Alzheimer’s is a word most of us have heard, but how many of us know much about the disease itself?
Alzheimer’s disease (AD) is an irreversible progressive brain disease that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks of daily living. In most people with AD, symptoms first appear after age 60. According to recent estimates, as many as 2.4 million to 5.1 million Americans have AD, with numbers expected to grow with the growth of the population. Today, there is a worldwide effort under way to find better ways to treat the disease, delay its onset, and prevent it from developing.
One organization actively working to raise awareness and support for this disease is the Alzheimer’s Association, started in 1980. With a mission to ‘eliminate Alzheimer’s disease through the advancement of research, to provide and enhance care and support for all effected, and to reduce the risk of dementia through the promotion of brain health,’ today, the Association reaches millions of people affected by Alzheimer’s across the globe through its national office and more than 75 local chapters. As the largest donor-supported, voluntary health organization for Alzheimer’s, the Association is a catalyst for advancements in Alzheimer research and care.
One local chapter, the Alzheimer’s Association of Greater Maryland, began as a tiny organization with a staff of one and a budget of $60,000. Executive Director Cass Naugle’s personal involvement with Alzheimer’s took a circuitous path. After finishing her undergraduate program, she started her career in long-term care facilities and in VA facilities, working as a recreation therapist.
“I was drawn to people with dementia because they seemed to have a low priority in the facilities. There was little information about them, but I was very interested in how their brains worked and how I could help.”
In the meantime, Cass continued work on an MBA at night, and in 1986 heard of a part-time job of a new organization looking for its first staff person—that organization was the Alzheimer’s Association. She jumped at the opportunity to start and build a new organization.
“I wanted to stay in the not-for-profit sector but it was difficult to find meaningful programs of study. I found I had to expand courses with independent study or internships. Last year I completed the program at the Erickson School [at the University of Maryland, Baltimore County], an M.A. in the Management of Aging Services. This is the first time in my educational career everything came together. The coursework at Erickson challenged me to rethink the ways the AA should understand the growing numbers of people who believe they might have Alzheimer’s and are trying to get information and treatment ahead of any of the notable symptoms.”
“The classes there were amazing,” Cass reports, and the degree gave me a much broader perspective about how to plan and implement programs. For example, we’ve seen a real growth in the number of people calling our office who are in the earliest stages of the disease and want to get involved and educated – which in itself is a big cultural change. In the past, I’d have looked at the change from a ‘programatic’ standpoint, through development of programs and staff. But after my training, I really saw this as an opportunity to get this new group of people involved in education, in influencing policy, in fundraising, … because they still have skills and they want to make a difference; they contend with the disease. This change to our organization has been quite exciting.”
Although Cass had no family members with Alzheimer’s at the time she began work with the organization. Since beginning her work, though, both her parents have died from the disease, further increasing her desire for understanding and awareness.
Naugle gives the national Alzheimer’s Association rave reviews. “Because we needed to keep a unifying message, we probably spun our wheels for quite a while. Our national office was a big help with such things as preparing surveys and testing messaging to determine what best resonates with what groups.”
One particular audience, labeled their “Champions,” consists of more women than men, ranging in age from 49-59. This group is engaged in advocacy and fund-raising and is more likely to talk with family and friends about health issues. MDAA also tries to reach public policy officials to enlist change within public policy perimeters. Another audience includes those impacted by the disease, families giving care or those in early stages and lastly, health professionals who must kept up to date on issues involving Alzheimer’s.
A variety of media helps MDAA connect with these various audiences: newsletters and email blasts, e-newsletters, and. A PR contract provides print, TV, and radio coverage. “I think what’s changed most with our organization is a specific focus on what message we want to present and which audience needs to receive that message. Lots of people know about Alzheimer’s, but they don’t know about our organization. It’s a misunderstood disease and not appreciated for its urgency, given the number of people affected.”
With their Champions in mind, the national organization recently released a report by Maria Schriver about the impact of Alzheimer’s disease on women, both as caregivers and as people affected. Additionally, a ‘’ is held in 6 locations in Maryland during the fall months. “We reach out not only to families impacted and health-care professionals, but to the broader community as well. We’ve even had teams from companies when the founder of their businesses or colleagues were diagnosed with Alzheimer’s.”
To affect public policy and government, MDAA hosts an annual action summit in Washington DC for training and visits to Capitol Hill. “This is a long-term disease, and the costs of long-term care are extremely high.” Involvement with government organizations at the state level to improve care and support and at the federal level to increase Alzheimer’s research funding and also to get more national urgency on this issue have proven to be the best means of garnering support.
For health-care professionals, MDAA holds conferences and has developed a program called ‘Trial Match,’ a user-friendly way for people to learn about research trials they may be eligible for. “This information can then be passed on by health-care professionals to patients or clients.”
Like many non-profit and health agencies, a good deal of MDAA’s budget comes from special events. Cass says they attempt to focus not only on fundraising, but ‘friend raising’ as well – educating people about the cause. They host a[April 16th in Baltimore! Ed.], a kind of ‘Dancing with the Stars’ event, where people can take dancing lessons then get friends and constituents to vote their dollars for them online. “It’s a fun thing, and puts a different ‘feeling’ with this disease besides devastation.”
In spite of these measures, MDAA in the current economy still faces challenges. Donor fortunes have fallen, with a domino effect for the organization. Although things may be getting slightly better, Cass feels it’s going to take a while for people to finish off paying off debts and increase their savings before they feel they’re in a position to give at the levels they gave before the economic slowdown.
“Although we’ve able to streamline our operations, the economy has forced us to make some decisions we wouldn’t have made otherwise, but that are nevertheless good management decisions. I think we’re probably in a better position to go forward because we’re leaner and meaner – like a lot of businesses.”
Another looming challenge will be dealing with the influx of aging Baby Boomers—which will result in even larger numbers requiring assistance from MDAA. There are about 5.3 million Americans with Alzheimer’s today, but by mid-century that number could be as high as perhaps 13.5 million.”
Cass believes the work has to begin now, before the next generation of those who will have to deal with Alzheimer’s. “We need to put funding into research and treatments to identify the disease before too much brain damage has occurred, so we can head it off and increase functioning or perhaps even prevent the disease entirely.”
Strides toward this goal are taken every year, with some of the recent successes including the passage of the National Alzheimer’s Project Act in 2011, the inclusion of objectives for Alzheimer’s in the, a new Medicare benefit which began in 2011, and the elimination of the Social Security Disability two-years waiting period for those diagnosed with younger or early-onset Alzheimer’s.
As they continue to stay abreast of technological changes that will not only keep the next generation informed about this disease but may help eradicate it as well, MDAA remains true to the vision of their national organization, ‘A world without Alzheimer’s.’
See what Cass and UMBC are doing to create a new generation of professionals to address the needs of an aging population:
Written by Cate Richard. Interview and additional research by Christopher Gardner.