Friday, 23 March 2012

Something to think about

If S was on one of  the drugs used to treat people with dementia  -  which she could be  -  I and the professionals would no doubt be absolutely convinced that the recent improvements have been brought about by the medication.

When you look at the 'small print', even the drug companies often only claim that a minority of people taking the drug will show any benefit. If the improvement for some of these patients is actually brought about by something else, the drugs are even less successful than they would appear to be (i.e. they're not very successful at all).


  1. Hello (I just realised I don't know your name),

    Thank you for writing your blog. I have been back to the beginning to catch up, what a story you have here. Lovingly and clearly written.

    I have a long standing interest in dementia. My Grandmother (on my Father's side) died of aggressive vascular dementia. It was horrible, and I will never forget what I saw. That was 25 years ago and the family was totally unprepared. I'd like to say that we know better now.

    My Mother died last year and my Father who has been teetering on the edge of dementia-depression for many years, is now showing classic signs of dementia, although only recently short term memory loss too. The doctors have told me to keep a diary of the weird stuff he does, as he is in denial. Then they may consider drugs.

    I worked as a volunteer in a local dementia group, a day care setting where carers got respite for 1 day a week. It was the most rewarding time of my life. We found that simple yoga practice, even just breath awareness, helped to quiet the mind, so that we could read newspapers, do arts and crafts, or play quizzes. It seemed to be associated with distraction from trying to remember, engaging another part of the brain.

    I have worked in medical research for a number of years. The work I do on cardiovascular genetics has also been linked to inflammation in dementia, so I continue to read around the subject.

    I am pleased that Mumsnet has taken on your blog, and that you will get lots of visits and comments.

    With very best wishes to you both,
    Lesley x.

  2. Many thanks for your kind words Lesley. I'm always grateful for comments and you obviously have useful experience so please let me know of anything that you think might help. The inflammation theory certainly interests me.

    I've heard other people say that Yoga can help. A problem that I encounter now (will post at greater length soon) is that we're now attending various therapy groups/sessions and it seems that S is the most challenged participant whereevr we go so that even simple things that I would have thought she might manage are very hard for her. So perhaps even simple Yoga might be too difficult for her to do?

    Anyway, thanks again.

    1. I understand about the yoga but try breath awareness. By that I mean, concentrating on breathing, then counting the number of breaths, slow it down. It creates a 'space' in the brain. Then if possible, do other breathing exercises such as alternate nostril breathing. I have used it successfully with dementia patients, adults with autism and in my own Mum, when she was so frightened of her cancer.

      We have been trying hypnotherapy with Dad.


    2. This is really interesting Lesley. I thought hypnotherapy might help but I think I left it too late as the therapist I tried was concerned about the issue of consent.

      I certainly believe from my own experience that slowing down your breathing can have great benefits. At one time I did it nearly every day for 10 to 15 minutes and it was great for relaxation. Must try to get back to it again and it certainly can't do any harm to try it with S. Thanks for the recommendation.

  3. Oxygen deprivation can be a problem in vascular dementia. With Mom we can get the headaches, dizziness and hallucinations stopped by putting oxygen in her nose. within 15 minutes they are gone. Before we tried oxygen, she was having terrible hallucinations at night, bugs all over her, the bed on fire; that type of thing. But in the daytime her oxygen level was too high for them to give the oxygen. So I got them to check it while she slept and without 30 minutes of entering rem sleep, her oxygen levels plummeted, and they started giving the oxygen at that point. On those nights, she didn't have any hallucinations. So now it is a given, she gets it as soon as she goes to bed. But if she starts getting headaches or dizziness while I'm there in the daytime, or even weepiness, i grab the oxygen and within 15 minutes things are righted. I don't know about AD, but vascular dementia is definitely helped by oxygen, as I've heard is migraine headaches.