Thanks to Caroline Bartle for an outstanding infogram of my book ‘Living well with dementia’

I’m no stranger to ‘infograms’.

‘Infograms’, ‘Information graphics’ or ‘infographics’ are graphic visual representations of information, data or knowledge intended to present complex information quickly and clearly

I first met Caroline in the Alzheimer’s Show in London Olympia earlier this year. She is incredibly enthusiastic about the dementia ecosystem – it’s completely genuine and authentic.

This #tweet suddenly appeared out of the blue from Caroline today.

Caroline is at @3SpiritUKNZ.

CB Tweet

I had the impossible task of trying to summarise my book in 20 minutes flat for the @AlzheimersShow.

But I feel living well with dementia is essentially about a person who’s received a diagnosis being fully at ease with himself or herself, and equally importantly with the world around him or her.

Thanks to Caroline

No one person has taught me more about living well with dementia than Kate Swaffer

When I posted this on my Facebook yesterday

Starbucks

it was on the back of a joke that Chris Roberts and Kate Swaffer, both friends of mine, had GPS trackers on me.

I intend to tackle the potential beneficial use of GPS trackers for some people living with dementia at significant risk of travelling way beyond their local environment.

And travelling beyond my comfort zone is exactly what happened to me at the end of last week.

I ended up at the Alzheimer’s Show in Manchester, to give a 20 minute skit on my book ‘Living well with dementia‘.

Tommy Dunne and Chris Roberts, bosom buddies, sat together in a little section of the workshop. I could spot they were listening to every word.

Jayne Goodrick asked me a gentle question – unlike the question I asked from Prof Stuart Pickering Brown the day previously,

“I’d like to ask Prof Pickering Brown, but this question applies to the rest of the panel too, how the millions spent on Big Data and identifying genetic factors for Alzheimer’s disease and frontotemporal dementia, like TREM2, can be rationalised in the context of a social care system on its knees, with zero hour contracts and breaches of the national minimum wage?”

I had of course pre-warned the panel that the question would be incomprehensible, as I am disabled.

Jayne said the question was ‘coded’, but Prof Pickering Brown likewise answered in code.

And he took the question well – I had a chance to thank him for all the work he does on frontotemporal dementia, and he asked me to pass on his personal regards to Prof John Hodges.

JRH

John is one of THE leading experts in frontotemporal dementia, well respected around the world in academia.

More importantly, he is looking forward to my new book, “Living better with dementia: how champions can challenge the boundaries”.

Chris especially feels, and Tommy agrees, that a much more suitable title would be ‘Living better with dementia.”

Now that Chris has explained it, I completely agree. “Living well with dementia” implies imposition of your judgment as to what living well is.

And whatever your objective level of living might be, nobody can deny a need to live better.

It took me some time to get it, but I did in the end.

A bit like how the penny dropped with Tommy’s joke about urinating with the door open.

But I loved ‘The Alzheimer’s Show’ as it felt truly as if I was amongst friends – and I met people whom I have only met on Twitter, who were truly lovely : Suzy Webster, Natasha Wilson, Chris Roberts, Jayne Goodrick, Tommy Dunne.

And I met some wonderful friends from before: Louise Langham, Carers’ Coordinator for CC2A, and Rachel Niblock.

And I met some brilliant people who’d been following me on Twitter, such as Tracey from CareWatch.

I phoned Nigel Ward, the Show Director, and he was brilliant as usual: “Why did you phone me Shibley? There’s no signal in here, and I was only in the next-door cubicle?”

Anyway, I’ve been on and off in the dementia field for seventeen years, which has taken me on various ups and downs, including three months on the dementia and cognitive disorders firm under Prof Martin Rossor as a junior doctor at the National Hospital for Neurology and Neurosurgery, Queen Square.

It’s also seen me go via a 2 year 10 months PhD at the University of Cambridge. I was the first person in the world to demonstrate reliably risky decision-making behaviour in persons with the behavioural variant frontotemporal dementia. It’s a finding which has been resilient for the last fifteen years, having been replicated and explained through neuroimaging.

I am not really into ‘co-production’, mainly having seen it being used as a cover for legitimising some people’s pre-formed agendas.

But I have been heavily influenced by Kate Swaffer who received a diagnosis of dementia some years ago.

The contents of my new book, to be submitted by the end of October 2014, reflect mutual interests of ours. Kate is more than a cook, former nurse, brilliant blogger, and advocate for Alzheimer’s Australia.

