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.

Academic impact and the melting of meaning

                          

Flowing through my twitter stream are many articles, blog entries, and comments about how to build an academic career with impact. What rock star supervisor to do your PhD with. What A-grade journal to publish in. What prestigious grants to get. What impact factors to accumulate. It's the thing on the tip of so many academic tongues - and rightly so I guess, it's a competitive world out there characterised by exploitation, job insecurity and rampant casualisation. One recent arrival was The happy academic's Blog post What advice would world-leading academics give their EMCR selves? It's an enjoyable read.

Hmmm. I'm not a 'world-leading academic', so very few of us are. That is the first most important thing to say upfront. There is no need to be 'world leading' to make an impact and to have a great career. I knew that as an early-career researcher (ECR) and I validate her/my point of view now, so many years later. The truth is, I have nothing to say to my ECR self - she (I) did OK, and I got to where I am, one way or another, and if I had arrived at a different place, that would have been OK too. I'm proud of my ECR self - it was a tough ride sometimes, that working class kid done good.

As I think about my career my thoughts aren't backwards looking. I'm not thinking about what I might have done better, or that ARC grant I was lucky to get early in my career, my alt-metrics, my citations, or the many thousands of hours of teaching. No. My thoughts begin with the visceral and existential melting of meaning: my mother, with late stage Alzheimer's. Ten years ago she did not know that what she was doing, what she was saying, and the choices she was making, would be entirely forgotten. She did not know that what seemed important, would no longer be important. That as her sense-making melted the impact she had as a woman, living a life, would be obliquely sewn into the fabric of her children, the trees that she planted, the pebble splash of her presence at social justice, political and environmental rallies and through her vote as an Australian citizen. Her tendril impact was me, at a cellular level, and through me, any impact I ever had on crafting a better world.

So as I've thought about my impact over the past decade I've become quite focussed on the melting of meaning. I imagine: what if I, in ten years hence, were in the early stages of Alzheimer's? In that imagined future (and yes, I'm touching wood) I'll soon not remember my life, my children, or my stories. I won't remember writing this Blog entry, or what a Blog is, or what a computer is, or what electricity is, or what reading and writing is, or what thinking is. I won't remember the Frankfurt School, or Freire, or bell hooks, or critical pedagogy. I won't remember to comfort myself philosophically with Berman: all that is solid melts into air.

In that imagined future - what do I hope others might see as my 'impact factor' in terms of my work as an academic? Well, it isn't my ARC grant, or my publications, or my employment title. It is the honorary yellow Inspector's helmet, awarded to me by graduating firefighters in Fire and Rescue NSW in 2007 that sits on the top of my bookcase with the name 'Childs' playfully stuck on the back where a firefighter's name rightly goes. That helmet never got me promoted, never lead to citations, never lead me to be world leading.

What else? It's every fire service in Australia that now includes as a matter of course, images of female firefighters on their recruitment and promotional materials. It's female firefighters and their champions - every single one of them who have never heard my name. It doesn't matter. Not a bit. They are their own ravelling of muscles, intelligence and decision-making, all of their own in community with others.

It's every young women I've ever mentored because as Alice Walker told us, each one must pull one towards equality and inclusion. I don't need to remember that I did that. It's there. As my dear friend Rebecca might say you did the Thing.

It's every policy that I have worked to revise - though no-one will ever remember that I did - that in someway challenged the entrenched elitism of the University going forward. It's the echoes, the small ripples of voice and energy, that was part of the cacophony of democracy fighting against nuclear war, Iraq invasion, Indigenous land rights, Unionism. It's the green leaves of kindness, respect, intelligence and gentleness grown strong in my two sons. It's the activist research I did. It's the anti-guru bullshit-calling anti-forelock-pulling attitude that has been critical to me making sense of the academe. I was never here to be seminal. Not everyone is, not everyone can be, and most in truth are not.

My name is not on those echoes and ripples. They flow and melt away, as meaning does. In that imagined future, where someone feeds me, and someone dresses me, and I have no agency and my thoughts are misfiring crackles in missing spaces of grey, I won't remember to be glad I was happy I was an echo and a ripple.

But right now, in this moment, I am awfully proud of that helmet, and of the good-enough academic I was as my younger-self, making a  good-enough difference.