People with dementia should not be the audience, but the main actors

I must admit that I always feel like throwing something at my computer screen when I see a steering group for people with dementia run by people without dementia but with big financial grants.

For some reason, I used to conceptualise the way some people had approached ‘dementia friendly communities’ like a zoo. Event organisers serially wheeled out a star ‘person with dementia’ like a spectacle, akin to the ‘push me pull you’ of Rex Harrison.

The boot is on the other foot now.

It’s like this.


The thing is communities which are ‘dementia friendly’ should in fact be suitable for all. This means inclusive to all. This means accessible to all.

A major problem with the term ‘dementia friendly’ is that it implies that you can identify immediately  person with dementia by the way he or she is behaving in the community. No person with dementia has a sticky adhesive label on his or his forehead saying ‘I have dementia’.

Dementia is an invisible disability. It’s a disability where we can identify the exact problem, say problems with hearing in a noisy room, or problems with memory, or problems reading. Like all disabilities, it requires a sensible approach such as identifying if the problem causes an impairment and subsequent handicap.


I’ve seen this referred to as ‘cognitive ramps’ – but any level of analogy might be suitable such as ‘cognitive wheelchairs’. The basic point is that you’d expect employers to build wheelchair ramps (or simple) for young employees with a physical disability to allow them to get into the building to do their work in the first place; such an attitude is needed for people with young onset dementia too (this is dementia below the age of 65).

The other big way in which the term ‘dementia friendly communities’ is wrong is that it implies a very static process, which ironically is not how the UK accreditation scheme works at all. The UK standards (really specifications) necessitate sustainability, i.e. that the community will be friendly in the future, and is always ‘learning to be friendly’.

This gets to the heart of a tension which exists in policy. That you often hear from many diverse people with dementia that they’re living for the present, and yet there’s one dimension of policy that aspires for a better world for tomorrow – whether this is in the form of dementia friendly communities, or better treatments for the future (disease modifiers or symptomatic treatments).

The policy which crystallises the imperative for the world to build ‘dementia friendly communities’ for the future actually comes under the WHO sustainable development goals. They’re pictured here.

Sustainable Development Goals_E_Final sizes


It’s clear that people living with dementia need access to the UN Convention on Rights of People with Disabilities (UNCRPD), as all the preamble and articles of that convention apply directly to people with dementia.

Both these instruments are very closely linked to the implementation of a rights-based approach for dementia. Human rights lie at the core of this phase of supporting people with dementia to live in the community after their diagnosis. Even if the UK takes the step of repealing its existing human rights legislation, implementing the European Convention on Human Rights, the global policy tools remain.

The question is of course how people with dementia can best advocate for them. The safest way to make this manageable is to make sure human rights remains in the international conversation, as demonstrated, for example, by Marc Wortmann in the PAHO Plan of Action summit in Washington.

Human rights became serious business when mentioned by Kate Swaffer, Chair of Dementia Alliance International, at the WHO Summit in Geneva last year.

But we do also need local leads which integrate dementia and disability policy drivers together. This, for example, might be facilitated by organisations such as Alzheimer’s Europe participating in the work of the European Disability Forum to make sure that the achievable ‘UN sustainable goals’ and UNCRPD are indeed implemented as ratified.  Yesterday, the EPSCO Council adopting the Luxembourg EU Presidency conclusions most helpfully took Europe down the route of rights-based advocacy, as faithfully reported by Alzheimer Europe.

But I feel that we shouldn’t lose sight of the main issue: people with dementia are no longer in the audience. They’re the main actors.

Dementia Inclusive Communities. Are we there yet?

“Today’s local communities are strongest when they enable all, diverse citizens to participate socially, economically and politically. These inclusive communities have better health, improved economic development, stronger political institutions and more effective public services. One in 5 of us is living with a health condition or disability. Economic recovery and social well-being cannot happen without inclusion.”

Hold on a second, this sounds like ‘dementia friendly communities’ doesn’t it?  It’s actually the beginning of the description of ‘inclusive communities‘ on the Disability Rights UK webpage.


The most parsimonious explanation for the word ‘friendly’ in “dementia friendly communities” is that dementia friendly communities accommodate the idea of ‘friends’ – people who are sympathetic to what dementia is (or what the dementias are), and have a basic understanding enough to encourage more inclusion.


It is, of course, possible to have leaders without followers, as such. In that sense, can you have ‘dementia friendly communities’ without friends? In a way, the discussion is somewhat academic, in that the UK through various converging means has achieved an ‘ambition’ of one million friends by the intended time (March 2015). It, in a sense, depends on whether you define ‘friends’ in UK as people who’ve done the ‘Dementia Friends’ programme in some form; or whether they are sympathetic to the aims of the programme, raising awareness of dementia and turning communication into action, through some other way.


Why do we need a million people, or more, to be “friendly”? As Helga Rohra remarks, “why don’t we treat everyone with respect?” Respect, as Kate Swaffer observes, should mean “real respect” about seeing the person living with dementia, not simply the symptoms. But taking it literally – one supposes that “dementia friendly communities” are communities, howeverso defined as a street, an entire village or whole city, which has achieved ‘dementia friendliness’, such as dementia-friendly buses, dementia-friendly buses, or dementia-friendly banks.


