“When you look at me
You will measure me
by my awareness
by my response
by my age
by my development
And you will find me lacking
But for me you are measuring with the wrong cup.”
This beautiful poem was sent to me by a dear friend following the death of my father in 1991. Dad had been left seriously brain damaged and totally dependant after heart surgery. Mum and I had him home for what was a short, but intense, full time caring experience.
Despite the passing of time, I always think of Dad. That experience allowed me to see beyond the shell of the broken body and altered the course of my life. If he had not been ill, I would never have taken the path I did into learning disability nursing and dementia, nor would I have met and married the girl of my dreams. I was intending to head off for a life in Mexico (don’t worry, I spent a fair bit of time out there!)
Dad always comes to mind when, frustratingly, I see that people or their experiences are measured with the wrong cup. Here are a couple of moments that struck me recently at the recent UK Dementia Congress.
At the Tom Kitwood memorial lecture we heard the inspiring Professor Steven Sabat, who eloquently dismantled such blunt instruments as the Mini Mental State Exam (MMSE). He shared with me later a story about a man who could not answer the question in the test ‘what day of the week is it?’ He reflected upon whether the man had capacity to know which day of the week it was. So he asked the man again…
‘Is it Monday?’ – ‘No’.
‘Is it Friday?’ – ‘No’.
‘Is it Thursday?’ -‘Yes, it’s Thursday’ (it was indeed Thursday). The man knew it was Thursday. He did not lose a point on the scale.
It was a powerful reminder of the fundamental need to build a relationship in that daily human encounter, however brief, that many of us have in our work with and alongside people living with dementia. Unfortunately people are still being assessed as if a fish out of water by individuals they have never met before in hostile environments (clinics, hospitals). Measure me if you must, but measure me with my cup…’
At the same Congress I attended a presentation sharing the findings of ‘Journey Through Dementia’- a post diagnostic programme. Information about the project was shared, and a man living with dementia gave a powerful testimony about how the programme had transformed his life. He then handed over to a researcher, who showed a very impressive graph of the results of a validated evaluation scale of the programme. It showed that there was absolutely no evidence of the efficacy of the programme! This juxtaposition of evidence was ludicrous. So which do we heed? The real testimony of lived experience or the evaluation scale? ‘Measure me if you must, but measure me with my cup…’
At Innovations in Dementia, my colleague Steve Milton and I are fortunate, thanks to the National Lottery Community Fund, to facilitate a network of dementia-specific lottery-funded projects – the Dementia Learning Network. We are halfway through a two-year pilot. One of the most common difficulties we share is how best to capture and present outcomes of our projects, when findings invariably do not neatly fit into any established ‘validated’ scales.
The excellent project on providing peer-led bereavement support, run jointly by the Extracare housing group and CRUSE, soon discovered how ‘messy’ human encounters, and the data coming from these, can be. It just could not fit into any established quantitative measurement tool, and they soon turned to gathering more qualitative material. Despite the difficulty they still have in gathering evidence for the work, it is clear this programme is hugely meaningful for both people receiving the support and those bereavement partners too. The challenge is finding the right cup with which to measure this.
The current resource of measurement tools and evaluation scales should not be exhaustive. People with dementia themselves are often best placed to decide what should be measured. For example, the members of Minds and Voices DEEP group in York made their own choice of measurement scale for the recent Good Life With Dementia course they delivered.
The collaborative potential of the members of the Dementia Learning Network, and the new Dementia Enquirers programme where people with dementia are leading their own research, means that alternative and more inclusive methods of gathering and recognising evidence are surely on their way.
Dad scored 0 on any tests around capacity, independence or cognition. Perhaps there was a folly in what we were doing. We did not have a tool to measure Dad’s sense of belonging or the extent to which he was still capable of seducing those around him, although in a completely different way than he had done for the previous 59 years. Nor a scale to capture how he remained a source of love and unity within the family and beyond. Let’s all make sure we capture what really matters!
“But for me you are measuring with the wrong cup.
So measure me if you must
But measure me, too, with my cup
And you will find me full”
Niemann Pick Disease Group
Co-Director, Innovations in Dementia