It’s exactly the same list of CBE speakers who are now on the programme of the latest dementia industry conference as the previous programmes in 2012, 2013, 2014, 2015 and 2016 (except a few years when these people were merely CEOs they were not CBEs then).
This perhaps raises an interesting question is: that is, does the consumer have enough choice between dementia charities and regulators in England?
One can predict the need for the regulator to update their regulation techniques, so that care homes which were rated ‘outstanding’ one day do not appear as the next Winterbourne the following day. (The overzealous reliance on regulation, rather than performance management, was also seen in heady days of the global financial crash where Lehman Brothers were given the top financial status one day but declared bankrupt the following day.)
For all the talk of “challenger banks” in the banking industry, the fact is new smaller banks are rarely successful in entering an industry dominated by a few giants. The result? That your bank will charge you the earth for unauthorised overdraft transactions when your bank attempts a transaction with no funds. This is merely the same as your inbox trying to accept a new email when you have reached your inbox limit.
When businesses have insufficient competition, they are prone to unconscionable practices. The way to get round these barriers to competition is to maximise harmonisation and interoperability – that’s why uniform methods of payment and initiation and account management electronically between banking providers can be actively promoted due to the new EU Payment Services Directive (PSD II). It is now my contention that we similarly have a dementia industry out of control, with some of the key players too big to fail whatever they do.
We see exactly the same unhealthy private market in conference organisers. It is rare for new speakers to break into the speaker circuit, despite there being a wealth of expertise in a range of different backgrounds. For example, you’re much more likely to hear of the latest failed big budget project from a large charity than an organic project with barely any funds from a stakeholder group of people with dementia. This is much to the detriment of moving things genuinely foreword in dementia care and practice.
This is not in the interest of anyone. When Deloitte did their famous report on thought diversity, it was argued that diversity in thoughts and opinions was exactly what you needed to avoid over-reliance on certain failed ideas from people prone to groupthink. This can mitigate against vulnerability to market shocks, and build up resilience.
By this virtue, there is absolutely no reason for ‘Dementia Friends’ to be run by a single charity amassing millions of new customers seemingly in perpetuity, as a result of multi-million pound marketing through a Government assisted initiative. This homogenisation of provision about dementia information provision results from an overzealous scripting of information sessions which is intransigent and inflexible, and does not encourage any divergence from groupthink or innovation. It simply encourages intense marketing and branding by one charity which is blatantly uncompetitive, and I am deeply worried about the damaging impact this has on the rest of the dementia “local economies”. The mass-marketed “Dementia Friends” cannot even with the greatest generosity in the world be considered a ‘social movement’ – call what it is, please, thrat it is a highly effective mass marketing exercise akin to selling BigMacs around the world.
In English dementia policy, people like me are trying to encourage people with dementia to focus and work on what they can do, rather than what they cannot do. This is also known as an assets or strengths approach to healthcare, and is fundamentally important as a narrative solely based on deficits and impairments can be profoundly demoralising. Indeed, I made this a blatant theme of my first book, which won best book of the year award for the BMJ Books in 2015 in health and socIal care; this book was called “Living well with dementia: the importance of the person and the environment” (CRC Press, 2014).
But there is a very serious problem as a result of groupthink, lack of competition and, at worse, a sense of collective corporate arrogance – that is, mistakes can easily be made.
Take for example the lack of ‘caring well’ in the NHS England ‘Living well with dementia’ Transformation Network.
Whoever thought of a policy on dementia which airbrushes and expunges out ‘caring well‘ – e.g. clinical specialist nurses, respite care, domiciliary care, social care – even in the ideological drive for a small state cure-reliant approach, I feel, should be frankly ashamed of themselves. And it’s soul-destroying to see this substandard piece of work being pedalled at expensive conferences.
I spent 9 months out last year unpaid, and researched for myself the current state of play in domestic and international standards in integrated dementia care – and yes, some of it is not what you hear heavily marketed in big conferences, and is available for a mere fraction (up to tenth) of the price! It has received excellent reviews from other experts in the field, for which I am grateful.
I wrote 3 books in 3 years, completely pro bono, this way. It was intensely fulfilling to be able to contribute in my own way.
I strongly feel that we need international solidarity, away from financial vested interests, for people living with dementia to be genuinely enabled through instruments such as the United Nations Convention on Rights for People with Disabilities, as dementia is legally a disability. People with dementia don’t necessarily ‘need permission’ from others, such as large corporate charities. I feel words such as ’empowerment’ and ‘engagement’ are terms of inappropriate aggrandisement – I know as a carer that all I want is some space, time, and real practical help.
If indeed dementia ‘never travels alone’, why do clinical specialist nurses get such a raw deal in policy in dementia compared to in cancer (e.g. Marie Curie nurses or MacMillan nurses)? The hallmark of dementia is complexity and co-morbidity; it is very unlikely for you to find a person living with dementia living with no other physical or mental health condition. It is thus imperative we have adequate care planning, continuity of care, workforce training and caring for the carers in the English offering for ‘caring well’ – i.e. through Admiral Nurses. And to give her credit, the Chief Admiral Nurse of Dementia UK is superb, Hilda Hayo.
I believe that you can learn a lot about dementia from people with the CBEs or with big cheque books at big conferences, but they are not the only source of useful information.
You do need to hear the other voices, often people living with dementia and care partners not in professional ‘engagement groups’ AND ALSO the voices of grassroots professionals and practitioners who have been dealing with this day in day out for decades but who rarely have time or resources to attend thee conferences, to get practical help.
But I don’t think that with the near monopolistic behaviour of certain players we are getting proper ‘coverage’ in policy of other aspects which can make a real difference to people’s lives.
Big conferences are great fun – but only part of the story.