I will never forget the first day that my grandmother no longer knew who I was. The dagger through my heart when she gave me that blank stare. How could I ever forget?

I’ll tell you how… the same way six million Americans right now are living: with Alzheimer’s disease.

In this episode of Think Tank of Three, Julie Holton shares her personal story as the hosts talk with the Alzheimer’s Association about the increased risk for women, the burden of caregiving, and the HOPE as we fight for a cure.

Podcast Transcript

Julie Holton: (00:00) I will never forget the day that my grandmother no longer knew who I was. I had flown home for Christmas, nearly 700 miles from Minneapolis to Detroit, and on that day I felt every single painful mile. Grandma walked through the door, smiling, hugging everyone. Then she stopped and looked at me, a blank look, confusion, almost of fear. I will never forget the dagger through my heart. Alzheimer’s had ravaged her brain. She no longer knew who I was, and while I think I will not forget this awful, horrible feeling… Will I? Today on Think Tank of Three, the face of Alzheimer’s and the help available 24/7… Because you are never alone.

SHOW INTRO: (00:45) You’ve made it this far in your career, but is something holding you back from getting to the top. We’re ditching the culture of competitiveness. We’re women working together to help other women. We are think tank of three. I’m Audrea, your business development coach. I’m Julie, your digital marketing strategist and I’m Kathryn, your media and public speaking expert. Three women from different backgrounds coming together to empower, support and encourage other women professionally and personally. Let’s do this together.

Julie Holton: (01:20) Welcome to Think Tank of Three. I’m Julie Holton, here with Audrea Fink. Today we are talking about a very personal topic for me and for nearly 6 million American families with a loved one with Alzheimer’s disease or another dementia. We’re talking about this today because this is a major example of what it’s like when our personal struggles impact our professional lives, whether we want them to or not. I joined the board of directors for the Alzheimer’s Association, Michigan Great Lakes chapter to help more families like mine and let me tell you, families need help. They need support. Women are especially impacted. Two-thirds of all people diagnosed with Alzheimer’s or dementia are women and women are also more likely to become caregivers of those with Alzheimer’s. So Audrea, this is really a topic today to talk about for women.

Audrea Fink: (02:11) Yeah, 6 million. Julie, these numbers are staggering. I will admit, this is not a topic I know a ton about. I mean I have friends like you, right? And other friends who have this in their family, but outside of what I see from friends and then what you post on social media. It’s not something that’s personally affected me, but I can absolutely see the toll that it takes on families like yours. And you know, the stories that you’ve shared with me about how it impacts your life or what you’re seeing, you know, being on the board has been pretty staggering.

Julie Holton:(02:43) And it’s interesting Audrea, to talk about this because when my grandmother was first diagnosed, I was, I was in high school and I remember thinking as a high schooler, oh this is something that happens to us as we get older, we stop remembering things. When the first time I noticed, my grandma and I were actually looking at a big picture on their living room wall. They had their whole, you know, our whole family in it. My Dad is the youngest of seven kids and my grandmother was pointing out one of my uncles to me and explaining that he’s her son and who he is. And I remember thinking, this is really strange. Like, of course, I know who my uncle is and I didn’t know as I think many people still don’t. I mean I think what we’re starting to recognize it, we’re raising this awareness so people are starting to know that this isn’t normal, but this isn’t normal, that is not a part of normal aging. And so I think the hard part for me is all of these years later, like almost 20 years later, this disease is still impacting families in a very similar way to what I went through 20 years ago.

Audrea Fink: (03:50) So Julie, you mentioned Alzheimer’s and or dementia. Can you talk a little bit about whether they’re the same, whether they’re different, why do you, why do you split those apart?

Julie Holton: (04:00) It’s such a great question. So I think of it like this. Dementia is the big umbrella. It is the overall term for diseases like this. And then under that umbrella we have Alzheimer’s and other types of dementia because Alzheimer’s isn’t the only one. There’s Lewy Body, there are other types. There’s vascular dementia. But we talk about Alzheimer’s so much and sometimes use it interchangeably because it makes up about 75 to 80% of all dementia cases. So most people, as far as what we know right now, most people with dementia have Alzheimer’s, but it is just one type of dementia.

Audrea Fink: (04:35) Even for those of us who aren’t dealing with it personally, this has a huge impact. Every 65 seconds someone in the U.S is diagnosed with Alzheimer’s or another dementia. That’s insane!

