The fight against Alzheimer’s disease in West Texas has a new leader.
After working with the association for 19 years, Denese Watkins has retired and handed the reins to Susie Gorman, who served as the local association’s development director.
Alzheimer’s disease is on the minds of many over 50 these days and for good reason. The statistics are mindboggling.
Of Americans aged 65 and older, one in nine has Alzheimer’s disease, according to the association. And the number of people diagnosed with the disease is growing as more baby boomers turn 65, the age at which people are at increased risk for developing Alzheimer’s.
It is now the sixth leading cause of death in the United States and is expected to cost the nation $214 billion this year – $1.2 trillion a year by mid-century if nothing changes.
There are new drugs that temporarily ease some symptoms of the disease, which causes memory loss, but there is no cure.
Scientists don’t know exactly how the disease forms. There is nothing to slow the progression of the disease or prevent it, and the outcome is always death.
Gorman took over as regional director in December and is responsible for the association’s West Texas region, which includes the El Paso, Amarillo, Lubbock and Midland offices. She oversees a $1-million budget.
Gorman, a native El Pasoan, has volunteered in the nonprofit sector here for about as long as she can remember.
Today, she is a member of the Junior League of El Paso, Executive Forum and Pan American Round Table. She was inducted into the El Paso Women’s Hall of Fame in 2012.
Gorman is married to Patrick W. Gorman, who owns Gorman Industrial Supply, and has three grown children and three grandchildren.
June is national Alzheimer’s and Brain Awareness month and, to Gorman, there has never been a more pressing time than now to raise awareness and raise more money for research. Gorman hopes El Paso businesses will “go purple” to show their support.
She sat down with El Paso Inc. and talked about the progress made fighting the disease, the cost of Alzheimer’s and what the association does to help.
Q: Has any progress been made over the past five years in understanding Alzheimer’s, finding treatments or raising awareness?
The brain is a very, very complicated thing, so you can imagine the difficulty researching the disease. Awareness has grown significantly, and as the facts and figures get out there, people want to know more.
With that awareness all these other things start coming into play – people start donating more, more research can be done and treatments discovered. Since I’ve been at the association the last five years, I’ve seen that change.
I’ve also seen the association change. They have always focused on care and support – and still are. However, you see a push to increase funding for research to find a cure, because if they don’t find a cure, this disease is going to be out of control.
Congress is listening, and President Barack Obama’s 2014 budget proposal includes $100 million in additional funding.
Q: How high are the costs to American society of caring for those with Alzheimer’s?
It will total an estimated $214 billion this year, including $150 billion in costs to Medicare and Medicaid. But that’s only the direct costs. The disease is devastating, and the impact extends to families and caregivers.
There are a lot of reasons to fight this disease. One misconception that people still have about Alzheimer’s, I think, is it only hits old people, and that’s not true. They are finding that if you are 65 or older, you are at more risk for the disease. And 65, my gosh, that is not an old person.
Q: How important is it to get an early diagnosis?
It’s so important; it is the most important thing that you can do. As of right now, there is no prevention and there is no cure. So the only thing we can do is catch it at an early stage and manage it with medication.
Q: There are drugs available?
There are five that the U.S. Food and Drug Administration have approved for use. They can help with some of the symptoms but do nothing for the underlying causes.
Q: What are the warning signs?
When memory loss starts to affect day-to-day routines. One woman who is a big advocate for the Alzheimer’s Association, perfect example, was driving home one day on the same road she had driven for 20 years, and she got to a stop sign and had no idea where she was or where to go from there – just that fast.
There are nine other warning signs, including challenges in planning or solving problems, difficulty completing familiar tasks and confusion with time or place.
Q: How does one distinguish early signs of Alzheimer’s from simply being, say, forgetful? Perhaps I have had too much on my plate, have been stressed, and just need to slow down and get more sleep.
Sometimes it’s as simple as you lost your keys and pretty soon you find your keys but you don’t know what your keys are for. Or you can’t find your keys and you’re running around the house and they are in the refrigerator. We all will do things like that on occasion, but it is when a lot of things start adding up and affecting your life.
Q: What are some things you wish more people knew about Alzheimer’s? Is there any old thinking or old wives’ tales you see often?
Probably the biggest misnomer is just the idea that everybody gets forgetful when they get old and that Alzheimer’s is just a normal sign of aging. That’s not true.
You don’t have to be old to get Alzheimer’s disease. There is an umbrella disease that is dementia and Alzheimer’s is a form of dementia – it’s fatal.
Absolutely. The only thing you need to have to put you at risk for Alzheimer’s disease is a brain.
Q: Although there are risk factors.
Nearly two-thirds of those with Alzheimer’s disease are women. They are finding woman in their 60s, for example, are two times more likely to develop the disease than they are to develop breast cancer.
Right now, there are 5.8 million Americans living with Alzheimer’s disease, but for whatever reason it is also escalating and growing.
Q: What are the organization’s needs right now? What are some ways people can help?
Donate and volunteer.
Q: How is fundraising going?
