Dementia, particularly of the Alzheimer’s type, has a serious brand problem.
I don’t think I need a focus group to tell you the leading emotions associated with Alzheimer’s disease are fear and helplessness.
Dementia and Alzheimer’s are arguably the most loathed and feared of all conditions related to aging. Psychologically, few things are more terrifying than losing your mind (or watching, helplessly, as a loved one loses his/her mind). Caring for someone with dementia is extraordinarily difficult and draining. And of course, it’s fatal and has no cure or treatment (and no evidence whatsoever that either is imminent).
It’s not a pretty picture. But what does branding have to do with it?
In the fierce race for research dollars, brand matters — big time. And in my opinion, Alzheimer’s overwhelmingly negative brand associations have made it difficult to galvanize public support demanding effective treatments and prevention. And part of the blame falls on the advocacy community.
Public and private funding for research into Alzheimer’s and dementia has been woefully, shamefully and dramatically underfunded. That was the central message Ian Kremer, executive director of Leaders Engaged on Alzheimer’s Disease, delivered at the latest Aging2.0 meetup in Washington, D.C., May 20. Aging2.0 meetups are networking events for innovators and entrepreneurs developing cutting-edge technologies related to aging. Kremer spoke on the urgent need to galvanize the public and lawmakers to dramatically increasing public investments in Alzheimer’s research to help spark new innovations in the field.
According to the National Institutes of Health, public spending on Alzheimer’s research in the 2000’s was $480 million — chump change, Kremer said, compared to the $6 billion spent on cancer research, $4.3 billion on heart disease and over $3 billion on HIV. Research spending is also vastly disproportionate to the number of people living with dementia and the nearly $200 billion annual cost of providing them with care. If nothing changes, the price tag will balloon to $1 trillion annually by 2050, according to the Alzheimer’s Association.
According to leading advocacy organizations such as the Alzheimer’s Association, the reason for such disparity in funding is because the public has not been outraged or scared enough to demand a bigger investment.
I respectfully disagree. My question to Kremer after his presentation was can you build an effective advocacy movement solely on negative emotions? Is fear and outrage enough?
Kremer agreed that advocates needed to do a better job building compassion as well as urgency. He said there has long been tension within the advocacy community over how to balance the importance of humanizing dementia with the conflicting need to stoke public fear (my words) and outrage to build support.
We both agreed that humanizing dementia is difficult. When a high profile figure or celebrity gets Alzheimer’s disease, such as Ronald Reagan, they virtually disappear from public life. There have been no watershed moments to change public perceptions of dementia, such as when Rock Hudson died of AIDS or Magic Johnson admitted having HIV and became a leading advocate to find a cure. There are few (if any) movies or TV shows painting a heroic or inspirational picture of people living with dementia, compared to countless portrayals of people battling cancer or AIDS.
This is, fundamentally, a branding problem.
Because the movement lacks these popular cultural flashpoints, it needs to make an even stronger effort to humanize dementia and build compassion for people living with it.
We need to meet and get to know more people like Richard Taylor, who lives with dementia and is a vocal advocate and spokesperson. We need to educate the public and reduce fear, rather than stoke it — a good place to start is to listen to experts like our good friend Dr. Al Power. And we need a much larger emphasis on improving the lives of the five million people living with dementia and the countless millions more who are likely to experience dementia before a cure is discovered.
What else can we do to rebrand Alzheimer’s and change the way people view it?
mom lives with me and has an Alzheimer’s disease for about 8 years now. Her body is healthy but she has almost no speech, is pretty much always confused, sleeps most of the day away, is incontinent and requires constant care. The saving grace in all this is that her personality has not changed. She does get frustrated but mostly she has stayed her own sweet self. It is exhausting caring for her and working, and expensive but necessary to have help. I’m trying to keep her at home but I don’t know how long this will go on and her needs are increasing almost daily. She will be 90 in a few she was adjusting to the medications Donepezil (Aricept), but they make her feel sick also. she had problems recognizing other family members and friends. or getting dressed..When the medication no longer helps, i searched for alternative treatment and i was introduced to Health herbal clinic who have successful herbal treatment disease. I spoke to few people who used the treatment here in United States and they all gave a positive response, so i immediately purchased the Alzheimer’s disease herbal remedy for my mother and she commenced usage, she used the herbal supplement for only 2 weeks, all symptoms gradually faded away, . contact this herbal clinic via their email ([email protected]) . or his whats-app(+2348135790702) herbs are truly gift from God
I agree that we need a more positive message, but “hope” is a tricky thing. The way hope is usually presented with Alzheimer’s is that “a cure is just around the corner, of only we funnel a few more dollars into drug research”. But close scrutiny of the mechanisms of dementia and its association with aging of the brain and vascular system suggest that this is false hope at best.
More important is to highlight the potential for millions of people with dementia to live positive, engaged and meaningful lives, when we better understand how to support them and enhance their well-being.
