#WorldAlzheimersDay – who is protecting whom?

Assessing risk is a critical part of English dementia policy at all levels. I again found myself talking about risk as I saw responses to World Alzheimer’s Day which was yesterday on September 22nd 2015.

I don’t especially like the term ‘wandering’ for people with dementia. This term, like ‘challenging behaviours’ has become seemingly legitimised through the hundreds of papers on it in the scientific press, and the grants no doubt equivalent to hundreds of thousands of dollars probably. I think the term, intentionally or not, attributes blame. And as I moot in the tweet below, this is potentially a problem, especially one considers that a dementia charity should not ideally be fundraising out of sheer fear.

Tweet 1

Don’t get me wrong. I think charities have an incredibly important part to play, and they do, in educating people about dementia; and generally ‘raising awareness’ howeverso defined. Take for example this helpful tweet from the Alzheimer’s Disease International containing a relevant infographic about the scale of the dementia epidemiology.


I had a hunch that something was very awry about yesterday when my colleague Simon Denegri tweeted something which caught my eye. Let me introduce you to Simon. He’s Chair, INVOLVE, NIHR National Director for Patients and the Public in Research, and, importantly, a nice guy.

The tweet, and the main subject of the research, is pretty self explanatory in fact.


The point Simon raises is worth thinking about, I feel. Is updating the epidemiology of dementia every year, nay every month, or even every week, an effective way of genuinely raising public awareness – or is it rather a lazy way to campaign on it? Obviously, playing devil’s advocate, one should argue that this main issue should be raised until something happens, but with a cure for dementia a long way distant it seems that this option is not likely.

So how about offering some solution instead? In other words, having scoped the problem, why not offer hope instead of fear through the huge volume of research in improving quality of life for people living with dementia and carers. Here’s the thing: there are 850,000 people living with dementia at the moment currently, and there’s got to be something in it for them with all this coverage.

I call fixating on the ‘tsunami’, ‘time bomb’ or ‘tidal wave’ “the shock doctrine” to make you want to dig into your deep pockets, to make you donate to a dementia charity. BUT  – with social care funding on its knees, having not been ringfenced since 2010 – is this actually a luxurious response to a rather serious immediate problem? Long before #DementiaWords ‘got sexy’, I presented my poster (PO124) on the hyperbolic language used in the G8dementia proceedings, in the Alzheimer Europe 2014 conference.

Here’s the rub.

Jeremy Hughes and the Alzheimer’s Society have been hugely successful with the ‘Dementia Friends’ campaign, which has seen a roll-out of information sessions on the basics of dementia for the whole country. Yesterday was a good opportunity to talk about that.

Dementia Friends

But meanwhile Alzheimer’s Research UK, which indeed does formidable work for the research infrastructure on dementias in the UK, rolled out this in a blogpost yesterday. The phraseology of the remark, “At Alzheimer’s Research UK, our hope is for a different kind of future, one where future generations will be free of this life-shattering condition”, is the opposite to one of the central messages of Dementia Friends, that ‘it is possible to live well with dementia’.


I don’t, of course, want to downplay the huge significance of the disclosure of the diagnosis of dementia as a life event for all those involved, not least the direct recipient of that diagnosis.

Sadly, we’ve been here before. All of these came to the fore when Richard Taylor PhD, one of the founding members of Dementia Alliance International, (DAI), pleaded, “Stop using stigma to raise money for us”, in the Alzheimer’s Disease Conference in 2014 in Puerto Rico. Actually, the DAI, a group run by people living with dementia, has been working with Alzheimer’s Disease International to make things much better, in no small part at all due to the gigantic efforts of its current Chair Kate Swaffer (@KateSwaffer).

All of this leads to me wonder who exactly is protecting whom? I wouldn’t go so far as to say that the public needs protecting from large dementia charities, but the sway they hold on policy is not inconsiderable; whether this is on the cure v care resource allocation in dementia, or whether there should be specialist nurses as well as dementia advisors (as I argued this year both in the ADI and Alzheimer Europe conferences).

There’s no doubt, as regards safeguarding issues, that people with dementia need to protected from risk where it is proportionate to do so. As I have long argued, you need to embrace risk to live well with dementia. But it is worth thinking about on whose part we are negotiating risk? Damian Murphy’s excellent blogpost yesterday emphasises how we cannot necessarily assume that carers and persons with dementia have the same (or even similar) viewpoints: this is directly relevant, say, on whether a person with dementia with a carer gets a GPS tracking device?  (I duly anticipate and expect Damian’s contribution here, by the way, to be seminal one, by the way.)

A long time ago when I was reading some of the management literature, I was really impressed by a paper to which Prof Michael Porter contributed on strategy and society (co-author Mark Kramer) in the Harvard Business Review.

