Inclusive Communities

/ June 6, 2018

I’ve been researching inclusion, accessibility and friendly, along with a number of terms regularly used within the dementia sector. One of the reasons is because of the ‘lightbulb’ moment I had last week, during an email discussion with people from a number of countries, where they no longer use the word dementia. In fact, they have replaced it completely.

On a website called Keys to Inclusion,  it states the following:

“Inclusion at its simplest is ‘the state of being included’ but it is a bit more complicated than that… It is used by disability rights activists to promote the idea that all people should be freely and openly accommodated without restrictions or limitations of any kind.

It is described by some as the practice of ensuring that people feel they belong, are engaged, and connected. It is a universal human right whose aim is to embrace all people, irrespective of race, gender, disability or other attribute which can be perceived as different. Miller and Katz (2002) defined inclusion as: “.. a sense of belonging: feeling respected, valued for who you are;  feeling a level of supportive energy and commitment from others so that you can do your best.” It is about valuing all individuals, giving equal access and opportunity to all and removing discrimination and other barriers to involvement.”

So what does this have to do with an Inclusive Community?

It became apparent during my epiphany on this topic that we need to move from using the terms dementia friendly communities and dementia friends, simply because the word dementia has being replaced completely in some countries or regions, and this is being considered in other countries as well.

Ironically, when we set up Dementia Alliance International, we specifically used the word dementia in the name, to try to break down the stigma, but we didn’t think about the fact that as the eight founding members, we were all white Anglo Saxons, living in developed counties, who had been educated enough to not take offense to the literal meaning of the word. What we took offense to was being excluded, the lack of adequate health care, and the stigma and discrimination. The synonyms for dementia on Dictionary.com include the terms mental illness, madness, insanity, lunacy and derangement. We know these are not true, and are offensive, and my hope is that one day, they will be listed as Offensive, rather than as synonyms.

Anyway, I seem to have digressed!

I’ve written and talked a lot over many years about the Dementia Friendly Communities (DFC) and Dementia Friends (DF) initiatives that have been developing around the world, and for many years, have believed the terms are not helpful. The main reason for this is using the word ‘dementia’ forces people to be public about a condition they may not wish to share publicly, if they are to directly benefit from these initiatives. For example, joining a Memory cafe, indirectly means you have to declare you have dementia or at least memory loss. Using a ‘slow lane’ or a lane clearly titled with the word ‘Dementia’ also means you would have to declare publicly you have dementia.

I gave a presentation at the ADI Conference co-hosted by Alzheimer’s Australia in Perth a few years ago, and one of my slides said: Dementia friendly is about full inclusion, accessibility, enablement, equality, autonomy, respect, dignity, the right to be employed, and the use of enabling and respectful language; without these our communities will never become dementia friendly.

I’d been convinced back then by Alzheimer’s Australia to accept the terms dementia friendly communities and dementia friends, due to the significant investment (financial) that organisations around the world had made in them. These initiatives were undoubtedly done in good faith, and I’m sure everyone sincerely wants to improve the lives of people with dementia and our families through these initiatives, but I have always had reservations. I’ve also never thought it was done without good intentions, although have been told the term came from a marketing firm, to support fundraising. If I can find the proof of this, I will write another blog about that as well.

Anyway, I am no longer in paid employment by any organisation selling the DFC messages, and can therefore say (hopefully, without concern of retribution) that I never agreed with the terms, and still do not agree with the term dementia friends/friendly. I also believe that if we don’t have access to adequate pre and post diagnosis health care and support, then no community can say it has achieved the goal of being a DFC and a DF initiative unless it changes that. Signing up quotas of Dementia Friends, and 45 minutes (or less) of awareness does ot equate to health care, or adequately educated health care professionals.

Over the years, I have changed my mind on many things; some days, even a few times in one day, on a single topic.

Not that long ago, I thought the dementia specific villages were probably a positive thing, as I was gently (and rather amusingly) reminded of by a friend and colleague in Paris last week! I now see them as ‘sugar coated ghettos’, have written and spoken about them this way,  We do not isolate people with other conditions into disease specific ‘gated communities’ or institutions, and have not done so for many years due to it being a form of segregation and restraint.