Will more effective treatments be forthcoming down the road. I believe so. But I don’t believe there is a magic bullet. Unless we go “Logan’s Run” and start killing everyone off at 30, dementia is with us to stay. The big question is, how are we going to help those who live with us continue to thrive, as we do with any other chronic illness or disability?
Hopefully you’ve all heard of the documentary Alive Inside featuring Dr. Bill? Here’s a nice popular culture inroad to dementia/Alzheimer’s awareness and quality of life advocacy featuring Kenny Chesney:
http://m.aol.com/music/blog/theboot/2013/05/22/kenny-chesney-music-and-memory-alzheimers/?a_dgi=aolshare_facebook
Considering the upcoming Baby Boomer influx into retirement, won’t we see a corresponding increase in dementia research funding? We shoudn’t have to wait that long, but that may be what’s needed.
I wish this were so, but the Baby Boomers will be in denial regarding Alzheimer’s and won’t necessarily push for such funding. You are right, though, that it would make sense!
Hello!
YES! And this morning I’m gonna talk with a family physician about the difference between using drugs to “treat and slow down the disease” and more drugs to deal with the side effects – and/or provide this 86 years old woman who’s generally quite healthy with as much psycho-social support as possible, and about how to live outside the stigma! – Wish I had known what Richard Taylor and Al Power have taught me since I’ve been my husband’s care partner! We kept having a good time but it could have been even better without the drugs and more money to spend instead for Alex’ happyness! Just fund and shared your blog via Richard on FB, Tina, from Switzerland
I think that legislators and their staff in particular need to hear from more individuals who are living with Alzheimer’s. One of the challenges of this disease (compared to AIDS, cancer, heart disease, etc.) is that beyond the early stage of the disease, it becomes very difficult for people with Alzheimer’s to speak out about their experience. The most powerful meetings I’ve had with legislative staff have been those meetings were our group included a person with Alzheimer’s, who could share his/her experience.
Actually, Kavan makes a very rational point. We may not like it, but it could be true. The marketplace doesn’t like negatives. It likes hope. While there are succesful movies where the main character with cancer dies, we tend to like the ones where they beat the disease. Magic Johnson has been a great advocate for HIV. Lance Armstrong, similarly for cancer. The comment about Richard Taylor is a good one. Is branding the right word? I don’t know, but dementia isn’t an easy disease for which to galvanize positive public opinion. I think that we need to take this article to heart and think of ways of positively portraying the isssues surrounding Alzheimer’s. At the same time, we need to deliver the message regarding the importance of confronting this disease head on. There is certainly an ageist bias against dementiaand other diseases of advancing age. By avoiding the issue, maybe it won’t happen to me, may be the way most people respond. Again, we may not like that, we may not fully understand it, but it may be the problem. So, let’s take Kavan’s point to heart and think of better ways of promoting the issues surrounding Alzheimer’s Disease!
Thank you Kavan for recognizing this Alzheimer’s branding concern. It is something I have felt for years! It’s true, Alzheimer’s is a lousy disease, filled with grim statistics and heartwrenching stories. But, what is not publicized enough is the incredible work done by the Alzheimer’s Association to help the families that are affected by this hideous disease and to raise the millions of dollars that make the Association a primary funder of research into a cure. That is the message that needs to be sent. My thought has always been that people would much rather donate when they see the positive things their money can do for a cause instead of being frightened by scary statistics. We can only hope that the marketing decision makers will get that message. Unlike curable diseases, Alzheimer’s disease does not have the face of a survivor on whom to rely for publicity purposes. But there are thousands of families who have survived the ordeal because of the work done on their behalf by the Alzheimer’s Association. Let’s let people know!
You are absolutely correct, Sarah … And that’s exactly why I use words such as “horrific” to describe this disease. Memory loss is merely one of the early symptoms of AD. In its final stages, AD shuts down most bodily functions — including the ability to digest food and breathe. Often times death results from some other AD-related complication, such as pneumonia. I don’t know how others may feel, but I think starvation and/or suffocation are rather horrific ways to end life.
For reference, here’s the comment Jim is replying to from below:
Sarah Krueger (@SarahKrueger_WA)
There are so many misconceptions about Alzheimer’s (one being that it only affects the elderly, two being that it only affects your memory) – I agree the disease needs to be “rebranded” and brought out into the light for more public attention.
It is part of the problem that everyone thinks there is nothing one can do about dementia.It is easy to just write the person off. However, the ageist attitude is simply inaccurate. Dementia is an overused waste basket term when someone is having cognitive difficulty. Often it is actually the result of something such as a medication, infection, hearing loss, depression or other factors that can be treated but are not considered because of the belief that it is “dementia” and there is nothing you can do. If one moves beyond the waste basket term “dementia” and looks at whether the person is experiencing word retrieval problems, problem solving difficulty memory loss, sequencing problems, etc. yoy can work with the problems therapeutically either to rebuild skills or compensate. People with dementia can learn. Until we have a better understanding of the disorder and what can be done about it, we cannot expect widespread enthusiasm about funding research.