I am honoured she is a close friend of mine. She is not motivated by any narcissistic twang.

She is brilliant.

She has taught me more about dementia than anyone I know.

And it’s her birthday today.

#KoalaHugs

Could the “social impact bond” help to improve services in dementia care?

It’s impossible to ignore the occasional spate of reports of ‘care home scandals’, including Winterbourne View and Orchid View.

Whilst a direction of travel might be to advance people living ‘successfully’ as long as possible independently, there’ll be some people for whom a care home might be appropriate. There are particular aims of policy designed to support living well with dementia, such as combating loneliness and providing meaningful leisure activities, which can possibly be achieved through high quality care homes.

It’s pretty often that you hear of social care being “on its knees”, due to drastic chronic underfunding. A concern about attracting investment from the private sector is that this will help to accelerate the lack of financial resource allocation from the State. And yet this is the opposite to the argument of resources ‘leeching’ out of the public sector into the private sector.

In terms of the ‘business model’, there are concerns that, to maximise shareholder dividend, staff will not be incentivised to ‘care well’, if they are barely meeting the requirements of the national minimum wage. Whilst the employer emphasises ‘flexibility’ of zero hours contracts, for many such contracts are symbolic of a lack of commitment for sustained employment by the employer.

So the idea of bonds being used to prop up dementia care, currently one of the three big arms of the Prime Minister’s Dementia Challenge, has gained some momentum, for example here. Bonds are effectively “IOUs“, and concerns remain for them as in the private finance initiative – such as who actually benefits, the prolonged threat of penalty for not being able to meet your loan repayments, the issue of who decides the outcomes by which performance will be assessed, and who actually manages or controls the enterprise.

Social Impact Bonds (SIBs) are depicted as “a way of enabling innovation, creating flexible contracts around social outcomes and providing linked investment“. But for some, they are a vehicle for enabling ‘privatisation by stealth’.

The current Labour opposition officially is trying to distance itself from any mechanisms promoting the privatisation of the NHS, and yet it is known Chris Ham and Norman Lamb wish to publish a report imminently on the possible use of SIBs in policy under the auspices of the King’s Fund.

This is the title slide of Hazel Blears’ presentation for the Alzheimer’s Show on Friday.

titles

And here is a section of her talk.

[apologies for the sound quality]

Hazel has a strong personal attachment to campaigning on dementia, and is particularly interested and influential in the direction of travel, not least in her rôle as Vice Chair of the All Party Parliamentary Group on dementia, a cross party group made up of MPs and Peers with an interest in dementia.

Andy Burnham MP, Shadow Secretary of State for Health, has made it clear that it is his firm and settled intention to repeal the Health and Social Care Act (2012). The current Prime Minister’s Dementia Challenge is to come to an end officially in March 2015.

Dementia UK set up some time ago its innovative ‘Admiral Nurses’ scheme, to provide specialist nurses who could help people with dementia and family carers to improve the quality of life of people with dementia and family carers.

Burnham has also let it be known that he intends to subsume social care within the NHS under the construct of ‘whole person care’. Whichever various formulations of ‘whole person care’ you look at, you tend to find a ‘care coordinator’ somewhere. The exact job description of the care coordinator, nor indeed which specialisms might be best suited to accomplish this rôle, is somewhat unclear presently.

But it is all too common to hear of people being diagnosed with dementia being ‘lost in the system’, sometimes for years without follow up.

A “care coordinator” might help to boost access to the following services: emotional support, enable short breaks for people with dementia and anyone in a caring role, promote nutritious meals, ensure medications are given on time, ensure the correct medications have been subscribed (for example avoiding antipsychotic medications in individuals who might be unsuited to these), advice about suitable housing (including downsizing), ensure all physical commodities are properly medically managed; and so the list goes on.

I feel it’s pretty likely there’ll be a ‘first mover advantage‘ effect for any entity which takes up this coordination rôle in dementia care. But the tension between this and the Opposition’s policy is palpable: one cannot talk of this entity being ‘the first to enter the market’, as many wish (and expect) Labour to abolish the internal market in health care.

Such a coordinating entity could well be a recipient of a SIB – but is this like the PFI of social care? PFI by and large has an incredibly negative press amongst members of the general public.

