AFA Teens Interview – Interview with Alzheimer’s Foundation of America for Teens Carol Steinberg

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:

You can also follow them on Twitter, Like their Facebook page, or check out the AFA’s YouTube channel for even more helpful information.
Carol Steinberg AFA Teens Interview

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, 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 to get involved.

Interviewer:  Carol?

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

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,, 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 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 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,, 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.

Interviewer:  Wonderful.

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Dealing with Early On-Set Dementia – An Interview with Holly Eburne

Holly Eburne is a life energy coach who has a background in physical therapy, and also has personal experience with early on-set dementia as her husband was diagnosed with Frontotemporal Dementia at the age of 57. Holly was kind enough to share some of her personal experiences along with practical advice for caregivers in the interview below. You can visit Holly’s site to learn more about her experiences, her services, and some of the memory tips she shares there. Holly offered so much great information that we had to break the video up into two parts:

Part 1:


Part 2:


Transcript from the Interview:

Brenda:  …now being recorded. Can you introduce yourself and tell us a little about who you are and how you came to be a life energy coach?

Holly Eburne:  OK. My name is Holly Eburne, and I have been a sport physiotherapist for over 30 years. Sport, because I focus [unintelligible 00:22] some athletes around the world, and it was like coaching the whole person, it wasn’t just the physical. So, when my husband was diagnosed five years ago with dementia, and we were only in our fifties, it was about two years later when the reality hit me, and I sunk to the bottom of the lowest point of my life. And I’ve lost my mom and my sister and I’ve had other losses, but this really hit me, as well as our financial loss.

And I knew that I had to do something different, which was, I didn’t want to go to a counselor. I have patients who go to counselors, and they’re still on antidepressants. I needed something that was different.

And I’d heard about life energy coaching. I didn’t know what that meant. And I got in touch with [unintelligible 01:23] in Texas, and it was over the phone, and I thought, “Wow, how do you do that?” But now that I understand energy more, it was one of the turning points for my life in just dealing with the reality of our present situation. So, that is, it was a great model for me. And then, I just started taking courses, and one thing led to another and here I am.

Brenda:  So, the life energy coach came out of a situation with your husband. Can you tell us a little about him and his diagnosis?

Holly:  Yes. Dave was, it was in his late forties, and there were some warning signs. He was a high school teacher, and that was a pretty stressful job. And there would be just little things like, he would make [unintelligible 02:16] , he wouldn’t recognize one of the, one of, like, an item I wanted him to get at the store. And, so I just, you know, these little red flags, and I thought, “OK, that’s got to be stress.” And it got a little bit worse, he started having seizures in his early fifties. Again, “OK, well, seizures are in his family, so,” you know, “this is stress related.” He was sleeping more. He was losing interest in hobbies. And again, you know, I chalked it all up to stress.

He wasn’t diagnosed till he was 56, going on 57, when things really, when they got out of hand, when I realized, that all the brain books that I was buying for him and the food that we had, the nutrition that we had, [unintelligible 03:08] his brain, healthy food wasn’t working.

And, but I still didn’t suspect dementia. I thought, “OK, maybe he’s dealing with a tumor, maybe he’s dealing with an irritation of the brain,” you know, it’s all fixable. It can be fixable, let’s just say it’s not always.

But when the doctor showed us the CT scan and said, “I’m very sorry, but he has a form of dementia, I don’t know what type, because of his age.” And then it was two weeks later when they came up with his diagnosis of frontal temporal dementia. And by then, I had the reality, not the reality, but I knew that I didn’t need to seek a second opinion, because I knew that he was right. It was a shock.

Brenda:  Now, obviously, this is something that is much more prevalent in the older community.

Holly:  No, it’s not [unintelligible 04:01] .

Brenda:  Being that he [unintelligible 04:02] .

Holly:  Yes, dementia is more prevalent in the older population. But his form of dementia is the second and maybe the most prevalent form of dementia in under 65. It’s not, generally, it’s the onset in the forties or fifties. There’s some people that have been diagnosed in their twenties, and some in their seventies. But the average age is in their forties and fifties, his form of dementia. But I had never been introduced, or even was aware of that type of dementia. It starts in the front of the head and the sides and it presents itself differently than Alzheimer’s, which is only one form of dementia. People think that all dementia is Alzheimer’s. No, Alzheimer’s is only one form of dementia. And it affects more the memory, initially, and direction.

For Dave, his is more language, just not finding words, being, just even his social behavior. Asking questions that are quite [unintelligible 05:09] that you would expect he’d know the answers to, or even, talking about [unintelligible 05:16] like bathroom talk. You know, so, it’s more of a social, language deficits initially, and then progresses to memory, direction. You know, active problem solving is tough for him, judgment, [unintelligible 05:33] , common sense. Yeah.

Brenda:  As a young caregiver, you know, we hear a lot about the caregivers who are caring for their elderly parents, but you are the spouse. So, what kind of trouble has the [unintelligible 05:47] for you?

Holly:  Whoa. You see, my grandmother, my uncle, they both had dementia, so I know what it’s like to be a secondary caregiver. But to be a primary caregiver and to be in the, what I think is the prime of my life, this is what I expected to be the prime of my life, it’s hard to explain, because there’s so many facets to it. So, you’re grieving the loss of a life partner, someone who was able to share in the raising of your children, who would be able to help around the house, and who, someone you thought you had another three or four decades to grow old with. And it, yeah. It is, I’m living with it 24 hours a day.

