I know why they did it. Gene Wilder was a beloved celebrity, and when he died in 2016, the world (that follows western pop culture) felt they lost one of the good ones. He died with Alzheimer’s.
They couldn’t resist the power of the celebrity story to convey their message.
In 2017, the Alzheimer’s Association in the United States thought up a new marketing campaign called #pureimagination that built on the public’s fondness for Wilder and for his iconic character in Willy Wonka and the Chocolate Factory. In the video created for the campaign, we see clips of the film, a technicolor fantasy where sweets grow on trees that bower over a river of chocolate. It is a world of imagination.
“Come with me, and you’ll see, a land of pure imagination…” sings Wonka, ambling calmly through the world he created, the children and their parents greedily chomping on everything they can find.
In this video though, the items disappear just as they take a bite. And in the background, candy apples disappear from trees. Multicolor pumpkins filled with jelly fade to nothing.
So too, the Alzheimer’s Association is telling us, do we when we have Alzheimer’s.
“Alzheimer’s steals your imagination piece by piece,” it says in bold white letters on the purple background.
“But with your help, imagine how we can end it.”
How will they “end” it? What is the plan?
Forty-seven million people have dementia across the world. This is projected to triple by 2050. Thus far, the only decline in these numbers have been attributed to a bump in the early childhood education of the current generation of elders with the diagnosis – not any of the treatments on the market.
Clearly, we need to invest in research to prevent and delay the symptoms. Clearly, we need to better understand how the brain works and what the mechanisms are behind the progression of symptoms. And we need to invest more than we are now.
But for those 47 million people who currently have the symptoms, imagination is exactly what works to help them feel connected to themselves and to others around them. Imagination is a remaining strength that can be exercised like a muscle. Family members and friends who mourn the loss of shared stories of the past that connect them to the person with dementia can learn to shift toward creativity to find emotional connection, to play, to create new moments and experiences together.
I have not agreed with the Alzheimer’s Association’s fear-based, stigma-fueling marketing campaign for many years. But this one feels particularly egregious. They don’t need to steal the one hope families have for meaningful connection in order to feed dollars into their research machine.
I offer my revision:
Come with me, and you’ll see, a land of pure imagination
a place where we
Can be free
And feel comfort and connection.
Imagine how we can transform dementia care by infusing creativity into our everyday exchanges, our programming. Imagine how people with dementia can draw their families and friends together again, out of their grief and fear, into the moment of shared imagination.
Usman Muzammal says
I am currently a student in the Erikson school of aging at the University of Maryland, Baltimore County and enrolled in Aging 320. I completely agree with your post as I can personally relate to it. It is essential to have positive communication channels between sufferers of dementia and their family members to increase their support. In the class that I am currently taking, I have read many articles related to the care of patients with dementia and how to assist them to improve their quality of life. The article that I specifically recall is called “Dementia beyond drugs: Changing the culture of care. By improving communication channels amongst the people that suffer from dementia and their loved ones, it gives them hope and a positive energy in their lives. This enables them to create fond memories that would improve their quality of life.
Joshua Rosario says
I am a student currently enrolled into AGNG 320 at Erickson school of AGNG at UMBC. I strongly relate to this post because of a second cousin of mine that is currently dealing with dementia. The family who he has is currently not so close to him. The reason why this post relates is because i agree on how we should expand on building a relationship with them and on communication, people with dementia need their loved ones their with them through every step. In the class that i am currently taking (AGNG 320) we read articles and class readings about people with dementia. in this article it talked and focused on being more interacted with the patients with dementia, instead of being care partners they became care givers. The article of this experiment was “Dementia beyond drugs: changing the culture of care”. By building relationships and having better communication it can create new memories with the people with dementia and can help them tremendously especially if its from their loved ones.
Victoria Alexander says
I am a student currently enrolled in Aging 320 at Erikson school of aging at University of Maryland Baltimore County. I strongly relate to this post because I agree that we should expand on all the possibilities that there is to offer in expanding the connection and communication between family members who have dementia and their loved ones. There was an article in class that I read that talks about this experiential model that pays an increased amount of attention to the interactions and relationships rather than focusing on dementia as an irreversible disease that cannot be cured (Dementia beyond Drugs: Changing the culture of care). While the memories are lost that does not mean family members cannot create new ones. There is still the possibility of growth and we need to focus on that with the individuals that are already suffering from dementia.
Louise Hurley says
I was just wondering about Dementia versus Alzheimer’s.
