A new report was published today by the Secretariat of the All Party Parliamentary Group for dementia, held at the Alzheimer’s Society.
You can read the report here.
It really does have to be read in conjunction with the Major Conditions Strategy from the current Govt, here.
I am one of those unfortunate to be ‘affected by dementia’ – a broad term, but when applied to me it means that I was an unpaid family carer for my mum throughout her dementia experience from overt symptoms in 2016 ultimately to her death from COVID in July 2022.
It was literally the best of times and the worst of times. There were some mornings towards the end, when I would feel ‘finished’ by 6 am, counting the minutes until the morning carers came at 9 am. Unpaid family carers do much of the heavy lifting for care nationally, and I was struck if troubled by the statistic that 8/10 carers do the active caring. With personal care, I wouldn’t have wanted to do the intimate care with my own mum, probably especially as she wouldn’t have been able to express herself to me.
It really resonated when I watched for the first time a Sky Sports interview for the first time with Kate Lee, CEO of the Alzheimer’s Society. Kate described losing her month 10 years ago. And I felt I lost mum long before she eventually did die in the early hours on a hospital ward. I found totally ad hoc how I learnt about the things which I had to have prepared: e.g. lasting power of attorney, welfare benefits, financial planning, adjustments to medication, hospitals and care planning, personal budgets, and so on. On top of this, mum was one of the rare recipients of NHS continuing care, and this required very careful monitoring of whether mum’s health and social care needs were met. I would simply have not have survived unless I had been helped by NHS continuing healthcare. I would hate to imagine that my mum’s care would have been compromised by the cost of it. I think it’s dreadful that there is such disparity between the cost of care for dementia, considered social care in the later stages, and the cost of care for cancer, considered medical, totally arbitrarily. The major conditions strategy from the Govt simply doesn’t address this disparity. Even an incoming Labour government has indicated that integrated care will take on the gestalt of a lemon car – with the front end, NHS free at the point of use, with the back end bolted onto social care, pay on demand, like some sort of dystopian pantomime horse or lemon car.
The whole care pathway needs a 10 year plan. I think the rôle for technology is overstated in ‘living well with dementia’. I am all for the shiny gizmo approach to diagnosing dementias. This would include AI and all the rest of it. But thinking about it all, I noticed mum wasn’t mum long before her formal diagnosis. Her self care deteriorated, her handwriting changed, and her water bill went astronomically up. I am old enough to be Prof Martin Rossor’s SHO like many of us were, me in 2002, and I can’t emphasise enough the importance of a meticulous clinical history from both person with dementia and informant. I can’t also emphasise enough the need for follow up. The critical thing is to see a change, deterioration, in cognitive peformance. If people broadly look the same over a vast number of years, decent medics will call out the emperors’ new clothes, and suggest for the benefit of the person who has received a diagnosis a revision of that diagnosis. I sort of see the fudging of the Major Conditions Strategy in saying most of the diagnoses should be in the community, and done by both ‘generalists’ and ‘specialists’. First thing to say, well done to the APPG which laid bare the glaring postcode lottery between bad performers and good performers in dementia diagnosis. Second thing to say, we need to widen what we mean by community – not only people in their own homes, but people in care homes, nursing homes or hospices.
I think there is a discussion to be had now about overdiagnosing dementia. It might be possible to diagnose people without symptoms using sophisticated laboratory tests and neuroimaging, but these are likely to be expensive; and problematic if the treatment requires intense medical monitoring and accompanied by rare but very serious side effects. The rollout of new drugs is much more complicated than it first appears, and of a lesser priority to me than a social care system literally on its needs due to more than a decade of savage cuts. When I think of the flash points of trouble in the dementia pathway, I tend to think of social care and primary care. If patients prefer to make an appointment through the “8 am scramble”, if they can stomach it, we have to think about whether an effective diagnosis can be initiated through a telephone consultation. That’s when digital literacy might become a factor, and that’s when barriers to particular ethnic groups may become a factor. Ideally, a GP might see in person a person with dementia and a loved one; but one has to worry now with the problems in recruitment and retention of staff in primary care whether GPs are able to cope to deal with concerns about dementia. This puts a lot of responsibility of members in the public being able to know how to navigate the system, and I personally see no alternative to care coordinators as well as specialised practitioners as care demands increase.
So I am compelled to think about whether the Major Conditions Strategy actually achieved the aims of #PlanD of the Alzheimer’s Society see here.
The APPG set out clear specific, measurable, actionable, realistic targets today: for example a dementia strategy for every integrated care system, or a Dementia Public Health Observatory. But it’s now patently clear to me that dementia, because of the nuances in medicine and care, does need its own 10 year strategy, last drafted properly in 1999. Whilst it’s true that dementia never travels alone, i.e. if someone has dementia the chances are that he or she has another condition too, dementia does have its own peculiarities which do need addressing. It’s a devastating disease for the person and any friends or family, and strikes at the very heart of what a person is. Today’s APPG report was magnificent, but felt like the first step in a very long journey yet again.
Dr Shibley Rahman blog 