And there’s not, it’s not like I can go and visit my grandma and then leave, knowing somebody else is going to take care of her. The responsibility, the buck stops with you. [unintelligible 07:01] .

And for the first couple of years, I thought, that it really only stopped with me. And it’s only recently, as I’ve grown and evolved, that I’m accepting and asking for help and know that this does not have to be a lonely journey. And it isn’t all on my shoulders, that people are, and want to help out.

But it’s quite an experience, one that I could never imagined I’d be going through. Anyway, it is, I wouldn’t trade it. I know that that may seem really odd to a lot of people, and people might, that might even anger some people, because they say, “How dare you?” But I’m in the middle of it, I’ve had, you know, I’ve lived with this for over five years.

And personally, what it’s done for me and the peace that I’ve found in the, and just the patience and the mind is to live for today instead of worrying so much about the future, because that’s not going to help. You’re going to miss out on what today is.

I, honestly, would not trade my life and the lessons and who I’m becoming for who I was before, to change [unintelligible 08:20] . It’s not easy, I’m not going to pretend, Brenda, that it is easy. But I guess it’s well worth it. It’s well worth it when you work through it.

Brenda:  Knowing that you’re going through this with your husband, you’re not alone in going through this. So, what advice can you give to other caregivers who are also dealing with dementia, whether it be in a spouse or even in a parent or grandparent?

Holly:  Right. Initially, you take on more than you think, you take on more than you really have to. And when life feels really difficult and it feels like you’re in resistance or that you’re just exhausted, you need to take a step back, you need to remove yourself, and try to think about, “OK, how can I make this situation easier? How can I take care of myself?” Because the worst thing we can do is to do something because we think we should. And also, to put that other person before your needs, because you won’t be around for that other person if you continue to do that. And if you are around, you’re going to have anger, or you’re going to have bitterness, or you’re going to have, you’re just not going to be coming from that place of real [unintelligible 09:43] unconditional love.

So, my biggest piece of advice is, and I’m sure they’ve heard this before, but if you don’t take care of yourself, it’s like in the airplane, if you do not put the oxygen mask on yourself, you cannot help your caree. 30 percent of the spouses die before the one with the dementia, because of stress. And the scientists have already proven that over 95 percent of all our illnesses and diseases are caused by stress.

So, we are going to live. We have the capability to live longer than that person with dementia. But we also have that capability of helping them to the best of our ability, and that’s by helping ourselves first.

Brenda:  So, outside of helping yourself, are there any other secrets that you’ve had for moving forward? You know, you were dealt a pretty big blow. What has allowed you to accept what has happened to your family and made you be able to continue on?

Holly:  When the doctor gave us the news, I was in shock, because here I am in the health field, and I just, I didn’t see it. And yet, I was buying, you know, brain books and children’s [unintelligible 10:58] . And so, I, I just lost my train of thought there. Extraneous noise. I’m sorry, Brenda, I just like, get distracted by all that noise. I, [unintelligible 11:23].

Brenda:  What were your secrets for moving forward?

Holly:  Going to the very bottom and actually admitting that I was at the bottom, being aware of my emotions. And admitting to myself that, just admitting to myself that I am where I am. That I, and I stopped running away. I stopped keeping myself so busy with things that, and that’s what I would do. I would fill my days, so that I didn’t have to think about or feel the pain, that’s what I didn’t do. I finally started to feel the pain, I gave myself permission to feel the pain. And then, when I finally did that, it was about two days later, when I woke up to the fact that I have a choice. And I have a choice of staying where I am, with my story of being a poor caregiver who have lost all their finances and have to start over in their fifties, or I can let that go and take baby steps.

So, three steps that I took. Number one, awareness. Number two, realizing I have choice and freedom to either stay or to step forward. And number three, to take those baby steps.

And those baby steps were, you know, exercising every day, meditating in the morning, getting out a gratitude journal, and writing five things I’m grateful for every night. Learning to receive help from people who would offer it, because actually, you’re giving them a gift by doing that. Learning to ask.

Those are all little baby steps that I chose to take, knowing that, you know what? This is my reality. This is my reality, how can I feel alive again? I was tired of wasting my life, because it was, I just, I owed it to myself that life is a gift and I was wasting it by just being where I was. And that’s what I did.

Now, everybody is going to respond differently, and everybody will reach those points at different times. But I reached it at the two year mark, that was three years ago. And I, you know, I did choose to.

Brenda:  Holly, do you have anything else that you would like to add, that would help caregivers in the same situation as you? [unintelligible 14:08] know that they’re not alone and that there is a way to continue on.

Holly:  One the biggest lessons that I’ve learned and one, I would say, that helped me was when I finally surrendered to what if, I surrendered to my reality. It was that moment in the kitchen when I just said, “OK. This is my life. Now, what do I do about it?” And then it’s just life got easier. Instead of fighting, and trying to control the disease, and trying to [unintelligible 14:46] , I actually said, “This is it. The only thing I can control is what’s going on inside of me.” That’s where I focused. I focused on how I can come to peace with this. And I had months and years going inwards through courses, through time, through meditation, through walking in nature. That’s what I did.

And then also to be aware of your boundaries, to be aware of your boundaries for yourself. [unintelligible 14:17] that when people ask you to do things. And be aware of your “should.” Are you doing this because you really want to? Are you taking care of yourself? Are you having fun? Tell me how many times a day do you laugh. Just because we have this situation doesn’t mean that the fun part of our life is over. Not a chance. It is your life. It can become what you want it to be, but it’s up to you. It’s your choice.

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