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.