Alzheimer's disease has touched many lives: an estimated 5.1 million adults in the United States has the neurological disease, according to the Alzheimer's Foundation of America (AFA). As the disease progresses, patients have impaired cognitive skills, and require help to perform basic daily activities in the late stage of the disease. To bring awareness to this devastating disease, the AFA is hosting the “Together for Care” telethon on December 4th, which will broadcast on NBC's 16 major markets and on the AFA's website. Hector Elizondo, the honorary celebrity chairman of the AFA, opens up to EmpowHER about his personal connection to Alzheimer's disease, and he and Eric J. Hall, the founding president and the CEO of the AFA, discuss “Together in Care.”
Your mother suffered from Alzheimer's disease. What did that experience teach you about Alzheimer's disease and how has that shaped your advocacy for Alzheimer's disease awareness?
Hector: When my mother, as well as her four sisters, had Alzheimer’s disease, we were truly in the dark ages. No one spoke about the disease. There weren’t support services available like there are today. We really were alone—and we were overwhelmed. That experience taught me that you have to face a disease like this head-on. Having lived through the devastation with my mother and my father as a caregiver, I am doing my all to urge others to get assistance. People need to know everything they can about this disease so they can understand what to expect as it progresses. They need to find out about all the available resources so they don’t have to face this alone.
What advice could you give to sons and daughters out there who have parents with Alzheimer's disease?
Hector: My advice is pretty simple. Families need to pull together and work together. It’s important to, if you will, share the care and also to reach out to help to national and local resources. It’s not only the day-to-day responsibilities of caring for a loved with Alzheimer’s disease that are tremendous. It’s also that the emotional toll is enormous. My dad thought he could do it all himself. Maybe it was a “man” thing or because at the time no one really spoke about Alzheimer’s disease. My father ended up passing away before my mother, and I think it had a lot to do with his overwhelming role as a caregiver. So it became not one tragedy, but a double tragedy for my family.
On December 4th, you will leading the celebrity lineup for the AFA's “Together for Care.” What are your hopes for this telethon? Who will be joining you?
Hector: I hope the AFA’s “Together for Care” telethon chips away in a big way at the fear, the stigma and the misperceptions that surround this disease, and rallies the nation to donate to support the needs of the Alzheimer’s community. I hope people really open their wallets and give because the need is tremendous.
The telethon will both educate and entertain. The educational content is very compelling and will give the public insight into Alzheimer’s disease—what it’s all about, who it affects and the help that’s available. One segment, for example, highlights a man who was only in his 40s when he was diagnosed. I recently had the honor of meeting him, his wife and his two teenage children. Their story is heartbreaking and epitomizes why we’re doing this telethon.
The show is hosted by Al Roker and leading celebrities will be performing or making appearances. The outpouring of support from celebrities has been tremendous. Wilson Phillips, for example, is among the performers. Presenters include some folks from “30 Rock,” Olympic great Carl Lewis, Nikki Blonsky and Wendy Williams.
“Together for Care” is the first telethon for Alzheimer's disease. What are your hopes for this event in terms of awareness and fund-raising?
Eric: We want all eyes to turn to this cause and to make the public understand that this is a disease to be reckoned with: it is the health crisis of the 21st century. Our impressive lineup of celebrities involved in the show will help tremendously in driving home this point. Our objective is to educate people about the disease and let people know that help is available. We’re encouraging viewers to reach out to the AFA for counseling, educational resources and referrals to local organizations. We also hope to raise funds for programs and services nationwide, and research through our strategic partners. Americans need to know that for now, there is no cure for Alzheimer’s disease, but care can make a difference.
What do you think are the biggest misconceptions people have about Alzheimer's disease? What do you hope they can learn from events like “Together for Care?”
Eric: Many people still think Alzheimer’s disease is a normal part of aging. It’s not. While advanced age is the greatest known risk factor, Alzheimer’s disease doesn’t happen to everyone just because they are older. Alzheimer’s disease is a disease. Also, many people think Alzheimer’s disease only happens to the older population. But this disease, unfortunately, does not discriminate. While the majority of people with Alzheimer’s disease are 65+, there are people in their 30s, 40s and 50s with a rarer form of the disease, known as young onset. Alzheimer’s disease poses incredible challenges and heartache for individuals of all ages, but it is particularly devastating when it strikes at a young age.
Lastly, there are misperceptions about what can be done to deal with this disease.
There is no cure, but there are ways to cope: there are medical treatments available that may help slow progression of symptoms and there are support service, like those the AFA offers, that can also help improve quality of life. The key is to not sit idle. People of any age who are experiencing signs of memory loss need to raise the issue with their doctors. People who are ultimately diagnosed with Alzheimer’s disease need to reach out for help. Hopefully, our “Together for Care” will send that message loud and clear, and wake up the American public to be proactive.