duckling feet – pattering on the wet concrete
This morning’s walk was curtailed by the weather; I thought I would use the down-time to document something I heard last week.
I was at a meeting of the Yorkshire & Humber Strategic Clinical Network (YHSCN) for Older People’s Mental Health and Dementia (OPMH&D).*
One of the speakers, Professor Ian James from the University of Bradford was talking about a contentious area of health and care, particularly in relation to dementia, namely, ‘Behaviours that Challenge.’
This area is difficult, partially, as no one has as yet agreed on a name for the situation, (behaviours that challenge, challenging behaviour, behaviour and psychological symptoms, distress…) also because it is equally unclear who has the problem or if there is a problem (or disease state) at all.
As with all the other over-wordy words of medicine, this has an abbreviation – BtC. I’ll use that, although somehow, reducing it to three letters makes things more difficult.
What are BtC?
Well, classically this is ascribed to situations where a person who has dementia interacts with the outside world in ways that are at odds with the desires or expectations of others. There are all sorts of BtC – someone who won’t sit-down when they are at high risk of falling, another person who won’t or can’t sleep at night, taking your pants off and peeing in the corner, shouting-out for mum.
All of these ‘behaviours’ to me have a common denominator – distress, and, it is this that links us to whether these are a condition or a natural response to difficult situations.
To explain more; If I imagine that I am in a room and I can’t find a way-out and I need the loo and cannot communicate this to the other people, either because I am fearful, too shy or simply unable and, I really need to go, I might go in the corner.
Is this reasonable adaptation to an impossible situation or a symptom of disease?
What has become apparent is that in families and in particular care homes that are for whatever reason dysfunctional – that is, aren’t harmonious in some ill-defined way; for example, the leadership of the home is poor, there is significant staff stress and absence, or, the husband or wife have their own mental or physical health problems and are exhausted, struggling to support their spouse who has dementia – it is in these situations where BtC become more prevalent.
I have seen this myself countless times, when I have been called to see a patient who is described as either being aggressive, violent or unmanageable. Usually the intention is that I sedate. Yet, when I approach, using whatever means is necessary – sometimes slowly, hesitantly, at other times in a confident, ‘I’m the doctor’ manner, I rarely encounter the same response.
Nora 98, violent and aggressive becomes, Nora 98, who wants to hold my hand.
George 76, outbursts of uncontrollable behaviour, becomes, George 76, into trains.
Do you see the point?
Who is it who has the problem?
Are the behaviours challenging or are people challenged? Challenged to think beyond standard clinical models of patient and nurse, or to think outside of the medical box?
In the past BtC were frequently addressed by medication – often antipsychotics which worked by knocking people out (probably making them more fearful) and at times, killing them.
Now we are learning that language, behaviour, how we behave and relate to people living with dementia is probably more important than the medicine; care, compassion, empathy, time and understanding are often what is needed.
In care homes where staff have been supported and in particular, trained in understanding people, receiving lessons in person-centred care, the high levels of BtC disappear. No need for medicine, just some one-to-on teaching time – something that is rarely provided as standard for the carers working either out in the community or in care homes.
I realise it have come to the end of this blog and I haven’t even explained the title – overthink. I am afraid, this will have to wait until the next time, although I promise you it is fascinating.
Have a good day.
*Expertly organised by Colin, Penny and Carole.
5 thoughts on “Overthink”
So many years since Prof Kitwood propounded person -centred care, but each carer ( bringing their own social, emotional and physical plus relationship history) learns, to whatever extent, anew – and in the family home , most often without a training course.
Many people with dementia , particular!y younger onset, in some countries , have campaigned against the use of the term BPSD.
Looking forward to the ‘Overthink’!
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Thank you. Hopefully tonight!!
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Great Blog Rod
such a complicated subject area
The event was also expertly chaired too by you !! 🙂
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I’ve had some experience of a change in personality and responses, as I cared for my mother in her last couple of months of life. To my knowledge she didn’t have dementia (though she did have a cancer that might have sent secondaries to her brain). She was bedridden and often abusive and I had problems because my own life had to be put on hold. It wasn’t an easy ride, and I’ll leave you to fill in the blanks. But with time since that experience, I understand more what was going on and speaking as a non-medic, I’d say there needs to be more respite care so that the person can be taken out of the home environment thus giving the family and carers more time to be themselves. Here’s what I see in this situation you’re writing about: the ill person (the one with dementia) is surrounded by people who can’t even think properly so they are influencing the ill person. Frayed nerves = lack of patience and intolerance (after a while). The carers stop being able to care for themselves so how can they care for anyone else? (And I presume in care homes in which the staff are also very stressed and no longer have the energy to look after themselves, that also happens). Onto the scene comes the doctor who the ill person responds to differently because there aren’t the usual expectations of intolerance and impatience toward them. So… yeah, somehow the day to day carers need to somehow be able to relax and be accepting, but in an intolerable situation that’s not going to happen.
And societal norms have a lot to answer for in our interpretation of behaviour… If you’re a bird, shitting on your feathers or on the ground if fine, but if you’re a human, shitting on your clothes or on the floor, isn’t. Yet they’re both completely normal functions. Somewhere along the way, I think we all have to change our expectations of ill people and stop trying to make them behave as though they were healthy.
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Thanks Val. It is a fascinating area – one which is so vital to the lives of so many people yet so poorly understood and recognised. This is part of my job! Need to work harder at making people see!
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