Dementia: enabling, inclusive and accessible

 

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It appears even to me, I am too busy. My commitment to write a daily blog on my other website has failed miserably this year, and my goal to publish at least one per month here has just failed as well! Of course, this does not mean I am a failure!! I am so busy living beyond dementia, some things have simply had to be dropped, and blogging is one of them. Not that I will drop it completely, as find the conversations too interesting on both sites, and my recipe website is also one I occasionally still contribute to, but already has almost 300 recipes.

So, onwards and upwards through the ever so slightly increasing fog, I will contribute here today, so I don’t miss July, even though if I lived overseas, this may still be in June…

This month I want to talk about the term dementia friendly communities, and how I have always believed it needed to change, and although the idea of communities being dementia enabling has been used, perhaps to replace friendly, it has been highlighted that to be enabled is to be ‘rescued’. There has been a very interesting conversation about these terms on Facebook, which I will highlight at the end. Dementia Alliance International has been talking about it as well, and is to publish its first major report in World Alzheimer’s Months this year, on this very topic.

Access is what people with dementia need, with appropriate support for all of our disAbilities caused by dementia, but inclusion needs to be part of it, as does, sometimes, having someone enable you [the person with dementia] to remain active in your community. We need them all, and it is also why I say a dementia friendly community has many more aspects to it than being friendly and raising awareness in the community.

The quality of our interactions and support and care, is by far, much more important for example, than the number of Dementia Friends any one country may have signed up, and certainly more important than how was first with their campaigns or initiatives. It seems too many without dementia are more focused on those things, than on improving our pre and post diagnostic experiences.

In my work with others at the University of Wollongong (UOW), I am involved in a unique initiative to create a dementia enabling university. You can read about it here, but put simply, it is a project to embed knowledge about dementia into every discipline; if we educate  the  next generation of working adults in dementia and why it is relevant to their own fields, our communities will become much more accessible and inclusive, almost as a matter of course.

“Several universities internationally, particularly within the UK, have extended this focus and implemented the idea of a ‘dementia-friendly university’ in an effort to better address dementia awareness and skills. These initiatives tend to focus on encouraging staff and students to become ‘dementia friends’ (Plymouth University, University of Huddersfield, and the University of Salford) and to make changes to the physical environment so campuses are more accessible and enabling to people with dementia (the University of Salford and the University of the West of Scotland). “

UOW wants to ensure it is not just about becoming a Dementia Friend, or just raising nominal awareness in the community, and more about actually improving outcomes for all people with dementia either in the community or living in residential care. We also want it to move beyond health students, where most of the dementia education now currently rests. I am very excited about this pilot project, and we have other universities wanting to collaborate with us as well, so hopefully this will become a world wide theme and much needed change to the DFC initiatives and DF campaigns currently in place.

This is the very interesting Facebook chat started on 24 June 2016 about the term Dementia enabling (I have removed actual names for anonymity):

DT: I feel mixed about the term, “dementia enabling.” Enabling certainly has a positive connotation of encouraging individuals to develop and grow. But it’s psychological negative meaning often describes dysfunctional rescuing behavioural approaches which in fact may perpetuate or exacerbate the problem for the person being “enabled.” Enabling often means “rescuing” where a person assumes total responsibility or makes accommodations for another person’s conduct (often with the best of intentions), but rendering the rescued powerless. I would hate to think that a person with dementia wants to be “rescued.” Perhaps a better term would be “dementia inclusive?”

Kate Swaffer Very interesting comments DT … I think perhaps we might be better saying Dementia Accessible – as its about the right to support for disabilities and access as others with disabilities are provided, which under the CRPD includes inclusion. Your thoughts ???

DT: Accessible is much better than “Enabling”

LH: The general consensus among the Kiama mob today is that it depends on the context, eg the environment might be accessible but the person might need support, ie enablement, to interact with it.

LH: I think it’s about power and language so I take DTs’ point as well….still thinking on it.

WR: How about “Empowering”?

LH: Ah…but who empowers whom?

NG: I take on board you comments DT. But if you look at the definition of the word enabling, it encompasses all of the alternative adjectives. At the end of the day, words have meaning ascribed to them too. We have to look at the spirit behind what someone wants to express. Regards, Nick

MJA: I think enabling is about providing the scaffolding so that people can access their communities. That is; we need to look at what assistance people might need to live their best life. That scaffolding could be in a practical and physical way, educative, social support or giving people a platform to be heard.

DT: I believe NG and MA, you are missing the point of my concerns about the word “enablers” when it comes to dementia. You are right N, the meaning of words are not found in dictionaries but in people. Hence if you read the following article it may clear up for you my concerns – http://psychcentral.com/lib/are-you-an-enabler/

Enabling is a term often used in the context of a relationship with an addict. It might be a drug…
PSYCHCENTRAL.COM

GP: Re: my earlier comment, this link confirms the context that I was referring to

GP: An interesting conversation.

As you can see, words definitely get people talking…


4 thoughts on “Dementia: enabling, inclusive and accessible

  1. I am a little uncomfortable with phrase “dementia enabling university”, as its grammar makes it sound like the university is enabling dementia, whereas it is the people we want to enable, not the condition. I would prefer “university that enables those with dementia” or “university enabling those with dementia”. Enabling still has a very negative connotation though, so I do vote most of all for “university empowering those with dementia”.

    Liked by 2 people

    1. Good feedback Wendy, thank you. Although, the strategy is not specifically to support people with dementia in campus, but rather to educate undergraduates about dementia, and have that knowledge embedded into all courses. The flow on effect of that is that hopefully the next generation of adults, will all then have some knowledge of dementia, and also understand why it is relevant to their chosen profession.

      For example, the first lecture I have given was to media and journalism students, about “Representation of dementia in the media”.

      Liked by 2 people

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