What’s in a name? It turns out there can be a lot. ChangingAging webmaster Kavan Peterson recently asked if I would care to comment on a post by Australian Kate Swaffer bemoaning the lack of input from people living with changing cognition in many so-called “dementia-friendly” community initiatives around the world. She rightly makes the comparison that any effort to speak on behalf of other groups (such as those based on race, religion, ethnicity, or sexual preference) without seeking their input would be reprehensible. Which brings me to the topic of language.
As it happened, the same day Kavan contacted me about this post, I caught a piece on NPR about our language regarding race and why it evolves over time. Commentator Gene Demby explained that changes in terminology that many people reject as simple political correctness are often an important response to a subtle process called pejoration.
Pejoration means that, over time, a word that was considered a better choice in the past can take on the negative stigma of the word(s) it was meant to replace. Why? Because words are easier to change than our inner thoughts and biases; if those biases are not altered, they will eventually “infect” the new terminology.
Demby sums up his essay by reminding us, “the language we use to refer to each other reflects the relationships that people have to each other. And our relationships to each other, politically and socially, keep changing.” If our terminology starts to pull us backward instead of forward, it needs to go. This is why we have to continue to challenge our language—not in a misguided attempt to create hollow euphemisms, but to help us evolve our relationships to a more enlightened place.
And so it is with “dementia-friendly.” At its inception, the idea that communities should be more accommodating to the needs of people living with changing cognition was a progressive one. However, the overlying mindset in society was still the stigmatized view of the person with dementia as being incapable of intelligent discourse or valuable input. (This also parallels our societal view of older persons, and a similar problem has resulted from many of our “age-friendly” initiatives.)
The pejoration of the terms dementia-friendly and age-friendly is that they have been infected by these patronizing and paternalistic views, leading to a paternalistic system of thought and action: “Oh yes, we care about old people. They are very special to us, and so are those poor people with dementia. Let’s be kind to them and find ways to give them what they need in our communities. And this is what we think they need…”
So what might be better? I have been advocating that community planners switch to the terms “age-inclusive” and “dementia-inclusive,” as these terms raise the bar by requiring the inclusion of such people in all aspects of community life and planning, rather than simply creating a kind but misguided process of substituted judgment. Of course, the word “dementia” is also seen by many as problematic. In Chapter 11 of Dementia Beyond Disease (written with input from Daniella Greenwood of Arcare Australia), we wrote simply about our vision for an “inclusive society.” Another phrase I have heard used—“livable communities”—is also a good choice.
So stop being “friendly” and be inclusive! Did I mention that Kate Swaffer lives with changing cognition? We can learn much when we doff our “expert” hats and create authentic partnerships with those whom we profess to serve.
Diane M. Blasotto says
We have to pray we don’t get the disease.