Why I am extremely grateful to key individuals for thoughts on my new book

I have spent ages thinking about the contents of my new book on living well with dementia. I submit the manuscript at the end of October 2014, so I have a bit of time yet.

I think the easiest part is the published literature base on which to draw the narrative from. This gives an useful indication about the direction of travel of approaches to dementia.

It’s ‘awkward’ singling people out, but on this occasion, if I may, I would like to.

Jo Moriarty (@aspirantdiva) is at the Social Care Workforce Research Unit at King’s College London.

“Jo joined the Unit in 2002 following the transfer of the National Institute for Social Work Research Unit to King’s College London. Research interests include social work education and dementia care training for social care professionals.  … Jo is the Editor of the Innovative Practice Section Dementia: the International Journal of Social Research and Practice.”

Kate Swaffer (@KateSwaffer) is a close friend of mine, and we share between us many concerns in common. I don’t think Kate needs any introduction. Kate has educated me on various initiatives working globally, especially in Australia; but the odd combination of warmth and grittiness of the Dementia Alliance International, a group of people living with different causes of dementia, continues to inspire me.

Chris Roberts (@mason4233) is also a very good friend of mine. Although I’ve never met Chris, we’re hoping to do a @DementiaFriends session at BPP Law School on 1 December 2014.

Norman McNamara (@norrms) doesn’t know he has influenced my book, but the chapter synthesising the competing needs of persons with dementia, their friends and family and others in the use of GPS trackers as smart technology involves a balanced proportionate response on the basis of human rights, as well as an understanding of the cognitive neurology of why people with dementia might want to walk out of their local environment.

Tony Jameson Allen (@TJA_evonet) is somebody who shares EXACTLY my sense of humour. I once had a nice pizza with Tony off Oxford Street, and I explained there my wish to give a coherent explanation of the basis of ‘sporting memories’ based on current neuroscience. I intend to weave in an explanation of musical playlists for reminiscence too here.

I would not of course be so grandiose as to call my friends here a ‘steering group’, but a number of principles have come to light.

I now do not feel it would be useful to anchor the book in a single policy document, however currently influential, as it is indeed true policy documents come and go. They are often highly biased to the interests of their authors or their ‘paymasters’.

I cannot promote global policy if emanating from a single charity. This really does run the risk of promoting charities at the expense of promoting awareness of issues to do with living well with dementia, although often the two may collide.

There are huge problems with firmly entrenching the book in England only. The narrative is hugely relevant to Scotland, Northern Ireland, and Wales, as well as Australia and Argentina, where indeed the audience may even in fact be more sympathetic.

I do not feel that my book on dementia should be intended as a ‘bible’ of policy written for policy wonks. The people I have always been most interested in influencing are people with dementia, people in the care and support network, students (who include future leaders of tomorrow both within and external to the workforce), and practitioners.

I have, paradoxically, no interest in influencing academics, in that I really share the pain of academics needing to advance their own research grants and their own agendas. One of the best things about not being paid to do my research is that I can look unemotionally at the issues.

The other ‘issue’ is that I do not wish to articulate a vision too far forward in the future. Jo pointed me in the direction of a THES fantastic article on writing a textbook. Otherwise, the book ends up being too speculative and quite unhelpful for people currently at the coalface.

I have had it up to my neck in people ‘seeking opportunities’ in dementia. I of course do not wish to be hypocritical.

At quite large cost to myself, in the sense I am paying for my own flight, accommodation and conference pass, I have agreed to do a book signing session for ‘Living well with dementia’ at the @AlzAssociation conference in Copenhagen later this month. The details are here.

I will also likewise on my own present my non-clinical research on policy at the @AlzheimerEurope conference in Glasgow later this year. The details are here.

But I wish people ‘seeking opportunities’ well. I understand their pressures as small enterprises. But I have an agenda of my own – to share with the outside world the various ins- and outs- of how a person living well with dementia can interact positively with his or her own environment. This is not the same as promoting ‘person-centred care’, currently in vogue. And this is certainly not the same as promoting ‘purse-centred care’ as my friend Kate calls it (#KoalaHugs).

Political parties come and go. The greatest challenge I feel for persons living with dementia, their friends and families comes from the politicians mucking things up for them.

I think fixating on a cure serves to promote a narrow set of interests.

Bear in mind I’ve been in this field on-and-off for the last seventeen years.

Don’t promote your agendas in my name, please.

3 Responses

  1. The View From Here July 1, 2014 / 10:24 am

    Two of my friends both UK GPs visited me in France over the weekend and I mentioned living well with dementia… They were very interested and mentioned ” mindfulness ” I wondered if you think mindfulness has a part play ..?

  2. Shibley Rahman July 1, 2014 / 2:22 pm

    Mindfulness, although one can paralyse oneself through an analysis of neuroscience underlying it, I feel could have a part to play in some people living with dementia – as I essentially feel that at the heart of wellbeing in dementia is framing the relationship of the person with dementia with his or her environment. The extent to which mindfulness might be affected by the dementias is a complicated one, in that there is a clearly a semantic difference between the mind and the brain.

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