People living with dementia are the ones to listen to. They’re going to be the stars of the ADI Conference.


We’re nearly there. Between 15th and 18th April 2015, Perth Australia will be the host for the 30th International Conference of Alzheimer’s Disease International.

If you ever an opportunity to listen to Tommy Whitelaw for an hour, do it. It’s really easy for people interested in English and global policy like to me to become obsessed with the usual macro policy details, but many people aren’t interested in macro. They want to know how the organisation of health and care systems will affect them individually.

We need to face facts. That is, there are about a million unpaid caregivers often members of a family, like a child or a spouse, in some form of care or support rôle. They do not see themselves as being labelled ‘carers’, but are fully aware of the rewarding and demanding aspects. Invariably they describe how they’ve never been given any formal preparation, just chucked in ‘at the deep end’.

It’s still pretty amazing that there are people who, despite being incredibly busy, find time to go on courses such as my friend Charmaine.

And here’s another crucial ‘issue’. I know nothing about what it is like to live with dementia, nor to care for someone with dementia. I am not a fan of the term ‘co-production’. There is, however, nothing more important than research and service provision being designed around the needs of the people who want the system to help.

I of course like the idea of ‘primary care support workers’, but I do like the idea of GPs being able to diagnose dementias more confidently (particularly differentiating the younger onset dementias, such as frontal dementia, from psychiatric syndromes such as anxiety or depression).

I like the idea of trained specialist nurses being able to get to know a person living with dementia more. I would like greater clarity of how professionals, people in a care or support rôle, and people living with dementia can work together, share knowledge and views, come to a plan while managing beliefs, concerns, expectations and conflicts. I would like this without the bubblewrap of selling “person centred care” and policy wonks, managers and politicians getting fixated with their measurement and gaming.

There will be a few highlights for me in the Alzheimer’s Disease International conference coming up. Not least is Al Power who I’ve got to know reasonably well in the last few weeks – and who seems to be one of the guys who ‘gets it’.

The programme is amazing, with lots for everyone to get their teeth into.

The keynote speakers are stunning.

There are fewer things more humbling than to listen to Kate Swaffer or Helga Rohra. Of course, it is a tall ask to be able to be representative of any of the 47 million people living with dementia, but you get immediately a flavour of what these two view as important from them speaking. They want things better for other people living with dementia, and they are living in the here and now. They don’t deny making the world a better place for the future, but they want people with dementia to emerge from being hidden from view to being active people in society wherever possible.

Of course, the diagnosis of dementia itself is a big deal, and I personally feel, like Chris Roberts, living with mixed vascular and Alzheimer’s dementia in Rhuddlan Wales, and prominent Dementia Friends Champion,  that more care has to be paid to preparing the ground for the diagnosis, the diagnosis itself, and what happens after the diagnosis.

And pay attention to Kate Swaffer, Co-Chair of the Dementia Alliance International, who politely queries how her investigations were done without clear explanation. I find this approach from the medics ‘underhand’, but Kate would be far too polite to say so, I reckon.

Kate’s excellent personal blog, “Creating life with words: inspiration, love and truth”, is a must to look at.

People with dementia have human rights, and it’s become accepted, sadly, for people including professionals to abuse those rights, e.g. physical restraint in residential homes.

Helga, Chair of the European Working Group for People With Dementia (with Alzheimer Europe), doesn’t refer to ‘stages’ of dementia, and I agree with Helga; ‘stages’ is a very medical term, and I have never known such clear linearity (people varying at symptoms in different presentations and rates). But whatever ‘faces’ of dementia, people with dementia and those closest to them have an inalienable right to dignity.

I’ve been honoured to have advance notice of what will be in Truthful Kindness’ presentation. That too will also be a smorsborg of creative astonishment on how one person from California has successfully inspired others around the world to live with symptoms of a dementia.

I do not deny the incredible work being done in dementia friendly communities and young onset dementia around the world. I know, because I reviewed a lot of the abstracts for the conference in these categories, being on the advisory committee for the conference.

But, above all, it’s a chance to meet up with people I like, and whose work I respect, like Simone Willig. There is a real sense of global solidarity I feel currently, including of course the traditional work being done in translationary neuroscience.

I will be looking forward to bumping into Marc Wortmann while dunking my biscuits, as usual; and I look forward immensely to meeting Glenn Rees, the incoming elected Chair elect of Alzheimer’s Disease International.

