As we enter the month when dementia awareness is heavily promoted around the world, I am moved to think of some of the advocacy campaigns that are out there, and I think it’s time to challenge a bit of the language being used. Language is important in both reflecting, and determining our views about this condition. The negative effects of stigma are huge, and our language choices are often the places where such stigma starts or ends.
Kudos to ChangingAging Editor Kavan Peterson for first raising this sentiment in his 2013 post Alzheimer’s Disease Has a Brand Problem. Kavan and his friends in the Momentia Seattle community have demonstrated the power of language to reframe an issue.
This post comes with both a trigger warning and a disclaimer. The warning is that I am aware that such campaigns are largely created by good, caring people; but I will nevertheless mount a respectful challenge to the “branding” we use. The disclaimer is that these opinions are my own—not necessarily the “right” ones, but simply offered as food for thought. (And I am going to stay away from the word “dementia” for the time being—no one has totally solved that one yet.)
I have three basic topics to address today:
“Against” and other combative imagery
The G8 and WHO, as well as some local organizations, have adopted such titles as “Global Action Against Alzheimer’s.” Personally, I would much rather see a campaign for Alzheimer’s. How could I say such a thing?
Our use of militarized terminology suggests that dementia is some sort of foreign invader that must be vanquished. That may be very stirring to our patriotic hearts, but actually can be damaging to the very people we are trying to support.
Alzheimer’s is not ISIS. It is not a parasite that has entered the body and must be destroyed. Alzheimer’s and other forms of dementia are conditions in which the internal structure and function of our brains change, due to various pathological processes.
What that means is that the condition becomes very much a part of how the person experiences and relates to the world around her. Like it or not, dementia becomes an integral part of who we are, just as a physical disability becomes a critical part of our lives.
So, the problem is that when we wage a war against dementia, we unintentionally involve the person in “friendly fire.” To demonize the condition is to demonize the person by extension. We don’t try to do it, but the effects of such campaigns—and the stigma and fear they create—do the damage nonetheless. When we cannot “fix” the dreaded enemy within the person, the person loses value, or is seen as a failure.
The reason I favor “for” over “against” is that the humanity of the person is critical; so, to me the effect of our branding is better understood if we insert the phrase “(the person living with)” into the title. Would you rather have a Global Action Against (the person living with) Dementia, or a Global Action For (the person living with) Dementia”?
On a related point, think about another commonly repeated catchphrase: “Every person who gets Alzheimer’s will die.” Of course they will—so will every person who lives and breathes, for that matter. We know Alzheimer’s is incurable, as are many other age-associated conditions like arthritis, heart disease, and wrinkled skin. But there is only one reason to express it in this dire way, and that is to frighten people, to literally “scare up some support”—hence the stigma.
Kudos to the newly formed Dementia Australia for changing their website away from the old “fightdementia.org” address. To impel people to fight against an incurable condition is to make them all losers. Which leads me to:
A new campaign out in the US is the search for “the first Alzheimer’s survivor.” In the wake of criticism about excess focus on the elusive “cure,” this appears to be a repackaging of that concept. I have to tell you that many of my friends living with dementia are offended, even enraged by this terminology.
Here’s a representative comment: “So I have carved out a meaningful life of engagement and advocacy, in spite of living with this diagnosis for over a decade, and I am not a survivor??!”
Once again, this all-or-none view suggests that the only way people can have a valued life is if we can find a pill to make their challenges go away; to make them more like us, or more like they used to be. And the person living—even living well—with dementia becomes devalued.
Note that none of my criticism is to suggest that we should not continue research to find ways to help forestall or delay progression of cognitive change. Rather, it’s how we campaign for such support, and whether those campaigns actually help those we purport to represent.
“Remember me” slogan
Lastly, as I head across the pond to speak at two events for World Alzheimer’s Day (which I would prefer to call “Dementia Awareness Day”), I have read that this year’s slogan for the day is “Remember me.”
I get the clever wordplay, and if the implication is that we should be mindful of our relatives, friends and neighbors who are living with changing cognitive abilities, that’s a good thing. But there is also a downside to how this is expressed, and interpreted.
There tends to be an intense focus on who the person living with dementia used to be—we spend a great deal of time pushing reminiscence and living in the past. Richard Taylor used to say, “My biggest challenge is figuring out today; and all you offer me is yesterday.”
Of course, part of this is driven by the grieving process—both by the person and his loved ones. But once again, the implication of living in the past is that the person is fading away, becoming less valuable, even less human than he used to be. In fact, the phrase “remember me” almost suggests that the person has died.
If we only measure our humanity through certain abilities, such as how fast or far we can run, then all of us are losing value as we age. But we know that growth can manifest in many other ways. By limiting our valuation of the person to his memory, we deny him myriad opportunities for growth and meaningful engagement in the here-and-now.
So, instead of “Remember me,” my suggested catchphrase would be, “Know me.”