I am no historian.
I struggle with details.
Dates and times have never been my thing.
I am however a reflector.
I look at the world around me, absorb its colours and ponder.
I was going to say ‘think’ although FEEL is probably more accurate.
For once, I will not quote Bruce Lee (Google, ‘almondemotion Bruce Lee’ if you like).
What do I feel about the situation in 2021 for those living with dementia?
I don’t want to go over the headlines, the disproportionate impact of dementia, the human rights abuses, blanket DNACPRs, the absence of PPE and training in care homes then the lockdown of residents, the separation of husbands and wives, sons and daughters.
Early-on in Covid I reflected that I was fortunate for my mum to not have lived to experience the pandemic. She could never have coped with the remoteness, the disengagement. She would have seen it as a desertion that no amount of FaceTime could undo.
There are not many occasions when being an orphan is an advantage.
If we go back five years, we have DC as the Prime Minister.
Yes, I hated him from day-one, not just his sibilant privilege or his referendum avarice, the whole package. Worse than BJ? Who can tell? When I think of them, I can’t get over that picture of them in their dress-suits. Poseurs.
However, at least DC had something he called ‘The Prime Minister’s Challenge on Dementia’ – this was an aspiration to improve understanding, teaching, training and support for those living with dementia. He, or whomever advised him to make this a priority understood the place of dementia in our society.
Its impact on premature death.
Its relationship to falls, hip fractures and pain.
The links with hospitalisation and institutionalisation.
The cost to those living with the condition and those supporting.
The rift or rent in relationships in lives caused by the ripples from before and ever onwards after diagnosis.
Dementia-friendly was core to hospital and city design.
Now. Where are we?
Actually, I just Googled it.
I found ‘The Prime Minister’s Challenge 2020’
I thought, ‘Oh, I’ve missed something.’
No, it was written in 2015, foreword by DC.
No, dementia has fallen by the wayside.
I remember whenever they established the local Integrated Care System (a copycat idea from America) to bring together partners (in South Yorkshire this is Doncaster, Rotherham, Barnsley, Sheffield and Bassetlaw) to achieve improvements in health and social care at scale.
I was initially excited as dementia was considered a priority, doing some of the stuff included in the 2020 challenge.
Dementia was demoted to a not-priority a year later.
I was on the first working group that was established then, disestablished.
The voices of people living with dementia have been quieted by Covid.
Other priorities have taken central stage.
In the whole of Yorkshire, that is a population of over five million people, only West Yorkshire and Harrogate (Leeds and surrounds) has maintained dementia as a priority. (There are three ICS’s – South Yorkshire and Bassetlaw, West Yorkshire and Harrogate and, Humber Coast and Vale).
Everywhere else it has been subsumed within healthy ageing or some other nebula.
And yet, if you look at the numbers of people who have died from Covid – what proportion of those people have been living with dementia?
If you spend the night in your local A&E or hospital admission ward, how many of your fellow patients will have dementia or cognitive impairment?
If you have dementia and you visit the emergency department how much greater is the chance you will be admitted rather than (appropriately) sent home? What about the time you will spend in hospital (length-of stay)? Your chances of dying (HSMR)? Your chance of never getting home (shifted around the system, onward to 24-hour care)? How do you navigate the technology that has come to save us from Covid – the vaccine, the digital platforms, the online shopping?
I read yesterday that the estimated hourly rate-equivalent for a family carer in the UK is something like £1.50 an hour. (There are over seven million informal carers in the UK, over a million supporting those living with dementia.) (Most are women).
We are trying to recover the system, undo the logjam of unattended outpatient appointments or hip and knee replacements postponed, or hernias and cataracts that have been delayed.
Those living with dementia, mostly because they are silent are overlooked.
As I have said, I don’t know what led DC to make dementia a priority – this is at odds with all the austerity he inflicted on the poor and the disadvantaged and continues to be foisted by his buddies and crones.
And here we are, the work undone, the progress we made where has it gone? Remember the forget-me-not stickers? Where are they now?
What happened to Mallard Ward?
I write this with no sense of pride, as I have been one of those leaders who should have done more, shouted louder, agitated, demonstrated.
I protested against Brexit, I went on Memory Walks, but the direction of travel has been unchanged.
I hate writing about failure.
To me there is nothing worse than conceding defeat.
No, I don’t feel we are defeated.
Things won’t disappear.
Lives with be lost, wrecked by dementia and its mismanagement, lack of understanding, lack of prioritisation.
This shout-out is to say that we continue to fight!