Tag Archives: DAI

     blog (1)     

‘Dementia friendly communities’ – are you “luvving it”?

There is no universally accepted description of international marketing.

The American Marketing Association defines it as “the multi-national process of planning and executing the conception, prices, promotion and distribution of ideal goods and services to create exchanges that satisfy the individual and organisational objectives.”  Unless we’re careful, the corporatisation of dementia friendly communities will mean that this policy takes a turn for the worst.

The notion of ‘dementia friendly communities’ has a long and distinguished history. The concept of the Alzheimer Café was established in the Netherlands as a vehicle for providing a welcoming atmosphere in an accessible location for all people with or affected by dementia. The first Alzheimer Café took place in 1997 in a collaboration between Dr Bère Miesen and the regional branch of Alzheimer Nederland in north Zuid-Holland. There are now 230 Alzheimer Cafés run by volunteers in the Netherlands with around 35,000 unique visitors each year.

In #ADI2015, Kate Swaffer, world leader living beyond dementia, said pretty emphatically in a talk on ‘dementia friendly communities’ “It’s about our basic human rights.”

Kate at the time said that “people without dementia cannot really know what it means to live with dementia”, and I completely agree. When Donald Trump was surrounded by about ten men signing an executive order on abortion rights, the world was aghast.

There’s been a huge amount of preparatory work on what ‘dementia friendly communities’ might include, and the genuinely global examples all around the world cited in this ADI report are very interesting.

There have been some remarkable achievements.

Look at Dennis Frost, a member of Dementia Alliance International and also the Inaugural Chair of the Southern Dementia Advisory Group in Kiama NSW, which guides the DFC pilot project between the Kiama Council, University of Wollongong and which [Alzheimer;s Australia were also involved in nationally. Many consider this to be the gold standard dementia friendly communities project globally.]

“Two local groups were then formed to establish
a Kiama Dementia Action Plan: the Dementia Alliance, made up of people with dementia, carers, the local council, and service providers; and the Dementia Advisory Group, formed solely of people with dementia and carers. Information sessions for local groups and the public have taken place, the Kiama Community College is working towards becoming dementia friendly, local newspapers have published positive stories about local people with dementia, and the project is showcased online. Kiama is seeing improved community awareness about dementia and training has been provided to help community groups such as the local Probus club, choir, music and knitting groups support people living with dementia to participate/ remain involved with their groups.”

(ADI report)

There’s no doubt that ‘dementia friendly communities’ as a marketing brand is very difficult to disagree with. After all, as Kate pointed out in 2015, a definition of “friendly” is “favorably disposed; not antagonistic”. The work builds on WHO “AGE friendly cities” – and you can see from this checklist that many of the aims overlap with dementia friendly communities, though there are obvious differences (e.g. city vs rural community).

I think as the worldwide narrative on human rights for dementia becomes more fine-tuned later this year, through the groundbreaking work of Alzheimer’s Disease International and Dementia Alliance International, it is reasonable to take stock of what ‘friendly’ means, other than not being overtly antagonistic.

Kate at the time mentioned ‘respect’, ‘inclusion’, ‘equality’, and ‘autonomy’, and these are of course essentially the human rights based approaches (take for example the PANEL principles of ‘participation’, ‘accountability’, ‘non-discrimination’, ‘empowerment’ and ‘legality’).

As Glenn Rees, ADI chair, said in a recent speech:

“A lot has happened in the last two or three years in other countries in implementing dementia friendly communities. The principal message of this publication is that there is no right or wrong way to make communities dementia friendly, though projects will fail if they are not inclusive of people with dementia.”

Unless there is a genuine cultural shift in priorities, there’ll be a perpetual sense of ‘groundhog day’ in this. Only today, the UK government were requested to lead the way in improving access to buildings for disabled people, according to a new report. The document, Building for Equality: Disability and the Built Environment, published by the Women and Equalities Committee, highlights the challenges facing disabled people in accessing homes, public spaces and other buildings. It recommends that the government should develop a cross-departmental strategy bringing together all built environment policy affecting accessibility.

