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.