Gary Barg:  What is the mission of the Alzheimer’s Foundation of America?

Eric Hall:  At the time that I established the Alzheimer’s Foundation of America back in February of 2002, there was an enormous amount of discussion around a cure for Alzheimer’s disease and I, like everyone else, hope that there is a cure; that there is something that is disease-modifying that comes down the pike which will make Alzheimer’s disease a non-issue. 

However, at that time and even now, I did not find enough emphasis being placed on the caregiving aspects.  There were few organizations that were answering my questions like what do we do now or what do we do in the meantime until we find a cure.  So the Alzheimer’s Foundation of America was established to address some of the gaps we found within our nation. 

So, first and foremost, we established national memory screening day, which was really meant to take a look at the issues related to memory problems; not diagnosing Alzheimer’s at all, but simply using it as a point of education.  That program led to many others including a program that trains professionals.
There is a Web site to help teenagers. Some of our research found that out of all the caregivers for people with Alzheimer’s disease, a good portion of them happen to be kids who are caring for their loved ones with this disease.  So, wherever we found that there was an issue or a gap, the Alzheimer’s Foundation of America has tried to address that and make something happen in that regard.

Gary Barg:  One of the major initiatives of AFA is the Quilt to Remember, which you displayed at our Miami event in April and Minneapolis in May.  Can you talk about the quilt—why it was started and what the goal is?

Eric Hall:  Yes. You know as well as I do that people with Alzheimer’s disease simply do not have a voice.  They are not able to go and speak in public.  They are not able to speak about their experiences or try to rally a nation around this important cause and this crisis in our country. 

Additionally, caregivers are so involved in the 24/7 care of individuals with Alzheimer’s disease that really there is no advocacy for this population unless individuals like you and I step up and start speaking on their behalf.  I was trying to find a way that would be more powerful; a way that was really pointed and a way that would memorialize and be a tribute to individuals with Alzheimer’s disease. 

We are all very familiar with the AIDS quilt back in the 70s, 80s, 90s. That was an incredible testament to the needs, to those individuals and to their families.  So the Alzheimer’s quilt really is a simple extension of that. 

Here is a population that does not have a voice, and yet now families can contribute 4’ x 4’ panels; organizations, facilities and care facilities all over the country can contribute panels. These panels that make up the quilt are able to travel throughout the country.  Every week, portions of it are shown in different parts of the country. 

It really is an opportunity for the community, as a whole, to come together and to be supportive; and also to recognize that there are real people connected to this dreadful disease. 

Gary Barg:  We are, frankly, very proud to be able to bring pieces of the quilt around to different parts of the country because I have seen firsthand how it stops caregivers and touches them.  Hopefully, they will decide to make a quilt for their loved one. 
 
Eric Hall:  Yes, for sure.  Absolutely.  People get it and people get the sentiment around it.  There is always a sense of reverence around the panels.  There are no signs that say silence please, but everyone who encounters the quilt always approaches it with a sense of reverence and dignity and respect. I think it is simply because of the lives that are detailed within. It has been a great opportunity to bring it to your caregiver conferences and we look forward to doing so throughout the future too.
 
Gary Barg:  How can caregivers and caring organizations get involved in the works of AFA?
 
Eric Hall:   AFA serves as a network.  I am not sure you know, but there are now about 1,600 organizations attached to us from across the United States.  We grew by almost 300 organizations last year alone.  I think that says something about AFA perhaps, but I think the bigger thing that it speaks to is the fact that the crisis is getting to a point where organizations simply need one another to meet the needs of this population. 

I do not think any organization in our country has the ability to handle what presently is in the world of Alzheimer’s disease and the needs of the present population, not to mention what is coming.  My theory simply is we are much more effective doing this side by side.  We are much more impactful sharing our resources.  We are better utilizing our strengths and finding out the strengths of other organizations and collaborating for the good of the population.  It also concerns resources, including financial resources, and I think what we have been able to do is simply say, listen, we will serve as that center point. 

We will allow organizations to share best practices.  We will allow them to collaborate and work together.  We, at a national level, will help design national initiatives like National Memory Screening Day or the new brain game challenge that is being rolled out in 2011. 

All of these are simply ways for organizations, at a local level, to benefit from exposure and the national initiative with no real benefit to AFA directly or financially.  We are simply trying to help organizations be the most that they possibly can.  So I think organizations who are interested can come and collaborate with us in whatever area or concerns they would like. 

Then I think for caregivers, just realize that our Web site is an incredible resource of information—literally hundreds of pages about Alzheimer’s disease and related illnesses, behavioral problems, early diagnosis and caregiving tips.  We have a wealth of information that is available. 

So, folks should know that that there is a resource available free to them. You can find more information about us and our member organizations on our Web site—volunteering, lending a hand, perhaps making a contribution are all ways that make this organization successful.
 
Gary Barg:  What is the most important piece of advice you would give to a caregiver?

Eric Hall:  I think it comes down to this.  There is nothing in our life that has ever prepared us to care for anyone with Alzheimer’s disease.  It takes education.  It takes resources.  It takes support.  So you need to reach out to find those for yourself so that you can be the most effective caregiver you want to be.
 
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