Whatever your view about ‘dementia friendly communities’, I feel that it is a dangerous mentality which has emerged that such communities need to be ‘commissioned’ and somehow overseen by a ‘provider’. I have known some excellent local initiatives to have been totally annihilated by not having the ‘appropriate’ backing. This has to cause alarm for anyone who is interested in equity. And it does rather beg the question of whether ‘dementia friendly communities’ have become too much of a brand, with slick marketing?

Take, for example, the notion that ‘dementia friendly communities’ should align to a certain specification or standards. Intuitively, this makes sense for streamlining the efficiency of the production of a dementia friendly communities, but dementia friendly communities are not BigMacs – i.e. the same product whether in Dublin or Dubai. With the rest of the world entrenched in austerity, it is curious that bits of the third sector should somehow consider themselves immune from financial pressures. What would have been helpful was whether the introduction of standards would unnecessarily cost money for what ideally should be organic initiatives led by persons living beyond a diagnosis of dementia. Also, whether the standards basically only benefited big business in some weird neoliberal ‘survival of the fitness’ by imposing a level of top level management where only the financially fittest could survive.

I disagree fundamentally with the assumption made so easily in conferences and commissioning pitches that ‘Dementia Friends’ is a social movement. I think any process where you can become a ‘Dementia Friend’ by clicktivism merits scrutiny. There’s no doubt that ‘Dementia Friends’ has had a formidable up-front investment, and the results of the quality monitoring of this unbelievably are still in development. ‘Dementia Friends’ is a brand. If you object to my characterisation of this, feel free to look at the number of diverse intellectual property classes it is registered for.

For example https://www.ipo.gov.uk/tmcase/Results/1/UK00002640312

Examples of classes

The product in ‘Dementia Friends’, a script delivered verbatim by many volunteers, a script so rigid and intransigent that you should not depart from it even if you happen to be a dementia academic or practitioner, is so homogenous  that I really feel it cannot even with the most generous will in the world be called ‘a social movement’. If you have private interests in dementia research or the collapse in social care (mitigating against the delivery of high quality dementia friendly communities), as a dementia friends ‘champion’, you are best parking them at the front door. Again: not a social movement.

But I do not wish to give a biased one sided view of Dementia Friends.

It was a highly effective programme for mitigating against the stigma and prejudice faced by dementia (though it is worth noting that five years after its introduction the English newspapers are still stuffed full of headlines about ‘dementia sufferers’ or ‘dementia victims’.) As a brand, across different jurisdictions, it has the promise to be cost-effective due to ‘economies of scale’, and well rehearsed marketing channels (possibly due to good relationships between large multinational dementia charities).
As a product, it is highly visible with good brand identity.

That’s the selling BigMacs in different continents without needing to change the product bit of the blogpost. But we know that there are huge cultural differences in perception of living beyond dementia and caregiving, as well as formidable socio-economic differences. So the argument runs that the homogeneous international marketing of a particular brand of ‘dementia friendliness’ runs the risk of squashing diversity and innovation, and at the very worst is a horrible form of cultural imperialism imposing one nation’s cultural views about dementia.

Global image of the brand can be effectively reinforced via the application of standardisation to integrated marketing communication strategy. The slogan of a global sports clothing company Nike, ‘Just Do It’ can be mentioned to justify this argument. This slogan effectively communicates the same marketing message and promotes the same lifestyles in the global scale, and so far Nike has immensely benefited from this strategy in terms of profit maximisation.


However, one wonders whether larger providers in the third sector are really the best people alone to build ‘dementia friendly communities’. If one is not careful, corporate and regulatory capture can both rear their ugly heads. Corporate capture refers to the means by which an economic elite undermine the realisation of human rights and the environment by exerting undue influence over domestic and international decision-makers and public institutions. Regulatory capture is a form of government failure that occurs when a regulatory agency, created to act in the public interest, instead advances the commercial or political concerns of special interest groups that dominate the industry or sector it is charged with regulating.