But on the other hand, is it vindictive to prevent a social enterprise from pitching from such a service? If that entity has the technical ‘know how’ to run operations nationally competently and at a reasonable price, would that be preferable to the State running such services when projects such as NHS IT and universal credit have not gone terribly well?

In our jurisdiction, private companies can hide easily being a corporate veil, and are for example currently not readily accountable through freedom of information legislation. This is despite numerous requests to Jeremy Hunt in parliament about parity in disclosure requirements from both private and public providers.

And the track record of some outsourcing companies in the private sector, it is said, has been terrible.

Jeremy Hunt and Norman Lamb are currently in control of NHS and care policy, but there might be a fundamental change in direction from the next Government.

Or there might not be.

Persons living well with dementia are not ‘curiosities’. So let’s move on from this.

Quite to my surprise, I found that the ‘Pushme-pullyu’ from “Doctor Dolittle” has its own description in Wikipedia:

pp

A ‘Pushme-pullyu’ was therefore a ‘creature of curiosity’.

A common introduction to a session introducing dementia might be to ask the question, ‘How many of you know a person with dementia?’ About half of the room will put their hands up at this point.

If you change the question to, ‘How many of you know of a person with dementia?’, it is said that the other half of the room will put their hands up.

It must be, by the law of averages, be very likely that you will know of someone with dementia at the very least, as it is though that – conservative estimate klaxon – there are about 800,000 people living with dementia in the UK.

The “dementia friendly communities” plank is an important part of the dementia strategy “tripos”. In fact, it is one of the yardsticks by which the current dementia strategy in England is being judged.

This is, of course, “low hanging fruit”, as the number of dementia friendly communities will have certainly gone up from a figure tending towards zero.

It is impossible to argue AGAINST inclusivity and accessibility, especially since living with dementia has moved in policy terms from a biomedical model to a social one of disability. Therefore, making reasonable adjustments for people living with dementia is utterly commendable, and can be particularly challenging if certain disabilities are ‘invisible’.

But the term itself is problematic: “dementia friendly communities” DOES imply division – that people living with dementia, “the dementia”, are different to us.

There is still a stubborn feeling of stigma and discrimination, by some, towards people who have received a diagnosis of dementia. And part of the solution to that will be addressing bizarre pre-conceptions of what people living with dementia might be like.

But even within any one of the various ‘disease categories’, an individual’s lived experience of dementia will be different. That is the paradox of extrapolating too much from any one person’s experience of living with dementia.

I feel, though, we are still in “dangerous territory”.

I witness all the time people with dementia featuring in events to do with dementia in a tokenistic fashion.

While the organisers and participants of the G7 ‘legacy event’ will vigorously deny that this was a feature of their event, the answer by Dennis Gillings, “World dementia envoy”, whose particular expertise in living well with dementia is quite uncertain, to Helga Rohra, herself living with dementia, did raise eyebrows amongst the cognoscenti of this field.

At the other extreme, it would be nonsense to have no plenary speakers living with dementia in sensitive panel debates on topics to do with dementia. And yet this is exactly what happened in a recent high-profile event on ‘sexuality and dementia’.

But the idea that you’re “smashing preconceptions” about people living with dementia might at first sight seem perfectly laudable, and people should not be in denial, or showing ‘wilful blindness’, of their dodgy preconceptions of what dementia might be. The sinister side of the shock doctrine lying as a bedfellow with commissioning for dementia is that it’s well known private markets thrive on fear.

And why the need for hyperbolic language? It’s a bit like my pushme-pullyu example: the use of ‘shock doctrine’ to make a point. Why are people ‘shocked’ that brain scans might reveal significant atrophy of the cerebral cortex, and yet people can still function and be good fun to be with?

However, the whole approach must be articulated with extreme caution, as an unintended consequence of this approach might be to exacerbate division rather than to encourage inclusivity. And nobody wants this.

“Inclusivity” is a difficult concept. I sometimes balk at the idea of ‘involving people with dementia in assessing our research grants’, in the same way I perhaps ‘involve’ my postman when I take receipt of my mail every morning.

But with the greater high profile of the dementias, we all need to show greater levels of responsibility before we descend into a chaos of slogans.

 

 

I am looking forward to my “Meet the Author” session at Manchester @AlzheimersShow on Saturday

I published a book earlier this year on “Living well with dementia”.

Since then, I have genuinely noticed a change in attitude in people in discussing dementia.