There are so many misconceptions about Alzheimer’s (one being that it only affects the elderly, two being that it only affects your memory) – I agree the disease needs to be “rebranded” and brought out into the light for more public attention.
Overall, I liked your blog but I don’t believe there is a “need to stoke public fear.” I believe we need to continue building public awareness, concern and engagement and I do talk bluntly about how devastating dementing disorders. As we fight stigma and increase the public’s confidence that it can accelerate progress against dementing disorders, we all will continue to reduce fear and replace it with well-founded, outcome-oriented hope. I and the LEAD Coalition welcome everyone to our hopeful, optimistic, unrelenting, inclusive and growing movement.
Find us on Facebook at https://www.facebook.com/LEADCoalition, on Twitter at https://twitter.com/LEAD_Coalition and on our website at http://www.leadcoalition.org.
Well said Ian. “Stoke public fear” was my choice of words and intentionally provocative. I want advocates to know that that’s how it comes across sometimes when they use provocative language, like calling Alzheimer’s disease an “epidemic.” Alzheimer’s is not, as the dictionary defines epidemic, a “sudden, widespread occurrence of a particular undesirable phenomenon.” The occurrence of Alzheimer’s and increase in mortality is a simple fact of demographics, not the result of a rapidly growing infection. Your chances of getting Alzheimer’s disease today is the same as it was ten years ago, and in the future the odds are hopefully going to go down. That makes me hopeful and optimistic.
Sorry, Kavan. I couldn’t disagree with you more. This isn’t about “branding.” It’s about raising public awareness — which is exactly what you’re seeing finally begin to happen. Organizations like the Alzheimer’s Association, the Geoffrey Beene Foundation, Women Against Alzheimer’s, and others are now fully engaged in well-orchestrated campaigns aimed at informing/educating the public — as well as policymakers — about the looming crisis posed by this horrific disease. Indeed, even the media have begun focusing more on the issue. HBO’s critically acclaimed documentary “The Alzheimer’s Project” is an excellent recent example of how the entertainment industry is responding to the issue. And lest we forget, the 2008 Oscars included two Best Actress nominations for performances in movies dealing with Alzheimer’s disease and dementia. Given these and other recent treatments of the topic, I suspect we’ll see a growing number media outlets attracted to stories of a similar nature. (I wouldn’t be at all surprised to see some filmmaker soon undertake a project focusing on Glen Campbell and his battle with Alzheimer’s.) No, Kavan, this isn’t about branding. This is about letting people know the awful truth about this disease — that, as things now stand, if you live long enough, your chances of developing Alzheimer’s or some other form of dementia are greater than 70 percent.
Jim makes a good point — there has been an increase in media attention on this issue and a significant increase in public awareness campaigning by advocacy groups. These efforts can help build understanding and compassion — if they don’t focus exclusively on the negative aspects of aging and dementia. Unfortunately, I think they are overtly negative. I would point to Jim’s own language as an example of negative branding — “the looming crisis posed by this horrific disease” and the “awful truth about this disease”. Similar language is used to describe aging in general — to frame it as a disease — and to paint older people as a burden threatening to bankrupt society. I categorically reject those kinds of association for aging and I reject them for people living with dementia. I am 100 percent in support of researching dementia and doing everything possible to find a cure or preventative measures. But the cold hard reality is that dementia is not preventable or curable, it is a natural and inevitable part of aging. Millions of people live with it and millions more will live with it before a cure is found. I don’t think conditions related to dementia should be characterized as “horrific” any more than I think growing old should be called horrific. Living with dementia is a different way of living, a different way of being. The real horror, and the real awful truth, is how we currently treat most people living with dementia — we institutionalize and sedate them with dangerous drugs. As a society, we have the resources and compassion to help all people live a life worth living, regardless of their age or cognitive ability. I think that’s where we can all find common ground and reframe the conversation in a more positive light.
The intent behind this article is commendable, but I wouldn’t necessarily label the problem as “branding” so much as denial and lack of awareness. Also, I think fear and heartbreak are more accurate word associations; terror and disgust and loathed seem a bit disrespectful of people living with these diseases. Moreover, I’m not sure Alzheimer’s will ever have a positive brand association. But then, contrary to what you imply, neither do cancer, heart disease or AIDS. Here is my (perhaps jaded) perspective as a public relations and aging services professional: Lack of denial, increased awareness, empathy … and funding for Alzheimer’s will increase commensurate with its direct impact on policymakers and celebrities – the key influencers of public support for any cause. Because, unfortunately, I do not suspect those who are unaffected by this disease to ever be as indignant as those who are.