Julie Holton: (04:45) And it’s not just an old person’s disease. People in their fifties and sixties are being diagnosed and not to mention every generation is being impacted by the caregiving. We’ve asked a special guest to join us today to talk about these numbers and the hope because there is hope and the research being done. Cammi Robinson of the Alzheimer’s Association is here now. Cammi, thank you so much for joining us this morning.

Cammi Robinson: (05:07) Thank you for having me.

Audrea Fink: (05:08) Thank you so much, Cammi. Can you tell us a little bit about what you do for the Alzheimer’s Association?

Cammi Robinson: (05:13) Yeah, absolutely. So many folks, I’m sure, are probably aware or familiar with our walks to end Alzheimer’s that are coming soon around the nation. But the other side of kind of, it’s kinda what I’m responsible for it. I’m actually responsible for providing care and support services in the area that I cover of our chapter with the Alzheimer’s Association. A few things that are super important in what we do is we do have an 800 number. We have a helpline that’s available seven days a week, 24 hours a day, 365 days a year, in a multitude of languages for folks to have somebody to call in and, you know, really have someone to talk to if they need resources or need help or they need someone to talk to. That is super, super invaluable. And I know that Julie and I have been together at times and have heard people give testimony to their experiences with that helpline and how valuable that is. It’s just really, really cool to know that there’s always someone there to talk to. Another great service though that we do offer as an extension of that, is we offer in person care consultations and it’s super interesting because that’s the one thing that our constituents say that they value the most, but the thing that the least number of people know that we have. If someone’s newly diagnosed with Alzheimer’s disease or has been diagnosed with Alzheimer’s disease but is having you know, difficulty in trying to make transitions or determining what the next steps are or where they go from here, we can actually sit down in person with a, with a family, with caregivers, with the person living with Alzheimer’s disease and we can kind of help them through that. We have that service available all over the United States and it’s just really, really a great service and it’s, of course, free of charge. That super important.

Julie Holton: (06:51) I can’t emphasize this enough. If you are going through this journey with Alzheimer’s or another dementia, pick up the phone and call that one 800 number that Cammi mentioned. It’s (800) 272-3900 and this one-on-one care consultation. So call that one 800 number, they will connect you to someone who’s local in your community so you can sit down with someone like Cammi, develop a plan, know what’s ahead for you or your family. Be connected to a vast number of resources in your area, whether you’re figuring out care for your loved one or it can be the most mundane question that you think that you might have that you don’t want to trouble anyone to ask. You’re not troubling anyone. They have the answers. You’re not the first person to ask it. It’s like having a best friend that you can call in the middle of the night except this best friend has answers for you and luckily for me, I am Cammi on speed dial, so sorry Cammi! Cammi is who I call when I, when I’m like, oh, this is happening, Cammi, what do I do? I know Cammi well, she has been an angel for so many families, connecting them to the resources they need and there are Cammi’s all across the country with the Alzheimer’s Association to help. Cammi, I want to talk specifically about risk factors for women. Can you talk to us about what are some of these factors that make women more at risk for Alzheimer’s or other dementias?

Cammi Robinson: (08:16) Yes, actually, and I think that you all mentioned this a little bit ago, but um, women are two thirds more likely to be diagnosed with Alzheimer’s disease than men. And you know, years ago we thought that that was just because women live longer. It’s interesting, I’ve been doing education programs in the community for years and years and you know, we used to always say women are more likely to be diagnosed than men. And I’d ask why do you think that is? And everybody would say something about, you know, because men stress us out or something like that, which is absolutely not necessarily the truth, but it, we used to think it was just because women live longer now research is really, really heightened in this. And there’s a lot of folks looking into these questions and kind of looking at the fact that maybe it’s not just because women live longer is the breakthroughs in medicine have, have gotten better. Obviously that gap between how long women live and how long men live has been getting smaller. So we’re looking now at why, why is that? That’s still happening. So they’re looking at all kinds of really, really interesting things. Things that are maybe hormonal based. I know last year there was some really interesting breakthroughs in looking at women’s health and looking at some factors as far as perhaps how many children we had. Does that in our lifetime, does that increase or decrease our risk? I think what they sort of came out with last year was that, you know, if you had three children, you were, you had a lower risk of having Alzheimer’s disease versus someone who had one child. So I have two. I’m thinking maybe that just kind of made me back to middle ground. So, you know, lots of really cool things.
Cammi Robinson: (09:51) There’s also interesting information this year that’s been coming out of AAIC — The AAIC is the Alzheimer’s Association International Conference. It’s a time that folks come together from around the world, researchers sit down to discuss what’s happening in the world of research, what are they looking at this year? So there’s been some really, really interesting breakthroughs there on just the difference in the way that women’s brain process chemicals and versus the way that men’s brains process chemicals. So I don’t know, there’s lots of really interesting things coming out.