This for me is a major triumph. I wrote the book with a pile of research papers from various professorial laboratories from England and Scotland from the last few years, wondering how I could convey the gist of them in a short book.

Harry Potter it is not. It’s not “Fifty Shades of Grey”.

The book (details here) has been warmly received by people in carer and support networks, persons living well with dementia themselves, nursing students, and by members of the public.

I have no idea whether any medical professionals have read it, or commissioners, but they’d be precisely the group of people who could benefit from reading it as well?

Front cover

I am genuinely really excited about doing my ‘Meet the author’ session on Saturday.

Friday 4th July 9.30am – 5.00pm

Saturday 5th July 9.30am – 4.30pm

MANCHESTER EventCity.

Event City

Venue: EventCity, Phoenix Way, Off Barton Dock Road, Urmston, Manchester, M41 7TB

email

Please do come and find me if attending! I can be easily direct messaged on my Twitter @legalaware 24/7 if you’re following me.

This is what you can do while there! at The Alzheimer’s Show Manchester:

  • DISCOVER dementia and care exhibitors including care at home, care homes, living aids, funding, legal advice, respite care, training, telecare, assistive technology, charity, research, education, finance and entertainment
  • MEET Admiral Nurses in free, confidential  1-2-1 clinics
  • LISTEN TO high profile speakers covering a range of topics in the Alzheimer’s Matters Theatres
  • PUT your questions to the experts in the daily ‘Question Time’ panel sessions
  • HEAR personal experiences of caring for a person with dementia, join in the ‘Open Mic’ session and listen to a series of practical advice talks in The Alzheimer’s Talks & Topics Theatre
  • MAKE USE of Community Integrated Care’s Quiet Area for carers to leave a person in the care of a qualified dementia specialist
  • TAKE PART in the free Practical Workshop, sessions include music, singing, Tai Chi, creating dementia friendly environments and assistive technology
  • FIND informative product and service talks in The Exhibitor Workshop
  • BECOME a Dementia Friend and learn more about Dementia Friendly Communities

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My own PhD at Cambridge under Prof John Hodges was in the cognition of the behavioural variant frontotemporal dementia, so I am especially looking forward to Prof Stuart Pickering-Brown’s talk on the genetics of frontotemporal dementia.

Details of what is happening at the Alzheimer’s Show “Alzheimer’s Matter Theatre” are here.

My Dementia Friends information sessions to be held at the BPP Law School Holborn September-December 2014

I am looking forward to running a number of 45 minute information sessions about dementia at BPP Law School (@BPPLawSchool).

They will all start at 3.45 pm.

Nine of the sessions will be held in the standard supervision rooms for teaching of law students in the pre-solicitor part of their training before they assume training contracts with law firms.

One of the sessions will be in the formidable lecture theatre of the BPP Law School in Holborn, used to lecture law students.

ROOM BOOKINGS

I will be running ten sessions between now and March 2015.

You can only attend if you sign up on the official Dementia Friends website – I will post the details there soon.

To sign-up, you’ll have to go to a link I will announce in advance on the ‘Dementia Friends’ website.

Because of security arrangements at this teaching institution, it will be impossible to turn up uninvited. There will be a sign in sheet you will have to sign if you turn up.

The venue will be wheelchair accessible; though please let me know if you have any special mobility arrangements.

I can easily be contacted on @legalaware or on @dementia_2014.

My aim is that my sessions will be mainly attended by ” lawyers-to-be ” law students (prior to their solicitor training), lecturers, members of the Queen’s Counsel to be, and staff at the law school

For general information about @dementiafriends you might find following their Twitter timeline useful.

Dementia Friends is an initiative from the Alzheimer’s Society and Public Health England. My sessions will be held at BPP Law School, but these sessions are not to be taken as endorsement of either party by the other.

The aim of the session is to introduce you to five basic facts about dementia through some fun interactive exercises.

The session on 4th December 2014 – will be held in the giant lecture theatre of BPP Law School Holborn.

The exact address is: BPP Law School, 68-70 Red Lion Street, London, WC1R 4NY. Tel: 020 7430 2304 Fax: 020 7404 1389.

map

This lecture theatre can host around 100-150 people so this session might be one of the biggest @DementiaFriends sessions ever!

DF

Planned dates are as follows:

Session 1 : Thursday 24th July 2014

Session 2 : Thursday 14th August 2014

Book for any of these sessions:

(Session 3 is to be rearranged due to an unavoidable conflict on the part of the host.)

