Dementia: ‘I Don’t Know What It Is’

 

Yesterday afternoon Pat a neighbour from across the road popped in to see how Maureen was doing.  After she had gone Maureen told to me that Pat had been ill and now had dementia but ‘she didn’t know what that was’.  She then asked me if I knew what dementia was and I gave a brief explanation.  She then said ‘you think I’ve got it don’t you?’.  I said I only knew what the medical people had said and Maureen made it clear that she had no recollection of their diagnosis of her condition.

Maureen seemed pleased with Pat’s visit and told her to pop in or call on us whenever she needed any help.  She didn’t seem spooked with the dementia issue and went on to comment on how fit and well she felt at the moment.  Maureen’s positive attitude on good days is impressive.  However, when the going gets tough I often  struggle to deal with the complexities of her presentation so I was very pleased yesterday to receive these helpful suggestions from Susan Macaulay:

‘One of the most useful things I’ve learned on this dementia journey is that when people who live with dementia exhibit responsive behaviours which appear angry and/or aggressive there’s usually a perfectly reasonable and rational explanation for it – from their point of view.

Such behaviour is not random (although it may appear to be), it’s not willful (although it may appear to be), and it’s not their fault (although it may appear to be).

“Problematic” responsive behaviour is most often the result of:

  • A physical issue they are unable to pinpoint and/or articulate (e.g. pain, incontinence issue)
  • A “trigger” or triggers in the environment (e.g. noise, temperature, activity)
  • How I or someone else has interacted with them

The obvious way to stop anger and aggression is to address the root cause:

  • Find and address the physical issue
  • Identify and remove the environmental trigger(s)
  • Stop blaming them and start taking responsibility for causing responsive behaviours

In the third instance, dementia care expert Teepa Snow suggests learning, practicing and using these six simple phrases to acknowledge the person, accept responsibility, diffuse the situation, restore positive energy and create the opportunity for healing.

  • “I’m sorry I was trying to help.”
  • “I’m sorry I made you angry.”
  • “I’m sorry I embarrassed you.”
  • “I’m sorry I made you feel stupid.”
  • “I’m sorry I didn’t mean to, but I treated you like a child.”
  • “I’m sorry, this is really hard.”

Meaning what you say when you say these phrases is important. Putting yourself in their shoes is helpful. Ask yourself these 20 questions to imagine what they might be feeling.

You can experience the power of the statements in the video below in which Teepa plays the part of a care partner, and the woman in the light blue top plays the part of a person living with dementia (see disclaimer)’.

 

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About Remember Me

I am a retired adult educator. My wife had a stroke in February 2014 and now has mixed dementia. Her recovery from stroke has been exceptional apart from 50% loss of peripheral vision and vascular damage. 'Dharma For Dementia' is my approach to being Maureem's Care Partner: it aims to end the suffering of 'Prescribed Disengagement' (Swaffer) .
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