On my mother’s side of the family it was rampant. My great grandmother, my grandmother, and three of her daughters have all suffered this/these conditions. With my grandmother it was stated ‘dementia’ – with my aunt it was deemed ‘alzheimer’s.’
Luckily, my mother, at age 91, is still functioning wonderfully, and must have inherited her father’s genes.
I sometimes worry I’ll be affected with this family ‘curse’ and how does one stave off this frightening condition?
Wendy Miller says
Thank you Anne – You have written a fabulous piece. I have had my own share of negative feelings about the association after they renigged on the contract they had made with Gene for the Making Memories Together games after he died. Still looking for a home for all those games, which help families be together to create ways to play and imagine from their life’s memories.
Jason B says
Thanks for shining a light on this exploitation of fear Anne. I see it all the time around the world with research organisations and Alzheimer’s Associations particularly feeding the fear and stigma to raise a donation dollar. Dementia is often a hard and terrible journey, but within it the person remains and the moment we stop seeing this is the moment the person is lost, not because of dementia but because of the way our relationships are lost. As Michael Verde taught me, there is no “me” without “we”. These organisations have a responsibility first and foremost to those living with dementia now.
1/ Thank you for Keeping it real and voicing concerns about their marketing. They can do better. 2/ It’s challenging to raise money to support programs and services and research For AD. Stakeholders have been struggling over “the message” for decades. Protraying the extremes, neither feel right to me. But All these messages are real and true to someone. 2/The local chapters of the Alzheimer’s Association have no control over the bigger marketing campaigns of their National office. They do great work. Full disclosure I worked for a local chapter for over 10 years developing programs. My opinion is that the real “magic”- the creativity, the direct services and the relationships and the support for those living with AD- was always on the local level. This magic included bringing stellar and amazing individuals to our local communities to provide training, inspiration and much needed ideas. 3/ the research “machine” is a necessary “thing” that has helped to fund some amazing work, studies and translational research.Research that has led to ideas, clinical approaches and trainings that make a difference.
Thank you for this very thoughtful reply. I agree on all your points. I worked closely with our local chapter as well, and I believe in research. The difficult part is seeing first hand the very real impact of stigma (isolation, despair) that is being fueled by the national marketing campaigns. As they seek to eradicate the disease itself, they make the lived experience of it worse for 47 million people. Other international dementia organizations do not do this. It does not need to be done.
Sara P says
I admire all of you. This article is true and unfortunate. I called out the Alzheimers Association a while back for a campaign I thought was insensitive – details below
“An ad came out with the words “…the power to stop it is within us…”. This statement isnt true I would walk a million miles if it were – any of us would. I asked them to have their marketing department consider changing the message – it’s just false and in my humble opinion they should know better and do better… #Repost @alzassociation
“Alzheimer’s is devastating to our families, our finances and our future. The disease is all around us — but the power to stop it is within us. Start or join a Walk to End Alzheimer’s team today.” – I am happy to see others challenging these organizations to do better. *I have an advocacy website for kids who live in the home with and help care for people who have dementia / alz etc. ♡ Neither of these organizations did anything for me during our caregiving years…
Marise Hausner says
Gene Wilder had Non-Hotchkins Lymphoma when it was a death sentence. He underwent what was then a very experimental stem cell transplant, and lived for several more decades. Not bad. But, I do agree with you, Anne. We are the niche market that everyone feels free to exploit.
Anne Basting says
Susan Macaulay says
Absolutely 100% with you Anne. Enough with the negative narrative already. Let’s get on with living while we’re alive instead of dying before we’re dead! These links might help:
Yes …The best example a non-profit gone awry is the AARP, which unabashedly exploits its supposed 38 million membership base by entering licensing deals with major corporations to sell everything from MediGap health insurance to internet service. Some of these deals represent an actual conflict of interest with the AARP’s mission of advocating for older Americans. For example, the AARP secret;u lobbied of the Obama administration to block health care reforms that would have saved 80 percent of older Americans $415 a year. (See Politico – AARP sells out Seniors, 9/21/2012) . The profit-making arm of the AARP plows its earnings into the $1 million+ salary of its CEO and the half million dollar salaries for a dozen underlings. And the AARP sprinkles chump change around in the form of grants to organizations that consequently don’t criticize the AARP. Meanwhile, the AARP virtually ignored age discrimination in employment for 50 years, a problem that had contributed to poverty for millions of older Americans (primarily women).
Susan Macaulay says
Oh my goodness! That verges on criminal…
Paul Falkowski says
Amen! Thank you for bringing this to light.