Audrea Fink: (10:23) One of the stats that we talked about earlier I think, is just this idea of not only do women get Alzheimer’s at a higher rate, but then they also tend to be caregivers for Alzheimer’s and other dementia sufferers. Can you talk a little bit about how that plays out?

Cammi Robinson: (10:39) Absolutely. I kind of want to share a little bit of a short story here. We have in our local area, we have a conference that we have every year. It’s a caregiver conference and it’s really called the caregiver retreat where we have an opportunity for, you know, folks who are caring, caregiving, not just for, for folks living with Alzheimer’s disease, but any type of caregiving can come and kind of have a day just to, you know, rest and relax and have some respite and some rejuvenation. I had a wonderful lady come up to me this year and she shared with me that she had been attending this conference every year for the last five years with her mom, that the two of them had been caring for her dad who had been living with Alzheimer’s disease. And she got a little teary eyed and she sort of shared with me that this was the first year that she would be coming, that she was attending without her mom. And you know, she then shared with me that while her dad was still living with Alzheimer’s disease, the difficulties and the stress involved with caregiving really had an impact on her mom and that her mom had passed away due to other illnesses. And that’s something that I think we just don’t talk about enough. Women are, you know, our most prevalent caregivers and you know, it’s difficult. What we do know from our, you know, research and our statistics are showing us that caregivers are quite often not seeking their own medical help. They’re not going to their own doctors appointments or not taking care of themselves because they’re really dedicating most of their time taking care of their loved one. And that really does have an impact.

Julie Holton: (12:07) It has a huge impact. Cammi and there are so many stories that just like the one that you shared that are just heart wrenching, but it’s happening to these caregivers and the caregivers need care as well and they’re putting their own needs last in so many circumstances.
Audrea Fink: (12:23) In looking at the Alzheimer’s Association website, what really struck me is some of the demographics and the breakdown of who are the caregivers. About one in three caregivers is 65 or older. So you’re already, you know, retired and you’re caregiving for someone who has it. Approximately two thirds of caregivers are women and most specifically over a third of them are daughters. Most caregivers, 66% live with the person and approximately one quarter of dementia caregivers are the sandwich generation, which means that they’re not only caring for an aging parent, but they’re also caring for children under 18 and when we, when I think about what this means for women who are professionals, I just think, man, that’s, that’s a lot of burden on that caregiver who is either trying to be retired and relax and now they have the job of taking care of another human. Or they’re someone who is within the sort of that working range, who’s caring for a parent, which would just be devastating, and also caring for the children. I mean it’s a lot

Julie Holton: (13:28) It is huge. Audrea, and I can’t even, it’s like I don’t even have the words to express what this is like to be caught in this push-pull, you know, this tug of war between personal and professional. So let me share with you this. In addition to my family dealing with Alzheimer’s disease. So my grandmother passed away from complications due to Alzheimer’s disease more than 15 years ago. Her caregiver was my grandfather, who now is in the end stages of dementia. And so my family has gone through this for more than 20 years. And so I feel like, well not even, I feel like since I was a teenager, I’ve been living and breathing Alzheimer’s. It’s why I joined the board of directors. Because you get to a point where you want to feel like you’re doing something so you do anything you possibly can… And that is to reach out and to care for others. But while all of this is happening with my family, I, a year ago, just over a year ago, bought a new house and the day I moved in, one of the neighbors in the neighborhood came over to greet me. And as we were saying hello, she says to me, and now I just want you to know that my husband has Alzheimer’s. And so if you see him acting funny or if something happens, you know, please come, let me know. And she’s saying this to me and I can tell she’s really uncomfortable. She really doesn’t want to be telling this to me. And this is a woman in her early seventies, and I said, I want you to know that I understand what you’re going through and if you ever need anything, I gave her my cell phone number and said, I am just here for you, you know, in the neighborhood. And um, and so that was a year and a half ago. And just six weeks, eight weeks ago, she was diagnosed with Alzheimer’s. So now we have a scenario where husband and wife, patient and caregiver both have Alzheimer’s and they have, they have adult children, they have four sons. All four sons live out of state. And so I am the person that she calls because I gave her my cell phone number and I remind her almost daily, call me if you need anything. And let me tell you, those calls come almost daily. And caregiving? It takes a very special person to be a caregiver. And I’m telling you, I don’t know that I’m cut out for it. I mean that it is a very difficult job. It is 24/7. It is, it is relentless. And caregivers do not get enough recognition for what they’re doing.

