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. everdrew89

    everdrew89 Registered User

    Nov 21, 2012
    36
    #1 everdrew89, May 4, 2019
    Last edited: May 4, 2019
    Just wondering if anyone has any experience of looking after someone with late stage dementia who develops compulsive walking? My husband is in residential care now and is capable of walking up to 25 miles per day up and down the corridor in the care home. He was losing weight and the staff were finding it difficult to get him to sit down to eat, but we have been working on that issue for a few months and things are now stable in terms of his weight. But now bowel incontinence has kicked in quite suddenly and the staff are sometimes finding it difficult to change him. He is currently on Aricept, Memantine (10mg) and Mirtazapine (30mg). He started on the Mirtazapine about 18 months ago and it made a big difference i.e. the pacing reduced, but I don't know whether it's just wearing off or whether it's just that the dementia is now worse ... It definitely used to be an anxiety thing but I don't feel it is anymore, I think it's now just a habit / compulsion ... We've got an appointment to see his neurologist on 16 May but the various medical professionals we have involved in his care at the moment are all quite anti-medication so I don't think anyone is going to push for any changes in his medication ... but if anyone has any experience of any medication which helped such an issue, I would like to discuss it with his neurologist ...
     
  2. Dano

    Dano New member

    Mar 14, 2018
    4
    I think the walking effect is quite common. My wife does about 25 miles a day. From 6 in the morning until 9 at night, then she collapses into bed. She loves eating on the hoof as well. The trouble is she forgets she has food in her hands and it ends up all over the place. I think it does become a habit. Did your OH like walking before his dementia? My OH did and I put it down to that, something they once enjoyed and they are using it as an escape from the feelings they have now.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,591
    Kent
    My mother used to be a corridor walker when she was in the care home even though when she was well she drove everywhere.

    My husband became obsessive about walking when he retired and this continued when he had dementia, until began to lose his mobility.

    Our consultant told us sedating medication could increase the risk of falling which is why it wasn`t prescribed.
     
  4. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,404
    Kent
    My experience for dad and his compulsive walking was similar to @Grannie G and during night as well. It didn't stop until end of life and GP didn't want to medicate...and I totally agreed...due to risk of falls which he became high risk of anyeay because of his dementia decline.
     
  5. everdrew89

    everdrew89 Registered User

    Nov 21, 2012
    36
    Many thanks for your replies ... @Dano Yes he loved walking throughout his life, and in the first care home when he was still able to communicate, he told me he walked up and down the corridors because he found it relaxing ... Generally he isn't in a bad mood, and I don't think anyone is going to be pushing for any changes in medication ... It's just the toiletting / changing him issue which slightly concerns me at the moment ... He's on 10mg of Memantine which is apparently not a therapeutic dose and some others on another forum have said that Memantine made their loved one calmer, so I'm wondering if we should try increasing it to 20mg or not ... The easiest thing would be to do nothing, but when he responded really well to starting on Mirtazapine 18 months ago, I regretted not having considered an anti-depressant sooner ...
     
  6. Dano

    Dano New member

    Mar 14, 2018
    4
    I don't think there's an easy way around the toileting, my OH is quite regular with No. 2s so I try to be aware around that time and try to encourage her to hit the loo. That's when she's not constipated. I know this is difficult when OH is in care as you cannot be there all the time and if a regular time is not apparent.
    I feel the medications are a minefield, there seem to be a lot of pros and cons whichever 1 you try. You feel you should try some and then worry that it could cause more problems. I think try it and see how it goes, you can always go back to the old dosage.
    Sorry got to go, OH has done an unexpected whoopsie. Have fun.
     
  7. everdrew89

    everdrew89 Registered User

    Nov 21, 2012
    36
    Thanks for your reply @Dano ... yes that's good advice, to just try it and then to revert to the old dosage if it does not help ... My husband spends a couple of days at home with me and when I'm with him, I can normally pick up when he might need the loo, or just proactively take him to the loo on a regular basis, and therefore keep him clean ... But it doesn't work like that at the home, they just change everyone four times a day before mealtimes ... but I get the impression they are not always able to change him because he is very busy walking and doesn't want to be interrupted ... It's relatively early days though in terms of his incontinence so I'm hoping that, just as the staff eventually got used to how to get him to eat, they will in time eventually get used to how to manage the toiletting ... Anyway, I take my hat off to you for being able to manage your situation at home (and for sounding so zen at the same time!) ... All the best ...
     