And, in this transactional society as a whole, “dementia friendly communities” can be postulated to have a number of beneficiaries, the recipients of friendliness, the people being friendly, and possibly the people promoting the idea (including charities). I published my blogpost “It’s time we talked about ‘dementia friendly communities'” in March 2014, and I don’t think my views have fundamentally changed since then. At the time, indeed, I referred to ‘inclusive communities’.


The problem is: I can still be friendly to you even if I strongly dislike you. More’s the point, I can be friendly without being inclusive. ‘Inclusive’ better reflects intergenerational aspects of the dialogue about living with dementia, and the issue that people living with dementia have different living well, timely diagnosis and service provision needs. It also reflects that people living with dementia are often living with a plethora of medical issues, e.g. arthritis, which might also limit their involvement with the community e.g. taking a bus.


It’s possible to have friendliness even in face of outright division and opposition. And it is possible to take friendliness to an extreme, encouraging a sense of victimhood within a person who happens to have received a diagnosis of dementia.


Helga Rohra, a leading campaigner living with lewy Body dementia, in her plenary for the ADI conference last week, remarked to a small ripple of spontaneous applause, “I do not want to be a victim of dementia, but I want to be a victor of dementia.”


My thoughts on this converged after the recent Alzheimer’s Disease International (ADI) conference last week, where I asked Chris Roberts’ daughter whether she felt the word describing a community’s attitude towards Chris, should be “friendly”. She paused, and said, “No”. And this matters hugely – as when a person is diagnosed with dementia, invariably the diagnosis affects the friends and that family of that person. That person is at that point at risk of social isolation, which any policy of ‘friendliness’ must mitigate against as one of its key aims.


I asked Chris. Chris too said “no”. I then asked Chris what might be a better word, and he suggested “inclusive”. I further asked Kate Swaffer, and she said “accessible”.


And “inclusive” and “accessible” are certainly constructs which go together happily, for example in the field of urban design of built environments, or ease of shopping or use of transport. Chris Roberts, Helga Rohra and Kate Swaffer had both referred to their lived experience post diagnosis of dementia last week. They all independently described their wish to be included in every conversation.


Dr Jess Baker included the term ‘inclusive dementia-friendly communities’, raising the possibility that dementia friendly communities could theoretically be non-inclusive.

Both inclusivity and accessibility both promote a sense of identity of the person accepted by the immediate world around him or her, and promote autonomy and dignity. People who have received the diagnosis of dementia are still the same persons they were before their diagnoses. ‘Alice’ is ‘Still Alice’ for example. Younger people who’ve received a diagnosis need to be kept fully integrated in society, including employment if so desired, shifting the debate from “cost” and “burden” to “value”; with coherent pathways of care and/or support.


Are we in a better place than previous to where we were before the 2012 UK Prime Minister’s Dementia Challenge, as regards the ‘consumer experience’ of those living with dementia? I think the answer is almost certainly yes, though one would have to ask the various consumer groups around the world. We need to keep momentum up, and make sure that we do not retreat from the massive progress which has been made.


I feel now there has been a critical momentum building up, and now is the right time to crystallise “dementia friendly communities” as “dementia inclusive communities”.


Dementia Alliance International provides “a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life”. Kate Swaffer, Co-Chair of the Dementia Alliance International, a large international group of people living with dementia, working now closely with Alzheimer’s Disease International to give people with dementia an enhanced platform, further emphasised the need for rehabilitation for people living with dementia. Such a perspective necessitates viewing dementia as a ‘disAbility’ (dementia fulfills the definition of disability in international law); the counterfactual therefore needs to be enabling of people with dementia through the dementia inclusive community.


The current legal frameworks in England for equality (2010) and human rights (2010), both internationally and nationally, pre-existed the UK Prime Minister’s Dementia Challenge (2012) by only a few years. The ‘genie is out of the bottle’, I feel, making it very difficult to backtrack on this seismic shift in policy. As Glenn Rees, now Chair of the ADI says, policy is strongest which evidence is blended with the actual views and commitment of consumers.


Possibly dementia is now reaching a place where sex equality and disability were, but I feel the term ‘dementia friendly community’ is rather anaemic in the absence of a legal underpinning.


But how will know whether ‘dementia inclusive communities’ are getting anywhere? We will see more signs of inclusivity and accessibility, say in banks, transport or the built environment. Less easy to define is when societal attitudes have changed. Standards such as the recent British kitemark for dementia friendly communities help to deter people who can say ‘job done’ with a ‘dementia friendly’ sticker.


Although a right to offend is legally possible, anti-segregation has been quite possible to legislate upon. Changes in South African law made Apartheid impossible, whatever the current opinions of people living today. At worst, I’ve heard a handful of people living with dementia describing their experience of society’s attitude towards them as ‘social apartheid’, and this separation is easier to maintain with demonising terms in reference to dementia.


That’s why we do need media guidelines for the general media, in talking about dementia. That’s why we do need to recognise the diversity of all people living with dementia in public. And we do need to see them included at the very highest levels of policy even, not simply in a tokenistic way.


As Kate Swaffer said last week at the ADI Conference, “It’s going to take a lot of courage for us to work together.” Indeed, Kate at the 2015 ADI conference advised a few key steps in establishing dementia inclusive commitments, such as raising education, promoting volunteering, advancement of dementia advisory groups and local dementia action alliances, and meaningful engagement of people living with dementia; and for this all to happen from the very first step.


All this, of course, is not to poo-poo the massive achievements that have been achieved so far, not least in the progress of the Dementia Alliance International’, but we are – regrettably – ‘not there yet’.