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What is vascular dementia really like?

Discussion in 'ARCHIVE FORUM: Resources' started by Chris, Oct 6, 2004.

  1. Chris

    Chris Registered User

    May 20, 2003
    243
    Hello

    My Mum was diagnosed with probable multi infarct dementia (now called vascular dementia) in 1994 at hospital (later found out GP had entered the same diagnosis (but did not disclose it) on Mums notes 3 years earlier.

    Mum has lived in various care homes for 7 & a half years , now in general nursing home, - so is in at least her 13th year of dementia.

    All along I could see in Mum - an awareness of what was happening to her, but also that she did not want her immediate family to 'come out' with it. Even now I see it - she is 'saying' to me (purely through a look & tiny movement of facial muscles that I can recognise & on occasions little noises) that she knows all that can be done is being done & she is 'OK' . She doesnt want me to worry or fuss ! but does like me to visit regularly. Maybe I'm seeing things that arent there any more - but I dont think so - after all I wish I could kid myself that Mum is in a little world of her own, completely safe & in a kind of womb.

    Is there more 'awareness' with vascular dementia? If so - is it more important to give and discuss the diagnosis with the person themselves at an early stage? Is that best done by people other than the family? Why can some people cope with this awareness better than others?
     
  2. frazer

    frazer Registered User

    Sep 9, 2004
    42
    london
    diagnosis

    Its very good to see this information coming out. My dad was not properly diagnosed for a long time, which has been very distressing for the family. His GP fobbed him off as "just an old man", when as we later discovered, he had serious heart disease for some time. Now its too late to treat. Simple techniques such as blood pressure readings can show the this up. I'd encourage anyone who has concern for an older relative to press the GP, ask searching questions, get a referral for a heart scan if you have any doubts. The earlier you get the facts the better you can treat.
    Once again it seems you have to "make trouble"!
     
  3. bjthink

    bjthink Guest

    In what way is y/our view of these things changing?
    My 85-year-old mother has a diagnosis of 'mixed AD and vascular dementia' and the suggestion is that the series of 8 'fainting fits' she had in the late 1980s may have been TIAs.
    Her memory has always been very poor, so it's difficult to map the deterioration to this point, where her short-term memory has totally gone, especially as she told us, years ago, that she'd been diagnosed with Menieres, which had led to some short-term memory problems. She hadn't. That was a total fabrication. She has confabulated all her life.
    Her condition is not, to me, similar to AS at all, in that she has no 'flat affect', but is, as she always has been, frighteningly emotionally labile, physically hyperactive, and willfully malicious with psychotic episodes.
    I know something about neurology, having done a lot of research into Asperger's Syndrome and autism, and it's sometimes clear to me that certain parts of her brain have been affected, while others remain perfectly intact.
    She has refused over the past 3 years, since her diagnosis, to have any brain scans, but I believe that her condition is almost 100% vascular. Her 82-year-old sister, who was diagnosed six months before my mother, has had brain scans, and her diagnosis is of vascular dementia.
     
  4. emscub

    emscub Registered User

    Dec 5, 2003
    124
    Bath
    Personal experiences of vascular dementia

    My Nan was diagnosed with Vascular dementia around ten/twelve years ago although it started a few years before this and we have been increasingly caring for her for around ten or so years (and we weren't told of the diagnosis until about a year and a half ago).

    It seems that the information surrounding vascular dementia is very unclear. I have searched all over the internet for information and found a great deal of inconsistency.

    I have gained the impression in the past that there is still much that is unknown about vascular dementia and that this is the reason for the misunderstanding of many doctors and others of this form of dementia. It seems unclear, even, whether vascular dementia is guaranteed to actually progress to the end of life point that AD does. All the material I have read states a 'step-wise' progression, but are further TIA's (or whatever is causing my Nan's vascular condition) necessarily part of the condition?? I read somewhere that those with AD are actually likely to live longer than those with Vascular dementia, as the associated problems with Vascular are likely to cause complications with little medication (apart from Warfarin) to control the causes.

    My Nan has, without doubt, gotten worse over the years but, as a family, we're all concerned as to how long this 'progression' is going to last (if it is guaranteed to progress at all). Perhaps she's a rare case having survived this long.

