Alzheimers Association Transitions Information To Action

November 1, 2009       Michele Donohue      

When campaigning for his first term as president, Bill Clinton’s 1992 slogan "It’s the economy, stupid," was a simple statement that represented a complex problem. Nonprofits should use the example and adopt their own slogan — "It’s the awareness, stupid."

People know issues are out there — poverty, war, discrimination, natural disasters, abuse — but do they understand the need? And you can’t build a following of people volunteering, donating, and advocating if they’ve never heard of you.

The Alzheimer’s Association faced those problems. Nearly 90 percent of Americans know someone with Alzheimer’s, but most don’t realize the disease’s scale. Alzheimer’s ranks seventh in the 10 leading causes of American deaths according to the National Center for Health Statistics. Nearly 5.2 million Americans have Alzheimer’s, according to the Chicago-based Alzheimer’s Association.

"People don’t understand the enormity of the disease," said Angela Geiger, vice president of constituent relations for Alzheimer’s Association, who presented at an American Marketing Association Nonprofit Marketing Conference. She said that many people "think they know a lot more than they actually do," about Alzheimer’s, sometimes mistakenly associating the debilitating disease with minor memory loss. So, the Alzheimer’s Association created a full-scale, integrated consumer campaign to raise awareness about the disease and the association.

The organization’s first hurdle was showing people that Alzheimer’s was a devastating disease worthy of attention. During March 2008, the organization released its second facts and figures publication and dropped an informational bomb on the front cover — 10 million U.S. baby boomers will develop Alzheimer’s disease.

The report garnered 90 million impressions and was covered by USA Today, U.S. News & World Report, CNN and more. Geiger said the original publication in 2007 was the first time people had a single resource on all of Alzheimer’s effects, and the 2008 report was an informative catalyst for comprehensive media coverage.

With the healthcare debate raging, the 2009 Facts and Figures report highlight the fact that Alzheimer’s disease and dementia triple healthcare costs for Americans age 65 and older. There were more than 100 million combined media impressions for the 2009 Facts and Figures and an independent report released by Alzheimer’s Study Group released around the same time.

"We do look for messages that will breakthrough and make people take notice and think about it a little differently because the other thing we find is once people understand a little bit more about Alzheimer’s, they are far more willing to get engaged and take action," said Geiger.

The next step was to have people relate the fight against Alzheimer’s with the Alzheimer’s Association. The association made the facts and figures publication available to everyone, which helped solidify the organization as the expert voice on the disease. The association also worked with celebrity champions, such as David Hyde Pierce, Wayne Brady, Vivica A. Fox and Jean Smart, to speak out about Alzheimer’s. "Almost all of our celebrities have a personal connection" to the disease, said Geiger. The celebrities volunteer their time, and have even inspired community "celebrity" champions, like mayors and governors, to join the cause. Even Diamond Jim, the English springer spaniel that won Best in Show at the 2007 Westminster Kennel Club, has donned the celebrity champion title.

The association also ran an ad awareness campaign emphasizing that every 71 seconds someone develops Alzheimer’s, and that symptoms can begin in a person’s 30s. The Alzheimer’s Association Web site became a resource for people and families affected, providing information on the stages, warning signs, legal issues and more. The association segmented some information for children, African Americans, Latinos, and even providing information in Chinese.

But, the association wanted to go beyond information. It wanted to spurn action. "The most important thing the Alzheimer’s Association does is to move the cause of Alzheimer’s, and we do that whether it’s for research or advocacy, and also being the center for help and hope so that people can come to us when their families are facing this," said Geiger. "We knew two years ago as we started thinking about these things that we needed to do more to get people engaged in this cause, and so it really was about moving people from just being educated to being engaged."

The association launched its "action" site,, to urge people to do something about the disease. The navigation bar highlights the calls to action — write Congress, fundraise, donate and learn. The association also asks people to sign up as champions on the action site and the association’s Home Page, which went from only 35 weekly in March to more than 2,000 at the height of the awareness campaign in mid-April. It has reached more than 1.8 million sign-ups so far. Geiger warned that other organizations asking for sign-ups should test its placement — the association had a considerable dip when they moved the sign-up box lower on the home page.

Alzheimer’s Association has used new media to tell the stories of people affected. A town hall space was created on its site for people in the early stages and provides an outlet for user-generated content, including stories, pictures and forum discussions.

"The Alzheimer’s Association is really looking into the future looking at the fact that there is this tsunami that is headed to the shores of America that will affect 16 million Americans by mid-century," said Geiger, who suggested that other nonprofits should employ integrated engagement strategies. The association released a document chronicling the conversations held in the association’s the town halls conducted nationally, locally and virtually, to give a voice to those diagnosed early-onset Alzheimer’s about relationships, jobs, habits and life after diagnosis.

"When people talk about becoming an advocate for this, now I’m starting to learn why. Because I’m wearing the shoes now, where with other people I would just hear about it and I could turn and walk away," said a person at one town hall meeting. "So, I guess until our government actually hears from the ones who are going through it, or they suffer through it themselves, they’re not going to step up and take the bull by the horns." NPT