Does anybody use David Sheard's (Dementia Care Matters) 'butterfly household' approach for the care of dementia patients ?

mike stone 20/06/15 Dignity Champions forum

I came across mention of David Sheard's approach to dementia care recently, and read his literature.

His approach, involves, to use my phrase, 'the carers fitting in with the patient's reality'.

My interest, is because when my mum was 'sometimes elsewhere' as she neared death, it struck me that she 'seemed to be living in the past' (it didn't 'seem as if she was living in the now, but with gaps in her memory'). I would have said, if I been asked about dementia before my mum's death, that 'it involves the loss of recent memories' but I wouldn't have described it the way I do at the end of this piece, which is rather different.

David's approach, also involves 'letting patients live in the past', and I've asked Rochelle Monte and Liz Taylor a question about this - no answer to my actual question so far, and both Rochelle and Liz seem to have 'homed in on the 'how do you care' aspect'. Which I suppose, was predictable. But Rochelle and Liz both seem to agree that 'fitting in with the patient's reality' makes sense.

Rochelle wrote:

'I have worked a lot with dementia clients and have seen attitudes and ways of working change. A naive 18 year old I was told to tell people the truth 'Your mum has died she's not picking you up, you are 90 and you live in care!' I never accepted that this attitude was right. To watch someone grieve several times a day when a simple reply such as ' I've spoken to her and she said it's fine for you to stay, its late and you have missed the bus' could calm someone and leave them content was to me the most practical solution.'

Liz wrote:

'For some people David's stance is absolutely right and they are much more content and indeed able to function much more effectively in social settings, if they are enabled to live in their own time. However for others it can be really distressing as they seek the loved one who is no longer there and cannot be produced in any guise to ease their pain. I worked with one individual who lived losing her husband every day, it was really difficult for staff, she spend lots of time searching the building for him, becoming increasingly distressed, and then we had to reach the point of telling her that he was no longer with us, it was like she was bereaved all over again. I don't think there is one answer, and I would espouse a methodology which is based on do what is right for the individual at the time. Those of us who are not experiencing the same moment in time, are more able to cope with the consequences of that, than the individual themselves.'

I have almost no experience of dementia - and I consider it to be a truly horrible illness - but it makes 100% sense to believe that dementia will affect different people differently, because 'a broken mind, isn't like a broken knee'. There are also some 'terrible legal dilemmas' if you try to apply the Mental Capacity Act to dementia patients who seem to be suffering a great deal, but this is not the piece to discuss those 'nerdy' issues.

I agree with the 'solution' David's approach advocates, and Rochelle employs - but, that wasn't my actual question. I've decided to post the question here, in the hope that some carers might contribute answers (which I might pass on, to Dementia Care Matters). If anybody wants to comment about David's overall approach, feel free to also do that - I think there are a lot of families affected by dementia, and professionals working with dementia sufferers, so the 'theme' of this one, could potentially attract a lot of responses.

THE QUESTION:

David Sheard's literature, 'explains' that dementia patients are brain damaged, and 'pragmatically' that they 'appear to live in the past'. But his 'explanation' is different from mine.

WHAT I AM ASKING, is if you were explaining to a NEW carer of dementia patients, 'what is going on inside the patients' heads, and why they seem to be living in the past', would you find David's 'explanation', or my 'explanation', THE MORE USEFUL ?

David explains it this way - this is a quote from his publications:

'This requires us all to tune more into emotions and to listen carefully to the feelings behind the words people might be using. Someone who is asking for their mother or wanting to go home, for example, might not be actually wanting the actual person or place but instead be seeking the comfort and security that 'mum' and 'home' represent.'

I explain it this way:

'Because of the brain damage, the patient 'really believes' it is a date in the past - a woman asking for her mum, might 'inside her head' actually think it is 1938, and that she is aged 11 and living at home with her parents'.

MY QUESTION, IS WHICH OF THOSE, 'is the best way to explain it to carers/relatives' ?

