In the minds of many, Alzheimer's disease is the worst that can happen to a person - worse than cancer or AIDS, because there is no cure, and the outcome is always death.
With no known cause or cure, Alzheimer's disease is a very real boogeyman, the cause of nightmares for people over 50, and for good reason.
Deaths from Alzheimer's rose 66 percent from 2000 to 2008, while breast and prostate cancer, heart disease and stroke took fewer lives, led by HIV, which dropped 29 percent because of new drug treatments.
"Alzheimer's is the only cause of death among the top 10 in America without a way to prevent, cure or even slow the progression," reads a fact sheet from El Paso's Alzheimer's Association.
Denese Watkins came to the association in 1995 for the same reason most people do: out of concern about a parent who was quickly forgetting how to do things she loved to do.
As her mother's condition declined, Watkins' involvement with the association grew, and two years later, the board offered her the nonprofit's only paid position.
During her tenure as executive director, the Alzheimer's Association has grown dramatically in El Paso and was, at one point several years ago, overseeing services and organizations for 60 percent of Texas.
El Paso's Alzheimer's Association merged with the national organization in July and now oversees operations in West Texas and the Panhandle.
November is National Alzheimer's Disease Awareness Month, and to Watkins, the need for research dollars and a medical breakthrough has never been greater, as the nation struggles to care for a new generation of 70-somethings.
Watkins sat down with El Paso Inc. to talk about the disease that took her mother's life, the work of the nonprofit association she directs, and how people in their 30s are being diagnosed with the Alzheimer's.
Q: There is nothing quite as frightening as Alzheimer's disease. Why is it so scary?
Because you lose yourself. If you have another disease, you may have pain, you may have difficulties, but with Alzheimer's disease, you lose your memory as to who you are. You look at yourself in the mirror and you no longer know who you are. That's why.
Q: What is the incidence of Alzheimer's nationally?
It's estimated at 5.4 million nationally. Up to half a million of those are under the age of 65. We're seeing more younger people in their 30s, 40s, 50s.
Yes. I heard a woman speak about it this year. She was 32. Her husband has Alzheimer's. She had to quit her job. They have two children, 6 and 4.
Researchers tell us we have Alzheimer's probably 20 years before it manifests, so it's a disease of the young that manifests in the old. So people need to stay as healthy as they can.
Q: Are women more likely to get Alzheimer's?
Yes, two-thirds of Alzheimer's victims are women.
Q: What about African Americans and Hispanics?
The Hispanic population is said to be at one and a half times the risk of the white population, and African Americans are twice as likely.
Q: What are the warning signs?
Memory. But it's not just forgetting something. It's forgetting what things are for. You may lose your car in the mall parking lot and not be able to find it for a while, and that could be stress.
Not remembering how to do things that you did very easily, like make gravy or crochet.
Problem solving and getting real agitated with having to solve a problem that may have been easy before.
Confusion with time or place. Time seems to change for them. A lot of people with Alzheimer's will sleep for a few minutes and think they've slept their eight hours.
Driving or walking and getting lost. We've had a lot of wandering incidents here, and some that didn't turn out so well. You may have someone who walked to the same park or store everyday of their life, and all of a sudden one day, they don't know how to get back. And you don't know when that'll be.
That's kind of an early sign because if you're walking and you're functioning, that's the early stage of the disease. It's really important for families to realize early on that they need an early diagnosis and to be aware of these things.
Q: How do doctors diagnose Alzheimer's?
Doctors rule out things. They do blood tests, CAT scans and different kinds of tests to see what else is going on.
You can have dementia from a vitamin B-15 deficiency. You can have it from strokes. You try to see if there's anything else that could cause the dementia.
They ask questions until they get a good picture. They used to say you couldn't get a good diagnosis without a brain autopsy, but there is so much more information right now that a doctor who is aware and knowledgeable can pretty well, say 97 percent, diagnose the disease.
Q: What do we know about prevention? What can people do to reduce their chances of Alzheimer's?
Exercise, eat well and think well. And in my opinion - not from research - we all need something to look forward to. I think we all need something we all wake up for that gives us the energy to get up and go through our day.
I think a lot of the messages we have about retirement or age are not that exciting, so we need to create that for ourselves, so we have something exciting to wake up for and be happy about.
Q: November is Alzheimer's Awareness Month. What is the purpose of that and what is happening locally?
There's lots of things happening locally to bring attention to the disease and create awareness. We also have a candlelight vigil to honor the people who have passed. It's a wonderful ceremony to be held at St. Pius Church and we have that scheduled for Nov. 9 at 6:30 p.m.
In National Alzheimer's Disease Awareness Month we try to do things during the month, different activities to bring attention to the disease.
We feel there's urgency to the disease right now, that if we don't deal with it now, it could bankrupt the system, because people with Alzheimer's disease will require fulltime care.
It's not nearly as expensive to provide the money for research right now as it will be to pay for the long-term care for individuals with the disease.
Q: What does the Alzheimer's Association need?
We need people to support research by letting their congressman know what's going on and by supporting us locally, so we have the money for local services.
Q: How did you become involved in the El Paso Alzheimer's Association?
I walked in the door asking for help because my mother had Alzheimer's disease, and I had no idea what to do with what was happening with her behavior.
It was baffling, it was scary, something I'd never dealt with. So I came in to get help for her in 1995.
Her husband was retired military, and they were going to VA doctors and could not get anybody to tell us what was happening. They just kept saying, "Nothing wrong, and nothing wrong."