Julie Holton: (15:51) One of the sons actually said to me, you know, if only mom and dad had had a daughter that could care for them. And I think that, and Audrea, the only reason why I say that is it ties into this idea that women are supposed to be caregiving, that we’re supposed to be able to balance personal and professional and still care for– And I’ll tell you, it’s so hard to say because I don’t want to sound like I think I’m a martyr because I’m not. I’m not, I’m not over there every day. It’s almost every day, but not every day. But I am balancing running a business. I am balancing all my personal life. I’m balancing all of the boards that I’m on, you know, my life with caregiving or trying to caregive and feeling like you’re pulled in so many directions, you’re not doing any of it really well.

Cammi Robinson: (16:38) That is so, so true. And I think it’s interesting because isn’t that true? We’re supposed to be able to do everything. We’re supposed to be able to do everything. Well, and you know, this is, this is high stakes. This is a big deal. This is not just, you know, hey, can I remember to pick up the dry cleaning and you know, do everything else that I have on my list today. This is difficult. And you know, Alzheimer’s disease is a very, very difficult disease and there are so many facets and so many phases and so many things to deal with. It’s tough. You know, I can honestly share that the Alzheimer’s Association has lots and lots of resources. And so that’s one thing that I can say I can’t make this caregiving journey, you know, I can’t take this away or make this better or do this for everyone. But what we can do is try to support them on the journey. And you know, we have support groups that are just amazing, all over the place. We have caregiver support groups, we have early-stage support groups. And I want to talk about that just for a second just because I think it’s super important because we’re talking about a little bit about that sandwich generation and a little bit about the fact that people are really being diagnosed with Alzheimer’s disease younger. And I don’t necessarily think people are getting Alzheimer’s disease younger, it’s just that we do have now the ability to diagnose better. And so we do, we’re able to diagnose them. Whereas I think before we, weren’t necessarily sure that people had Alzheimer’s disease. But one really cool thing in these early stage groups is this gives people the opportunity very, very early in their journey with Alzheimer’s disease to get together with other people who are at the same place in their journey and to socialize and to have that support and to build that network of other people. And I think that’s super, super important. One thing that we always say is you cannot walk this journey alone. You need to reach out in any way that you’re comfortable doing. So we have online support groups, we have in person support groups, we have all kinds of things that can really help. So I think I really want to just make sure we’re able to mention that there are stuff and there are support groups out there for people.

Julie Holton: (18:33) Knowing that you’re not alone is so important. Cammi, I also want to talk about what I describe as the hope for what’s ahead and at the Alzheimer’s Association, we talk about this hope that the first survivor of Alzheimer’s disease and other dementias is alive right now. Cammi, can you talk about that? What do we know right now about Alzheimer’s and brain research?

Cammi Robinson: (18:55) I think that there’s just so much going on and it’s always interesting to kind of, even for me to hear the news and hear what people are talking about on a daily basis. You know, there’s a lot of really interesting research right now looking at inflammation in the brain. There’s a lot of really interesting research looking at different reasons why, the plaques and tangles and the amyloids are happening. So there’s just tons and tons of stuff going on. I know for us locally and for actually, you know, many counties in the Michigan area, we have something coming up called research night, which is really cool. It’s an opportunity for people to come and actually hear from the researchers what’s happened in this last year and what breakthroughs are going on.

Audrea Fink: (19:34) That’s so neat!

Cammi Robinson: (19:35) Oh, it’s super cool. It’s really neat. It’s a great opportunity. It’s free. It’s a wonderful night. We have, um, we have those happening coming up in August and early September, um, in four different counties in the state. So really excited about those happening.

Julie Holton: (19:49) It’s important for people to know that the Alzheimer’s Association is really leading the way in this Alzheimer’s and brain research, working globally with researchers, you know, around the world on this. The Alzheimer’s Association is actually the number one nonprofit fundraiser in the world for these efforts. And it’s actually only number three in fundraising behind the U.S. Government and the Republic of China. As you can imagine, both the US and China with its large populations have a lot invested and a lot on the line in coming up with a cure for this disease.

