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‘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.

Nike

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 
movement.

.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.

 

 

@dr_shibley

 

 

 

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