1. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    Hi all just been told my mum has mixed dementia. Vascular and Alzheimer’s.

    Mums dementia seemed to progress really quickly over a matter of weeks. Anyone have any experience of this type? I’ve looked on line but it’s all very vague. For example what’s the life expectancy what else should I expect? Please be blunt I need to know what I’m dealing with. Thanks in advance x
  2. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    My dad had mixed dementia. He was diagnosed in 2015 but it had been obvious for at least a couple of years before that he was having problems. He started getting lost and forgetting where he'd parked his car. He died last year at the age of 90 from a stroke.

    I think it's difficult to tell how long or how fast mixed dementia will progress although dad was told that it would be faster because it was mixed.

    The first few years we managed quite well but by autumn 2017 things started to get more difficult and by spring 2018 I was starting to struggle. He needed help with personal care by then as he couldn't remember that he needed to wash etc even though he still could.

    Dad's death was sudden and unexpected although I suspect he would probably only have lasted a few months more if he hadn't had the stroke.

    Even though your mum may have declined a lot recently it's quite possible that she could remain at this level for quite some time.
  3. Helly68

    Helly68 Registered User

    Mar 12, 2018
    Mummy has mixed dementia. She is about six years in and due to a trauma - undetected appendicitis, she took a very sudden downturn in terms of mobility and ability to do things.
    Now, the thing I notice most is the swift deterioration of her language. Most of what she says now is strings of words, the meaning of which is only apparent to her - much to her frustration. She is able to feed herself, mainly with her fingers and relies on staff to transfer and for all personal care. On a good day she can respond to a question such as "Would you like a fruit snack or a cheese snack". It helps that she has a good appetite and loves fruit.
    Sadly she has periods of "agitation" often during personal care, where she will bite, spit, kick or hit the staff, and occasionally other residents. CH staff have been brilliant at managing this.
    Mummy also has bipolar disorder and I think staff and others do have a hard time trying to predict her mood, though she is pretty stable on lithium.
  4. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    East of England
    My husband was diagnosed in March 2018 with Alzheimer’s disease with some mixed dementia and three months earlier you would have been hard pressed to know he had anything wrong and he has progressed very rapidly to now, when he is too ill to do anything much at all except shuffle about, dress with difficulty but does little else in personal care, sleeps a lot, does very little activity, can’t concentrate and won’t eat much. I have just got carers to come to help him with personal care. We went on a cruise in March 2019 but by May he was unfit to travel and had two weeks respite care. Now he is having a second respite stay while I have some much needed rest and have the holiday I had planned for us both last year. I did not expect the speed with which he has gone downhill, week by week, month by month. I thought he would be much worse today than he actually is but supplements to stem the weight loss seem to have helped. I don’t even think about life expectancy, but this is a progressive disease and terminal with no fixed length of time. I plan from day to day, week by week but otherwise try not to think about it. I don’t know and neither does anyone else. Please do as much as you can while you can, don’t push to do too much and leave plenty of time for any activity. There is a lot of support on TP.
  5. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    My mother-in-law was diagnosed with mixed dementia in 2015 . Due to her preexisting mental health conditions family did not realise for some time that she actually had dementia.

    Her decline was slow and steady for the first three years after the diagnosis. By the beginning of 2018 she had progressed to the stage where she was completely unable how to prepare any food for herself . By that time she already had a carer's visits 3 times a day. My husband and I had power of attorney and we had taken over all her finances at the beginning of 2015. She was able in those three years to do some sort of personal care herself but she refused to allow the carers to assist her in any way . Throughout those three years her hair was not washed at all.

    She had a very steep decline in the summer of 2018 in the heatwave which actually resulted her going into hospital at that point we realised that she was unable to be alone in her own home anymore. In the space of a week she went from being able to recognise her own home to no longer recognising where the bathroom was in her own house. She struggled with cutlery and with feeding herself. She needed prompting with the simplest of things. We arranged for her to go into a care home where she spent her final days
  6. MrCanuck

    MrCanuck Registered User

    Jun 9, 2016
    Ontario, Canada
    With Vascular Dementia the decline is often in sudden steps. You can go for long periods of time with little to no change, then a sudden drop, or a series of small drops over a period of time as small strokes or TIAs cause damage to the brain. As these damaged areas can be in different parts of the brain each TIA can result in very different types of declines.

