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Sure, it's about dementia research stupid, but don't forget about wellbeing.

The famous aphorism of Carville is: “It’s the economy stupid, but don’t forget about healthcare.”

This is the way I feel about certain dementia campaigners who unashamedly wish to sideline wellbeing, in the search for a ‘cure’ via well funded biology labs.

Australia will host the next meeting of the Group of Twenty (G20) in November. We ask our Prime Minister, Mr Tony Abbott, to place dementia prominently on the G20 agenda. A petition entitled, “Australian PM Tony Abbott: Make dementia research and prevention a priority agenda item at the G20” has been created by Professor Perminder Sachdev (Co-Director), from the Centre for Healthy Ageing.

The campaign banner is here.

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Firstly, let me say it would be impossible to write this article without acknowledging Kate Swaffer.

Kate is here on Twitter, @KateSwaffer.

Kate is Chair of the Dementia Advisory Committee at Alzheimer’s Australia.

I firmly believe that there is a clear priority for researching good quality dementia care, and wellbeing approaches, as well as funding research into basic biology and applied treatments; and possible preventions, acknowledging that vascular dementias are probably are our best bet for initially reducing the prevalence.

These are potentially exciting times.  See for example the recent work on GSK-3 inhibitors which has much promise, if they can tackle ‘known issues’ including potential side effects.

There’s a whole plethora of issues why dementia modifying-drugs have been found to be turkeys not to fly ultimately. These don’t just include a modest effect on benefits and outcomes, but also an inability of the drug to cross the barrier between the body and the rest of the body, and their prohibitive initial price of retail. Notwithstanding, dementia biological research is exceptionally vital to support, and the petition above must be supported for those reasons alone possibly.

But it really is about the quality of life ‘stupid’.

For example, the Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

There is much to be gained by investing in understanding wellbeing and wellbeing improvements for people living with dementia, allowing greater independence where possible and appropriate. This involves a dialogue about the value that people with dementia bring to the community, along with us all, adaptations and innovations to improve vastly quality of life, design features in a person’s home, ward or external environment, greater choice about care services and better provision of information, promotion of leisure activities and techniques already proven to be of benefit (such as life story or reminiscence approaches).

For research to be moral, we should consider whether it’s moral that Pharma should have the lion’s share. The last decade is littered with failures, with the people should shout loudest, not necessarily anyone with formal academic qualifications in medicine, nursing, social care, or specifically dementia, not acknowledging that the cholinesterase inhibitors do not slow progression in the majority of individuals with Alzheimer’s disease. The modest effects of these drugs on many comes close to being an offensive scam, though the drugs are clearly of benefit in some.

“At the recent G8 summit, the leading economies of the world made a commitment to developing a cure for dementia by 2025. The UK said it would double its annual research funding for dementia to £132m by 2025. The USA has increased its funding for dementia recently by 12.5%. However, all this comes from a low base, with research funding for cancer currently being about 8 times, and for cardiovascular disease about 6 times that for dementia in high income countries (HICs). A huge imbalance will continue to exist.”

Otherwise, we get stuck in the same old tired language of the pharmaceutical industry.

Please do sign the petition, but please do not tolerate these messaging devices which are designed to induce panic and fear. People with dementia do not deserve that.

“[Abbott] will follow the lead of the British Prime Minister who recently hosted the G8 Dementia Summit, and called dementia “the disease that steals lives, wrecks families and beaks hearts” and recognised it as “an increasing threat to global health”.”

This language of “burden” not value has been pervasive in many charities’ attempts at raising money for dementia historically:

“Of course, dementia is a global problem, currently costing more than $600 billion annually, and growing exponentially. The greatest growth is in low and middle income countries (LMICs). Already, there are more dementia patients in LMICs, and by the middle of the century, more than 70% of dementia patients will be in these countries, which are ill-equipped to deal with the burden of dementia.”

Without unpaid carers in the UK, the NHS care for dementia would collapse. And yet they are totally invisible in this narrative.

Certainly, globally low rates of dementia are unacceptable, but also unacceptable is the medical profession not talking about wellbeing at all with their patients preferring to stick to the rubric of “treatment”

If, like me, you’d like to give carers a voice, please support the work of Tommy Whitelaw (@TommyNTour).

“In many countries, there is a lack of awareness of the problem, dementia is poorly diagnosed and facilities for treatment and care are rudimentary. ADI estimated that 3 out of every 4 of the 36 million people worldwide living with dementia have not been formally diagnosed and are not receiving treatment and care. The “treatment gap” is most significant in developing nations. In Australia, the average delay between the onset of noticeable symptoms and a firm diagnosis is 3.1 years. Putting dementia on the G20 agenda and getting a commitment from the leaders of countries like China, India and Brazil is likely to have a remarkable impact on dementia awareness, care and research around the world.”

And the bottom line is..

“More funds are needed for the diagnosis, treatment and care of dementia patients. An investment into dementia research is urgently needed from all countries, led by but not restricted to the rich nations. In many parts of the world, research into dementia is non-existent. This, combined with the relative neglect of dementia research in rich countries, has created a major gap between the disability and suffering attributable to dementia and the research investment into its diagnosis, treatment and appropriate care. Greater research funding will help develop new treatments, but more importantly, exploit the current knowledge to develop strategies to prevent dementia or delay its onset. The G8 has set ambitious targets. We ask Mr Abbott to take the lead and make it a truly global fight against the dementia time bomb.”

Arrrgghh.

It is now more essential than ever to ask persons or ‘users’ of the NHS, and those of jurisdictions beyond such as in Australia, what they want from a strategic response to dementia. This could include, justifiably,  better support for carers who include unpaid family caregivers working under considerable stress.

More than ever we need to have research funds to be allocated correctly. It’s going to be vital to have persons with dementia on these research funding allocation boards. For example, shouldn’t we know about the cost/benefit analysis of GPS trackers for people with dementia at risk of wandering?

With all the much trumpeted talk of ‘doctors being in the driving seat’, it cannot be acceptable that persons with dementia, if they are there at all, are tokenistically placed on funding boards.

Persons with dementia and carers should be empowered to tell the people with the money what matters to them the most. This could of course be the noble search for a cure, and much more parity for dementia research as compared with other conditions.

Sure it’s about dementia research stupid, but don’t forget about wellbeing.

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