  8. Dano

    Dano New member

    Mar 14, 2018
    4
    I don't think I've been called a zenist before, should I be worried, do I need more medication or is 1 glass of red enough? Hang in there. All the best.
     
  9. Kat loves milk tray

    Kat loves milk tray Registered User

    Jan 1, 2019
    27
    My Dad has been in a care home since last December and this is what he does day and night, pace the corridors. The staff don’t seem to mind him pacing up or down. When we visit we do manage to sit him down to play dominoes and encourage him to have his meal and drinks as we stay over teatime.
    Then prior to leaving he is back pacing and repeating, I’m going home.
    He gets agitated so is on Trazadone 50mg and Lorazepam (if required).
    He does not sleep well on a night so he was prescribed a small dose of zopiclone which has now stopped. I would like this started again as Dad does not have a good sleep routine and keep be up,pacing during the night.
     
  10. Andyp101

    Andyp101 Registered User

    Dec 5, 2017
    36
    Your post brought back so many thoughts and feelings. My Mum was the same. She carried a toy dog with her but walked endlessly along the corridors of the CH. So much so that as she was already suffering heart failure she would hold onto the railing, breathless and exhausted. The staff tried to get her to sit ('Die!' was my Mum's response); I tried to get her to sit ('No, I will not!'). I have no real solution, I'm afraid. The things I did was to suggest a cup of tea (difficult to drink on the move) and instead of 'Why don't you sit down, Mum?' I turned it around a bit and said 'Are you tired?' (Mum would think about it and eventually say 'Yes'. We would then sit down together and I would play some music on my phone.) Nothing earth shaking. I'm afraid but I hope it helps.

    Another thing: the CH Manager would always go on about slippers. Mum walked around in her stocking feet and the CH was concerned about Health and Safety. I suggested slippers to Mum and she said no. Why? 'Because old people wear slippers!'
     
  11. hrh

    hrh Registered User

    Sep 16, 2017
    59
    I would imagine walking is either therapeutic or continually searching, going some place, needing to be somewhere. A previous rambler would prefer a flush rather than the Bush, so maybe interrupt with a toilet break then off again, after so many miles ramblers stop for a coffee, tea, snack break. I wonder if asking if you can join in their walk it would or you could trigger the above mentioned. If it is the latter roaming in search of something, maybe a work shop, their old job etc, I just cannot imagine how their brain copes with the little information they have left, but I do believe it all makes sense somewhere, it just trying to unlock where the person with alz/dm is in their journey
     
  12. everdrew89

    everdrew89 Registered User

    Nov 21, 2012
    36
    Thanks for your comments everyone ... so we saw the neurologist yesterday ... He has recommended increasing the Memantine from 10mg to 15mg for two months and then to 20mg ... I'll report back if it makes any difference ...?!

    @Kat loves milk tray ... The psychiatrist attached to the nursing home where my husband is is extremely reticent to prescribe Zopiclone on PRN as he thinks it would be overused by the staff ... But we're in a support group for couples with young onset dementia and one husband gave his wife Zopiclone for about three years as he was still working and needed her to sleep so that he could sleep ... He's weaned her off now and I think she's on Trazodone now too ... My husband tried Trazodone when he first started getting sleep disturbances but it made his insomnia worse so I had to get him off it quickly ... he switched to Mirtazapine and that helped a lot ... It's all trial and error unfortunately ...
     
  13. annad

    annad Registered User

    Jun 13, 2013
    6
    My mum is in a care home and until recently was walking around constantly. She would sit down to eat but found it hard to concentrate on the task in hand. She had PRM zopiclone to help when she got agitated at night and couldn't sleep but this could knock her out the next day and make her prone to falls. I think the walking is a physical manifestation of the mental confusion i.e. searching for something that's been lost.
     

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