“I” statements are very powerful. I love the 26 “I” statements of Making it Real.
I am working in partnership with Think Local, Act Personal (TLAP) and the new electronic Whose Shoes?® – Making It Real is aligned to these statements.
The statements have been co-produced with ‘real people.’ They define “what people want to see and experience; and what they would expect to find if personalisation is working really well.”
But when you think about it, it is very difficult to come up with ‘I’ statements, even if you involve, as TLAP did, LOTS of different people, because the whole purpose of personalisation and person-centred approaches is that people are individuals. What matters to one person is very different from what matters to another person. So ‘I’ statements have to be very generic to have universality. “I want to be treated with dignity and respect”. Yep, we can all sign up to that one.
Yesterday, I was on Twitter (well, there’s a surprise) and Helen Sanderson, whom I much admire, tweeted this photo of ‘I’ statements about dementia, from Alistair Burns, whom I also admire.
I scanned down the list and re-tweeted to my followers….
But Sarah Carr, whom I also admire (a lot of admiration going on here) was a bit more on the ball than me.
Sarah had struck a chord. I thought of the various “‘in my shoes’ guest blogs I have collected. The series has some wonderful expertise. ‘Experts by experience’, professionals..: in short, a wide mix of people with passion talking about ‘their bit’ of the jigsaw. Julie Christie is a dementia researcher; her blogpost has been particularly popular (you can click directly on the links in the tweets):
Similarly, my friend Larry Gardiner, who is away on a “Dementia Adventure” at the moment (Have a great time Larry!!) wrote powerfully last week about his feelings about being involved in ‘dementia research’. It was a different point but my point is that Larry, who is living with dementia AND one of the brightest guys I know, clearly DOES know what he thinks.
What I am thinking is that there is an AWFUL lot to think about behind this ‘simple’ I statement.
I invited people to comment further. I invite YOU to comment today.
My mind went back to my dear Mum-in-law, Betty. She was always a bit ‘unworldly’.
When she had dementia, she agreed to anything. She told me that she needed to pay the window cleaner – she thought the ‘usual rate’ (for her small terraced house) was £60…
She would have agreed to ANYTHING.
So what on earth does a statement like “I know how to participate in research” mean for the Bettys (Betties?) of this world?
I have not researched this set of dementia ‘I’ statements further. No doubt there is a bank of evidence, guidelines, processes and other ‘stuff’ behind the scenes. But the net result is that it is being presented as a simple “you-must-surely-agree-with-this” set of universal principles.
I looked more carefully at the list. There are nine points:
- I was diagnosed in a timely way
- I know what I can do to help myself and who else can help me
- Those around me are well supported and in good health
- I get the treatment and support, which are best for my dementia, and for my life
- I feel included as part of society
- I understand so I make good decisions and provide for future decision making
- I am treated with dignity and respect
- I am confident my end of life wishes will be respected. I can expect a good death
- I know how to participate in research
The first eight statements are things I feel are basically easy to sign up to. Each one probably deserves a comment but I will desist (other than to say I am delighted to see ‘timely’ diagnosis, rather than ‘early’ diagnosis – but that is another story). It is the last statement that we are concentrating on.
These dementia ‘I’ statements are certainly highly ‘aspirational,’ given the day-to-day lived experience of so many people living with dementia and their carers, struggling with little or no support. Personally I like tangible things like the Scottish government recently announcing a named support worker for people / families living with dementia… but perhaps that is just me? 😉
Yes, these statements are hugely aspirational but high expectations are exactly what we need in dementia care.
But, the last statement? I hesitate to use the word ‘disingenuous’. I am sure that there are many things I don’t understand. But I do understand that Betty would have signed any consent form in the world! Especially if it was ‘explained’ to her by a researcher or a doctor (or pretty much anyone!) that she would have regarded as an authority figure. Another trait of that stoical, self-effacing war-time generation to which she belonged.
Should this last ‘I’ statement be tacked on at the end of the list?
Hmm. I would respectfully suggest:
8 apples and one pear in a box marked… ‘apples’.