Many people (not all) living with dementia, feel the use of the term friendly is paternalistic and patronising, and is in keeping with a deficits based approach to dementia, rather than an asset based approach.

wrote about this with Dr Shibley Rahman earlier this year, in a paper titled, Assets-based approaches and dementia-friendly communities published in the Dementia Journal. I used to think we needed to change the term DFC to Inclusive and Accessible Communities, but after reading and thinking about some comments made by Helen Rochford-Brennan some time ago on Facebook, she has convinced me we do only need it to be Inclusive Communities, as if we say we will include everyone, then clearly, access for this to happen (including financial support) must be provided.

The Age-Friendly movement appears to have changed its name to Inclusive Ageing. Others previously using the word friendly appear to be doing the same, for example I heard at the OECD last week, that Autism-friendly is being changed to inclusion, although I cannot 100% confirm this.

So for now, iI have had some new insight into why we can no longer use the term Dementia in any of these initiatives, even if we continued to use friendly rather than inclusion, because as mentioned briefly earlier, four countries/regions no longer have the word dementia in their language. They have replaced it with another term, due to the stigma of the literal definition of the word, and in many cases, as requested by the people living with dementia in those countries.

This therefore will surely have to mean they will also have to change the name from Dementia Friendly Communities or Dementia Friends (if they are engaged in these initiatives) to reflect their new word for dementia, based on the fact the word dementia no longer exists in their language?

I really doubt it is going to be that simple…

Finally, from my perspective, whilst ever it is people without dementia, employed as the experts in these initiatives, it is already exclusive of people with dementia, and decisions are being made, about us, without us. In my experience, an advisory group is also often little more than a tick box exercise.

These initiatives must be on rights including full and equal inclusion, for them to have real impact to the lives of those of us living with dementia and our families or those who are supporting us.

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41 thoughts on “Inclusive Communities”

  1. Important issues dear Kate about how people deal with stigma. You know how I’ve never liked “friendly” either – we emphasize “inclusive” in our workshops. But perhaps the campaign adds to public awareness that this is truly a public health priority. (Anyway, can’t change it now 😉).
    As for “dementia”, it’s an important word to “reclaim” if we can….though often I wonder if it would be better to talk about a condition that affects X, Y, Z, eg “I’ve got a condition that affects my language”, at least in personal social chitchat.

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    • Agree… DAI specifically used the word dementia in its name to attempt to normalise it, but people from less developed countries don’t feel the same. It’s sometimes easy to get carried away with what we personally believe, forgetting about different cultures! As you suggest we are ‘stuck’ with the terms DFC and DF, so have to somehow make sure these initiatives do result in inclusion and full access to our communities including health Care and Rehab. I like your last suggestion too, and it’s what I sometimes do, without realising its value. X

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  2. I would like to contribute to this discussion from a disability and cultural training perspective. I have been training adults in these topics, as well as aged care and dementia care, for a few years now. I also had the opportunity to train a group of yr 12 students in the same content. The interesting difference was how accepting the young people were compared to older ‘mature aged’ students, especially on the topic of cultural diversity. When we discussed differences, stereotypes and even discrimination, the discussions were brief as the younger generation were very accepting of any difference (eg. LGTBI, disability, race) and didn’t need exercises or examples. I got the impression that in the (near) future we will not need to include a unit of study about cultural diversity as it is accepted as the norm that people are different, live different ways, have different values etc. I have also seen this acceptance in my work with people with disability over the years, and I hope it will eventually follow that any disability, including dementia, will be accepted as part of the range of people in the world.
    For the moment, i believe we need the words disability, dementia, even dementia-friendly, to get the message across to those who are unaware of their unconscious biases and discriminations. I believe that eventually we will all accept people what ever their skill level, skin colour, religion etc as fellow people to be included and part of which ever community we live in. In the meantime, we need skilled people like you Kate, to raise awareness and keep the talk happening, at a level that we all understand, and in a way that we can all accept.
    Thank you for your massive efforts over the years – it is making a big difference, now and into the future.
    Bronwyn