Audrea Fink: (20:25) I love hearing about all of this research and I love hearing that there’s so much funding for the research, but for right now, for today, for the families who maybe either feel alone in the fight or for the families who just need help, what can we do? What can someone who is not impacted by it or maybe is not on the board or is not a volunteer? What can we do to help support those who are going through this?

Cammi Robinson: (20:50) I think the one number one thing that I feel is super important is to educate yourself. I think as far as you know, women, we need to educate ourselves about this disease, about what’s happening. You know, sadly we say if you’re not currently being impacted by Alzheimer’s disease, you will, so everyone with a brain is at risk for Alzheimer’s disease. Unfortunately, as much as I hate to say this, chances are most of the people listening are probably at some point going to be impacted by this disease. So educate yourself. The Alzheimer’s Association has education programs online and in person all over. I think that there’s some very specific things as far as caregiving and being with someone who’s living with Alzheimer’s disease, you know, being patient with yourself. I think so much that that’s important to remember and to take time for yourself and take those respite opportunities. Anyone out there who is, you know, know someone who’s dealing with this disease can, you know, absolutely offer opportunities for respite for those folks. And if you ask once and they don’t accept, ask again and don’t stop asking. So, you know, I think that’s one of those things where we just need to support each other as much as possible. Being flexible and getting involved. I mean the thing is, is that you and Julie and, everyone else can be a part of finding a cure for this disease. You know, there’s so many ways that you can join our fight and I think that that’s also an important piece of that.

Julie Holton: (22:13) Cammi, for women who are managing the professional life and family health issues, what are some self care tips for these caregivers o tricks for managing balance? What are some ways that we can help women manage this?

Cammi Robinson: (22:30) Again, I think taking those opportunities for respite, joining support groups, we have support groups. And Gosh, after talking to you all today, I think I’m getting an idea that maybe we might actually want to look at maybe thinking about some support groups specifically for professional women. I think that’s just such a great idea and that’s been so interesting even to hear you talk about that today because it’s such a need. I also think just taking time for yourself and taking time to breathe. I had someone tell me once to always have a little thing of bubbles with me everywhere I go on my caregiving journey. And I thought that was kind of funny, but you know, she said when things get bad, just take a moment and go outside and blow some bubbles. And I thought, well, that seems kind of odd. But then she looked at me and said, because if you’re blowing bubbles, you’re breathing. So impactful and it was so cool and you know what actually works. So that would be my advice for today. Carry bubbles with you everywhere and just breathe!

Julie Holton: (23:31) Oh, I love that.

Audrea Fink: (23:32) I love that and it hits me right in the heart. Like I was chuckling to myself until you said, because if you blow bubbles you’re breathing and I was like, oh man. Right. What a good reminder.

Cammi Robinson: (23:42) Absolutely.

Audrea Fink: (23:43) Before we go, we want to share these resources one more time with our listeners. The Alzheimer’s Association hotline is answered 24/7: (800) 272-3900. You can also go online anytime to alz.org and get help.

Julie Holton: (24:00) So we started this episode with a very personal look at what it was like for me the last time that I saw my grandmother, that was her last Christmas with us before she passed away from complications due to Alzheimer’s disease. But I want to share this with you because conversations like this can be so depressing sometimes. Just so kind of sobering. It’s a very difficult disease. It’s a very difficult journey and sometimes it can feel like there isn’t hope, but I want to share with you as we go that there is hope. And I found that hope in the Alzheimer’s Association that even after my grandmother was gone, this family that I now have, we call ourselves the Purple Ninjas because we are all fighting for other families. I got into this fight because of my grandmother, but I stay because of all of the families affected by this disease and every day there’s another family that’s impacted and we are in this fight until no more families are impacted.

Julie Holton: (25:01) You can share your thoughts on today’s podcast in our private community on Facebook. We invite everyone to join the conversation there. You can also find us, Think Tank of Three on Instagram and Twitter and connect with each of us, your hosts, directly on LinkedIn.

Audrea Fink: (25:15) You can also show some love by subscribing to think tank of three on your favorite platform. We are on Stitcher, Google Play, iTunes and SoundCloud and join us right back here for our next podcast.

SHOW CLOSE: (25:28) You’ve made it this far in your career. What is something holding you back from getting to the top? We’re ditching the culture of competitiveness. We’re women working together to help other women. We are Think Tank of Three. I’m Audrea, your Business Development coach. I’m Julie, your digital marketing strategist, and I’m Kathryn, your media and public speaking expert. Three women from different backgrounds coming together to empower, support, and encourage other women professionally and personally. Let’s do this together.