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Rights in the post ‘dementia friendly community’ world

Rights for persons living with dementia are at risk of being hijacked by persons not living with dementia but who want to ‘facilitate’ this industry. Taking the physical disability movement as a comparison, the assertion of disability rights continues to be most vocal from people living with physical disability. Likewise, rights for people living with dementia and carers cannot be sold as bitesize products for commissioners to be truly authentic, further marketed by appropriate ambassadors in third sector entities. The imbuing of a rights based consciousness is too important to be trivialised this way, in a world which lives post ‘dementia friendly community’.

A ‘dementia friendly community’ was wrong at so many levels. The word ‘friendly’ was wrong, furthering a sense of oppression in a community which was far from homogenous in the first place. It ran the risk of not only being patronising to a group of people, but being run for the benefit of business and third sector, and careerist people, wishing to seek competitive advantage. It further consolidated the notion of people who happened to have been given a diagnosis of dementia as passive recipients of services, leaving people to be ‘engaged’ at pre-fabricated meetings rather than genuinely involved in co-production. The human rights approach is not simply a list of possible ‘nice to have’ legal rights from your local Citizens Advice Bureau; it is a way of holding large healthcare providers to account at one end, in terms of upholding dignity, privacy, and so on, and also in promoting the fundamentals of citizenship.

In a post ‘dementia friendly community’ world, often articulated through the prism of higher income countries, rights take on a different meaning as they are inalienable and universal. They therefore offer an alternative economy to the one occupied by personal budgets and consumer-directed care (again further reinforcing the idea of people with dementia and carers as passive recipients). The alternative economy of citizenship, mutuality and reciprocity, offers a new and important language for the whole 50 million currently living with dementia, and complementary rights for  those closest including unpaid and underpaid carers.

There is, I feel, a great advantage to reframing the debate into one of social capital as a collective good and which emphasises its collective benefits. Under this perspective, trust, reciprocity and strong social norms are seen to effectively regulate cooperative social relationships. The social capital makes the whole stronger than the sum of its constituent parts, and rather than people seen as individual bits in a competitive world behave to ‘fill in the gaps’ of  others. Combining a private and public good perspective, Inkpen and Tsang (2005) provide a network centric definition of social capital as “the aggregate of resources embedded within, available through, and derived from the network of relationships possessed by an individual or organization” (p. 151).

But there is no reason to believe that this other way of doing things should be necessarily denied inward investment; the crucial thing is that this is not just to ‘facilitators’ or big corporates, but for people living with dementia themselves and carers. Dementia is characterised by complexity, and you really have to simplify it at your peril. It also attracts a high level of multiple morbidity; it is extremely unlikely that a person lives with dementia alone, but also with a range of other issues such as heart or lung problems. Therefore, the idea of a ‘dementia friendly community’ is entirely bogus. A community as such which is friendly to ‘dementia’ should be friendly to all, and defining people by disease labels, while enticing to big corporate charities, is not how the real world works at all.

A social network perspective can focus on the enduring patterns of relationships among interacting social actors (i.e. entrepreneurs, firms) through examining the social, economic, or political network structures of ties that provide actors with opportunities and constraints. A core position derived from the network’s notion, as articulated by Mitchell (1974), is “that if people are tied to one another by a variety of links, then they will find it difficult to sever social relationships and therefore are obliged to carry out the expectations and obligations entailed in those relationships” (p. 283).

The ‘interconnectedness’, a term which was all too familiar to Kitwood, is further strengthened now by the ‘internet of things’. There is no doubt that the Internet has significantly expanded the meaning of community for older adults. Once tied to physical locations, communities created through online experiences transcend space, time, language, and financial, physical, and other traditional barriers. Dementia friendly communities became obsessed with the idea of big corporate banks or high street brands welcoming shoppers better; but this was to ignore the plethora of other barriers (such as financial) or physical disabilities stopping people engaging with such capitalist communities in the first place. Dementia friendly communities merely becoming an extension of David Cameron’s version of Nudge capitalism entirely defeated the purpose of promoting citizenship and rights of people living with dementia, unless you happen to believe that their most important rights are consumer rights.

But now there’s the “internet of things” (IoT). Essentially the idea is to give physical objects identities on the internet. Just like your computer or phone are connected to the internet now, in the not too distant future, so too will your car, house, fridge, and almost anything else you can imagine. This world of technology, if not subject to cyberattack or malfunction, might conceivably make one’s life easier. Gartner estimates that the Internet of Things (IoT) will support total services spending of $235 billion in 2016, up 22 percent from 2015. Services are dominated by the professional category (in which businesses contract with external providers in order to design, install and operate IoT systems), however connectivity services (through communications service providers) and consumer services will grow at a faster pace.

In the new post-dementia friendly era, it is imperative that “rights” are not simply viewed as a “nice to have” phenomena, or a new product to sell to commissioners. They can instead be the vehicle by which people with dementia (and other conditions) and carers can flourish. Social enterprise activities are local ventures that have both a market orientation as well as fulfilling a social or cultural purpose. Strengths-based approaches to community development emphasise the social “capital” assets of communities. Strengths-based approaches aim to reinforce local talents and build local capacity, and the critical thing is that, as for physical disability, people’s talents are best harnessed in particular areas. This approach is incredibly important to people who live with dementia still in employment, where neurodiversity means that people are in rôles most suited to them.

By focusing on local priorities and strengths and assets – rather than perceived community deficits – pride, confidence and motivation are enhanced. The rights-based approach uniquely offers people a chance to participate fully, and lessens dependence on external approaches to “solving” local community issues. Social capital, as measured by the strength of family, neighbourhood, religious and community ties, supports both physical health and subjective wellbeing, and raising social capital in local and middle income countries through rights based approaches is achievable.

The success of a ‘dementia friendly initiative’ might include a big grant, angel investors, venture capitalists, or private equity investors. And indeed the lazy wishing to make money out of ‘dementia rights’ will seek the same sources of income. But the interconnectedness of people is the disrupting factor here, arguably. Examples of the pervasive power of online social networks in the lives of older adults are everywhere, including Skype and FaceTime.

Technology can be compared, for example, with traditional approaches of harnessing social capital such as “timebanking”. LinkAges’ Bay Area Time Bank (http:// timebank.linkages.org/) is a community-based service exchange network where members provide neighbourly services to one another  in exchange for time. Facilitating both online and of ine interactions, Time Bank members, including older adults and family caregivers, can address personal needs through exchanges with other members that focus on their interests and skills and explore new possibilities for meaningful engagement in their communities, exactly in the spirit of the timebanking as introduced by ‘true radical’ Prof Edgar Cahn.

Furthermore, there have been lots of potential opportunities in using crowdfunding to support and fund projects in developing economies. According to a recent Nesta blogpost, the countries that raised the most money in 2015 were: India ($27.8m), the Philippines ($26.9m), Nepal ($25.5m), Mexico ($24.8m), and Kenya ($19.9m). All of these countries — with the exception of Nepal — have budding crowdfunding ecosystems and could become leaders in their regions.

Be in no doubt – the language is changing from marketing of facilitation to genuine emboldening of rights, where people with dementia all around the world can call the shots. ‘Dementia friendly communities’ benefited corporate and large charities more than people with dementia themselves, and goodwill for this was bound to run out.

References

Inkpen AC, Tsang EWK (2005) “Social capital, networks, and knowledge transfer.” Academy of Management. Acad Manage Rev 30(1):21

Mitchell JC (1974) Social networks. Annu Rev Anthropol 2:21

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