In international marketing, the “adaptation strategy” implies changing various aspects of products and services to a considerable extent in order to meet the needs of consumers in international markets taking into account their differences. Adaptation strategy offers advantages of meeting differences of local markets at various levels, and in this way achieving greater levels of customer satisfaction. But here it is worth noting why the language is in itself objectionable – people living beyond a diagnosis of dementia and their care partners are citizens, not merely consumers to be sold an ever increasing number of products in a ‘dementia friendly way’.

So Glenn for me absolutely hits the nail on the head for me in his speech for the 19th Asia Pacific conference:

“Across the world the concept of dementia friendly communities is being given practical expression in four different ways by;

  1. Being inclusive and supporting and protecting the rights of a person with dementia.
  2. Tackling stigma and lack of community understanding of dementia.
  3. Increasing the capability of the health and care workforce and availability of 
key services.
  4. Improving the physical environment – a topic that is central to the ageing cities 

.There is no one size fits all in designing dementia friendly communities. But to be successful there are some key steps. 
First, to involve people with dementia as equal partners. Second, to determine what action is needed. 
Third, to ask people with dementia and other stakeholders if they consider their community to be dementia friendly. And if not, why not. 
Fourth, to form local dementia alliances involving businesses, local government, service agencies, medical services and hospitals. This may help attract funds for the project and a project officer.”

One way of avoiding the big corporatisation of dementia friendly communities is to support the organic initiatives which do not attract as much funding. The work of ‘Dementia Alliance International’ is particularly recommendable as it works closely with Alzheimer’s Disease International on the formation of global policy, including the application of the United Nations Convention on Rights of Persons with Disabilities’ and dementia.

Dementia Alliance International (here) is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world . They seek to represent, support, and educate others living with the disease, and the wider dementia community. They are an organization that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

As they themselves say:

“Our work on claiming the Human Rights for all people with dementia means we are legally entitled to be included, and not just consulted, or represented by others. We are also entitled to the appropriate disability support that any other persons or groups of disabled people are afforded.”


That is surely where the discussion of ‘dementia friendly communities’ MUST start?

Enjoy #ADI2017.







Share This:

     blog (1)     

#ADI2016 The force awakens

I enjoyed the opening ceremony – though some delegates remarked to me how ‘fit’ the dancers were, maybe indicative of long plane flights to get to the conference venue.

Yesterday, I remarked to the CEO of Alzheimer’s Disease International (ADI), Marc Wortman, as Marc was leaving the hotel, that the Alzheimer’s Disease International conference had ‘interesting dynamics’.

What I actually mean is this.

Speakers from Dementia Alliance International were outstanding. I think Prof Peter Mittler’s talk on how people with dementia must demand access to their rights under the UN Convention for People with Disabilities was a game changer for many. For me, it was the best lecture I’ve ever attended in my lifetime.

I mentioned to some separately that for me Prof Peter Mittler was the equivalent of a premiership footballer, in terms of lecturing ability, when many lesser mortals in comparison look in lower divisions.

I reckon I would’ve actually made it to Dennis Frost’s talk on time especially, not wandered through accidentally half-way through by accident, had Dennis not been advertised as ‘A person with dementia’. This billing on the programme was complete nonsense – as ridiculous as having ‘A person without dementia’ to describe the billing of someone like a policy wonk from WHO.

This was a worthy project which caught my eye.



It was lovely to be recognised by so many at the conference – people whom I had never met before, as well as longstanding close friends of mine. The conference expectedly did have the atmosphere of a family wedding – with people I like and respect there.

