If no two people are the same, how can we build ‘dementia friendly communities’?

Even identical twins act differently.

This is because they are shaped by the environment in unique ways, even if they have exactly genetic sequence as the blueprint which designed them.

It therefore cannot be any surprise that no two individuals in society are in the same, as you can easily witness with the range of opinions on your timeline on Twitter.

A person with a dementia might be very different to another person with a dementia.

There are a hundred different causes of dementia, tending to affect people in different age groups in distinct ways at different rates? Let’s pick one type of dementia, the most common cause, Alzheimer’s disease.

A 83 year-old with Alzheimer’s disease might have a number of different problems, for example memory – or even with problems in planning, aspects of language, or behaviour.

And of course it’s pretty likely that 83 year-old might be living with another different condition too, such as heart disease.

Your perception of that 83 year-old might vary from your next-door neighbour, according to, perhaps, your own personal experiences of dementia, good, bad or neither.

So, in raising awareness over the uniqueness of individuals through “Dementia Friends” or “Dementia Champions”, there’s an inherent contradiction.

How do we build ‘dementia friendly communities’, given one’s desire to embrace diversity?

I have for some time explained elsewhere why I think the term is a misnomer. I don’t see the point of “asthma friendly communities” or “chronic demyelinating polyneuropathy communities”, worthy though they are.

I think when you pick off any of the ‘protected characteristics’ in the Equality Act, such as ‘disability’, ‘sexual orientation’ or ‘age’, you have to be careful about not inadvertently  homogenising groups of people, worthy though the cause of ensuring that they do not suffer any unfair detriment is.

It could be that people in the early stages of Alzheimer’s disease, due to how the condition tends to affect the brain, could have particularly problems with spatial memory or navigation. Therefore, it would be desirable perhaps to have places with clear landmarks such that such individuals can navigate themselves around.

But take this situation to an extreme. Would society feel comfortable with people with dementia having their own cafés?

The story of Rosa Parks is well known.

After working all day, Parks boarded the Cleveland Avenue bus around 6 p.m., Thursday, December 1, 1955, in downtown Montgomery. She paid her fare and sat in an empty seat in the first row of back seats reserved for blacks in the “coloured” section.

The bus driver moved the “coloured” section sign behind Parks and demanded that four black people give up their seats in the middle section so that the white passengers could sit.

Rosa did not move.

A legitimate learning objective of ‘dementia awareness’ sessions is to think about what a person with dementia might or might not be able to do.

But if we then meet this learning objective, that people with dementia are all unique, we should steer away from stereotypes that people with dementia act ‘a certain way’.

This, I personally believe, is a big failing of this ‘dementia friendly communities awareness video’.

How Can We Include People With Dementia in Our Community? from NEIL Programme on Vimeo.

4 Responses

  1. stevemilton1 May 12, 2014 / 6:12 pm

    Oh Shibley – how can you not love that video?

    It’s one of the best I’ve seen IMO.

    But yes……Stereotypes are a big problem – Peter Ashley is always banging on (and rightly so) that dementia is not just about memory problems.

    The best kind of awareness-raising and training goes to lengths to bang home the message that there are some 700,000 different manifestations and experiences of dementia.

    Insofar as accessible communities go (more about that below) – the best we can do is to think about the changes that are likely to be of the most benefit to the most people.

    With wheelchair users it was easier – they are (mostly) a standard size and so the physical access requirements could be laid out in a relatively straightforward fashion. They don’t suit everyone – but are probably the best for the most.

    So – the use of PLAIN ENGLISH and clear design in written information – avoiding too many reflective surfaces or ambiguous or non existent signeage – providing seating all three examples of changes that would have a massive impact on everyone, but especially people with dementia.

    Basically – the MORE people with dementia that get involved and allowed a place at the table – the WIDER our insight into the range of problems that people experience – and the better our solutions will be. Thats ONE reason why engaging with people is so important – and why relying on a few high-profile highly articulate people with dementia is dangerous.

    This is not to diminish the massive role that highly articulate highly visible people can have as catalysts and leaders – the extent to which they can truly speak to the experience of the rest is another question.

    Last week at the DAA meeting I was on my hind legs talking about the need to involve people with dementia in conversations about dementia friendly communities.

    In my closing statements I pointed out the need for a change of language to reflect the fact that this should a rights issue, not a matter of beneficence or largess on the part of those of us without dementia.

    When we did our early work on what we were then referring to as “dementia capable communities” in 2011 – one thing struck us very strongly – when asked what was stopping them from getting out more in their communities, every person with dementia cited their dementia.

    Imagine if we had asked a similar question 25 years ago to a group of people with physical disabilities – do you think we would have had the same response?

    25 years ago in Oxford street wheelchair users were chaining themselves to buses in protest at lack of access to public transport. This was one of the first highly public displays of resistance against an environment that placed barriers in the way of equal access to basic human needs.

    People with dementia are now where many people with physical, sensory and learning disabilities were 25 years ago……..in that some are beginning to wonder if dementia might not better be viewed as a disability issue.

    …….in which of course one recognises the impact that dementia can have on the individual but also recognised the many barriers which are placed in the way – thus further disabling the individual and denying their rights.

    …..because of course people with dementia do have rights, not least under the equality act, under which many people with dementia will qualify as “disabled”, and thus be protected against unreasonable discrimination.

    My father stopped going swimming – not because he couldn’t get up the stairs to the pool – but because he could’t understand the information about opening times published by the council.

    Which is why I made what may have been a rather rash commitment to use the word “accessible” when referring to communities in which people with dementia have the best possible chance of living well.

    “friendly” is the language of largesse and charity – “accessibility” is the language of rights and one which I hope we will hear more and more as people with dementia begin to demand a say in the decisions that affect their lives.

  2. Shibley Rahman May 12, 2014 / 7:59 pm

    haha steve – really helpful indeed.

    i wonder though what you on your hind legs looks like?

  3. stevemilton1 May 12, 2014 / 9:15 pm

    Hopefully a little more comfortable than Milliband looks trying to talk to humans in a hospital in Hull on the BBC news right now – I do like the bar to be kept low.

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