Monday, October 30, 2017

Science as my life raft in the sea of my mother’s Alzheimer’s

Over the eight long years (so far) of my mother Helen’s decline into the final stages of Alzheimer’s, science has been my life raft.

I’ve needed it. The life raft is what has helped me stay afloat when the flotsam and jetsam of quackery has floated by.  The quackery runs along familiar lines. Prevent Alzheimer’s by taking foods/vitamins/brain exercises/smart life choices/new hobby/omega-3 fatty acids (etc etc). Or populist interpretations of research, such as the heteronormative nuclear-family-promoting story (shared uncritically by many media outlets) that one friend posted in Facebook that claimed that ‘Babysitting Grandchildren Could Lower Risk for Alzheimer's. #badluckfor yousuckerswhodonthavegrandchildren

Rationality and clinical studies remain the weave-and-weft of my life-raft. Woven into the fabric is the work being done by what was, until this month, known as Alzheimer’s Australia – now Dementia Australia. The work done by Dementia Australia is amazing. I have walked to raise money for them, turned to them for phone-counselling at my darkest existential moments, and to their fact-sheets and research reports. (See their link ‘Learning’). They are not my only source of evidence-based information, but they are certainly one of the best.

Why is rationality and science so important to me as I have journeyed with Mum and her illness? Well: because science matters. Not hear-say, not wild claims, not quackery, not individual stories dressed up as epidemiology. Just like climate science matters. Just like global warming is not a belief system: Alzheimer’s science matters and is not a belief system.

I say all this as a way of explaining why I got upset this past week with the release of Maggie Beer’s recent cookbook, written in collaboration with international renowned Alzheimer’s researcher Professor Ralph Martins. When Maggie Beer first became involved with improving the food in health care settings I thought, go Maggie. I could see totally why this ‘culinary icon’ did a keynote addresses at a recent palliative care conference.

But in October 2017, when her cookbook was launched, media carried statements like ‘Celebrity cook Maggie Beer believes that eating certain foods could be key to reducing rates of Alzheimer's’. (RN ABC). Or ‘Maggie Beer is on a mission to stop the biggest killer of women in the Australia, Alzheimer’s disease, by cooking up a fresh batch of recipes using food that’s scientifically proven to be good for the brain’ (Yahoo).

These claims lead me to post the following tweet:

The support given to the claims made about the Maggie Beer cook book have rocked my life-raft. I know Maggie Beer is much-loved - & I love watching her shows. I think it is fantastic that she has worked to improve the quality of food in aged care facilities. But claiming to prevent Alzheimer’s through food, even where there may have been clinical studies that link some foods to brain health, is a bridge too far.  It is a step into quackery, even where the co-author is a renowned scientist.

Although we might wish it to be different, Dementia Australia currently says this on their website.

They also say:

Note the qualifications: There are 'risk factors' that 'can be managed'. (To find out more, visit here). Alzheimer’s science as it stands in 2017 tells us there is no known cure for Alzheimer’s and no known prevention. Early diagnosis and prevention is framed as risk-reduction at this time. (I say this as a consumer, I critically read, but also trust what Dementia Australia publishes).

Sure - there is science that shows that brain health can be improved for some people, and this may be linked to risk reduction for getting dementia (see for example, Your Brain Matters). It is a leap too far to rub all the disparate studies together, like ingredients in a recipe, and say that certain food can prevent Alzheimer’s.

It is not Maggie Beer's fault that the ABC used the following headline to promote her cookbook: Can this Maggie Beer chocolate cake recipe prevent Alzheimer's? (To which one tweep answered 'No'). But it is surely her responsibility to use her words carefully, and debunk any claims made that her recipes might prevent Alzheimer's. Recently Maggie Beer said that she was 'the conduit for Ralph's science'. (Professor Ralph Martin, co-author). This upset me too. Because this is an appeal to science, a validation that the book and it's recipes, are evidence-based, and that the evidence shows that the recipes prevent Alzheimer's.

I am writing this Blog as a 'consumer' and a 'carer' not as a scientist. But surely, to claim that this cook book, or any cookbook, recipe, food etc prevents Alzheimer's the following must hold true:

The claims made about the Maggie Beer cookbook have filled me with great sadness. My grief for science is wrapped around layers of grief for my mother. This feels like a kind of betrayal. I'm the one who makes decisions about her care. And about my own care. I need what I read to be reliable and trustworthy. I can't take a leap of faith based on someone who is much loved, writing a cookbook.

In advertising Maggie's Recipe for Life, Booktopia wrote 'Based on the latest scientific research, Maggie has created more than 200 recipes that help provide the nutrients we need for optimum brain health.' The 'latest scientific research' may help us understand more about brain health - but this is a very long way away from claiming it prevents brain disease.

Science matters. I hope Maggie Beer and Professor Martins - and Dementia Australia - come out and correct the record. I hope they clarify to those of us who are consumers and carers. Those of us who rely on the information of scientists that diets such as this may improve health, and may improve brain health, and this may reduce the risk for dementia and Alzheimer's. Not prevent it. You can't claim that til you've done the studies, had the studies peer reviewed, published your findings. As consumers we need consistent messaging that lets us know the difference between quackery/snake-oil and science.

Some of us cling to that difference. It keeps me afloat.

Dialogue about blended learning

Visit a project I built using Wix in 2010 where colleagues and I explore the meaning of "blended learning"