I think Jeremy Hughes and George McNamara, senior people at the Alzheimer’s Society, gave excellent presentations. George’s one is particularly relevant to my next book, and contained many many useful avenues for future directions. I think Dementia Friends on principle has good aims, but a real concerted effort must be put now into making meaningful sense of this high cost campaign.

Dementia Alliance International (DAI) is a group essentially run by people with dementia to advocate for people with dementia. But the sheer individual brilliance of the presenters shone through – including Prof Peter Mittler and Prof Mary Radofsky whose contributions were incredibly interesting. There’s no doubt ADI hugely benefited from their presence in the conference, including in the programme list. But I do also feel this is a beginning.

The mood music has changed. DAI has a scarce resource other people want – individual expertise by people with dementia – which many people do not have. It’s clear that the future direction of dementia policy now can be ‘no decision about us without all of us’, and can move from dinosaur lobbying techniques and hospital-dominance to representing the sincere views of people living with dementia.

A day before the first full day, Glenn Rees AM, Chair of ADI, let us know that his Board had approved DAI’s proposal to promote Convention rights, and this would now become their official policy, such that it would be left up to individual national organisations as to how best implement rights-based advocacy. Rights-based approaches, including rights to independent living and right to health, have huge implications for dementia care and support worldwide.

Helga bust a gut to help me with my book signing session.


Thanks very much to Peter Macfarlane from Wisepress for his help for this. Dale Goldhawk, Vice Chair of ADI, even bought a copy!

I had great feedback from my presentation on the awareness of international human rights. Thanks very much to John O’Keefe for chairing this.

Some photos I took are here.

13041131_232090293817662_8157962174523061243_o 20160422_103824  20160422_135354_1    20160424_092422 20160424_093355 20160424_093401  20160424_132154    CgvdgD_WIAEvVSe Cgv4dVVXEAET2SU Cgv5DMuWYAASBMP Cgv82hdWYAA2gcO CgxKmpSXEAEiijP Cgy80YsWgAELZYr20160424_132739 20160424_134858 20160424_143229         20160424_152601  20160424_160111 20160424_160116 20160425_082003    bud bud2 bud3 CC1m5neUMAAReTY    IMG_0147 IMG_0149 IMG_0150 IMG_0151 IMG_0163 IMG_0168 IMG_0176 IMG_0181 IMG_0186 IMG_0189 IMG_0192  IMG_0202 IMG_0203 IMG_0215 IMG_0233 IMG_0242 IMG_0245 IMG_0255 IMG_0257 IMG_0291 IMG_0295 IMG_0296 IMG_0299 IMG_0311 IMG_0315 nAJ Nancy one of my favourites

I suppose my favourite ‘times’ of conference was when Agnes Houston made a ‘selfie’ photo of herself for the first time.

And also I think Agnes and Nancy McAdam talking about how they felt really included in Scottish dementia research (#whywedoresearch) on a boat on the Danube was much fun too. A sort of “Alas Houston and McAdam” moment.

Share This:

     blog (1)     

Our #ADI2015 was a triumph of hope in place of fear

The mood music is changing.

We’ve had circular discussions on ‘suffering’ before, to the point we probably agree to disagree, but have learnt to respect other people’s well meant perspectives. But I think it’s fair to say that the happiness and camaraderie which accompanied #ADI2015 is a very real one. I took this photo at a chocolate factory in Adelaide Hills. Nutrition and dementia, as it happens, was a key satellite theme of the #ADI2015.


Here’s a film by Arc Seven Communications of Beth Britton explaining the need to consider what people with dementia can do.

Living well with dementia from Arc Seven on Vimeo.

As it happened precisely on the day of our return, as I was travelling from Kuala Lumpur to Amsterdam, Australia aired a brilliant programme ‘Insight’ on living with dementia.

It had been a huge pleasure to have returned from spending time with Kate Swaffer, Peter Watt and Colin McDonnell who all featured in this remarkable programme. In place of fear, I felt a substantial integrity was provided by having so many delegates living with dementia attend this year’s Alzheimer’s Disease International (ADI, @AlzDisInt) conference. We met up in Perth, Western Australia, in the middle of April, for three wonderful days.

