Purple Angels

“Drop in centres”. Definitely “one to watch” in the new English dementia strategy.

Shibley Rahman 1 Comment

Access to any sort of dementia service has become the focus of scrutiny in the English dementia strategy.

For example, NHS Bristol and Bristol City Council Health and Social Care have produced a strategy document entitled ‘Living well with dementia in Bristol’ to run 2011-2015. They helpfully provide the following table on page 32.

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There is considerable interest in how much ‘support’ can be provided by the NHS and social care providers, and how much can be provided by charities and other voluntary entities.

A major faultline in policy is how the third sector can lower the barriers to entry for ‘other providers’ for dementia awareness, other than the usual suspects. There is a growing momentum that any awareness is to be welcomed, wherever it comes from, but ultimately this awareness should not be for knowledge for its own sake, but should be an application to encourage inclusivity.

And all services can be a bit rushed, especially any services, medical or legal, where the end point of funding is activity-based. But conversely what people with dementia and those closest to them, whether in an official caring rôle or otherwise, invariably mention is the need for time and patience.

“Drop-in centres” have attracted much interest of late.

They offer emotional support, companionship and practical advice to people, including individuals with dementia who wish to live well independently in the community.

They’re generally run by voluntary organisations, local councils and day centres. Drop-in centre sessions usually run for a few hours at a time, one or more times a week.

The volunteers at drop-in centres are generally there to listen and provide support to those who come along, as well as to encourage people to make friends and take part in activities that interest them. Activities are especially promoted in the NICE Quality Standard 30, a strategy document which has as its aim supporting people to live well with dementia. Activities can include things like games and quizzes, arts and crafts, exercise and relaxation classes. There might also be TV, computer and internet facilities. Some drop-in centres offer educational and life-skills workshops, on topics such as developing confidence.

Individuals who use drop-in centres often have opportunities to help make decisions about how the centre is run even, and decision-making, choice and control have become key planks of dementia whichever political party is in office.

The overall aim is to provide a friendly, relaxed and unthreatening atmosphere.

Drop-in centres support people with a very wide range of needs, including older people, young people, people with learning disabilities, deaf or blind people, refugees and asylum seekers, or People facing specific health conditions such as cancer

Many drop-in centres are also open to carers, which may include families and friends of people who have these kinds of support needs. Many people in some sort of ‘caring rôle’ do not consider themselves ‘carers’, numerous successive studies find.

Drinks and snacks are often available at drop-in centres and some also offer hot meals. Some centres can help arrange transport for people who find public transport difficult to use.

And ‘drop in’ approaches might be particularly positive for people living with dementia. Often people living with dementia find the diagnosis stigmatising, but invariably people living with dementia on receiving a diagnosis still wish to live life to the full.

There are lots of services available for people living in the community who would like companionship or support during the daytime. Day centres open for longer hours than drop-in centres and offer support to older people and adults with disabilities or mental health problems. There are lunch clubs for older people too. If you feel lonely or cut off from others in the community, or can’t leave your home very often, then you might like to benefit from “companion and befriender services” arranged through the drop-in mechanism.

‘Drop in centres’ have developed a momentum of their own in England. For example, Age UK Shropshire Telford & Wrekin have opened five Diamond Drop In Centres to support local people with dementia and memory difficulties, their families, carers and friends. Previously it was reported that carers in Faversham have access to a drop in centre in their own locality. This Kingsfield team had created the drop-in service to offer support and information for both their residents’ relatives and people in the local community who are caring for someone with dementia.

Norman McNamara, Founder of Purple Angels, announced this morning that there might be plans to launch a drop in centre in Exeter. Norman admitted to being ‘quite tearful’ at having organised a previous ‘Day Lewis – Purple Angel’ drop in centre, particularly of the busy nature of the location. But it is well known that Norman McNamara has achieved an enormous amount through a remarkable amount of personal determination, as he lives with a type of dementia called diffuse Lewy Body type. This all is a noteworthy development of a campaign which ‘thinks global acts local’. Their ‘global’ website is here.

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Now it turns out that “Barchester” is in full support of the Purple Angel campaign. Norman had started this campaign in Torbay – an area with a solid reputation as a retirement destination. He began by generating awareness about dementia with local businesses and soon his iconic Purple Angel stickers started appearing in shop windows around the district to show solidarity and understanding of living with dementia

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Many hope that ‘drop in centres’ will feature in the new English dementia strategy 2014-9.

