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.