Mark in a slide once summarised four crucial tenets of observing this re-articulated corporate social responsibility thus.


I, for one, would like to see all campaigning done by the dementia charities seen through this prism; and also bearing in mind the clinical, if not societal, question cui bono?



Researchers, like politicians, must represent the general public in the dementia discourse

Politicians are democratically elected, but researchers are not.

It might be inferred, sometimes, that researchers get their ‘political mandate’ from politicians. Against this idea is that members of the general public are free to see research monies going into research which is particularly merit-worthy.

It struck me how little intellectual rigour has been applied into thinking about the research challenges of a ‘global dementia research strategy’. The usual narratives, such as sharing of ideas and data sharing, as well as the need for ‘intelligent regulation’, are usual brought to the table and I have no problem with that.

In a way, research is like a market. It could be argued that there is a supply and demand. One can argue that some parts are actively ‘competing’ against others, leading to fragmentation. This fragmentation at worst leads to an unnecessary reduplication, with wasting of resources.

Working together, or collaboration, allows a pooling of resources, not just in financial terms but also in human capital and talent. It can mean that the same research question is not dealt with by numerous labs in the world.

But like markets, it can mean that there is not universal coverage of the entire gamut of research questions. Research into dementia is not simply about research into Alzheimer’s disease. While there is a collective sense of excitement at possible ‘cures’, we should be entitled to stop to think this is for one type of dementia at one particular stage. Research, like markets, can be forced to concentrate on areas of high profitability; but this runs the risk out of outright failure.

I have noticed a real reluctance in the Alzheimer’s Association conference in 2014 to engage with research questions of real “mettle”. For example, people who present with later stages of dementia, or present with ‘mixed’ pictures of dementia, such as Alzheimer’s disease and vascular dementia.

Or even that people with dementia rarely present as pure medical models of dementia. People living with dementia in the majority present with multiple co-morbidities, which makes discussion of their potential future pharmacy more complex than many would admit.

At worst this type of research, focusing on ‘pure’ biological models such as amyloidopathies for Alzheimer’s disease, synucleinopathies for diffuse Lewy body disease, or tauopathies for frontotemporal dementias, encourages a very ‘silo’ mindset, attractive that might be for enhancing shareholder dividend from Big Pharma and subsequent research laboratory funding.

But excluding people actually living with dementia from the conversation is painful. Where were the views of the Dementia Alliance International in #AAIC2015? They’re the group of people living with dementia – and yes, there are about 47 million people currently living with dementia around the world, of which a few million are in the U.S.

Excluding them from identifying the questions needing to be answered runs the risk of a global research policy which is deliberately ageist, or discriminatory towards certain groups of people who live with dementia.

I agree there are many ‘barriers’ to effective research into dementia at a global level, but they’re not simply barriers to biological research.

Take for example this passage from a research paper:

“To date, qualitative researchers have already addressed a series of important issues including: (a) individuals’ perception of their illness; (b) exploration of carers’ experiences; (c) impact of dementia on friends and family (Prorok, Horgan, & Seitz, 2013); among others. However, several gaps in our knowledge remain (e.g. optimal psychosocial interventions for carers, achieving social integration, evaluation of training and education in dementia care) (Moniz-Cook et al., 2011). Careful prioritization of the gaps which warrant further qualitative research is needed (Prorok, Horgan, & Seitz, 2013).”

But other issues definitely exist: such as recognising the cultural and ethnic diversity of people who are entitled to be diagnosed by and given support from services around the world; or the method of obtaining consent.

We cannot, also, keep on viewing the global research strategy through the prism of well funded jurisdictions; much dementia ‘exists’ in lower and middle income countries, so we must make sure that the “outputs” from our current global dementia strategy, whatever the so-called “barriers”, are fit for purpose for them too.

But therein lies the problem. Some researchers are indirectly accountable to shareholders of big companies, who will wish to see a ‘return on investment’.

Without any doubt, in my mind, the discussion of barriers to research in dementia has become too easily conflated to barriers to return on investment in neurochemical research (e.g. all ‘trials’ with harmonised entry requirements, and not seeking out valid qualitative perceptions.) It would be a massive mistake, I feel, if we simply went down this financial route, as the discussion of the value of human capital is different from econometrics you might have heard elsewhere.




Moniz-Cook, E, Vernooij-Dassen, M, Woods, B, Orrell, M & Interdem Network (2011). Psychosocial interventions in dementia care research: The INTERDEM manifesto. Aging & Mental Health, 15, 283-290.

Prorok, J. C., Horgan, S., & Seitz, D. P. (2013). Health care experiences of people with dementia and their caregivers: A meta-ethnographic analysis of qualitative studies. Canadian Medical Association Journal, 185, e669-680. doi:10.1503/cmaj.121795