Good. People are very generous in El Paso. The more people contribute the more we can get the word out, and the more we can get the word out the more people want to contribute.
Q: What is the West Texas chapter’s budget?
Our West Texas budget is about $1-million dollars. We raise all the funds locally for everything we do here. We are not funded nationally. In other words, our money goes up.
Q: How much did the El Paso office raise last fiscal year?
El Paso raised about $552,000 in fiscal year 2014 towards the West Texas chapter’s budget. The strategic plan calls for doubling the association’s revenue by 2019. We continue to increase our revenue by identifying new revenue streams including foundations, events and partnerships.
The money that we raise goes to programs and services. It’s not administrative; it’s not here for fancy offices. Nationally, only about 6 percent of the money raised goes toward administrative costs.
Q: What makes Alzheimer’s so frightening?
Right now, it’s a death sentence. It’s like when AIDS first came to the forefront. People were afraid. You didn’t talk about it; you didn’t tell anybody you had it. It was a huge secret, and it became an epidemic.
Once people started talking about it and started standing up and saying we need to do something about it and it went public, things began to change. And that’s what we need to do with Alzheimer’s.
So, for example, from 2000 to 2010, the number of deaths from breast cancer were down 2 percent, heart disease was down 16 percent and HIV was down 42 percent, but Alzheimer’s disease was up 68 percent
Q: Those are the big causes right now – cancer, HIV/AIDS and heart disease. How does spending on Alzheimer’s research compare?
The National Institutes of Health, for example, spends more than $6 billion a year on cancer research, and it spends $480 million on Alzheimer’s research.
Q: You’ve worked in the non-profit sector for quite some time. Why?
What really started me on my path was becoming a member of the Junior League of El Paso. My mom was always real involved when I was a kid, so it was just in my family. My husband’s family has always been extremely involved in the community as well. So I don’t know why; it just came naturally.
As I learned more about this devastating disease and saw firsthand the toll it takes on families, it was obvious to me that I had to help in the fight to raise awareness and funds and to do my part in finding a cure.
Q: What is the purpose of Alzheimer’s and Brain Awareness month and what is the local association doing to mark it?
It is an opportunity for the association to raise awareness, and we’re trying to get businesses to go purple, trying to increase education, community outreach and programs.
Businesses can also sign up for the Alzheimer’s Workplace Alliance, which is an education program businesses can do to raise awareness among their employees.
We have to raise awareness about the skyrocketing cost of Alzheimer’s. There’s a lot you can do. Contact your congressman to advocate for more research dollars.
Q: What are your goals, your vision, for the local organization?
Our fiscal year and our new strategic plan start July 1. We have got to grow our revenue locally. We have to do a better job at reaching more people, so we are developing a plan to do that.
We’ve got to increase our volunteer base so there are not two of us talking, but there are 20 of us talking. We’ve got to do a better job of serving those with early stages of the disease.
Q: What is your advice for caregivers?
They need to take care of themselves and reach out for help; we have support groups they can take advantage of. Caregivers sometimes stop caring for themselves because all their time and energy is focused on helping the person with the disease.
Q: How do you plan for a future with Alzheimer’s whether you’re a loved one, caregiver or the person with the disease?
The Alzheimer’s Association has a program called Living with Alzheimer’s, and it’s for different stages of the disease. There are sessions on financial planning, end-of-life and on legal issues.
Q: I imagine it can be quite a financial burden?
I’ve had people tell me that they’ve cashed in their retirement, sold property and such just to cover medical expenses and facilities.
Q: What is the situation in El Paso with nursing homes for people with Alzheimer’s?
They are running full and there are several of them that are adding beds.
Q: What have you discovered, what has surprised you, since becoming involved with the Alzheimer’s Association?
When I first started here and I saw individuals bring their families in… I had no idea about the impact until I started seeing people and hearing their stories. Early on, we had a missing person. They searched and searched and search, but it ended tragically and they found him dead.
I was told that you lose your loved one twice with Alzheimer’s disease. So you lose them to Alzheimer’s first and finally to death.
Q: What does the association do to help?
The Alzheimer’s Association is the largest awareness and education organization for Alzheimer’s disease. We’re also the largest funder of Alzheimer’s research dollars, and we provide support for caregivers.
Here locally we have all sorts of things going on. We do our Walk to End Alzheimer’s every year. We also have the “Longest Day” fundraiser held on June 21 (the longest day of the year). It is a sunrise-to-sunset team fundraising event. We also do a spring gala.
We have a great volunteer base of speakers who will make presentations to companies and other groups. We are in the process of putting together a program for people with early stage dementia with the El Paso Museum of Art. There’s no charge for our education services or anything we do.
We need to raise awareness about this disease, and I think that is the first thing we need to do. We are the brains behind saving yours. Our vision is a world without Alzheimer’s disease, so that’s where we’re going.
Q: Do you think that will happen?
I really do. There are a lot of really great things happing and research being done. So, you know, I do believe we can put ourselves out of work here at the Alzheimer’s Association.
E-mail El Paso Inc. reporter Robert Gray at email@example.com or call (915) 534-4422 ext. 105.