that when he retired he lost a major support structure.

    Vanessa
     
  19. Chesca

    Chesca Guest

    I wish it had been the case for us. My mother had worked most of her life successfully in a pressured environment and was, in her earlier days, very much a party animal and great dancer - we had wonderful parties, still talked about by people I meet, especially at this time of the year. Contrast this with her behaviour as the AD started on its sinister course (unbeknownst to us). She became almost agaraphobic, terrified of visitors to the house (running upstairs in panic to hide away). In an effort to try to reintegrate her into some form of social interaction, taking her into a room of people, my father and I always with her, caused her such anxiety bordering on panic we decided that this was cruel for her. We learned for her that familiarity with her surroundings was all important. You can imagine the problems trying to get her to a day centre for some respite for Dad - it just didn't happen in the end.

    Even now in the nursing home, she always chooses to sit away from everybody else when she is capable of such mobility. I hate seeing her sitting on her own but take some comfort that she doesn't see it in the same light as I.

    Too damned sad.

    Chesca
     
  20. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Nessa
    my wife has lost all confidence,because she has forgotten how to light a gas fir,prepare a sandwich and where the light switches are,so she opts out and will not tackle tasks.
    But she will still talk to anyone although her coversations are becoming a bit disjointed now.
    Part of her life she taught kids,her second job in a fashion department.
    We went to social events, dancing classes,many friends (3 left now) but I don't believe any of it has influenced the progress of AD.
    There again we are all different
    norman
     

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