We are looking at dementia from the wrong perspective.  Applying the medical model to dementia is totally unhelpful.  This leads to a personal deficit approach to the sufferer: a concentration on what they can’t do.  If we look in another direction we might just focus on what they can do.  That is the view we need to take of those who sufferer the indignity of dementia.  We don’t want to saddle them with the shortcomings of the medical model. Once again I will use personal experience to substantiate my point.

Caring for someone with dementia 24/7 can be exhausting and I had reached a position where I need respite.  I have been raising concerns about changes in my wife’s presentation for the last month or so..  In plain English further deterioration, or a dip in her functional capacity, had become clear .  Respite is difficult to achieve and I had to pull a few strings to get things moving.  No need to give detail here but I had to play ‘hard ball’ to get my own way.  I got my day and night off but my poor wife is still reeling from my time away.

I accept that my antics made it difficult to arrange ‘familiar faces’ in the house.  However, I am beginning to see that some sectors of professional staff have no real understanding of dementia.  They wanted to use my respite as a period of observation to see how my wife is.  She wanted to stay in the comfort of her own home and blankly refused to go to an Assessment Centre.  Questions have to be immediately asked at this juncture what would have been the point in observing my wife in strange surrounding?  It gets worse than that.

If we switch to my wife’s reality here: the only focus for anyone who is attempting to support someone with dementia. She has seen a succession of new faces in her own home who have told her that: ‘I have gone away because I am exhausted’.  Can you imagine what might pass through the mind of someone with dementia?  Have her charges not heard of ‘Compassionate Communication’ or ‘Love Lies’.  Why didn’t they tell her I had gone to see my mum?  This would have been the truth and accepted by my confused wife.  I could go on at length about my poor wife’s appalling experience during my absence it would fill several pages.  My point is that we appear to be surrounded by people who simply don’t understand the condition and they make things worse for all concerned.  Something needs to be done to stop this charade.  My wife often says : ‘they think I’m mad’  I now feel tempted to reply: ‘you are not but they are’.