I reckon I’m all set – I’ve only got this far in organisation for this ‘trip of a lifetime’, thanks to Jayne Goodrick.

We are only a week ago. Am I excited? Very.

The World Dementia Council will be much stronger from democratic representation from leaders living with dementia

There is no doubt the ‘World Dementia Council’ (WDC) is a very good thing. It contains some very strong people in global dementia policy, and will be a real ‘force for change’, I feel. But recently the Dementia Alliance International (DAI) have voiced concerns about lack of representation of people with dementia on the WDC itself.  You can follow progress of this here. I totally support the DAI over their concerns for the reasons given below.

“Change” can be a very politically sensitive issue. I remember going to a meeting recently where Prof. Terence Stephenson, later to become the Chair of the General Medical Council, urged the audience that it was better to change things from within rather than to try to effect change by hectoring from the outside.

Benjamin Franklin is widely quoted as saying that the only certainties are death and taxes. I am looking forward to seeing ‘The Cherry Orchard” which will run at the Young Vic from 10 October 2014. Of course, I did six months of studying it like all good diligent students for my own MBA.

I really sympathise with the talented leaders on the World Dementia Council, but I strongly feel that global policy in dementia needs to acknowledge people living with dementia as equals. This can be lost even in the well meant phrase ‘dementia friendly communities’.

Change can be intimidating, as it challenges “vested interests”. Both the left and right abhor vested interests, but they also have a strong dislike for abuse of power.

I don’t mean simply ‘involving’ people with dementia in some namby pamby way, say circulating a report from people with dementia, at meetings, or enveloping them in flowery language of them being part of ‘networks’. Incredibly, there is no leader from a group of caregivers in dementia; there are probably about one million unpaid caregivers in dementia in the UK alone, and the current direction of travel for the UK is ultimately to involve caregivers in the development of personalised care plans. It might be mooted that no one person living with dementia can ever be a ‘representative’ of people living with dementia; but none of the people currently on the panel are individually sole representatives either.

I am not accusing the World Dementia Council of abusing their power. Far from it, they have hardly begun to meet yet. And I have high hopes they will help to nurture an innovation culture, which has already started in Europe through various funded initiatives such as the EU Ambient Assisted Living Joint Programmes (“ALLADIN”).

I had the pleasure of working with Prof Roger Orpwood in developing my chapters on innovation in my book “Living well with dementia”. Roger is in fact one of the easiest people I’ve ever worked with. Roger has had a long and distinguished career in medical engineering at the University of Bath, and even appeared before the Baroness Sally Greengross in a House of Lords Select Committee on the subject in 2004. Baroness Greengross is leading the All Party Parliamentary Group on dementia, and is involved with the development of the English dementia strategy to commence next year hopefully.

Roger was keen to emphasise to me that you must listen to the views of people with dementia in developing innovations. He has written at length about the implementation of ‘user groups’ in the development of designs for assistive technologies. Here’s one of his papers.

My Twitter timeline is full of missives about or from ‘patient leaders’. I feel one can split hairs about what a ‘person’ is and what a ‘patient’ is, and ‘person-centred care’ is fundamentally different to ‘patient-centred care’. I am hoping to meet Helga Rohra next week at the Alzheimer’s Europe conference in Glasgow; Helga is someone I’ve respected for ages, not least in her rôle at the Chair of the European Persons with Dementia group.

Kate Swaffer is a friend of mine and colleague. Kate, also an individual living with dementia, is in fact one of the “keynote speakers” at the Alzheimer’s Disease International conference next year in Perth. I am actually on the ‘international advisory board’ for that conference, and I am hoping to trawl through research submissions from next month for the conference.

I really do wish the World Dementia Council well. But, likewise, I strongly feel that not having a leader from the community of people living with dementia or from a large body of caregivers for dementia on that World Dementia Council is a basic failure of democratic representation, sending out a dire signal about inclusivity, equality and diversity; but it is also not in the interests of development of good innovations from either research or commercial application perspectives. And we know, as well, it is a massive PR fail on the part of the people promoting the World Dementia Council.

I have written an open letter to the World Dementia Council which you can view here: Open letter to WDC.

I am hopeful that the World Dementia Council will respond constructively to our concerns in due course. And I strongly recommend you read the recent blogposts on the Dementia Alliance International website here.