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 Teepa Snow and 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?