Session 4 : Thursday 16th October 2014

Book here.

Session 5 : Thursday 13th November 2014

Book here.

Session 6 : Thursday 4th December 2014

Book here.

Next year’s sessions:

Session 7 : Thursday 15th January 2015

Session 8 : Thursday 5th February 2015

Session 9 : Thursday 26th February 2015

Session 10 : Thursday 19th March 2015

 

 

Accusing someone living well with dementia of not having a dementia reveals very serious policy flaws

For all the money that has been pumped into ‘dementia awareness’ internationally, one would have hoped that deeply entrenched attitudes were at last shifting.

The drive for ‘a cure for dementia’ has only added a dangerous level of confusion. Cure for what type of dementia? Do they mean a cure for Alzheimer’s disease, the most common type of dementia worldwide?

In what sort of form will this cure reveal itself? A vaccine preventing people from developing dementia, like a vaccine for cervical cancer? Or an oral tablet which ‘stops dementia in its tracks’?

Soundbites are cheap, but it is not an innocent issue at all. Resources are being diverted away from frontline care, such as specialist nursing, into public-private partnerships designed to reap a shareholder dividend for Pharma developing “innovative drug treatments”, or into dementia information sessions.

It is a bit rich complaining of the dire state of post-diagnostic support ; when millions have been actively pumped into ‘information sessions’. Ideally, you should have wanted a world where both were successfully achieved?

It’s too late for a post mortem on that. There will be a change of government soon.

But I continue to be struck by the steady stream of people in authority, involved somehow in dementia care like care homes or on social media groups, who ‘accuse’ people living well with dementia of not having received a diagnosis of dementia?

If you could prove that beyond reasonable doubt of a false representation, designed to generate money or expose someone to a loss, that would constitute a fraud offence under our Fraud Act (2006) in our jurisdiction.

However well meant such an accusation might be, it can of course be extremely unsettling for the recipient of the accusation. At worst, it could come out as a statement designed to cause offence or menacing, which is a public order offence if done in public.

The issue does reveal itself to me as representative of an underlying fault line in national policy, which was intended to facilitate people talking openly about the dementias to mitigate against stigma and discrimination.

That it might not be obvious that someone is living with a chronic progressive condition of the brain is a really significant faulting in awareness policy for me. I remember being ‘guilty’ of thinking ‘he doesn’t look disabled’ after waiting for ages in the queue for disabled toilet cubicles on trains. Of course, some disabilities unlike mine are invisible: somebody with multiple sclerosis might be living perfectly well with an indwelling catheter.

Likewise, for example, a person living with behavioural variant frontotemporal dementia might have virtually no obvious cognitive deficits in memory, planning or perception, but might have found to have a profound change in behaviour and personality as reported by a friend or member of a family.

How will a member of the public identify a person living well with dementia? If it is ‘invisible’, how then do “dementia friendly communities” work?

I do not subscribe to the approach ‘if you see a doddering old lady at a zebra crossing, think you might help them as a ‘Dementia Friend” as this plugs into ageist stereotypes about what dementias are. One of the critical messages of ‘Dementia Friends’ is that “dementia is not a natural part of ageing“.

The media, and indeed ‘policy leaders’, have also contributed to this unseemly mess of memory problems being synonymous with dementia. If cognitive deficits are not substantial enough to be given a diagnosis of dementia, a ‘mild cognitive impairment’ might be diagnosed. It could be that people accusing people living with dementia not having received a diagnosis of dementia mean that “you can’t have a dementia – maybe you have a mild cognitive impairment?” But even this is problematic, as it has not been made sufficiently clear that there is insufficient evidence that mild cognitive impairment represents a ‘pre dementia’ form, and this analogy with other conditions such as diabetes and renal failure actually falls flat.

It is basically an unholy mess. You can see how if GPs refer lots of ‘possible diagnoses of cancer’, the system will be unable to cope with pressing cases of cancer for management. It’s quite unclear how the ‘possible diagnoses of dementia’ are being followed up by specialist services, confirming the diagnosis, or not, over a period of time. You need this progression confidently to make a diagnosis of dementia, further making the urgent drive – this second – of upping the dementia diagnosis rates, however well intentioned – in reality absurd.

Have things actually improved in the last few years?

In my opinion – no.

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.