Carol Steinberg of AFA Teens was kind enough to spend some time with us recently – below is the audio from the interview she gave us as well as a transcript. Carol offers some great tips for teenage relatives of people dealing with Alzheimer’s. AFA Teens is a site dedicated to mobilizing teens nationwide to raise awareness of Alzheimer’s disease and to engage teenagers in the cause. Here are some great resources from their site:
- Alzheimer’s Disease
- Young Onset Dementia
- Care ADvantage Magazine
- Healthy Lifestyle Choices
- Sports-Related Head Injuries
Transcript of the Interview
Interviewer: Hi, Carol. How are you?
Carol Steinberg: Great. How are you doing?
Interviewer: Good, thank you. Can you briefly introduce yourself, and for those who don’t know, tell us a little bit about the Alzheimer’s Foundation of America?
Carol: Sure. I’m Carol Steinberg and I’m Executive Vice President of the Alzheimer’s Foundation of America. AFA is a leading national nonprofit organization. Our mission is very care‑focused. Obviously, we’re all hoping for a cure but, until that day comes, there are the daily challenges that individuals with the disease and caregivers face. So we come out with programs, services, educational materials, et cetera, to help individuals with the disease, their caregivers, health care professionals, in order to improve quality of life for those with the disease and their families. We unite about 1,600 local member organizations across the country that provide the real hands‑on care that address emotional, financial, social, and practical issues of this disease.
Interviewer: A branch of the Alzheimer’s Foundation is the AFA Teens. Can you tell us a little bit about how they came about and their mission, vision and values?
Carol: Sure. The Alzheimer’s Foundation recognized that caregivers come in all ages. This disease doesn’t discriminate and people with the disease can be someone’s parent. If it’s early on, it can be a teen’s parent. If it’s early onset, it can be someone’s grandparent, uncle, aunt, et cetera, many of whom are living with teenagers or teens are responsible for some of their care‑giving activities. Or, even if they’re not involved in hands‑on care, they’re seeing what’s happening to their loved one. So we really felt that there was a gap, that teens needed to be educated and engaged in the cause. If they were dealing with it in their own families, they really needed to know that they weren’t alone, that they needed an opportunity to share experiences. As well, we felt this was really an opportunity to engage teens in meaningful volunteer opportunities, to groom them for health care careers, et cetera.
It actually came about by a teen herself who has since graduated Harvard, is in the corporate workforce, applying for her MBA, et cetera, who still serves as our President of the AFA Teens division.
Interviewer: And with that, Alzheimer’s disease is difficult enough for adult caregivers to cope with. What types of struggles have you seen teens and young caregivers experiencing when they’re helping to care for a loved one with the disease?
Carol: I think this is where we really see the emotional issues of the disease kick in. Teens tend to have a rough time in their teenage years anyway. And if they have a loved one, especially if it’s a loved one who lives with them, going through Alzheimer’s disease, they might be embarrassed to have friends over. There’s still, unfortunately, a certain stigma attached to this disease. They might be embarrassed that their loved one keeps asking the same questions over again or does things that really wouldn’t look “normal” to somebody.
Also, teens are affected because they might be responsible for care‑giving. There are studies that show that 1.4 million children, eight to 18, provide care for an adult relative. And Alzheimer’s disease is the most common condition that care recipients have.
So teens who do have a loved one with Alzheimer’s disease might not be able to partake in the extracurricular activities or go to the social events or the parties that their friends are. They’re weighed down taking care of some of the care‑giving responsibilities.
Yes, it can be a learning experience, but it can also be very trying in their teenage years.
Interviewer: Do you have any advice for them?
Carol: Well, I think the advice that we give to teens is really much the general advice we give to caregivers, that they shouldn’t face this disease alone. There are others going through the same experiences as them. I think, for a teen, that might be harder for them to understand. They probably think there’s no one in their shoes. But through the AFA Teens division, they’ll find there are peers who are facing Alzheimer’s in their family, who are facing many of the same experiences they are.
So through AFA Teens, which is an online community for teens as well as has chapters across the country, they could connect with other peers who are going through the same thing as them, talk to them on a bulletin board, read their blogs, find out they’re not alone, connect with our social workers to get some advice that they need that will help them get through it.
Interviewer: And how do they join AFA Teens or become involved with that?
Carol: Our website is www.afateens.org, and on there, there is a bulletin board. There are blogs that are currently written by our AFA Teens Advisory Board members, and they could get involved in that way as well. There are many tips on AFA Teens. They could write in to our social workers. They could also establish AFA Teens chapters at their schools or communities. And that’s a great volunteer activity, a great way to raise awareness, a great way to volunteer in their communities as well as gain leadership experience.
