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A heart-felt plea: let’s move dementia policy forwards not backwards?

The most depressing thing about seeing exactly the same line-up of has-been speakers delivering the same pitches about dementia as in 2016, 2015, 2014, 2013 and 2012 is not simply a relentless feeling of ‘Groundhog Day’.

It is my genuine concern that we are trapped in a time warp, and that we haven’t taken things much forward since 2012, the David Cameron Dementia Challenge, the year coincidentally there was bonfire of the legal aid centres. So much for dementia rights then?

It could have been up to the Care Quality Commission to police ‘dementia rights’ in absence of the bonfire of legal aid? What are offences of privacy, degrading treatment, right to private and family life or deprivation of liberty if they are not fundamental human rights abuses?

There are some exceptions to my general rant, however, which I feel merit attention.

Take for example my book launch event held in February 2017, for my third book on dementia: “Enhancing health and wellbeing in dementia: a person-centred integrated care approach”. I suggest you don’t listen to the whole event, all 2.5 hours of it, although it is very good. We embraced the novel concept of having new speakers talking about new things not charging an entrance fee.

It’s definitely worth listening to Reinhard Guss, highly knowledgeable chair of many things but a brilliant speaker in view on psychological approaches to dementia. Also worth listening to is Lucy Frost, who gave an insightful view of what it’s like to work in the NHS ‘in real life’ in dementia care.

Like it or not, there have been advances from Apple, Google and Amazon in voice-recognition assistive technology devices? In an outstanding presentation by Maneesh Juneja, Maneesh considers what impact these devices might have on supporting dementia care. Maneesh is a relatively lone voice in coming to this subject not on any commission, so is well worth listening to.

groupTerrific afternoonDiscReinhardGina 1Nicky RipaljeethahaLisa Kate and Marian

I think it is difficult to keep on milking the cow that is Dementia Friends. I don’t wish to see people being seen to learn about dementia turn into some giant experiment in clicktivism – it’s not good enough to count as a ‘dementia friend’ somebody who has spent minimal time on a website. Extending aspirations from one million to two millions is more an artefact of spending money in mass marketing than in bringing about a genuine social movement. And if things have changed so much why are there so many relentless headlines talking about ‘dementia victims’, or people living with dementia on 20 hour trolley wait in the NHS? Jeremy Hunt can apologise all he wants, but with only eight years until David Cameron’s cure for dementia, one can hypothesise that time is running out.

For all the engagement and “consultations” in dementia, social care is on its knees; home care is at breaking point. In policy, “caring well” has been expunged from the NHS England Transformation network “The Well Pathway for Dementia”, the wrong UN document appeared in the draft Welsh dementia strategy (rights of child as opposed to rights of people with disabilities) (see page 15), and the NHS England guidance on care planning offensively made no reference to clinical specialist nurses “Admiral nurses” in dementia who are vital for palliative care.

Having annual conferences with the same speakers and the same power grabs, vested interests and agendas is taking us no further forward. I beg colleagues to stop taking the UK into a dementia banana republic “hot bed of chumocracy”.

@dr_shibley

 

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