My talk was on whether dementia care would easily lend itself to private markets. I received a lot of useful feedback from delegates. I basically pointed out the problems of trying to put dementia care under the philosophy of insurance contracts because of the potential asymmetry in information between insurer and person/patient. This information asymmetry, I argued, could come from, say, a complete genetic screen, if NHS England get their way in moving towards personalised medicine/Big Pharma. The problems arise if someone with a high genetic risk for dementia seeks insurance knowing he or she is at high or low risk; or whether a person obtains an insurance policy and then behaves in a high risk behaviour. I argued that it was likely that there would need to be legislation in the English jurisdiction to protect against genetic discrimination, as in the United States.

However, I think I had most fun in the ‘poster session’, for me on Friday afternoon. I had the unexpected pleasure of chatting with Karen Harrison Dening at my session, over the need for a network of national clinical nursing specialists. As it happens, Karen has just published a brilliant book on culture and dementia, which I strongly recommend.

Poster to print for Australia.ppt

Thanks hugely to Chris and Colin McDonnell (@ColinMcDonnell) in helping me enormously during the poster session, which I do find stressful every time (particularly when you have curled up posters so vehemently they have no chance of sticking onto the board!)


This was for me the most interesting poster of the whole conference – on challenging behaviours, by Kate.

This blogpost explains its rationale in part. Even putting aside the general consensus that the dementias are under diagnosed in many jurisdictions, there’s a feeling that the recent scrutiny in dementia policy has overall helped.

I was particularly impressed by the research presented by Prof Martin Prince on behalf of his group at King’s College London. I think Prof Prince has a clear understanding of the critical assumptions of his work, as you would expect him to have. I had a long chat with him after his lecture. He struck me as a very sincere, thoughtful man, who was open to wider repercussions of his work. In particular, we shared a common interest in seeking accurate estimates for the global prevalence of younger onset dementia.

The beginning of the conference (@ADIConference), I felt, was very surreal but pretty magical. I don’t particularly like the word ‘indigineous’ as I feel Aborigines as it can further division and divide, and I feel that Aborigines have experienced a very bad deal culturally from others exerting racial and cultural imperialism.

Here, I feel some of us must show some solidarity.


I personally bought a didgeridoo which I gifted to my mother on return (although I am mindful of the physiological limitations of the use of didgeridoo as a musical instrument by females). I was surprised to hear that didgeridoos (sic) are not permitted in hand luggage, however.

The conference itself was incredibly well organised. You can still access the book of abstracts for the conference here and wider information about the programme. I helped to review abstracts for the conference; I was indeed on the international advisory board for the conference, so reviewed abstracts for dementia friendly communities and younger onset dementia.

I am at the end of policy involved with living better with dementia, which includes advocacy across jurisdictions. I found an intense sense of hope and confidence from the conference, as opposed to the shock doctrine of Pharma which can be striking elsewhere in global policy on dementia.

The “vanguards” of dementia advocacy, globally, one may argue, are Kate Swaffer from Australia and Helga Rohra from Germany.

So it came to pass that we were all hugely proud when Kate Swaffer, Co-Chair of the Dementia Alliance International, a group consisting of people living with dementia, came to give her plenary.

I understand that videos of talks given by members of the Dementia Alliance International will be uploaded onto their website in due course.

Here’s for example Helga Rohra, Chair of the European Persons with Dementia, giving her plenary. I was deeply honoured to be name-checked in her talk. Helga is a friend, and someone whom I deeply respect.

(video from the DAI You Tube channel)

One of the plenary speakers was Al Power (@alpower12), Allen Power. Basically, I thought Al is terrific. I have now read his book “Dementia beyond disease”, which I feel is a groundbreaking reframing of the narrative towards treating people living with dementia as individuals with dignity, and how they should not be the target of pejorative language or assault through inappropriate medication.


