Why I decided to launch my own society on dementia

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It was with a rather heavy heart that I decided to launch my own society on dementia earlier this week.

A few years ago, I applied to be an information officer in a well known dementia society. I wasn’t shortlisted, and at the time it felt to be a personal setback. Nonetheless, I was determined to do something for education about dementia. Last summer, I also applied in good faith for a non-paid position in another dementia charity, which was equally a waste of my time.

I have been a junior physician at the National Hospital for Neurology and Neurosurgery at Queen Square coming close to nearly 15 years ago. I remember as part of my training learning about patients of mine, such as a young man with a progressive decline in memory and change in personality. His diagnosis was HIV dementia.

A few years previously, I completed my own doctoral thesis in Cambridge in quite a common type of dementia for people aged 65, called the behavioural variant of frontotemporal dementia . I was lucky in that my big result from this thesis has now been replicated by many research groups around the world and is even occasionally cited in specialist textbooks in dementia.

In my personal life, a lot has changed for me. I became physically disabled in an acute event nine years ago, and I nearly lost my life. The whole experience, and numerous other events and experiences, has made me quite resilient now. Undeterred, I went on to obtain postgraduate degrees in management and in law.

Some time ago though, I feel I had decided to walk away from the ‘greasy pole’ anyway. I am regulated by both the medical and legal professions – but personal circumstances mean that my goals are very different now to fifteen years ago.

Like many people, I would like to make a difference, but, like some people, I have very limited scope for doing so. Financially challenged, I have saved up money to go to the Alzheimer’s Disease International conference in Budapest in fewer than ten days’ time. I’m giving a talk there on human rights, and my best friend Kate Swaffer arrived there today.

But I have been thinking a lot about Paul Mason’s work entitled ‘PostCapitalism’. It is an epic I feel and definitely an intellectual tour de force.

It has made me think about paid jobs and the public good. There are people who write open source software for hardly any money, and the quality of their work is good.

There is a mismatch between income and performance. I don’t think people who get the highest salaries in dementia and given recognition societally are the people who have contributed most value to dementia. In fact, I think the relationship is sometimes (but not always)┬áthe opposite.

There are people who have written Wikipedia pages for nothing for much of their life. As a comparison, I nearly ended up making a financial loss in royalties in my second book on dementia because the index which I paid for myself cost so much. I enjoy writing about dementia though – my first book won best book of the year award in the BMA Awards for the health and social care category.

I do think I.T. has totally changed things around. It is easy to disseminate material for free now; some “goods” are not unreplaceable. If I park in car parking space, that takes up the space for somebody else. If I eat a banana, that deprives somebody else of a banana. If I share pdfs on the internet for free, I deprive no-one.

Back to the main issue, I do not need validation through being important. There are personal issues about the approach of the harnessing of opinion I dislike strongly. Co-production should be equal and reciprocal, not effectively ‘asset stripping’ of social capital to make a profit as Alison Cameron put it earlier today. (I thank Alison Cameron for ┬ábringing out the best in me in focusing on codesign and coproduction particularly.)

But while I am still alive, I would like to give something back. Anything can happen to anyone at any time, so I am going to build from scratch a website all about dementia and those closest to them.

I am lucky I have some knowledge about dementia, and I will see where this takes me. I can spot blind spots in policy through medical training which many people in Big Charity can’t. If you have any views on what should be on this website, please do feel free to contact me. I ultimately want to make a society, not concerned with, or looking for surpluses or profits, so any thoughts on that are welcome too.