dementia

Now that you’ve excelled at the harp, why don’t you have a go at the bassoon?

Shibley Rahman 0 Comments

amb

It always amazes me that somebody who has proven himself at the education portfolio can either be sacked or transferred across to health and social care in a cabinet reshuffle.

I sit on various committees in my identity as a “dementia carer”. It is a rôle which gives me insight into the operations of various services. I was indeed not longlisted once for a carers’ committee on grounds of me simultaneously being a physician, which I believe to be stupidity of the highest order.

It makes sense to frame services as having a common infrastructure into which most health issues can be slotted, or most conditions might be viewed.

For example, ‘wellbeing’ is sufficiently broad a subject, that nobody essentially can object to ‘maintaining wellbeing’ or ‘promoting resilience’ as concepts.

But I feel that this is part of a long-maintained approach to the de-professionalism of medicine and care. I am not invoking a dismissal of the “lived experience” in some hyper-trendy anti-wokery mission.

Rather, I feel that ‘caring for the carer’ has become a project to be managed, rather than a skill to be mastered.

I see this all the time, with the misappropriation of generic and general tools to specific scenarios. For example, there is a popular fashion to take to a lived experience through the recovery or survivorship prism. But how many patients with dementia ‘survive’ dementia?

I’ll tell you – those people who never had dementia in the first place, for example who were misdiagnosed in a corporate dementia drive to hit targets. Maybe they live well with functional neurological disorders, rather.

But this project to be managed has spawned an industry of itself, with carers cum pseudo-lecturers. This is all very convenient in cost-cutting measures, and the general antipathy towards experts.

Or giving people who ‘care for the carers’ something to do, like experimenting making a carer passport on the latest version of Adobe Creative Cloud. Or writing a millionth paper based on the ‘carer experience’ to promote your research career.

Not really useful to me. I don’t need a social enterprise to make a playlist for us and to sell me a mp4 player with markup. I am perfectly capable of plugging in YouTube into a TV set with a HDMI cable to produce ‘reminiscence’ memories. Call it “frugal innovation” in your world?

This is my version of social prescribing. Likewise WhatsApp-ing close friends of mine is what you in your wonk world call “peer support”?

I’m done with the technocratisation of care.

I feel that the biggest threats to my carer experience, as an unpaid family carer, are burnout to colleagues including paid domiciliary carers.

I had recently an awful experience with my local ambulance service, where the paramedics refused to examine someone properly after a fall on account of the person I cared for being ‘agitated’ – not surprising as she was in pain, not properly managed for that, and she has advanced dementia. But we could have been some of the unlucky ones. The service is struggling.

But there are pockets of absolute brilliance in the NHS.

My GP dropped everything and did a home visit. And whilst he did so, he checked whether I was OK.

Caring for the carer is not a project to be managed. Being a disabled carer, I don’t want an uphill walk in a local part of London. Nor do I want to be lectured at on Zoom for the umpteenth time.

I want services to be properly funded, responsive and doing the basics well – for example, like picking up the phone when you’ve rung about an urgent rota gap endlessly.

 

@dr_shibley

 

Public engagement with science must be two-way: that’s why persons with early dementia are so important

Shibley Rahman 0 Comments

I spent some of this afternoon at the Wellcome Trust on Euston Road. Euston Road is of course home of the oldest profession, as well as the General Medical Council too.

I was invited to go there to discuss my plans to bring about a behavioural change in dementia-friendly communities. You see, for people with early dementia, say perhaps people with newly diagnosed dementia and full legal capacity, I feel we should be talking about communities led by people with early dementia.

The last few years for me as a person with two long term conditions, including physical disability, have really given me an urge to speak out on behalf of people who can become too easily trapped by being ‘medicalised’.

I have had endless reports of persons with dementia who have received no details about their dementia from the medical profession on initial diagnosis, and at worst simply given an information pack.

This is not good enough.

How we all make decisions is a fundamental part of life. When a person loses the ability to make decisions, it can be a defining moment – loss of capacity triggers certain legal pathways. Whilst the state of the law on capacity is quite good (through the Mental Capacity Act 2005), it is likely that further welcome refinements in the law on capacity will be seen through the current consultation on the said act.

I have been thinking about applying for a big grant to fund activities in allowing a discussion of decision-making in people with early diagnosis, the science of decisions, and what one might do to influence your decision-making (such as not following the herd).

I’ve also felt that quite substantial amounts of money get pumped into Ivory Tower laboratories on decision-making, but scientists would benefit from learning from people with early dementia regarding what they should research next, as much as informing people with early dementia what the latest findings in decisions neuroscience are.

Also, the medical profession and others are notoriously bad at asking people with dementia what they think about their own decision making. This ‘self reflection’ literature is woefully small, and this gap I feel should be remedied.

I simply don’t think that what scientific funding bodies do has necessarily to interfere with the NHS. I think a motivation to explain and discuss the science of decisions to stimulate a public debate is separable from what the NHS does to encourage people to live well with dementia. This debate can not influence what scientists do, but can influence what lawyers and parliament wish to do about capacity in dementia.

Persons can be encouraged to live well with dementia, and when they become ill they become patients of the NHS. Living well with dementia is for me a philosophy, not a healthcare target. If I can do something to promote my philosophy and help people, I will have achieved where many people in their traditional rôles as medical doctors have gloriously failed as regards dementia.