    It's just so difficult seeing someone in this condition and not knowing how much longer, or having much support and understanding from the professionals.
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi all, the only common link that I have seen seems to be that the less oxygen to the brain, the more confusion. With my Mum, itwas due to Empysema and chronic bronchitis because she was a life long smoker. Now, we are getting very similar early symptoms from Andy's Mum. She has temporal arteritis, (hardening of the arteries in her temples) she is also becoming increasingly short of breath but has never had any chest problems etc till now and she has never smoked. The more breathless she is, like recently with a bad cold/flu, the more she behaves oddly & unpredictably and the similarities show. Does any one else see this or is it just me musing? Love She. XX
     
  6. Vicky050679

    Vicky050679 Registered User

    Feb 16, 2005
    1
    She`s gone now

    Hi all,

    My gran just died last night after hanging in for 3 weeks.

    She was diagnosed as having vascular dementia last year after suffering many mini strokes (TIA`s), although she had been ill for 6 yrs with memory loss.

    As i read more about this disease I wonder why it wasn`t diagnosed 6 yrs ago when she had a massive stroke or even treat as a precautionary measure due to the links with strokes.

    My gran new she was ill and wasn`t going to get better and had wanted to go on for many months as she was so unhappy.

    My gran brought me up and we were very close, I just can`t come to terms with the fact she`s gone now and don`t know how to comfort my mum.

    Any further research into Vascular Dementia is of great help, not only to carers but family members like me who don`t understand it much.

    I also lost my grandad on Boxing Day 04 to alzheimers, his memory had gone completely.

    Research into both these diseases must continue.

    Vicky
     
  7. thompsonsom

    thompsonsom Registered User

    Jul 4, 2004
    97
    halifax
    Hi Vicky

    So sorry to hear your gran lost her fight to live. I hope you can take comfort in the fact that she is not suffering anymore and hopefully gone onto a better place.

    Best Wishes

    Jan
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Vicky

    Sad news, but not really bad news because Gran is now at peace. Take things slowly to let this all sink in.

    Best wishes
     
  9. janey21

    janey21 Registered User

    Mar 11, 2004
    29
    sunderland
    hi vicky

    sorry to hear bout your gran i agree that research is important. i know its easier said than done but you are strong both for yourself and your mam. and your gran is at peace with ypur grandad now.

    jane
    xx
     
  10. janey21

    janey21 Registered User

    Mar 11, 2004
    29
    sunderland
    strange!!

    hi

    my grandad has vaxcular dementia and also ad, its hard caring for him but the likn between col/flu etc i think is because whenever they have any sort of infection it makes them more confused as the temperature is higher and harder to control.

    j
     
  11. bjthink

    bjthink Guest

    There is also the problem, in repeated chest infection, of cerebral hypoxia - not enough oxygen reaching the brain, and the brain therefore being scatter-gunned by lack of oxygen.
    I agree that if an infection takes hold, the effects can lead to confusion, for many reasons.
    Give your grandad echinacea, and see if this bolsters his immune system. It may not, or it may be a placebo effect, but it does work for some, as do slow-release Vit C and fish oils.
    Might be worth a try?
     
  12. janey21

    janey21 Registered User

    Mar 11, 2004
    29
    sunderland
    hey bjthink

    thanks i will try that sounds good.

    j x
     
  13. Dawnb

    Dawnb Registered User

    Mar 2, 2005
    30
    dublin
    Hello there
    My father who is 61 was diagnosed with Ad 5 years ago. Prior to this he had numerous "attacks" if you like to call it where he would almost look like he was about to pass out etc, greyness in his face, sweating, tingling sensation going up his body.
    the local GP said it was an imbalance in his hear and gave him something to take !
    Following this my father fell off a ladder at work and broke a bone in his back and since then he has never really been the same. What I am now wondering is that no one seemed to be able to link the previous attacks with his condition, but having read some information on the internet I now feel that these attakes may have been lacunar strokes ( mini strokes ?) and he may have infarcts demenitia a type of vascular dementia ? What I am wondering now is should he be on different medication ? would this help ?
    We try and help my mum out as best we can but she is at her wits end and I think she struggles with the fact that her own life will never be the same again. there are almost two people that you have to look out for, my dad on one hand who needs care, and my mum on the other who looks after him ( with the help we can give a couple of days a week) and needs to be supported.
    Sorry for the long post but just wanted to see if anyone had any advice
    Kind regards
    Dawn
     