I have known of Mick Carmody for ages. Mick has been instrumental in ‘rallying the troops’. I anticipate that his enthusiasm and focus will lead to greater things in global advocacy.


But I fell in love with Mick and his wife Sue from the moment I met them. They’d come from Brisbane, Queensland, and were hugely thrilled about participating in an international conference on dementia. Mick lives with dementia in Australia, and, it’s fair to say, had not been given sufficient or appropriate encouragement, pursuant to diagnosis. What changed the game for him was finding the Dementia Alliance International.


I am a card carrying member of the club that individuals who’ve been given a diagnosis of dementia are all unique individuals with a huge amount of experiences, and it’s not what people cannot do, as with us all, but what people can do. Here are Helga Rohra and Chris Roberts, powerful Dementia Friends Champion ambassador for the United Kingdom, as described here in the popular Alzheimer’s Society magazine “Living with dementia”. DSC00226

Helga is simply larger than life, and I found many things Helga shared with me profoundly interesting.  Society has come a long way, but there’s still a long way to go. Helga, I suspect, speaks up for a vast army of people who’ve been given a diagnosis as part of a large social movement, expecting dignity, acknowledgement of human rights, expecting improved employment relations post diagnosis, and calling for holistic care.


The #ADI2015 was simply triumphant for the Dementia Alliance International. I think part of this confidence has come from the new strategic alliance with the Alzheimer’s Disease International organisation, which has supported DAI, but gone to great lengths to preserve the autonomy of DAI. This brand new arrangement is described in a recent ADI “Global perspective” newsletter. Credit must be given to Kate Swaffer (@KateSwaffer) and Marc Wortmann (@marcwort), CEO of ADI, who, I feel, have been instrumental in making this vaguely possible. Thanks especially to Marc Wortmann for his kind remark about my (minimal) contribution to the #ADI2015.


It’s dangerous to underestimate how Kate Swaffer has totally altered the terrain of attitudes towards dementia, in a positive way. Kate was diagnosed with the temporal variant of frontotemporal dementia, and the personal story is well described elsewhere.

I travelled around Australia after the conference too with Chris, and I hugely enjoyed meeting John Sandblom (@jball49), Treasurer of DAI. We all basically agree John is a top bloke! DSC00235

Here’s a picture of Chris Roberts, Mick Carmody and Sue Carmody having a look at the posters presenting the latest research into the dementias at #ADI2015. That #ADI2015 was successful in disseminating research to people living with dementia, comprising 10% of the delegates of the conference, I feel is a huge achievement. DSC_0089

I found Daniella Greenwood entirely focused on what the needs of the people with dementia in the care sector are. In the Australian jurisdiction, persons are called “consumers”. Parking this difference in terminology, the plenary given by Daniella emphasised the critical importance of relationships, and I feel this is to be broadly welcomed, in her analysis of ‘consumer directed care‘. DSC00210

Chris was often to be seen manning the DAI stall in between satellites and plenaries at the Conference. But the atmosphere there was “buzzing”. DSC00241

We did enjoy each other’s company. I’ve known @TruthfulKindnes (@truthfulkindnes) for ages, living with a constellation of dementia symptomatology in the United States.


One of Tru’s list of achievements has been acting like a conduit for the creative expression of many people living with dementia. She specifically mentioned, for example, the experience of visual hallucinations. Visual hallucinations can be a predominant feature, for example, of the diffuse lewy Body type of dementia, an important cause of younger onset dementia, typically with a fluctuating way of symptoms appearing. DSC_0134

Having witnessed Tru’s desire to promote the work of people living with dementia, and her wish to use her gift in public speaking to inspire people, I know how important it was for Tru to make it from California to Australia to promote the experience of people living with dementia.

Tru has a true gift for speaking, with perfectly modulated speech and content.


