Episode 82: Karen Sandone on Facing Younger-Onset Dementia as a Family

Disclaimer: This transcript was generated using artificial intelligence. We strive for accuracy, but minor errors and slight timestamp differences may be present due to platform differences.

[00;00;00] Karen Sandone:
One minute I was checking my emails at work, and the next minute I found out my husband had a terminal illness. It really was a moment of clarity for me that my future was unrecognizable. What am I going to do? I knew I could not talk with Anthony first. It was really important for me to figure out how I was going to plan this out.

[00;00;29] Dr. Lakelyn:
Hi, Dr. Lakelyn here. Welcome to Caregiver Chats brought to you by Home Instead. I'm so glad you're taking the time to join me. If you're a family caregiver looking for tips and resources, you've come to the right place. Don't forget to subscribe to the show on YouTube or your favorite podcast platform, and follow Home Instead on Instagram at @HomeInsteadInc.

An Alzheimer's diagnosis can change the future a family imagined. When a diagnosis comes in someone's 40s, 50s, or early 60s, families may be navigating careers, finances, children, relationships, and plans for retirement at the same time they're learning how to become caregivers.

My guest today understands that experience personally. Karen Sandone's husband, Anthony, was diagnosed with young-onset Alzheimer's disease at age 55 in September of 2023, following a nearly two-year search for answers. Karen and Anthony have six grown children and three grandchildren, and their family has made the decision to share their journey publicly to raise awareness and help other families feel less alone.

That experience has also led Karen into advocacy. She serves as an ambassador and board member of the Southeastern Pennsylvania Chapter of the Alzheimer's Association and a congressional advocate with the Alzheimer's Impact Movement. She is also the co-founder of Surviving the Now, a community created to provide connection and support for families navigating young-onset Alzheimer's.

Today, Karen joins us to share her story, what caregiving looks like for their family, and how she's learning to find connection, purpose, and meaningful moments in a future that looks different than the one they had planned for. Hi, Karen! Thank you so much for joining me today.

[00;02;21] Karen Sandone:
Thank you so much for having me.

[00;02;24] Dr. Lakelyn:
We first got to meet at the Women's Alzheimer's Movement (WAM) event in Cleveland—Maria Shriver's organization. You were the recipient of the Caregiver Award at that event. I was so inspired by your story that I saw you afterward and said, 'I need to have Karen on the podcast!' I'm really grateful that you're taking the time to connect and share today.

[00;02;45] Karen Sandone:
I appreciate it! What an amazing event.

[00;02;48] Dr. Lakelyn:
It really was! I told people it's one of the most beautifully curated events—everything from the food and decor to the topics was lovely. I hope to attend a future event of Maria's as well.

[00;03;01] Karen Sandone:
Same!

[00;03;02] Dr. Lakelyn:
Today I wanted to have you on to share your story, your journey, and your advocacy work. You so beautifully share your journey publicly with fellow families on this Alzheimer's path. I thought we could start by talking a little about you and your husband, Anthony, and the life you've built together, before pivoting into your journey toward the diagnosis.

[00;03;37] Karen Sandone:
We have a very interesting story about how we met! Anthony and I went to grade school and high school together.

[00;03;46] Dr. Lakelyn:
Oh, how special!

[00;03;47] Karen Sandone:
Yes! In fact, he was a football player and I was a cheerleader, but we never dated. He went ahead and got married and had his children, and I did the same. Circling back after 20 years, we were set up on a blind date. We knew each other, but hadn't seen each other in years. We got together after that, didn't look back, and have been together for over 20 years—married almost 18 years! That's the background of our love story.

[00;04;26] Dr. Lakelyn:
That's really beautiful! I love hearing how couples meet, so it's neat that you knew each other early on, life happened, and then you came back together and the rest is history.

[00;04;39] Karen Sandone:
For Anthony, he will tell you that he used to try to make eye contact with me in high school, and he says I didn't pay him any mind! We used to joke about that a lot.

[00;04;55] Dr. Lakelyn:
That's really sweet. It's interesting how people come back into your life after many years. So you got married and have been married for a long time. At what point did you start to notice things changing, or that there might be some brain change? Did you even know what those changes were at the time?

[00;05;21] Karen Sandone:
That's a great question because I often go back and think through when I saw the first symptom. In 2019, we went on a trip to Cancun with all of our kids and family—we have a blended family of six children who were much younger at the time. During the trip, Anthony lost control of a rental boat we had rented, which was confusing because he was such an excellent driver whom we could always rely on. He had never had an issue like that, but we just assumed he was having an off day.