  14. sue h

    sue h Registered User

    Jan 2, 2004
    28
    Maidstone, Kent
    Dear Dawn,
    I don't know whether any of what I've got to say is of any use to you but here goes. I'm in a similar situation to you as in having to help care for my Dad (who has been diagnosed as having vascular dementia) and also supporting my Mum who is struggling to cope. My Dad is 80 and Mum 78. He first showed signs of dementia over 5 to 6 years ago but wasn't diagnosed until last year, this followed umpteen visits to the doctor after being fobbed off with ' Its his age'. We were told that there isn't any medication for vascular dementia but just for him to take a daily aspirin to thin the blood. After a couple of very aggressive episodes this year the psychiatrist prescribed a drug beginning with C (I'm not even going to try to spell it!). This made him very sleepy the first week, which Mum thought was great and she actually got some sleep for a change, but after that it hasn't made much difference. I don't know whether you are involved with your local Alzheimers group, we've just contacted ours and they hold monthly tea parties and carers meetings. Also have you a local Crossroads group? They provide a sitter for 2 hours a week which gives the carer a break.
    Over the last month Dad has become increasingly confused and has started being incontinent throughout the night. Mum sometimes only gets an hours sleep. Last week we had a crisis on Thursday night, the phone woke me up at 11.15. I woke up pretty quick when I realised it was a paramedic I was talking to. When Dad tried to go upstairs to bed he had collapsed half way up and muttered that he couldn't feel his arm. Mum managed to bump him down to the bottom of the stairs but couldn't get him up and phoned 999. The paramedics asked me to go round to fill them in (Mum was in a such a state she could hardly speak), basically they wanted to know what to do. They said if how he was, was quite normal for him it was useless sending him to casualty as he'd only be sent straight home again. I agreed that it would be more upsetting for Dad (wasn't too sure if they'd get him into an ambulance anyway) and they managed to get him upstairs to bed with the instruction to get in touch with the GP in the morning. The GP called round on Friday afternoon and prescribed antibiotics, Dad had a bit of a chest infection following a cold. The GP didn't seem at all interested in what had happened the night before, didn't even bother to read the paramedics report.
    Mum spoke to the CPN today and she has strongly advised that Dad is admitted for a weeks respite care, she thinks that Dad may have suffered a mini stroke last week, and if he goes in for respite they will be able to assess him properly. Mum is seriously considering this as she is so tired and is finding it increasingly difficult to cope. Also the CPN is arranging for the District Nurse to call to give advice on Dad's incontinence.
    It takes a long time for carers to admit that they need some outside help but information is important for when they do. It's where to get the information in the first place that's the problem!!
    It's not easy when we really want to make things ok but can't. Feel pretty helpless (or hopeless) sometimes.
    All the best to you Dawn,
    Sue
     
  15. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Dawn and Sue, again, I too don't know if this is any help, but my Mum had Vas/Alz, definately more Vascular. She had many little strokes which were listed as TIA's (Transient Ischemic Attacks) her symptoms were as you both describe. Nothing could be done, either to stop them or help her over them. She was often a bit hyper before an attack then very slow and wobbly for a while after one for several days. She too could not have any of the drugs used for straight Alzheimers due to this. She had terrific mood swings and was as strong as anything when she was in a hyper state, very hard work. If you get the chance of respite, take it, you need all the help you can get. It will as you say give them a chance to do assessments. Love She. XX
     
  16. snuffyuk

    snuffyuk Registered User

    Jul 8, 2004
    188
    Near Bristol
    " less oxygen to the brain, the more confusion. "

    Believe it or not I know exactly when my mum's Vascular Dementia began.
    My sister came to visit and kindly offered to sleep in the next room to mum which was where I usually slept.
    In the early hours mum fell out of bed. My sister went to mums room and then came to wake me.
    Mum was facing face down on the floor and had been for a good 5mins +. The fall may have been due partly to mums diabetes but from that day forward I could tell things were very different.
    Loss of oxygen?

    Regards
    very tired snuffy
     
  17. mailife49

    mailife49 Registered User

    Oct 21, 2004
    34
    uk
    diabetes, high blood pressure and dizziness

    Hello,
    I haven't written here for ages, I find it more intersting just reading what every1 has to say right now.

    My mother is newly 91 (this month) and I haven't been able to see her for a whole year! which is horrible, but I am kept in touch through my family in Uk.

    I first noticed when my mother came over to spain in 1996 (for the last time , as both my parents where getting a bit fragile for travelling) although they had a LOVELY LAST TIME with us and my father thoughtfully labelled all the photos proudly and dated them , and they are priceless!!!!!

    Well, what happened was that around the start of her 2 week visit, mummy started to feel dizzy, and I noticed that her face was oddly twisted around the mouth, and she had lost a lot of weight, due i imagine to the onset of her diabetes, then I didn't take her diabetes too seriously but now I know just how important it was in contributing to this devastating disease known as vascular dementia, we knew she had a history of high-blood pressure ...... she gave birth to twins and i think they found out then...... she herself is a twin!

    Well, I went over with my family - husband (spanish) and 2 children every year after that and over on my own for Xmas , so I saw quite a lot of her and daddy.
    mummy- in summer for a month's stay. Mummy began behaving oddly a year or so before my father's death....they were like Derby and Joan!!! you know, things would go missing, watches and clothes and so on would end up in peculiar places, and as their was no daily help , it had to be my mother! A very talented woman, who could recite endless poetry and play a piano piece and painted (oil paintings) and played golf in mixed doubles and won lots of prizes even her last one when she was 80 which left us flabberghasted!!!!!! extraordinary person and very outgoing, sometimes a little difficult, but she always was! Then it progressed in a downward slide after my father died. He just kept going to the doctor's amazement for her sake!!!! an incredible man and sweet and gentle.
    But he found coping with mother very difficult as he had severe emphesema and even bought an automatic car to be able to take mummy for runs in the country........ and for the odd picnic with us. But we knew he was finding it impossible to get a break and yet not wanting to admit mummy was that ill.

    Anyhow, my mother would have agressive moments and then be sorry which was in a way how she could be in the past but much worse! She once pinned me up against the wall as I wasn't going to let her go home(NOT) to her childhood home actually, and had donned her hat and coat and saying , Well it's been very nice but i have to go now, and get the bus." I was alone with Mummy then and I just said , "Well mummy, I don't think it's a good idea, because there are bad people out there and it's dark........." It was a difficult moment.

    Now Mummy having been looked after by a care assistant since just before 2002
    began to decline and after my dad died, she would go and look for him and ask where he was and stuff like that , and the dilemma was should we say he was dead or that we didn't know when he'd be back - I used to say the latter as was worried she'd have another stroke.........(she'd had multiple infarcts) and the terrible fainting episode took place when she changed colour , a greyish tone, when with my sister......

    Now Mummy's in a nursing home, near where she used to live, and I'm going to see her in July - but i've been told she's had another fall recently as she's walking very quickly now that she's lost so much weight and in spite of her recent hip operation which was a great success......but they're putting her downstairs now with some other patients , as she doesn't like (never did!) being alone at night.
    and that way they can keep a better eye on her.......

    I've heard that she's lost a lot of her beautiful white fluffy hair,,,,,,poor mummy.
    She gets upset when a visits over from either my brother or my two sisters...and sometimes says, "why did you leave me in this horrible place?" b ut now seems to be more settled and tries to be sociable..... she recognises all of us, hope she remembers me(!?!!) and this is the funny thing about vascular dementia........ she wants to do things but can't......... oh, well . my sister went to visit her, and had to laugh when in the garden there, she turned to her and said, " well you haven't done a bad job here" SHE'S STILL MY DARLING, FUNNY MOTHER........ THE ONE WITH A WAY WITH WORDS., STILL GETS THE ODD REMARK IN THERE! will always love my darling mother, she tagught me not to be so sensitive about people and what they thought of me,,,,,,,,,,saying (when she was already ill) they say, what say they, LET THEM SAY........ i LOVE THAT.....

    TO MY MOTHER WHO WAS A LOVER OF FLOWERS AND BIRDS AND SWEET TO ALL THE ANIMALS - AND A LOVER OF MUSIC, you'RE LIVING HAS NOT BEEN IN VAIN, BECAUSE YOU HAVE HELPED SOMEBODY GOING DOWN THE ROAD (STH LIKE THAT YOU KNOW THE SONG?) AND TO ALL OF THOSE OTHER SWEET PEOPLE WHOSE MINDS HAVE BEEN CRUELLY ROBBED.........AS SB. IN THIS WEBSITE PUT SO BEAUTIFULLY, IN A POEM CALLED "MY WEE MOTHER" (?) ANYWAY TO ALL OF THESE PEOPLE UNDESERVING OF SUCH A CRUEL FATE, GOD BE WITH YOU ALL.
    mailife49
     
  18. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi, all I can add to this is that, every time my Mum had a chest infection which meant her breathing became more compromised, her dementia took a nose dive too. Love She. XX
     
  19. galliwotsit

    galliwotsit Registered User

    May 10, 2005
    35
    Manchester
    Same For My Hubby

    My husband was diagnosed with multi infarct dementia 18 months ago following 3 years of varied diagnosis'. He was pensioned off from work just as he had his 51st birthday following unexplained numbness in his leg, severe lower back pain, depression, and forgetfulness. The high blood pressure, manic episodes of depression and narrowing of carotid arteries came later. Everything seemed to happen at once. I have to thank his psychaitrist for sending him for every test possible, cat scan, mr scan, psychometric testing etc. It took 12 months to get his blood pressure medication right and now takes 6 different tablets to keep it at a stable level along with four other types of medication for his other ailments - arthritis etc. Last july he spent three and a half weeks in the acute stroke unit when he underwent all the tests again and they add white matter disese to the diagnosis but is this the same as MID. The TIA's were happening almost every other day it was such a diffucult time, but by the same rule it has hardened me and i no longer panic when they happen - I just worry more instead!

    He has today been out of bed for more than an hour since Wednesday when he started to feel really tired and his expression is 'Like a bag of ....' - just like I have flu. During Thursday night he woke shouting for me - his right arm was numb and he was struggling to speak. Another TIA - I should by now be aware of the signs 10 days ago he went thrrough his aggressive/nasty stage, this week he is tired and fluey - the pattern follows. This is the longest it has taken him to recover and his blood pressure has remained really low this time.

    It is so frustarting every time we hit a plateau something else happens but I am thankful for the times he remembers that i am his wife not his nurse - last night he rang me from his mobile fone (I was in the next room) to say goodnight and told me that he loved me. Not heard that for a couple of months so it was nice!

    Sorry if I have gone on a bit but to answer your question yes the similarities are there even though the 'experts' look at me like I am stupid when I tell them the build up is flu like symptoms - cold, tired, shivery, no energy, not eating etc. Like you I thought it was just me that saw this. Thanks !!
     
  20. HELEN

    HELEN Registered User

    Jul 16, 2004
    36
    wales
    Dear Galliwotsit,

    So glad to read your post & know i'm not the only one who thinks theres a pattern. I know what you mean when people look at you as if your stupid when you suggest it. My mum who has vascular dementia , arthritis, lower back pain, high blood pressure, irregular heart beat, plus other ailments (latest borderline diabetes) shows the same pattern. She'll be very aggitated for several days & very restless which gradually gets worse .Then weak, unsteady on her feet ,breathless & tendancy to feel light headed.This is accompanied by one of her funny turns (often hardly noticeable to those who don't know her well)such as stiffness in her limbs, pain in her head , slurred/ jumbled speech. Round this times theres a brief period where she is really lucid & high . Followed by a very runny nose & a bit chesty as if she is going down with the flu but doesn't come to anything .Then being very depressed , tearful & very insecure & then the terrible tiredness when she wants to sleep all the time & is more confused & off her food. Then after a few days she seems to recover & we are back on the plateau. Like your husband it seems to take mum longer to recover now. I find people blame the funny turns on other things such as her arthritis , hence the stiffness , she's coming down with a cold hence the headache & runny noise & cough . when these happen & she's awake she has a tendancy to sit with her eyes shut but she is awake as she will speak to you . This happened last sunday had a great visit & mum seemed very weak & unsteady but very lucid. Then tired & sat in chair with her eyes shut & when she tried to open her eyes briefly one of her eyes had rolled backwards .It only lasted a few moments & i did call a nurse but by the time she walked over mum had 'come to' & was complaining of stiffness in her hand & arm. As mum was lucid by this time the nurse said it must be her arthritis playing up & dismissed it. So i thought i'd imagined it . You've guesed what happened next, nose started running, coughing . Very upset & insecure on monday & has been sleeping all week & off her food. Only this time she is refusing to eat hardly anything at all & has to be spoon fed (could previuosly feed herself) & mum loves her food. Still waiting to see what the long term effect will be .

    take care

    Helen
     

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