Finally, I went to the Alzheimer's Association and they gave me a list of civilian doctors and we took mother. And that doctor began to help us understand what was happening.
It was a terrible thing. My mom was a businesswoman, she had businesses, she had rental property and was quite successful.
Yet she forgot overnight how to crochet. She was making an afghan for my son as a wedding gift, and the next morning she got up and looked at it and didn't know how to make a stitch. She called my sister crying. She even forgot how to make gravy, which was second nature. But she was forgetting things like that and we became alarmed. She was 75.
I came in and got help. I couldn't stand the thought that I couldn't help my mother. So I started volunteering on the speakers' bureau. Then I got on the board and then in 1997, the other board members asked me to take the paid position.
Q: How has the organization grown?
At first, it was the El Paso Chapter. In 2002, we merged with six other chapters in Texas and formed the STAR chapter. At that point, from this office, we ran Harlingen, Nacogdoches, San Antonio, Kerrville, Corpus, Amarillo, Lubbock and Midland. We ran about 60 percent of the state out of this office.
In July of this year, we merged with the National Alzheimer's Association and separated San Antonio. Now we just have El Paso, Lubbock, Midland and Amarillo.
Q: What did you do before?
I had my own company where I was doing training, speaking and training, organizational improvement kinds of things. And I did real estate for a while. I had been a stay-at-home mom for a long time, and I worked for Rep. Joe Skeen for a while in Las Cruces.
Q: How is the association set up? Do you have regular members?
We have local leadership councils that help us make decisions for the things we do and help provide support for us. We don't have specific membership. We have lots of people that support us, and we provide information and education about the disease.
Q: What exactly does the association do for people?
It puts people in touch with physicians, caregivers, legal, whatever kinds of resources they need, because we know that they're going to need to get all of their legal papers in order so they can protect the persons with the disease.
We provide education for them, we provide the support groups, we help fill in all the gaps for things once the diagnosis is given. Or if they haven't done that yet, we provide them with information to get a diagnosis.
We get thousands of contacts. We have a 24-hour help line that people can call any time, from anywhere, speak any language and get help.
Q: What's that number?
It's (800) 272-3900. People can always speak to a live person and get help.
Q: Would you describe the organization and its budget?
It's nonprofit. We don't have any visible means of support. The services we provide locally come from donations, grants, events, money that we raise. We have a budget right now of $1 million. It will take over $1.4 million to cover all our expenses.
Q: How are local donations?
They've been pretty good. That's another reason we merged with the national office. With the economy the way it is, it gets harder and harder to pay for everything.
Q: What should families do if a member has been diagnosed with Alzheimer's or some form of dementia?
They can call us and we will help them with referrals and resources. We have a list of doctors who are really in the know about the disease and that's importance to get an early diagnosis.
The importance of an early diagnosis is so that the person with the disease can participate in their own planning and get their legal papers in order. They need to have a say in where they're going to live. We know they will need fulltime care. They can be part of the decision-making about how they want the rest of their life to go.
Q: Everyone should have a will, of course, but it would seem particularly urgent for someone suspected of having Alzheimer's or dementia but who is still competent, right?
That's right. You need to do it. You need a durable power of attorney, which gives someone the power to make decisions for you if you're incapacitated and can't do it for yourself.
That would include a health care power of attorney. Sometimes people will give financial power of attorney to another person. But that needs to be done so the person with the disease is protected and there's someone who can make decisions for them if they're not able to do that.
Q: How good are the medicines out there?
They help. The earlier you get onto the medication, the better a person will do. They'll keep a higher quality of life for a longer time. They do help the majority of people. It's not going to stop the progression of the disease, but it keeps the symptoms at bay for longer.
Q: How much are they?
Average is about $130 a month.
Q: A few years ago, there was a severe shortage of vacancies in El Paso nursing homes for people with Alzheimer's, and people were having to look out of town. What is the situation in El Paso today?
There are five specific Alzheimer's units in assisted living in El Paso. There's one at the veterans' home, Ambrosio Guillen Veterans Home has a specific Alzheimer's care unit there. So does Bien Vivir Senior Health Services. Then there are private-pay Emeritus memory care units at Cambria, Cielo Vista and at Desert Springs.
The difference in the nursing homes and the memory care units is that the memory care units are secure and they have special programs for people with Alzheimer's/dementia.
Q: Will other nursing homes turn away people with Alzheimer's?
If they have behavioral problems, yes. If they have violent outbursts, then it gets more difficult.
Q: Is there any place else?
The other thing that we have in El Paso is foster care. We have people who provide care in their homes for three or four people. That's something that's peculiar to El Paso, because of the culture of care we have here.
We are so lucky because we have lots of small-home care providers that will keep three or four people in their home. Once you go over four, you have to have a different kind of certification. Those they have other places.
They're secure where people can't get out. It's a home setting and it's about half the price or less of what it would be in a memory care center or a nursing home. So we do have some different options here you don't have anywhere else.
There's also adult day care, and there's one that specializes in Alzheimer's patients.
Q: What kind of costs are we looking at as we go from these memory care units down to the small eldercare homes?
It can go up to $5,000 or $6,000 a month. Nursing home care is the most expensive. It's full care. Most of the assisted living, memory care units are private pay that don't take Medicaid.
Q: As you get down to the small personal care homes, what kind of costs are you looking at there?
Probably $2,500 a month or less.
E-mail El Paso Inc. reporter David Crowder at firstname.lastname@example.org or call (915) 534-4422, ext. 122 and (915) 630-6622.