Why I love my own research into living better with dementia

 

It more than nauseates me when I see undisclosed conflicts of interest. It makes me violently pissed off.

I don’t like it when Big Charity does not disclose that a document promoting early diagnosis of dementia, without calling for better resources for workforce training or post-diagnostic support, was sponsored by a drug company.

Conflicts of interest are not necessarily materially significant, but it is for members of the general public to judge. The Declaration of Helsinki makes it patently clear that negative results should be published as well as positive results.

There’s a fundamental problem with the case for screening for Alzheimer’s disease. Even if there were an inexpensive reliable test which is sensitive to early deficits in cognition in people with early Alzheimer’s disease, and that test is not sensitive to other medical conditions such as pure unipolar depression, the case for screening cannot stand.

This is due to two reasons. The track record of Big Pharma in finding a cure for Alzheimer’s Disease in the last two decades at least has been abysmal, whether you’re talking about symptomatic treatment or slowing of progression for a meaningful number for a meaningful time period.

Secondly, and equally significantly I feel, is that we simply don’t have money going into what living better with dementia might look like – where for example are trials into looking at GPS tracking systems for people with dementia, or for music improving quality of life?

I am in fact in the 1%, but not in the traditional general election sense. I am the “other” that does medical research.

Project update slides for PPI Working Group

I am regulated on the medical register, but do not get paid in any form for the research. And yet I have presented on my own at Alzheimer’s Europe and I am about to present at the Alzheimer’s Disease International conference in Perth later this month.

But there’s point in rubbishing what I do.

I have published one book ‘Living well with dementia’ last year, starvation in the midst of plenty bookwise, meaning that there are few evidence-based books on wellbeing in a climate where there’s no shortage of funds for research apparently.

I am about to publish another. Even  though I get no support in doing so, I actively promote research into dementia.

That was a half-truth, in fact.

I once got a free T shirt, and I actively promote research into dementia.

JDR-2

There are people in this country whose energy I could never match – such as Chris Roberts, Tommy Dunne, Agnes Houston, Tommy Whitelaw.

There are people abroad who are utterly amazing. I won’t embarrass them by naming them.

And frankly I couldn’t give a damn about people with long titles and important positions who proclaim themselves as ‘experts’ into dementia, whose self-righteousness I can spot a mile off.

It is not hyperbolic to say that this self-congratulation is to some extent justified by me having a huge return on investment – that is, my return on investment is astronomical given that I do not receive any grants.

Many people with dementia, and people closest to them, care about my research, and I care about that.

Personhood-focused relationships: a moral drive to get away from the transactional nature of care

In a way, the approach thus far has been very straightforward.

Even after abolishing ‘asylums’ for mental illness, Tom Kitwood pointed out the remains of the asylum days. That is, with all the best will in the world from all parties involved, a tendency towards ‘warehousing’ of people with later stages of dementia. In such places, often framed as microcosms apart from the rest of society, ‘care’ is meant to take place, but historically with an overdependence on drug rounds rather than a resident’s need to have a haircut, for example. Whilst many professionals do not wish to see care as transactional, there is recurrent use of this language by think tanks and policy makers. This managerial approach fragments life into processes which can be easily identified and, if need be, costed.

One of my biggest surprises is re-reading Tom Kitwood’s “Dementia reconsidered” was his prophecy about the impact that the hybrid market of the NHS and Community Care Act (1990) might place. Care should be care regardless of setting, and care does not necessarily have to be institutionalised. But there are simple ways in which care institutions do not have to be cut off from the rest of the society – why not have WiFi in these places?

But of course, this goes way beyond WiFi.

The drive towards ‘relationships centred care’ was a reconfiguration of person-centred care, but which did not ignore personhood. Reminding myself of Kitwood’s flower, known a decade before the travesty at Mid Staffs, it is clear to see how fundamental aspects of personhood could have mitigated against bad care.

The 'Kitwood flower'

Whilst there is a lot of extremely good care, there are some ‘spoiled apples’ such as Mid Staffs – which subsequently has tried a ‘clean break’ and Winterbourne. But it would be a danger to regard them simply as ‘spoiled apples’ or freak occurrences, as indeed Morecambe Bay pointed out. Markets involve transactions. What Tom Kitwood warned about, albeit subtlely, is very important in my view. What has gone wrong in recent years is care environments being run for a ‘surplus’ or ‘profit’, with budgetary pressures such as PFI loan repayments. Staff themselves have been viewed as a commodity, and the tendency to run a healthy budget sheet has to be run a minimum of staff with minimum time to care – which can render initiatives such as 6Cs ineffective.

A “health transaction” which is under-resourced and rushed is likely to be unsafe. But that is not to say money solves everything. And while we’re on the money there seems to be plenty of money elsewhere, for example in finding a ‘cure for dementia’, the ultimate nirvana which Kitwood indeed warned about.

fraud

Neither the person living with dementia nor caregiver wish to be involved in a ‘woe is me’ ‘victimhood’ race to the bottom, but the pressures for not being appreciated properly are huge for both parties. Despite think tanks and policy makers wanting to ‘measure it’, the quality of person-centred care has been hard to define. That’s because, I believe, personhood is fundamentally about relationships too, as well as the uniqueness of the person at that particular place and time.

Kitwood’s own definition on page 8 of ‘Dementia reconsidered’ pulls no punches.

“Thus we arrive at a definition of personhood, as I shall use the term in this book. It is a standing or status that is bestowed upon one human being, by others, in the relationship and social being. It implies recognition, respect and trust. Both the accoeding of personhood, and the failure to do so, have consequences that are empirically testable.”

A quality of care for dementia is not necessarily the same as the quality of medication. Take for example the lack of effects of the vast majority of ‘dementia drugs’ on quality of life. But quality of care, one would pretty readily concede, is linked to the quality of relationships. The idea that relationships involve emotion and affect, and reciprocal, is clearly defined in the construct of ‘relationships centred care‘.

But as a financial transaction, this is hard to measure; and Kitwood conceded there is not real competition for the market to be effective (p.44). And striking is Kitwood’s claim that ‘In particular, people do not know what they need and can be easily deceived by ‘experts’ who act for economic motives’. Another view of this would be to all embracing and for it to be reframed yet again as ‘patient and family-centred care’. But note the reference to ‘care transactions’ on this page, and the construct appears more like a service to sell rather a frame of mind arguably.  And not everyone has a family.

In my final book on residential care (including care homes and nursing homes), I will reset the direction of the compass of ‘person-centred care’, a term used by Kitwood himself, to orient it more to what I think Tom Kitwood himself meant: “personhood focused relationships”, which can indeed be applied to residential care settings.