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By Caitlin Byrd on 02/14/2012 02:00 PM
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It’s known as the silent killer, capable of annihilating a person’s cognitive function within a matter of years. Destroying brain cells and wiping memories, Alzheimer’s disease affects more than 5.4 million Americans each year. It affects people as young as 35, though they’re usually past 65. In short, this is a killer that must be stopped, says Harry Johns, president and CEO of the Alzheimer’s Association, a national nonprofit based in Chicago.

“The part that’s been most missing in Alzheimer’s is the federal commitment — particularly in research, but also across the board in care, support and long-term services. There’s been a lack of attention to Alzheimer’s in general,” he told an audience of about 75 people at a Feb. 2 town-hall meeting at Deerfield Episcopal Retirement Community.

That’s no news to Dr. Margaret Noel. Twelve years ago, she founded MemoryCare, an Asheville nonprofit providing medical care for adults with memory loss and support for caregivers as well as educating the community at large about Alzheimer’s and other forms of dementia. “I’d always dreamed of being able to care for the family at the same time we care for the patient,” Noel explains.
Mountain Xpress: How did it feel to be appointed to the Alzheimer’s Association’s board of directors?
Margaret Noel: It’s a wonderful opportunity. When I started MemoryCare in 2000, the executive director of our WNC Chapter of the Alzheimer’s Association, Joe Connolly, was one of our founding board members. We’ve worked so closely together, and I believe deeply in the work they do. The educational materials and the support groups for families are things we use every day. ...

I’m very much a locally focused individual and might even have been a little surprised that they’d consider somebody who’s more community-based and not on the national scene already.

Why did you decide to start MemoryCare?
I’m trained as a geriatrician, and when I started my practice in Western North Carolina in 1989, nine out of 10 people who came to see me had memory problems. We really didn’t have another place where they and their whole family could go to get integrated care. I think that’s the only way you can care effectively for people with memory disorders.

Why is it so important to include caregivers in national decisions about Alzheimer’s?
I see what caregivers do every day as a quiet kind of heroism. We can’t cure this disease at this time. It’s a long journey, and I am so proud of our program and the people who work every day to try and make it a little easier for these families and the patients they care for.

Are you concerned about how rapidly the number of people affected by Alzheimer’s is growing?
It would be my great hope that it becomes a national priority. The amount of research funding from the NIH is tiny, considering the scope of the disease and how many people are going to have this problem. So I’m all for our country having a strategic plan that is funded to care for these families. For the next 20 years or so, I think a cure is unlikely. So with age being the primary risk factor and the baby boomers hitting their 60s, it’s likely that we’ll have to all go through it with care rather than a cure.

Coming from a community-based focus, what do you think you will bring to the national level?
Every day all I do is see patients with Alzheimer’s disease or other dementias and their family members. I think I can bring that perspective: I have their stories; I have their needs at heart. I think I can help work to bring effective support, information and education to these families. I’d also love to see more support for primary-care physicians, so they can help these families. It’s going to take everybody to deal with this disease: The more we can wake everyone up to what an important issue this is, the better.


Her work and dedication haven’t gone unnoticed, though: Noel was recently appointed to the association’s board of directors (see “Q&A with Dr. Margaret Noel”). In fact, that was the main reason Johns visited Asheville. But he took time to speak at the town hall meeting, believing open dialogue is essential concerning a disease that affects roughly one in eight Americans.

“We’re out there trying to mobilize everyone we can to raise their voices on this topic, to let the administration know — and let Congress know — that we need to create a strong plan, implement that plan, and we need to do it sooner rather than later,” Johns declared. He urged people to sign a petition calling on the president to fulfill the promise of the National Alzheimer’s Project Act, unanimously approved by Congress more than a year ago. Although the law called for creating a national strategy to combat the disease, it did not provide any additional funding for research.
1. Memory changes that disrupt daily life.
2. Changes in ability to plan or solve problems.
3. Difficulty completing familiar tasks.
4. Confusion about time or place.
5. Trouble with visual images and spatial relationships.
6. New problems with speaking or writing.
7. Misplacing things; losing the ability to retrace steps.
8. Decreased or poor judgment.
9. Withdrawal from work or social activities.
10. Changes in mood and personality.


“If we don’t do it soon, we’ll lose a whole other generation to this disease,” pleaded Johns.

— Send your local health-and-wellness news and tips to Caitlin Byrd at cbyrd@mountainx.com, or call 251-1333, ext. 140.

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