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    • Hi Bronwyn, Apologies for my delayed reply. I’ve not been online here much lately, due to health and other reasons, and wanted to respond to this on my computer, rather than try to do it on my phone. It seems we need our fingers to morph into points for that!!!
      I was interested in your comment about young students vs mature students in terms of cultulra r other diversity. O hav efoudn the same with journalists when discussing the importance of respectful language to them. The younger ones get it, the older editors add back in the offenive words such as sufferer! A few years ago, I too believed we needed the words dementia and dementia friendly – but if these programs were doing what all the organisations funding them say they are doing, I think we should now be able to drop the labelling by disease and disability… just another way to view it. I’m glad to hear you think my work is making some difference; many days, it feels like all I am doing is hitting my head against a brick wall! x

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  3. The only country I know that has changed the name they had previously used is Japan.
    They didn’t have a word but a description, which was very derogatory, so they changed the description to a more suitable word.
    Dementia friendly communities and the dementia friends information sessions are educating all to make people affected and diagnosed with an illness under the dementia umbrella included and inclusive.
    I don’t think the answer is to change the word/title ‘dementia’, but to keep educating all till everyone understands and then there will be no stigma or misconceptions.

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    • I actually agree with you Chris, and it was why we purposely named DAI with Dementia in the name, but other cultures don’t agree. There are now 4 who don’t use the word dementia, Japan being one of them, and others currently considering doing the same including the UAE, and all non English speaking countries. It’s an interesting time. Unlikely to negatively impact or even change these positive initiatives, just means they may be renamed something else in those countries.

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  4. Great article, thanks Kate. What are the words the other four countries use? Can you also let me know which are the four countries? Most interesting thanks again.

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    • As I only speak English I can’t you! But it would be a version on their own language of the DSM5 definition which is Major NeuroCognitive Disorder (or similar to that!)

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    • Thanks Kate, I’ll investigate, which are the four countries and languages ? Keep up the good work 🙂

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    • Japan is one of them… I’ll have to go to my notes for the others to he 100% sure, but think Taiwan is another. Will try and remember to report back! One of the other languages currently considering it is Arabic, which will impact a few countries.

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  6. I take my authority from the WHO and the ICD 10 and the term “dementia” is still used.
    http://apps.who.int/classifications/icd10/browse/2016/en#/F00-F09
    I like American English because it has a better spelling system but “neurocognitive disorder” sounds like a messy Americanism akin to “faucet” for tap. Kate, I am still trying to locate.that article in the European Journal of Psychiatry that argues for the term “dementia” to be retained.

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  8. Hi Kate,
    In my second book, I elected to just say ‘inclusive,’ in order to envision a society that engages ALL, regardless of age or ability. I made the point last year to Glenn Rees, and he responded that while that is the goal, he feels that dementia is still so misunderstood and stigmatised that it must be called out in the name, at least at this time.
    So I just add his perspective to the discussion. But I have long said ‘no’ to ‘friendly.’ (and I got the city of Durham, North Carolina to change the title of their initiative to ‘Dementia-Inclusive Durham’).
    Best, Al

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  10. Hi Kate,
    Thought provoking, and as always your perspective is definitely something that we must ponder.
    You enlighten us and inspire us with everything you say, and it always makes me sit back and look at the existing paradigms and question them in more depth.
    You are correct I believe that dementia village scenarios is just taking segregation and ostracism of people living with dementia to a much larger scale, and I agree with you that this is definitely not the answer.
    If it is a solution in which continues life and integration however, with additional support for those that are more vulnerable, then this type of scenario may one day be possible.
    If we could only promote a supportive environment consisting of entire communities, with people living with dementia as the experts, providing us with the skills to understand their needs.
    The community, medical professionals and people living with dementia need to “work and exist together” to ensure an educated approach based on understanding and meeting the needs of our entire population regardless of what medical conditions they have.
    I totally agree that unless we have a more educated community, health care professionals and care partners, then no matter what is developed, it shall not be successful.
    Knowledge is without doubt an area still sorely lacking. This should without doubt be the starting point.
    As we have been discussing lately, current solutions continue to be created STILL based on the old archaic stigma and stereotypes about people living with dementia, and until this has been reversed through education, compassion and empathy, all solutions will continue to be based on subjective, cognitive viewpoints and assumptions that locking people away keeps them safe. What utter rubbish!!!!
    Change of attitude shall promote a change in how we perceive dementia and thus enable a person living with dementia to continue living a full and meaningful life, unhampered by the restraints we can so thoughtlessly place on them.
    I would love to be able to replace the word dementia but that one I believe may take longer.
    What we need to do first is alter the perceptions of society towards dementia and once it is perceived as each persons ‘norm’ and ‘personal truth’ then maybe that acceptance may breed a new era of embracing the word dementia just like we embrace cardiac disease, or diabetes, without the negativity and stigma.
    Cheers my friend.
    L.xx

