Thursday, 20 June 2013

The importance of expectations

I have come to believe that the expectations that carers (family or paid care workers) have of people with dementia could be very important.

Some approaches to the care and treatment of people with dementia emphasise the need to convince people with dementia that they do not need to concern themselves in any way with anything at all.  Carers are advised, for example, never ever to ask direct questions and never ever to contradict.

This advice is sometimes presented regardless of where the person is on their dementia journey.  They could be at a very early point, recently diagnosed and still working.  It doesn't seem to matter.

This is a key aspect of what is sometimes referred to as 'compassionate communication'.  It might better be called the 'Don't worry your pretty little head about a thing' approach.

But it could be that this advice is not always in the best interest of people with dementia, even those like S who can do very little for herself.  I have always asked her direct questions and continue to do so.  Sometimes the questions have to be repeated, but if she understands the question she is usually capable of answering rationally.  If I had stopped asking her questions when it was clear that she had dementia symptoms, would she have been able to respond to questions years later?  I would not have known, and neither would anyone else.  But I suspect that, as in so many other cases, it comes down to 'use it or lose it'. I am not making any criticism of any carer who has realised that the person they are caring for is no longer capable of responding to questions.  Of course, anyone would eventually stop asking questions in this situation.

People sometimes find that when the person they care for goes into a care home or, worse, into hospital, there is a dramatic decline in their state of mind and their awareness.  There could be any number of reasons for this but perhaps one reason might be the absence of expectations or, indeed, unrealistic expectations, on the part of the staff.  We might surmise that the latter case is rarer.

The behaviour of people who do not have dementia is greatly influenced by the expectations of other people.  I think there are good reasons for believing that that people with dementia share this characteristic, though clearly it will almost certainly diminish as the disease progresses.


  1. Hi, nice post. Well what can I say is that these is an interesting and very informative topic. Thanks for sharing your ideas, its not just entertaining but also gives your reader knowledge. Good blogs style too, Cheers!
    When caring for an elderly friend or family member who has cognitive impairment, you can’t allow your own physical and emotional needs to fall by the wayside.

    - Day Care Dementia

  2. I agree. The trouble I have as a care worker is dealing with some (not all) family members who insist on talking about the person with dementia in front of them as if they are not there and in particular saying things like 'He seems a bit anxious today' 'He forgets to have a wash because of his dementia'.
    Because in some cases I spend more time with them, than the family does I can see my client (I hate the term service user) shrinking into themselves. Some relatives seem to forget there is still a person in there and don't want to be reminded of their condition, especially in the early stages when they are still aware of what is going on and must be quite scared.
    I recently wrote a blog (see link) about a gentleman who was staring at the four walls whenever I arrived and when I asked why he never went out, he said he couldn't because he was waiting for the carers to arrive. I then re-scheduled my visits so that he could go to various social events like coffee mornings and Singing for the brain (see link). The difference in him is remarkable, it was as if a light had been turned on, he was lucid vibrant and more alert than I had ever known. If people are allowed to slowly vegetate they will only get worse

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    1. This is an interesting and potentially useful idea as it can be very difficult to collect urine from someone with dementia. Is your pilot study only open to people in the US? (Just asking out of interest - we have more readers in the US than in the UK so your comment may well be of interest to some of them.

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