    With ALZ the decline is often more of a slow and steady variety. So, with mixed dementia you may notice the slow decline of ALZ and then all of a sudden, every now and then a more severe drop from the VaD

    My mother had mixed dementia and this was how it was explained to me and how I actually saw things go.
  7. Debbie64

    Debbie64 New member

    Sep 4, 2019
  8. Debbie64

    Debbie64 New member

    Sep 4, 2019
    My mother has been diagnosed with mixed dementia,which was done via a memory clinic, she has not had any brain scans and I wonder how this is diagnosed with this kind of test.She has gone downhill fairly quickly, she still lives alone as she doesn’t want to go into a care home, she has Caroline fitted and meals on wheels, she no longer dresses herself or washes, and she smells very high. I wash her once a week. I am like you where I really not sure what to expect, I don’t think there is an awful lot of help out there. She phoned the police regularly and has severe hallucinations,seeing people in her lounge, on the other hand she does have days that are quite normal and she is back to being Mum.
  9. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    Hi thanks for all the responses.

    It would be some much easier if there was some way to identify what stage someone was at I don’t want her to linger for years like she is it’s so distressing to see.
  10. Rosserk

    Rosserk Registered User

    Jul 9, 2019

    Hi Debbie64

    I was told that for a diagnosis it’s a three step process. First they do a cognitive test, which she failed miserably! Then she had a brain scan and finally a psychiatrist came and spoke with her reviewed the results and confirmed the diagnosis. I was told without all three tests completed a diagnosis is not confirmed. Her brain scan showed vascular changes and some shrinkage. She presents with symptoms of Alzheimer’s but the vascular changes confirm mixed dementia.

    I have no idea what’s going on, I was given a prescription for Donepezil. I couldn’t ask questions because mum was getting really agitated making it impossible to talk to the psychiatrist. I am not sure how much longer I can cope my mum lives with me and is a real handful. She can be nasty one minute and sobbing like a baby the next. She will ask me the same question 20 times in the space of ten minutes and won’t stay still she wanders around all the time. It’s a 24 hour job she wanders all night and is paranoid and has hallucinations. She will get in the shower if I get everything ready a couple of times a week so I don’t have the problem with her not being clean although I do have to grab her clothes if I can because she wears the same ones over and over!
  11. CardiffGirlInEssex

    CardiffGirlInEssex Registered User

    Oct 6, 2018
    This is very interesting, my mum has a similar diagnosis and although her cognitive function seems to be declining quite slowly, last weekend she had a sudden loss of mobility and bladder control. I wonder if that could have been caused by the vascular element of the disease.
  12. Rosserk

    Rosserk Registered User

    Jul 9, 2019

    That makes a lot of sense! She had problems for years with memory and it was a slow decline you would have been forgiven for thinking she didn’t have a problem but over the last 4 weeks the difference is astounding!
  13. Debbie64

    Debbie64 New member

    Sep 4, 2019
  14. Debbie64

    Debbie64 New member

    Sep 4, 2019
    Thanks for the information, I feel like I am getting nowhere fast, I was told by the memory clinic that was her diagnosis, she has got far worse over the last month with vivid hallucinations seeing and talking to people in her lounge,she has mobility issues , I will be moving her in with us for the winter and am dreading it, she phoned the police over 10 times this month, nothing seems to happen I have spoken to social services who are not really interested. She is on quetiapine which doesn’t seem to do much, I even thought she may need sectioning as she has completely lost the plot.but another day she is fine.
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    I’m sorry that you are going through this. I email & copy all agencies concerned into these emails.
    Social services have a duty of care & a legal obligation to do a needs assessment & carers needs assessment. Don’t take no for an answer.
    Ring the consultants secretary & ask to speak to the consultant. Pester your mums GP & the community nurse team.

    Personally I couldn’t move in with Mum, her vivid & violent hallucinations meant early on I wouldn’t stay over.

    It’s horrible but you have to step away & let a crisis happen before anyone helps at times. Only then with adult safeguarding & proper evaluation will your mum get the help she so desperately require.

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