Tuesday, 9 October 2012

Empowerment - and disempowerment

One of the most frustrating things for someone with dementia must be the sense of losing control, of being unable to do things for yourself, of having to rely on other people for help with the most personal of tasks. Just the thought of being in this situation is pretty scary for most people who aren't in this situation.

Even if we weren't able to work this out for ourselves, people with dementia who are still able to do so tell us that this is the case. Much of the agitation and aggression commonly demonstrated by people with dementia who no longer have the language skills to explain their feelings probably arises from this frustration.

It might therefore appear strange that one common method of communicating with and dealing with people with dementia stresses the idea that they can feel secure in the knowledge that all their needs will be taken care of, that they no longer need to worry about doing anything for themselves. Is this what you wold want to hear in that situation?

To me, the approach appears deeply flawed. You're telling people who feel totally disempowered that they ought to enjoy that feeling. How frustrating is that!

More importantly, the best way of losing a skill is to stop trying to use it. If everything is going to be done for you, the few things that you can do for yourself will soon fall away. And your carers will have no idea of what you might be able to do with a little help and encouragement.

It's very easy for a carer to fall into this trap even if they don't accept the ideology. In many ways, life appears to go more smoothly if you do everything for the person with dementia because you can do almost anything more quickly and more efficiently.

But then you'll wake up one morning and realise that there's nothing they can do for themselves.


  1. I would love to know what "is best". I am not at all sure that there is a feeling of disempowerment with Sue as you mention elsewhere if you were to ask how she is or are steps a problem her answers wouls be 'fine' and 'no'. Though if you asked me I would have different answers.

    You are right about it being quicker if you do more things though, I have tried to include sue in some things but they do seem quite difficult or impossible. Hanging some washing on a line, scraping a carrot, filling a kettle.

    1. Possibly it depends on where the person is in the illness, Paul.

      I agree with you about the value in getting any kind of involvement. But as you suggest, very difficult at times.

  2. Yep that's why I told them at the nursing home to allow mom to wash herself as long as she can. I want her to feel she can be somewhat independent; however, she sometimes thinks she could be living alone, but we know that her memory is 30 seconds and that is not a possibility. She'd never be able to cook again, she couldn't remember to take things out of the oven, she could go to the grocery store for food, etc. But I do want her to do whatever she can for herself as long as possible.