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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.

 

 

References

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

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