David and I - and it seems Rochelle and probably Liz - all agree about how to respond to 'where has my mum gone'. As David writes:

A positive response therefore might need to be to offer love and reassurance. Relying on correcting the person about their confused reality saying "Your mum has died" or "This is your home" will often not work. This sort of response is only likely to add to the person's distress. The reason this does not work is it forces a ' present ' reality onto that the person which the person by asking the question in the first place is unlikely to accept. They are really trying to show how they are feeling insecure, lonely or lost. Providing reassurance on how someone is feeling is more likely to work than forcing facts that the person living with a dementia cannot retain.'

But I find this 'asking for mum but meaning something different' harder to 'rationalise' than my 'asking for mum, because the person honestly 'internally believes' that mum is still around' position. It seems to me that a brain which 'asks for mum, as a 'proxy' for something different' involves 'quite clever internal mental processes' - whereas 'asking for mum, because I honestly think mum is around' seems much more straightforward. And this is - we all agree - a DAMAGED brain: while I can see 'someone might ask for a pear, because the word for apple has 'disappeared'' (although I suspect, if you give the person a pear, you might get 'No - not what I asked for !'), I can't 'get my head around' David's rationale.

As an 'aside' - this doesn't affect anything - this is what struck me, when my mum was nearing death. This is the e-mail I sent to David's organisation, Dementia Care Matters:

Dear Sir or Madam,

I came across something about your 'butterfly household' approach and Poppy Lodge, and I'm wondering if you could send this e-mail to one or more clinicians in your organisation, for an opinion about it ?

I recently sent this to someone I came across, who works for Alzheimer's UK, but it is something that 'forcibly struck me' when my own mother was dying - does it seem to make any sense ?

Regards, Mike Stone

I'll try to explain the 'thing that surprised me' when my mum 'was having periods of being elsewhere'.

I think my mum's 'periods of being elsewhere' in the weeks before she died, were probably vascular dementia. But a year or two before she died, there had been one or two times when mum had 'forgotten that dad had died' - although 'memory would kick in, when she was 'prompted''.

So before my mum died, I would have thought of 'the demented mind' as being 'the mind but with 'gaps in memory''. That doesn't seem to fit with my impression of my mum's 'periods of being elsewhere' in the weeks before she died.

Sometimes my mum 'was with me', and sometimes she wasn't - but if struck me after a while, that it didn't seem as if she 'was in the present, but with some gaps in her memory'.

I might be explaining this badly, but it was more as if there were not gaps in her memory, but that 'her memory stopped at some time in the past'.

It seems to me, that it was as if sometimes she woke up, and inside her head it was 1943 (when she was about 20), sometimes inside her head she was 'back at the time when she was about 70', and so on. It seemed to me, as if instead of 'she is in the present, but has forgotten things', she would 'have a mind which knew what had happened up to, for example, 1990, and knew nothing at all since 1990'.

It seemed to me, that it was as if she had woken up 'at a specific time in the past' and she was in a world which had moved on, without her mind knowing anything about 'the years since the time her mind thought it was'.

This is awkward to describe, and it may or not make any sense at all (I can 'sort of suggest a mechanism' - but I'm not sure I believe this !). The 'possible mechanism' is based on my observation that we are much less good at 'thinking' than we believe we are - present somebody with a few lines of maths, and you can see how little it takes to 'make thinking grind to a halt'. And, there is that thing where you are pondering a problem when you go to bed, and suddenly 'know the answer, when you wake up'. So the 'mechanism' would postulate that 'when a brain is waking up, it 'forms a coherent 'memory set' and 'presents that memory set to consciousness''.

The 'speculation' would be that if there are a lot of recent memories which 'the waking brain can't get at', instead of trying to incorporate the 'gaps in memory', somehow 'the brain stops at the time when its memories 'break up' - and the brain 'boots into an earlier time''. And in my mum's case, it was a different time in the past, from day to day, and even during the same day.

So, you 'wake up in the past'.

That is what I said in an earlier e-mail, is easier to talk about face-to-face - but, does that seem totally crazy to you ?

You can easily see, how even if your brain was otherwise perfect, if you woke up one morning and your memories 'stopped' 10 years ago, then the mismatch between expecting it to be 2005, and 'seeing 2015', would make you 'paranoid and scared' !