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:
Alzheimer’s “survivors”
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.”
What a fascinating article to think about. I think this is a great point and as I have been taught, person-centered is so important. The powerful statement you mentioned of “know me” speaks to this on a great level. If we change the terminology we use, we change the way we view it.
This is a fascinating article, Dr. Powers. As a student minoring in the management of aging services at the Erickson School at the University of Maryland Baltimore County, dementia is a topic that is heavily discussed in our classes. Besides the horrid symptoms of dementia, we also discuss the loss of self-identity and autonomy. Your post and the topic hits home to me. I had an uncle that suffered terribly from dementia. In retrospect, our family and physicians would always focus on “who” he was instead of who “he is”. Your suggestions are a great approach for organizations changing their verbal wording for supporting the individual suffering from the disease. There are sometimes unattended consequences created from blindspots steaming from good intentions for helping people suffering from dementia. This could be a step in the right direction to help others understand the power of language. Thank you for posting about this topic.
I will add the brand approach and the lack of a concentrated Association to take all of these plus and minuses to sell the correctness of what is taking place in our industry.The adverse nursing home image and bad publicity here and in Canada precludes the use of the brand when this publicity clouds our image in the public mind. Dementia and AD so called attempt to brand are in a rut based on the hospice and palliative track in the mind of the public is very negative as hope is not on the horizon. No comments from any corner about making the label to fit the brand. We must declare one major factor, the current voice has been ineffective and in order to make a progressive move many of us who think outside the box should team up and start a positive effort for real patient oriented research based on following the Scandia operations. CMS and Medicare must be on the team as they are imbedded in an Association that keeps running for the cure.
thank you, thank you, thank you for these incredible insights
At the same time, we cannot ignore the cruelty and destructiveness of this disease. As a former hospice chaplain, I have walked with both patients and families to the end brought on by this disease. I do want science to agressively work toward a cure all the while fiercely loving and respecting patients and families in the midst of this difficult and grief filled journey.
Thanks for your wonderful article Al. I wanted to add that “Remember Me” also puts the focus squarely on memory as the only symptom of dementia. Putting the focus on memory adds to the stigma, as there is the idea of “who are we without our memories?” Meaning, if a person has no memory, are they even human? Secondly it doesn’t educate the general public as to the other disabilities — indeed that there are disabilities — associated with dementia and how these might be accommodated. I much prefer your suggestion of “know me.” I’ve also heard it said that the vision of “A World Without Alzheimer’s” suggests that the world would be better without the very people the organizations are trying to assist, once again reducing the issue to a disease rather than focusing on the people being impacted and ensuring they can be better accommodated to live in their communities. I know this was not the intent, but…
Excellent Al,
Words to live by from a person living with dementia:
“Know more about me than my diagnosis and we’ll get along just fine.”
Angela
Great article Al!
Well said too Leah!
BTW – loved your address to the AACQA conference today Al……
Great post as usual. Thanks Al.
I appreciated your post and am basically in tune with all of it. However, I would offer a comment on this thought that you offered: “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.'”
For nine months, I have led a “Community Circle” discussion with a group of people having a diagnosis of dementia. We are located in a rural area, and most of them are from farms or small towns. I approach them as my elders (I am 67 yrs), and that I enjoy learning from them about a way of life, having grown up in a major city, that I could never have known . While we do talk about topics such as “what makes you happy” or “what are your favorite garden vegetables”, we inevitably talk about old times. I love to hear about riding on ponies to school, making underwear from flour sacks, helping Mom & Dad in the gardens and around the farm, and making ice cream (“What is your favorite flavor”).
Their past is what has made them what they are today. I enjoy my time spent with them. I have reason to believe that they value this time as well. And hopefully, it helps them to better know and understand each other as well. After all, this isn’t about me. It is about them.
Thanks for your comment, Bill. I agree with your point, and think the main issue is a matter of finding the right balance for the person wherever he/she is today. It was mainly the flavor of the tagline that bothered me.
I like this quote from Sam Fazio’s book “The Enduring Self in People with Alzheimer’s”: “It is important to connect with who the person is currently, to support who the person has been throughout his or her life, and to stay open to exploring who he or she is becoming. The past must be allowed to influence the present, yet not to define it. The present must also be allowed to influence the present. At the same time, both the past and present must be allowed to shape the future, and the future must be left free to influence itself.” (p. 117)
Thanks for your response Al, and I like the quote. I will copy and share with others. It presents a way to “add more life to the days” of those in a retirement center. It goes to the core of the challenge of achieving “person-first” care within the household model.
Dr. Al,
Thanks to you and your books, I now talk about and refer to “cognitive change” rather than “dementia.” I am on a continuing mission to coax my fellow professionals, friends, and family to make this language change too, and to reframe their views about cognitive change.
Thanks so much for all you do.
Glenna Wilder
https://lnkd.in/gvbmQpq
Please see my article related to the negative and stereoteydpical viewpoints associated with dementia, and provides a perspective that enables us to perceive life through the reality of the person living with dementia, instead of from a purely subjective and cognitive viewpoint.
Thanks for your input, Leah!
Thanks so much for sharing, Leah!
Pleasure. These are areas I feel very strngly about.
Subjective terminology such as assuming a person “suffers” are terms that are demeaning & derogatory, creating a dehumanising attitude.
These invalidating terms don’t reflect the often positive, & wonderful lifestyle that can be attained when living with dementia.
People living with dementia are courageous & inspiring in their fortitude. It is we who are the catalysts to creating the stigma & the fault lays with us for generating this attitude by using terminology that instills negative attitudes & are a representation only of our fears!!
We devalue & disrespect by placing our cognitive assumptions onto them, restricting them from living happily with dementia, because we can’t perceive they could still be living a fulfilling life. Just because living with dementia is ‘different’ to what we “expect” does not mean we should assume or conclude it is to be feared, must cause despair, core suffering or sadness.
This is a destructive & harmful myth fostered by constant reinforcement by those that have received inadequate information. It has unfortunately bred a continuation of ignorance, misunderstanding & misrepresentation throughout most of humanity.
Hence I again reinforce that these attitudes are frequently the impetus in creating inaccurate perceptions about dementia & those that live with dementia, therefore instilling the harrowing terror & pessimistic mindset, that we then, prejudicially pass on to those we care for.
Dr. Al, once again you’re right on point here. KNOW ME is the operative phrase here as we try to understand each person’s struggle with this disabling disease.
I would only add that Dr. Dale Bredesen has had great success reversing Dementia. My hope is that we all take time to examine our Attitudes about labeling people instead of trying to understand How to best help them.
Thanks again for a great article asking us all to STOP and THINK before we speak.
Once again, Dr. Power expresses, eloquently and succinctly, changes which make living with dementia easier for those who are doing just that…”living.” I think his suggested language changes are excellent and I will adopt them. I’m doing training next Thursday for volunteers who will help with our newly formed “Musical Memory Singers” chorus for people living with the disorder, their carers, and volunteers (kudos to the Giving Voice Chorus for their excellent “how to” Toolkit on their website/YouTube videos). I will have an opportunity to share these “Power-ful” suggestions with attribution to Dr. Power. For what it’s worth, I’m training members of the Ambassadors For Aging Well to say “NCD” (neurocognitive disorder) instead of “dementia.” Whether that will ever catch on or is the best descriptor is yet to be seen but it’s less stigmatizing to my way of thinking.
Thank you for your comments, Elva, and for all of your important work!