Through raising awareness of dementia, we must ensure befriending doesn’t become belittling

Shibley Rahman 6 Comments

Dementia Awareness Week 2014 is this year Sun 18th May – Sat 24th May 2014.

Some ‘symbols’, such as the ‘Purple Angels’, clearly offer much reassurance.

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I am genuinely interested in what ‘dementia awareness’ is.

Raising awareness can mean different things to different people.

It’s easy for me to overestimate what dementia awareness might be, as I have done my undergraduate finals, my Ph.D and my postdoc in brain conditions, and mainly dementia.

I’ve never seen a Dementia Friends script.

I’m mildly worried about whether the information in this script is accurate, but not any more than any other information from any other awareness publications.

Having worked in two head offices of large medical charities, I am more than aware of the crap that is used for fundraising.

But I do worry in case what you’re promoting is simply a source of income, and dwarfs entirely what the message is.

The message here is raising awareness of all things dementia.

We have to be very careful that befriending initiatives do not inadvertently end up belittling the whole issue of dementia.

I don’t particularly mind if people wish to purchase ‘Friends for Dementia’ air fresheners (spoof).

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I don’t particularly mind if people wish to purchase ‘Friends for Dementia’ furry care dice (sic) (spoof), either.

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Some thought inevitably has to go into ‘raising awareness of what’?

Chris Roberts, a supporter of the ‘Dementia Friends’ programme, suggested,

“To educate people, so they can spot symptoms early, help others in the community and help carers cope better, to show people in early stages are not to be written off, it’s all about education.”

This is of course a laudable aim.

But spotting symptoms of dementia in yourself may not be as easy as spotting a breast lump or a testicular lump (which admittedly can be difficult to spot).

Some people living with dementia are unaware of their symptoms, a phenomenon known to clinicians as ‘anosognosia’.

Raising awareness of the practical difficulties that Admiral Nurses have had in being commissioned?

And the stories keep on coming of potential or actual actioned cuts of dementia services in the real world: such as this one in Devon, and one in Essex.

I asked Kim Pennock, a prominent dementia campaigner in England, whether campaigners for dementia were concerned about cuts in social care.

“- many are now shouting loudly as the cuts are ridiculous and will put vulnerable people at risk”

Meanwhile, the Alzheimer’s Society have introduced a scheme for accreditating ‘dementia friendliness’.

The process is designed to enable communities to be publicly recognised for working towards becoming dementia-friendly and to show that they are following common criteria that are based on “what we know is important to people affected by dementia and will truly change their experience.”

It would be odd if the Alzheimer’s Society would be the sole arbiter of dementia friendliness.

I find this particularly perplexing as the Joseph Rowntree Foundation have done wonderful work on dementia friendly cities such as York.

Also I really cannot praise enough the work by ‘Innovations in dementia‘.

Innovations in Dementia has in the past been working through the Ageing Well programme with two areas, Hampshire and Sheffield, to support their work to create dementia friendly communities.

As part of the work in Hampshire, they have produced a dementia friendly communities toolkit, which was designed to support work at a local level.

The tools have even been used by the Alzheimer’s Society locally.

But the Alzheimer’s Society has a massive business advantage nationally.

Its ‘Dementia Friends’ programme has massive funding.

The Alzheimer’s Society also has capable resources for its marketing.

The Alzheimer’s Society has just appointed Lida to creating a series of campaigns that aim to increase the acquisition of new supporters and grow its mass participation events.

But accreditation can be good for ‘competitive advantage’.

The UK division of Hilton Worldwide has become the first hotel company to be awarded the Carbon Trust Standard after measuring and reducing its carbon footprint.

The award requires organisations to measure, manage and reduce their carbon footprint and make reductions vear-on-year.

Hilton believes the accreditation will give it a competitive advantage over rivals when the government’s Carbon Reduction Commitment league table begins next year.

There’s no doubt in my mind that dementia ‘friendliness’, however delivered, is a wonderful societal aim.

But it should not be a cover for cuts in social care or in the NHS.

And also it’s widely established that ‘Dementia Friends’ cannot be used in place of training for those who need more than basics.

I, too, will be doing my bit too though for raising awareness too.

I’ll be doing a ‘Meet the author’ slot at the London Alzheimer’s Show.

Please follow the Show on Twitter (@AlzheimersShow).

I think also it’ll be possible to see my book, a book which is very ‘un-medical’ in its approach. It’s all about celebrating the individuality of a person, what he or she can do, and how the environment is so important for quality of life.

It’s a different way of doing things.

But that’s also raising awareness.

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.