Throughout November we’ve been celebrating Alzheimer’s Awareness Month with a series of informational blog posts.
Today, in our second Q&A session with an Alzheimer’s expert, we’re sitting down with Carol Steinberg, the executive vice president of the Alzheimer’s Foundation of America.
Below, Carol talks about what drew her to the dementia field, and what’s going on now in Alzheimer’s awareness.
Q: Carol, what is your role in the Alzheimer’s Foundation of America and how long have you worked with them?
A: I’m executive vice president of the Alzheimer’s Foundation of America, handling various administrative roles, overseeing all communications and social services-related functions, and serving as editor-in-chief of care ADvantage, AFA’s free, quarterly magazine for caregivers of people with Alzheimer’s disease and related dementias.
I have been with AFA since its founding in 2002. So I have been in the very fortunate—and gratifying—position of helping to shape the foundation, including its programs and messaging, and to watch it evolve and undergo tremendous growth under the leadership of AFA’s CEO, Eric Hall.
Q: How did you get involved in the dementia field?
A: My involvement was really one of those “meant to be” moments. My dad passed away as a result of Alzheimer’s disease, and I recall at the time feeling so helpless and uneducated about the disease. Soon afterwards, by chance, the opportunity arose to get involved with Alzheimer’s disease on a professional level. I had been working as a freelance journalist for many years, and this opportunity felt like the right reason to switch hats.
Q: What’s the buzz about in the Alzheimer’s disease field?
A: The regrettable news is that there is still no cure for Alzheimer’s disease, and the latest research results on some promising drugs did not meet expectations—a big disappointment. This comes at a time when the incidence of the disease is skyrocketing.
The good news is that the nation has finally woken up to the enormity of this health crisis. Passage of the National Alzheimer’s Project Act and the subsequent release last May of the nation’s historic “National Plan to Address Alzheimer’s Disease” set the groundwork for tangible objectives related to research, clinical care and long-term supports.
The challenge all stakeholders face now is to put legs under the national plan through funding and private-public collaborations. At the Alzheimer’s Foundation of America, we’re pushing for even more…this is an unprecedented shot to change the trajectory of this disease and caregiving, and to ensure the current and evolving care-related needs of the growing number of families impacted by this disease are met.
Q: November is Alzheimer’s Awareness Month. How does this event fit into your organization’s mission?
A: The Alzheimer’s Foundation of America’s mission is to provide optimal care to families affected by the disease. AFA strongly believes that absent a cure, care makes all the difference. That is very dependent on awareness-raising and education. While this is our messaging year-round, we pump it up during November.
Despite the prevalence of the illness, Alzheimer’s disease is not water cooler conversation. We want to make sure it’s talked about, among family members, friends, colleagues — and, most importantly, in doctors’ offices. That’s the only way the needs of the population will be addressed.
Q: What special events is your organization holding to increase awareness of Alzheimer’s disease, improve quality of care, and support research to find a cure?
A: Given our care-focused mission, for the past decade, the Alzheimer’s Foundation of America has held two national initiatives each November — National Memory Screening Day and National Commemorative Candle Lighting. On National Memory Screening Day, the public can get free, confidential memory screenings and educational materials about memory concerns and brain health at about 2,500 sites nationwide. Many sites now offer screenings year-round as well. In the past decade, we’ve screened hundreds of thousands of Americans through this initiative. This event sets folks on the path toward proper diagnosis.
National Commemorative Candle Lighting as well as our ongoing AFA Quilt to Remember is our way of honoring people who had or have the disease. This disease can be so isolating, so initiatives like these let others know in a powerful and heartfelt way that they are not facing this disease alone. That means a lot.
One of our other significant initiatives is AFA Teens, a division to educate teens about the disease and engage them in the cause. When people think Alzheimer’s disease, they think older generation. But the younger generation is greatly affected, as many teens and young adults take on very adult responsibilities in caring for parents, grandparents and other relatives. Their commitment, their fears, their raw emotions can break your heart.
Q: Alzheimer’s disease is a very complex illness. What are the most significant points of information you hope to convey to those adults with Alzheimer’s, and their caregivers?
A: First, we can’t stress enough the importance of early detection. Reporters ask all the time, why know if there is no cure? The reasons are clear. Most of all, not all memory concerns mean Alzheimer’s disease; they could indicate other medical conditions, some of which are reversible. And if the memory problems are due to Alzheimer’s disease, don’t just take the diagnosis and run. It helps to get educated, get treated, get long-term care wishes known, and get support services.
Second, caregiver burnout is very real. The responsibilities of caring for loved ones with this disease are overwhelming. 24/7 is an understatement. Adding to the physical toll, the emotional toll of this disease is enormous. My mother was like many caregivers out there who think they can do it all alone; then the time comes when they must let loose, even if only a little, of the strings. Squeeze in some time for yourself. It’s critical to do so because caregiving can impact a caregiver’s own health. There are myriad services out there, social workers to talk to, support groups to go to—and caregivers should take advantage of these supports.
Q: If individuals would like more information from the Alzheimer’s Foundation of America, where would you direct them?
A: The Alzheimer’s Foundation of America has a toll-free help line, with licensed social workers who are available by phone, e-mail, and even live chat and Skype: 866-232-8484 or firstname.lastname@example.org. Also, AFA has a network of Web sites, all linked from our main site: www.alzfdn.org. I also encourage people to sign up for our free caregiver magazine, care ADvantage, at www.afacareadvantage.org.
Carol points out that early detection is currently one of the smartest, most proactive things we can do as a society in the fight against Alzheimer’s Disease. Looking for memory screening for you or a loved one?
Visit the Alzheimer’s Foundation of America’s memory screening guide here to locate a screening site near you.