Dementia champions

Let’s have a honest debate about whether off-the-shelf packages ‘bestow’ personhood

Shibley Rahman 3 Comments

We are continually being reminded that ‘money does not grown on trees’. Funds are said to be ‘unsustainable’. You’ve heard it all before.

And yet there is potentially a scanty evidence base for certain initiatives in the NHS, where every penny does count. For every contract awarded, there’s an equal and opposite contract which has not been awarded. Recent problems in health policy to do with the English NHS shows a genuine problem with trust, whether it’s implementation of the Health and Social Care Act (2012) or “Care Data”.

As entities get bigger, their presentation tends to get slicker. With economies of scale, things can be done more ‘efficiently’. The overwhelming danger is that everything becomes alarmingly centralised, actually deprofessionalising and lowering standards of what is being delivered. It can become all too easy to run courses, get the facilitator to run the DVD and read a pre-prepared script, and, even if the end-user doesn’t pay for it, the taxpayer does.

But the culture in the NHS is not right. People are scared to ‘speak out safely’ against practices which they do not agree with, even if the reasons are perfectly sound. The pattern of behaviour at people who have criticised, with good intentions, in healthcare has tended to follow a similar pattern: ignore – discredit – attack – ignore – ostracise. But increasingly as the same grant winners tend to get more grants, as they built up a dominant presence and brand loyalty, they are in a position to flex litiginous muscles.

It all has an “Emperor’s New Clothes” feel about it. “The Emperor’s New Clothes” is a famous short story by Hans Christian Andersen about two weavers who promise an Emperor a new suit of clothes that is invisible to those unfit for their positions, stupid, or incompetent. When the Emperor parades before his subjects in his new clothes, a child cries out, “But he isn’t wearing anything at all!” And that’s the position we’ve reached with various prestigious brand leaders.

And yet it is fundamentally an anethema to the whole basis of personhood as conceptualised by Tom Kitwood. There is an increasing army of people who are quite horrified, like me, how personhood has become transformed into marketing shills and glossies in a standardised package corporate-feeling sort-of-way.

There’s certainly concern about how dementia training and person-centred approaches have become commercialised, in a way that would have made the late great Tom Kitwood shudder.

Kitwood’s approach was more conceptually and theoretically developed, and highlights the importance of the person with dementia rather than the disease process itself. Kitwood argues that people with dementia do not lose their personhood, but rather can be maintained through relationships with other people.

Thus, Kitwood defines personhood as ‘a standing or a status that is bestowed on one human being, by another in the context of relationship and social being’. Within person-centred care therefore, the personal and social identity of a person with dementia arises out of what is said and done with them.

In other words, it IS highly personal and individual.

Anyone who has worked in the NHS knows likewise that one junior doctor covering all the medical wards in a hospital and acute admissions is bound to be rushed off his or her feet. Any emergency room nurse facing the common situation of being ten patients behind will know exactly how stressful the job is, propelled by ‘efficiency savings’ the NHS “MUST” make to resolve the “funding gap”.

A concerning strand has emerged therefore of marketising and selling compassion. This is a very strange concept as it implies that compassion in some way can be “imposed”.

In October 2013, it was mooted that  unregistered care support workers wouldsoon have to obtain a “care certificate” to show they have completed basic training before they are allowed to work unsupervised, the government has announced.

Health minister Earl Howe has revealed that Health Education England would lead work on developing a certificate of fundamental care, as recommended by Camilla Cavendish in her review of regulation and training in the sector earlier this year.

He said it was too early to know what the care certificate would look like, but said it would build on the national minimum training standards published by Skills for Care and Skills for Health in March, as Cavendish recommended.

This policy plank is incredibly difficult, for fear that the implication is that certain care staff are deliberately ‘withholding’ compassion. But it is patently more of a problem that junior care and nursing staff are in certain cultures finding it very difficult to speak out against unsafe levels of staffing cuts (a common strand in the dangerous ‘Keogh trusts’.)

The way some commissioners are tending to behave is fair-and-square a ‘tick box’ culture. What are we doing today?

“C” for compassion

And “D” for dementia friendly communities.

A Dementia Friends Champion is a volunteer who encourages others to make a positive difference to people living with dementia in their community. They do this by giving them information about the personal impact of dementia, and what they can do to help.

It is not supposed to be specialist in training for dementia.

But it can be argued that the whole set-up of Dementia Friends and Dementia Champions gives their organisers an advantage. It must have a business model somewhere, and presumably the Alzheimer’s Society is working with the current Government to deliver this initiative? Virtually every newspaper article about dementia these days mentions ‘Dementia Friends’. Parliamentarians mention it. And yet there is no mention of other dementia societies, such as Alzheimer’s BRACE or Dementia UK. For every penny in one direction, a penny is lost in another direction.

A strange phenomenon is that you don’t need to have any particular experience or skillset to be a Dementia Friends Champion.

This level of standardised packaging of ‘a training’  therefore has two inherent problems. Firstly, it denies the whole ethos of Kitwood’s bestowment of personhood. Secondly, it lends itself too easily to a ‘tick box’ culture from commissioners who can say ‘they’ve done dementia’ in a race to the bottom. And people who’ve done the Dementia Friends often report a dubious relationship about whether it is or it is not the Alzheimer’s Society, parking aside the statement that “Dementia Friends is an Alzheimer’s Society” initiative at the bottom of the ‘Dementia Friends’ website.

If a charity is being supported by Government in delivering the Dementia Challenge, this should be made much much clearer. This is because the charity ‘market’ is itself being distorted. And furthermore with access to the media commercial endorsements can deprive others of media attention, while ‘picking winners’.

The Alzheimer’s Society website reports:

“Our high streets are set to become more dementia friendly following a commitment from major British businesses today (Friday 28 February).

Our high streets are set to become more dementia friendly following a commitment from major British businesses today (Friday 28 February). Argos, Homebase, Marks and Spencer, Lloyds Pharmacy and Lloyds Banking Group, backed by Health Secretary Jeremy Hunt, have committed to create over 190,000 Dementia Friends in shops and banks across the UK.”

Certainly the staff at the Alzheimer’s Society are brilliant, and totally devoted to the cause.

This was Ian McCreath today.

and this emphasising that ‘Dementia Friends’ like the NHS is ‘free at the point of use':

Apparently the intention is that “Dementia Friends” is not ‘training’ as such:

But there is unfortunately a perception of “training” from two separate sources:

and they weren’t the only ones:-

but this is also true it turns out in terms of where the money is actually coming from:

Funding of dementia friends
so the money must be going somewhere.

Dementia is clearly a ‘good market’, and so is ‘compassion’ despite inability of some people in being to define it properly.

Nobody is denying the rôle for both to be prominent planks in English dementia policy, but the public needs to have trust that these are all effective use of taxpayers’ money. People who’ve done thousands of home visits, albeit as unregistered dementia care workers, including carers and other careworkers, or even people living with dementia, will have qualms about people without any specialist training themselves of dementia raising dementia awareness.

We do need an honest debate about how effective these initiatives are, especially in relation to the ‘getting most of your buck’ idea. The system is open to abuse, with powerful people getting more powerful, as a result of who you can get to deliver  your package fast and at the most competitive price.

But there’s scope to be positive.

But this has been an all too predictable consequence of a particular approach which has been festering in England here for many years now.

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

Shibley Rahman 1 Comment

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.