Finding this hope to encourage others is deeply meaningful. Here, for example, is Simone Willig’s film (@SWHerborn) of Helga speaking about music therapy.

This year there were some truly outstanding satellite symposia. One that springs to my mind was the one on employment and dementia. I contributed there on the need for a greater understanding of disability law by employers in terms of unfair dismissal and discrimination, consistent with Kate Swaffer’s talk there, and I urged the need for cognitive diversity in the approach from employers, resources permitting.


Research was a key pervasive theme of the #ADI2015, which took as its title, ‘Cure, care and the lived experience’. There was a keen sense of learning from each other, across jurisdictions. Again, I thank Marc Wortmann for his lead in the workshop I attended where Chris Roberts gave a powerful overview of the lived experience.


Canada, I felt, offered an useful steer in this workshop on research.


It is a remarkable testament to the solidarity amongst people living with dementia and people close to them that there’s a huge interest in dementia research; but this is, as many us feel, not just about testing new drugs like guinea pigs but a genuine interest in research in care and living well with dementia. Otherwise, in policy terms, I feel that living better with dementia becomes the ‘squeezed middle’ between prevention and the optimistic search for the cure by 2025. CD7imBGUIAAKAV5

I was struck too by the inclusion of social media in this narrative. DSC_0109

When a diagnosis of dementia is disclosed to someone, quite sadly often in a substandard manner by professionals, there is a clear impact on friends and family. I found the contributions from Jayne Goodrick (@JayneGoodrick) and Kate Roberts, Chris’ daughter, sensational, in telling delegates actually what is happening in real life.


Tru devoted a substantial part of her talk in outlining the importance of the DAI, as well as her “swiss cheese” model of dementia.


Completely by accident, I happened to bump into Glenn Rees (@Glenn_Rees), now Chair of the ADI. Everyone who has been following world policy in dementia is aware of Glenn’s remarkable steer of Alzheimer’s Australia, where he has been instrumental in promoting consumer views; and this has had a profound impact internationally on a number of arms of policy, such as campaigning against physical restraint, and campaigning against the inappropriate use of antipsychotic medication.


Chris, I felt, was a true gentleman, and very engaging as a person. I loved travelling with him in Australia, and with Jayne and Kate. Many happy emotions are brought up in thinking of what we got up to; including Chris’ use of the phrase, “That’s the kind of guy I am!


And it was incredible to meet for the first time ‘imaginary friends’, quite safe really, such as Jac (@JacintaLynch), here in Adelaide sitting with Chris.


I don’t drink alcohol. The reasons for this are well rehearsed.

But this did not stop me in any way loving the landscape of the environs of Adelaide Hills. Australia is of course well known for famous brand names in wine, and the Barossa Valley. It, ironically, took me a journey all the way to Australia to appreciate ‘black pudding’.


The proof of the pudding was indeed in the eating.


I learnt to trust the restaurant judgments of Kate Swaffer, a pretty mean chef herself (here’s her culinary blog).


I don’t think Kate has the time to write a cookbook on top of her massive list of other commitments – but.. her work can be felt in remote areas too.

IMG_0259 (1)

And – seriously – I have never eaten such a perfect Thai curry ever (the lower dish): cooked by Kate.


On a completely different matter, I learnt very many things in Australia; not least that kangaroos have big scrotums (sic).


And that Chris can stand very close to emus, looking as if he’s in fact eyeing them up for dinner. One thing I certainly am thankful to Mick for is explaining how emus are bloody stupid creatures.


I didn’t know what to expect from Sydney after the conference. But it turned out to be amazing – I spent time with “guess who” (Kate) and new found close friends Lynda Henderson (@yodsupporter) and Veda Meneghetti (@Veda_Meneghetti).

I have many happy memories of my time in Sydney – here are Veda (left) and Lynda (right).