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    • Agre with all you have said… the challenge is the perceptions of dementia in the less developed countries, hence why they have deleted the word completely. I’d like to see someone do a study on whether that actually changes (improves) their care, and reduces the stigma.

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  11. But isn’t it still dementia, no matter what you call it? I must admit, I struggle with the ‘academia’ of all this at times….

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    • I’d say you are right, except now, in four countries, they are using different words for the word dementia, so have replaced it. Still the same groups of conditions though

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  12. AD is a dementia changing the nomenclature takes away the actual intensity of the historic name for this disease. I cannot envision these pandemics need name changes but cures. Let them in other countries change the name in the different language cultures but let us stick to precedent.

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    • I think I agree with you, although am a little unsure if I really know what you mean. My point was, if some countries have deleted the word dementia from their language, then technically, they can no longer use the erms dementia friendly communities, or dementia friends, which is quite a quandry for them, and others

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    • I agree with Norman, the name doesn’t have to be changed, we literally do have dementia, some lucky ones slower than others, but that is the correct definition. It’s great that we can all debate the semantics in our early stages, but as a retired nurse who has worked with people just like us at the moderate to severe end stage, we do unfortunately achieve the later stages of dementia eventually. Let’s concentrate on a cure for Dementia, not a name change. You wouldn’t change the word “cancer”, well I think “dementia has the strong connotation that is necessary if there’s any hope for increased spending in finding a cure for this horrendous affliction. My opinion.

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    • Like cancer was in the 70’s, people with asked for better care, not a new name. But when people from other cultures speak up about renaming dementia, they are just as entitled to see it differently, from their own perspectives imo

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  13. ..”Diagnostic and Statistical Manual of
    Mental Disorders – fifth edition
    Dementia has been newly named major
    neurocognitive disorder (NCD) in the DSM-5. However,
    the term dementia may still be used as an acceptable
    alternative. The two terms are essentially different
    labels for the same condition; major NCD is equivalent
    to dementia. The DSM-5 also recognises a less severe
    level of cognitive impairment, mild NCD, which now
    provides a diagnosis for less disabling syndromes that
    may nonetheless be causing concern and could benefit
    from treatment. Mild NCD is equivalent to mild
    cognitive impairment (MCI) and to prodromal
    dementia, again different labels for the same condition.
    DSM-5 provides diagnostic criteria for both major NCD
    and mild NCD, followed by diagnostic criteria for the
    different subtypes or causes of NCD. Although the
    threshold between mild NCD and major NCD is
    inherently arbitrary, the two levels of impairment are
    considered separately for consistency with other fields
    of medicine and to capture the care needs of people
    living with NCD.
    NCDs are characterised by cognitive impairment as the
    most prominent and defining feature of the condition.
    The term ‘cognitive’ broadly refers to thinking and
    related processes, and the term ‘neurocognitive’ was
    applied to these disorders to emphasise that brain
    disease and disrupted brain function lead to
    symptoms, and that, in most cases, such disruption ..”

    From https://www.dementia.org.au/files/helpsheets/Helpsheet-DementiaQandA11-DiagnosticCriteriaForDementia_english.pdf (This is from the Dementia Australia help sheet)

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  14. Excellent article about inclusive communities, Kate. The word “dementia” does appear to have stigma attached to it, perhaps this is because it is an umbrella term.

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    • I think it is like the word Cancer was in the 70’s… almost the same stigma, similar discussions including about whether we should get rid of the word cancer. I think it is education we need, and better care, rather than removing the word, but clearly some countries disagree

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  16. Hi Kate. This is interesting, and would love to talk to you about it some time. In the countries that are no longer using the word “Dementia”:, what are they calling the diagnosis?

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