They could also get involved… AFA Teens does have an annual college scholarship. The top prize is $5,000, so college‑bound students can write about their experiences with AFA Teens. So they’re not only going for the gold, if you will. This really is a therapeutic way for them to write about their emotions. We also have an annual video competition for teens.
So lots of ways for them to express themselves, to get the feelings out. They could contribute creative contributions to our website. That, again, shows how other teens are dealing with the disease, how other teens have connected with their loved ones. So it’s www.afateens.org to get involved.
Carol: Yes, I’m still here.
Interviewer: Oh, I’m sorry. You cut out for a second. I think you were giving the website again.
Carol: It’s www.afateens.org.
Interviewer: OK, fantastic. We’ve talked about what the website has to offer. And I don’t know if you can answer this question or not. But is there any definite that a young person should expect when they’re faced with a grandparent or even a parent with the early onset dementia, that the disease is going to bring about?
Carol: Every person who has this disease is a different situation. Their symptoms might differ, the way it progresses might differ, the way they react to other people might differ. But there are some generalities that we could talk about. I think for teens, I think what will strike them the most is probably a lot of repetition on the part of their loved one. They might ask the same question over and over again. They could expect that there will be short‑term memory loss. Their loved one might not remember what they ate for breakfast, but they might remember something from 20 years ago when they were a child. They can expect, in general, confusion about who their loved ones are. And this can be most hurtful to a teenager.
The grandparent might not remember that this is their granddaughter or grandson, despite the fact that they spent every Sunday together, or went on vacations together, or just had breakfast together that morning. They really shouldn’t take this personally, as hard as it might feel. It is the disease that’s causing this.
I think another definite is that they can expect this disease to progress over time. So while their loved one might seem fine one day, the next day the disease might have progressed tremendously. For other people, it might take months until it progresses further.
But I think the other thing they can expect is, if they pay attention to the person and really get to the core of who that person is, if they pick up on the person’s past histories, hobbies they liked, things they used to do together, singing, looking through photos, et cetera, they might really be able to connect with that person. And they really are the moments to cherish.
Interviewer: What can they do, as a young person, to make a difference with the Alzheimer’s disease or with their loved one? I know you had mentioned some fundraising opportunities and things of that nature. I’m assuming awareness is crucial.
Carol: The purpose of AFA Teens chapters, although this could be done on an individual basis as well, is to really get educated about the disease. That helps the teen. It helps their families cope. Volunteer in your community. There are lots of long‑term care facilities that are looking for teens to volunteer. In fact, the Alzheimer’s Foundation runs a volunteer challenge each year. We just kicked it off this past summer where teens can volunteer in their communities, write about their experiences. So they could really make a difference.
It also might let them gain some insight into looking at a health care profession as a career opportunity. There is definitely a shortage of health care professionals, particularly dealing with the geriatric population.
One of our winners, for example, of our AFA Teens College Scholarship, decided to become a social worker based on her family’s experience with Alzheimer’s disease. We hear from others who have volunteered in their community, that they decided to go into geriatrics. So there’s a real opportunity to learn and make a difference.
Interviewer: Are there any other resources that you could share to help with teenagers or children to gain a better grasp on what’s going on in their lives and in the lives of their loved ones?
Carol: Sure. I think the main resource, again, is the AFA Teens website, afateens.org, where there is a lot of information, where they could connect with social workers and peers. The other thing I would recommend is, the Alzheimer’s Foundation of America puts out a free quarterly magazine for caregivers called “Care Advantage.” They could go to that website and subscribe for free. That’s afacareadvantage.org. There is a lot of practical information on there, real insights from other caregivers, and this is a great publication for teens to learn more about the disease as well as something for them to share with their family members.
The other website is carecrossroads.org. That’s another website put out by the Alzheimer’s Foundation of America, which is very family caregiver‑focused.
And again, they could read creative contributions from other caregivers, see some short documentaries by people going through the disease, as well as gain a lot of information from frequently asked questions and a house of care interactive site that we have. That gives pointers about activities teens could do with their loved ones, about safety precautions families should take in their homes, et cetera, then, of course, the Alzheimer’s Foundation’s main website, alzfdn.org, which could connect them to all of AFA’s websites as well as programs and initiatives that we have.
Interviewer: That’s fantastic. There really are a lot of resources out there for them. Is there anything else that you would like to share regarding the young caregivers and those dealing with Alzheimer’s and dementia?
Carol: I’d like to just reinforce again that they’re not alone. They should reach out for help. Education and engagement are the most important things they could do. Visiting their loved ones, doing meaningful activities with them, really do make a difference. I think, for a teen, it would sort of be a no‑regrets situation, that they’ve done whatever they could do to help their loved one go through this heartbreaking experience.