Veda is fast becoming a leading global ambassador for one of the lesser known of the temporal variants of frontotemporal dementia, the logopenic variant of progressive primary aphasia. She lives with it, and retains remarkable abilities from her life as a professional musician (aside: hence explaining the need for ‘life story’).

It’s yet again a case of what people can do.

Look at this – there’s no way I can sequence rhythms as well as this.

In fact, my supervisor from Cambridge, Prof John Hodges, who also shares a professorial position with Neuroscience Australia (@NeuraAustralia) happens to be one of the leading neurological authorities on this important condition.


I was really impressed with my visit to see Prof Olivier Piguet, a mutual friend and colleagues of colleagues of mine, Prof John Hodges and Prof Facundo Manes. NeuRA, an innovative research hub in Australia, is something truly advancing the frontiers of cognitive neurology.

Whilst I did not have time to go to the Sydney Opera House (I think Kate has seen the iconic ‘Carmen’ there).. IMG_0316

I did have a very long chat with Prof Olivier Piguet. Olivier and I have the same strong interests in social cognition, the somatic marker hypothesis and the functions of the ventromedial prefrontal cortex, anticipation of future events, episodic memory and eating behaviours; the common link being the behavioural variant of frontotemporal dementia. This is of course what I specialised in for my PhD at Cambridge.

It is nice to be involved with promoting research in dementia, if only at a global level and not in this jurisdiction (England).

I am not, however, convinced that a US baseball cap is the best way to do this for me?


I also discovered Olivier is much taller (and wittier!) than me! IMG_0342

Places like NeuRA do inspire me. They should inspire the rest of the global research community in cognitive neurology too. IMG_0360

And Veda, it turns out, was buzzing about the work of NeuRA. IMG_0366

Chris, it turned out, was amazing at throwing a spear as in Aboriginal culture. He did far better than the other visitors at Uluru, but of course it wasn’t a competition. When I delicately asked Chris how he came to be so proficient at throwing spears, he explained that he used to enjoy throwing javelin in school sports. So again it’s about what you can do – and I can’t throw a spear with my chronic double vision!


Chris, a leading advocate for living with mixed vascular and Alzheimer’s disease, was pretty good at boomerangs too.

The landscape around Yulara Drive (and Uluru) was simply gorgeous. This per se of course is nothing to do with #ADI2015, but conveyed the flavour of hope and happiness that was present at #ADI2015.


Chris, Jayne, Kate and I watched Ayers Rock change colour. Jayne in fact recorded a remarkable time lapse video of this. IMG_0420

Chris taught me how to take photos of people; consisting of 2 eyes and 1 ear. IMG_0427

Ayers Rock gave us plenty of time to think about the beauty of Australia. IMG_0447

But we had to ease our way back to the real world in a thud, albeit via a 4.5* hotel in Sydney near the international airport. IMG_0465

Currently, there is quite a lot of convergence in mutual research interests. Here for example is output from Alzheimer’s Australia taking as a spotlight prevention and social determinants of health (discussed in my new book).


This was my old book ‘Living well with dementia‘ (from 2014), which I didn’t “flog” at #ADI2015 (though many were well aware of it, which humbled me.) The large poppy on the front is courtesy of, and photographed by, Charmaine Hardy (@charbhardy).


I got Kate, Helga and Al to sign a copy of my book published last year – in a completely narcissistic way (I do apologise.)


I myself met ‘virtual friends’, such as @JoanneAgnelli whose work on language and dementia is widely respected.


My new book (“Living better with dementia”) is significantly more discursive than the last one, and should be published around 21 July 2015. Thanks very much to Jessica Kingsley for publishing it. It contains a chapter on whole person (integrated) care, which is due to reach a prominence, hopefully, after the UK’s general election on May 7th 2015.


The ‘stub’ will give you a flavour of the topics I will cover.

“What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Shibley Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields”

And I think #ADI2015 has paved the way for this book (and my final one which will be on living at home and residential care settings in more progressed living with dementias.)

Share This: