1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Dotty

    Dotty Registered User

    Aug 16, 2005
    6
    Surrey
    My husband has been ill for ten years, it has indeed been a learning experience, and a roller coaster. A testing time for families and friends.
    We were told that he had Alzheimers.
    I suppose the run in was he became a bit paranoid, then he became fixed on"The Universe", so we bought many books and maps of the Universe thinking that, that was an interest. At dinner with friends and strangers in the middle of a conversation he would suddenly say "What about the Universe" Friends who knew he was ill became very adept at turning the conversation around to Universal affairs, thus hiding the fact from strangers that it was an out of context remark. We were living abroad at that time and came back home four years ago.
    He was allotted a specialist in Geriatric problems and I never thought to question why he was dealing with my husband. This year he has had two large epiletic fits and has been in hospital. The specialist always seemed unable to take my call, eventually I said to the secretary that I needed to find out if epiletic fits were normal.
    She told me that the doctor in question was a geriatric psychiatrist.
    I discovered whilst my husband was in hospital that he had vascular alzheimers, without any dementia .etc. So for four years we were seeing someone, who had not made that definition, he would have been better with a neurologist!!!

    I did find that to begin with friends are often reluctant to visit. Their favourite remark was "But - will he know me"? I would reply " NO - but you know who he is". We have now many friends visiting, even if they stay a short time. Reggie cannot speak , but his face lights up when people appear, he most often does not know them, he scans their faces and if they are smiling, he picks up on an energy level that they are there for him - and that is enough.
    Keep the humour going - black humour can be good. Laughter is infectious, and he understands that.
    Can we sort out clearly - please the difference between vascular and dementia, so we all have an easier route for supplying the right care.
    Bye for now - keep strong,
    Dotty
     
  2. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    The slippery world of definitions

    My mum has a diagnosis of mixed Alzheimers and Vascular Dementia, and I understand tha this is actually often the case. As accurate diagnosis is pretty much impossible while the person is still alive, you will probably find the definitions very slippery and loose. From what I have learned over the last year or so, one of the biggest differences is the pattern of progression: with vascular dementia, the pattern is of steps downward - within the general context, I've definitely seen that with my mum.

    The particular emphasis of symptoms may also be different, and memory problems may not be the first sign. With mum, with hindsight, it was moodiness - depression, becoming very judgmental, and periods of real verbal aggression (we're having one of those right now). The factsheet (http://www.alzheimers.org.uk/Facts_about_dementia/What_is_dementia/info_vascular.htm) might be helpful, caveated that it's different in every case.

    I noticed that her walking slowed down suddenly about a year ago (a scan last year gave a diagnosis of small vessel disease, which seems to fit the printed description). But the sudden marked steps suggest she has also had a number of small strokes - each time there is a degree of subsequent recovery, but the general trend is still that a step down has taken place.

    She definitely also has periods of particularly acute confusion, although the confusion is generally slowly deepening, and is becoming increasingly delusional. We had a period of hallucinations, but this seems to have abated for the time being.

    My impression is that care is really about focussing on the individual and their particular symptoms rather than the type of dementia involved, particularly as definitive diagnosis is so elusive. As others have suggested, keeping a diary that records the daily pattern of symptoms and behaviour might be helpful to give information to the professionals.

    I hope this helps.
     
  3. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Not saying that you are wrong Dave (my experience or research is nowhere near as comprehensive as yours or Dotty's) but there may be a simpler explanation ref. the slower walking.

    My Mum is only in the early stages (not even officially diagnosed yet) but both her hearing and her eyesight have deteriorated quite dramatically in the past 18 months. Whereas 3 years ago she stepped out briskly & confidently when walking, now she tends to walk very carefully, almost as one does on icy paths. Likewise stuff in the fridge gets out of date, I think because she doesn't notice it any more (and I can't get her into the habit of putting on her glasses - she didn't need to wear them all the time previously and can't seem to take in that she needs to now. Says "Oh yes" but never does it)
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Here's another viewpoint that might apply. Lost spatial awareness [very common].

    I visualise the walking thus:

    Imagine it is after dark.

    You have been taken into a house that is not familiar to you. The front door has been opened and you have been helped inside. The door is closed. There are no lights.

    You walk ahead, feeling where the floor may be using your feet - carpets make the floor a different height, or they may slip; furniture may be there somewhere.

    How do you walk? You are in the dark and unable to determine, other than by each step, what lies ahead.

    You walk slowly.

    I agree with Lynne too, deterioration of sight will undoubtedly come into it.

    Dotty -
    vascular is a type of dementia. Alzheimer's is a type of dementia. As Dave says, vascular tends to develop in a series of steps as strokes happen. Alzheimer's tends to be more a slow progression, without defined steps.

    My wife too has been diagnosed with both Alzheimer's and vascular. It gets confusing!

    A Definition of dementia [from Wikipedia]
     
  5. Mirium

    Mirium Registered User

    Oct 29, 2005
    23
    Surrey
    Mum

    Oh heck!! Just as we thought we had come to grips with AD the consultant tells us Mum doesn't have AD, she has Vascular Dementia!!!!

    Is it so different?? I've looked at the info on the way they progress differently.
    Are there any other major differences?

    I feel as if we are starting all over again!!

    Mirium
     
  6. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Mirium,

    Sorry to hear how the different diagnosis took you by surprise. You can read more about vascular dementia on the Alzheimer's Society web site:

    http://www.alzheimers.org.uk/VascularDementia/index.htm

    It may feel as if you're starting all over again, but the diagnosis is only one part of a very complex puzzle. The most important piece of the puzzle will always be your mother: the person she is, her likes and dislikes, her relationship with you and the other members of your family.

    Take care,

    Sandy
     
  7. Mirium

    Mirium Registered User

    Oct 29, 2005
    23
    Surrey
    Thanks for your help Sandy. I downloaded the booklet, "Understanding Vascular Dementia", it's great, very informative, I would recommend it to others dealing with VD

    I also printed off "What is AD?", and I thought this described Mum's condition more accurately, but perhaps it will become clearer as time goes on.

    Does it really matter what label we put on this awful disease??

    Very grateful for your help and support, thanx!!

    Mirium
     
  8. janemary

    janemary Registered User

    Feb 1, 2004
    37
    Enfield
    vascular dementia

    Have been reading messages about vasc. dementia and it has taken me back to my husband's early onset of this illness. Diagnosis for us was very confusing and I found that it differed from other illnesses in that doctors. neurologists, psychiatrists and everyone else seemed concerned only with "managing" the behaviour and not thinking about how to improve quality of life. My husband died in 2004 and as you say I learned a lot as I went on - many things I didn't want to learn - but he the inner core of him remained even when his behaviour was unpredictable and to everyone else he appeared to be "not the man you married". Re the glasses : Phil and I had a constant battle in the early days when he wouldn't wear his glasses - like your mum he hadn't had to wear them all his life - now I realise he didn't wear them because even if he did he couldn't understand what he was reading re dates on food etc. He couldn't remember what these things meant. Walking slowly etc. - I think one of the differences of VD and Alz. (I may be wrong) is that co-ordination and spatial awareness deteriorate fairly on in the illness . This was certainly the case with my husband. Good luck to all who are caring - keep some time for yourselves. Janemary
     
  9. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Motto from the bottom of my tear-off calendar;
    "Experience is a comb which nature gives us when we are bald" - Honestly!
    :rolleyes:
     

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