Is dementia itself being promoted, or are their individual charities?

This is potentially an extremely exciting time for anyone interested in, or actively working, on dementia. Norman McNamara has appointed ‘Purple Angel Ambassadors’ all over the world to help spread dementia awareness worldwide. There are currently volunteers in Australia, England, Germany, Nepal, Scotland, the USA and Wales. Norman is a pioneer in promoting dementia awareness.

The idea of dementia-friendly communities brilliantly encapsulates what a progressive care system could deliver, both for those who need support and for the ‘deliverers’.

The concept is simple: to improve the quality of life for people with dementia and help them to become active members of the community. This means bringing together every part of a community – health services, social care, transport, local businesses, charities and voluntary groups, the police, the fire brigade and local people. There are criticisms of course such as how big could the community be? Also, is it particular feasible to have communities which are ‘dementia friendly’, rather than say focussing on communities which are ‘disability friendly’ or ‘gay friendly’? It could be argued that ‘dementia friendliness’ unnecessarily promotes a silo-way of thinking, which is not genuinely inclusive in approach.

The aim of southeastern Wisconsin city is to become a dementia-friendly community was initiated by Jan Zimmerman, a nurse and administrator of a local assisted living centre. She wanted Watertown, a city of about 24,000 people 40 miles east of Madison, to be a community where residents are educated about dementia, business owners are trained to assist customers with memory loss, and people with dementia remain independent for as long as possible. On 4th February 2014, Alzheimer’s Australia launched their next phase of its Fight Dementia Campaign – Creating a Dementia-Friendly Australia, urging the Federal Government to implement and build on the 2012 Aged Care Reforms and the National Disability Insurance Scheme.

The Belgian city of Bruges has long been recognised as a pioneer in the issue. Traders are putting up signs indicating that ‘they’re ready to help’. There’s even a database of vulnerable citizens, because of risk of people with dementia going missing.

Brand ambassador” is a marketing term for a person employed by an organisation or company to promote its products or services within the activity known as branding. The brand ambassador is meant to embody the corporate identity in appearance, demeanor, values and ethics. The key element of brand ambassadors lies in their ability to use promotional strategies that will strengthen the customer-product/service relationship and influence a large audience to buy and consume more. Predominantly, a brand ambassador is known as a positive spokesperson appointed as an internal or external agent to boost product/service sales and create brand awareness.

The brand being solved varies according with the distinctive brand values of the thing being communicated.

It was “York’s Dementia Without Walls initiative” from the Joseph Rowntree Foundation that first got PC Andrews – based at the city’s train station for the British transport police – thinking about the condition of dementia. This alliance challenges the social isolation of people with dementia by encouraging businesses to reshape services with their needs and views in mind. Andrews arranged for people with dementia and their carers to review the station’s signage and facilities. And she organised day trips with free travel from the train companies, in a bid to boost their confidence.

Also, “Dementia Friends” is an Alzheimer’s Society initiative about giving more people an understanding of dementia and the small things that could make a difference to people living in their community. By 2015, the organisers want there to be a million people with the know-how to help people with dementia feel understood and included in their community. The initiative was fully launch in mid-February 2013 after the initial announcement in November 2012. “Dementia Friends Champions” are volunteers who talk to people about being a Dementia Friend in their communities after attending a training course and receiving ongoing support.

What is and what isn’t a “Dementia Friend” is discussed on this website page. As such it can be argued that they’re not “brand ambassadors” for the Alzheimer’s Society, but brand ambassadors for the ‘Dementia Friends’ programme. These are characteristics of ‘brand ambassadors’, and it’s interesting to note how much in common they share qualities with those who’ve completed the ‘Dementia Champion’ training. For example, it’s helpful if you’re a bit technically savvy. If you’ve successfully completed a Champions’ training course, you will be given a code that will give you access to resources and tools that will help you set up and run a Dementia Friends’ information session. You can also sign up to their e-newsletter, which will have information and ideas tailored to people who have successfully completed Champions’ training courses. Generally, it’s also useful if brand ambassadors are “passionate in using the social media tools in campaigning for [the] brand”.

The Alzheimer’s Society have protected their visual mark for “Dementia Friends” on the trademark register for the IPO, as trademark UK00002640312. If you’ve done the Dementia Champions training, you can’t really change it a bit such that you retain the ability to call your programme ‘Dementia Friends’. Aside from the fact ‘Dementia Friends’ is one manifestation of dementia-friendly communities in this jurisdiction, through the use of the ‘Dementia Champions’, this policy in this form has taken on a rather territorial nature. It’s though worth noting that the ‘Dementia Champion’ is  not, according to this webpage, an Alzheimer’s Society volunteer (although some Dementia Friends Champions may choose to become one or be one already), nor an Alzheimer’s Society contractor/representative.

Nobody is of course ‘blaming’ these ambassadors (leaders and team players) for promoting their organisations in their own particular way. Nor can they be faulted for promoting dementia awareness, a truly admirable mission. But the question is whether the concept of ‘dementia friendly communities’ has to be so territorial to make it operationally manageable, or whether the philosophy to be embraced is actually one of a wider social network.

A Massive Open Online Course (MOOC) is an online course aimed at unlimited participation and open access via the web. In addition to traditional course materials such as videos, readings, and problem sets, MOOCs provide interactive user fora that help build a community for students, professors, and teaching assistants (TAs). MOOCs are a recent development in distance education.

The University of Tasmania’s first Massive Open Online Course (MOOC), Understanding Dementia, is a 9-week online course that builds upon the latest in international research on dementia. It’s free and anyone can register. The curriculum draws upon the expertise of neuroscientists, clinicians and dementia care professionals in the Wicking Dementia Research and Education Centre.

Kate Swaffer remarks:

“As my blog becomes more exposed, so do I! The wonders of the internet, and having global networks and new friends never ceases to amaze me, a farm kid who spent the earliest part of her life without electricity or running water. I’ve become slightly involved with some delightful researchers from Tasmania, and at their request, I am very happy to give their new course a plug here.”

But even MOOCs are not without their critics.

John Hennessy, the computer scientist who heads the Californian university, said such courses were too large to engage and motivate most students successfully. Only 4-5 per cent of the people who sign up for a course at Coursera, another MOOC pioneer to spin out of Stanford, get to the end. MOOC benefits include the fact they can be done in any language or multiple languages, using any online tools, escape time zones and physical boundaries, make it easier to lower barriers to student entry, and enhance personal learning environment. However, MOOC critics argue that the MOOCs tend to be equally territorial.

Of course, the wonderful outcome is that dementia is being promoted, in a way never known before in England. And there’s no harm in promoting individual charities, provided that all initiatives are ultimately collaborating to the same purpose, especially if these charities can generate funds for attracting world leaders in wellbeing as well as research. The actual definition of ‘community’ is though an interesting one, if you consider that the whole world is a community of sorts. However, it might be a focus of further work what sets different dementia-friendly communities, and what might be the best ways for participants, for example through MOOCs or ‘brand ambassadors’, to set themselves apart too.

1 Response

  1. Kate Swaffer February 8, 2014 / 9:52 pm

    Very thoughtful blog post Shibley… as a person living with dementia, I find the most frustrating thing about branding is that it serves the organisations, rather than the consumers, the very people they say they ‘seek to serve’. Corporate (and individual) ego gets in the way of common sense, and the notion of us all working together for the same cause. Thanks for your valuable insights, as always.

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