Tell us about the National Contact Center.
Through Client and Information Services, we provide services directly to families and caregivers of people impacted by Alzheimer’s disease. So that means, we have in our department the 24/7, 800 number that the association runs that provides information and consultation for people that have questions about the disease.
The contact center runs out of the national office and we partner with our local chapters. We have 77 local chapters throughout the country with more than 300 points of service. Each of the chapters, together with the national contact center, offers information, referral, and care consultation by phone 24 hours a day. We do that through an 800 number, whereas during the day, the call goes to the local chapter.
The goal here is to make sure that people get to talk to somebody. That is the most important thing. When you call the 800 number, you don’t have push 1, or push 2, or push 3. You get to talk to somebody right away, and we know the caregivers need that.
What is the 800 number?
What should someone call the center about?
In the beginning, it might be to get information. Perhaps they just found out that their father was diagnosed with Alzheimer’s and the daughter calls and says, “My dad just got diagnosed and I want to know everything there is to know about this disease.” So we get them started, because there is a lot to know. They may call because the caregiver is struggling with challenging behaviors as the disease progresses. People might exhibit wandering behaviors, or pacing, or repeatedly asking the same question; trying to leave the house in the middle of the night is something that we get, those kind of calls, and then we can help the caregiver figure out strategies to make sure that that person stays safe.
What kind of preparations should people make once they are confronted with the disease?
One of the most important things that people can do when they learn that they or a family member is diagnosed with this disease is to learn about it and then make plans. Even though the disease can go on for a long period of time, the things that you want to plan for are how you are going to take care of yourself and what decisions you want to make as the disease progresses.
So, for example, you might think, “OK, I want to make sure at the beginning that I figure out who is going to be in charge of my medical decisions.” You want to make financial plans; you want to make sure that all your legal papers and things are in order. Then additionally, you want to make plans for how are you going to get care when you might need assistance.
For single people who are diagnosed early in the course of the disease, do they typically choose to continue to live at home alone?
Most of the 70 percent of people with the disease are being cared for in the community. As the disease progresses, more help is needed and there are different ways to access that help. People can come into your home, companions and/or nursing assistants, and help out. Or you can attend an adult day program where there is programming specifically designed for people with dementia.
What can I do if I live a long distance away from someone who needs my help?
That is a very challenging situation. Long-distance caregiving represents about 10% of the 10 million caregivers out there. So that is a lot of people trying to manage what is a challenging disease from long distance. We talk with lots of caregivers in our call center in that situation and who are wondering what they can do to help.
Here at the association we offer a number of online tools that can help families, and our care source online, which is http://www.alz.org, has tools that will help them figure out what types of care that they need and also point them in the right direction, too. We have an online tool called “Senior Housing Finder,” which is a dementia-specific listing of all the different types of residential facilities available. So there are things that people can do long distance and still help. They don’t have to be the one taking mom or dad to the nursing home, or to the doctor’s appointment or wherever they need to go. They can still help long distance.
How important is respite for caregivers?
I have to say that one of the most important things I would tell anyone when they learn about Alzheimer’s disease, either in themselves or in their family, is that they are going to have to get help, because this disease goes on for a long period of time, and because it is challenging on many different levels, people can’t do it alone.
Once this disease progresses, how do you deal with the memory lapses, with the repeated questions?
That is a question that we get a lot. How do you handle dealing with somebody asking you the same thing 50 times in a ten-minute period? It can get really frustrating. There is no one correct answer, but what I can tell you is that what we suggest to people is to try to distract them. Try to engage them in something else and distract them. So if your grandmother is asking you the same thing several times, say, “Oh, that’s great, Grandma. You know what, let’s go over here and get some tea,” or “I think it is time for a snack, why don’t you come with me?”
If she is afraid, if she is agitated, if somebody is upset about something, you can say, “Oh, that sounds awful, you sound a little nervous or scared. Let’s go do…” this thing that they like to do, whatever that is. So those are things that I would tell people. Again, there’s no right answer; it is trial and error and it can change from day to day. But responding to the person’s feeling and emotions behind what they are saying sometimes is more important than actually looking at the specific content.
Is there any way to predict behavior?
Some people will say, “Oh, thank God, my father has been docile; he hasn’t challenged us. He just goes along with what we say; it has been really great in terms of that.” And other people will say, “My grandmother was the sweetest person and she is cussing like a sailor right now,” or “She is constantly trying to get out of the household, and she does not want to take a bath every day and she gets very combative when that happens.” It is anywhere in between. In the range of human behaviors, there is no way to predict or understand exactly why some people’s behavior changes more than others or what behaviors come out of it.
What else do caregivers need to know?
If you can involve the person with the disease, depending on what point in the disease they are at, you should always try to involve them. They are still a person. We have to respect their dignity and their choices and you want to try to involve them in the process. It may get to a point where they can’t be involved in the process anymore, but if they were early on, then you will just be enacting what it is that they wanted.
Is there anything else that you really want to emphasize?
Just that if people have questions and they are laying in the bed staring at the ceiling at four in the morning, there is someone they can talk to, that the Alzheimer’s Association is here for them, and we’d like them to give us a call.
- This is an edited transcript of an interview conducted February 2, 2009.