It wasn't until 2020, when COVID hit and we were all working remotely inside, that I overheard him having conversations with his clients. I thought, 'Something is really off here.' His word recall was impaired and he struggled to form sentences. If you knew Anthony, you would know he talked and talked—he never had trouble communicating! Looking back, those word-recall issues were early signs.

Then, ahead of our anniversary in June of 2020, he would ask me the date, I would tell him, and a day later he would forget it again. I wasn't quizzing him; I'd just ask, 'What do you want to do for our anniversary?' and he'd ask, 'When is it?' I thought maybe he just wasn't paying attention or listening. You blame it on many other things, especially when your husband is fit, works out religiously, eats healthy, and has always been an athlete. I never imagined it could be something like Alzheimer's.

[00;07;38] Dr. Lakelyn:
When a loved one is living with Alzheimer's or another type of dementia, the caregiving journey can look different each day. Symptoms can change, routines can shift, and some days can feel overwhelming. It's completely natural to feel uncertain as you navigate these changes, but you don't have to walk this path alone.

At Home Instead, our care pros understand the challenges families face throughout the dementia journey and provide personalized support every step of the way. We focus on preserving your loved one's comfort, honoring their routines, and creating a calm, supportive environment at home. Every day, families just like yours turn to Home Instead for personalized dementia support at home. Schedule a free care consultation at homeinstead.com.

Those early signs—when talking with family caregivers, they often recall subtle things that seemed small at the time, but in hindsight were very early signs.

[00;08;42] Karen Sandone:
Exactly. It's comparing how he was before versus what was happening right in front of me.

[00;08;51] Dr. Lakelyn:
Comparing it to a baseline, for sure. Did you then embark on a diagnosis journey? Did it take a long time? Many families share that getting a diagnosis took months or years.

[00;09;05] Karen Sandone:
It really does take a long time. In 2021, we started with a smaller circle by visiting his internist. The doctor assumed it was an attention issue and prescribed medication for attention-deficit disorder. Next, we evaluated sleep apnea, completed blood work, and ruled out Vitamin D and B12 deficiencies.

By January of 2022, I started noticing many more glaring signs: struggle interpreting GPS directions while driving to our New Jersey shore house, losing items repeatedly, and increasing short-term memory loss. In March or April of 2022, I insisted we see a neurologist to make sure he was okay, considering he had experienced multiple concussions playing football in high school and college. The neurologist ordered an MRI, which ruled out tumors and strokes, so we continued on thinking it couldn't be anything serious.

However, by late 2022, his short-term memory deficits became glaring, along with driving distractions—like getting lost for three hours in Washington, D.C., which he had never done before. His general neurologist conducted a neuropsychological evaluation and scheduled a follow-up for October 20, 2022. I didn't go with him—which I deeply regret! If you ask me for my first major tip: Always accompany your loved one to appointments if memory loss is involved. I didn't think it was serious, so he went alone, came home, and said, 'I'm fine.' I thought, 'Great, it's just in my head,' not realizing the doctor had actually referred him to the Penn Memory Center! Anthony simply couldn't remember the referral.

Fast-forward to 2023: We continued seeing additional symptoms. In May 2023, after waiting eight months for follow-up neurology appointments, he was struggling significantly at work. He was staring at screens, unable to give presentations, and unable to comprehend technical chemical sales information or measurements. Skills critical to his career were disappearing quickly.

[00;13;05] Dr. Lakelyn:
That is such a long search for answers—taking three years from 2020 to 2023.

[00;13;08] Karen Sandone:
It took three full years! We didn't receive a diagnosis until September 7, 2023, after a full summer of testing. By that time, his job performance was in jeopardy, and his company held meetings blaming performance. I knew something was fundamentally wrong, so he went out on short-term disability. On September 7, 2023, I opened his patient portal and saw the diagnosis online.

[00;13;46] Dr. Lakelyn:
Wow, so a doctor didn't even deliver the news in person—you read it online in a portal.

[00;13;51] Karen Sandone:
There was no doctor call or nurse call—I saw it online. I was in complete shock at my office, walked out, and thought, 'This can't be right; what is going on?' At the time, I knew virtually nothing about Alzheimer's. I had heard of older grandmothers having it or Anthony's aunt in her late 70s having it, but I never associated it with younger people. It was a massive shock, and I had to figure out how to go home and tell Anthony and our family. I was completely heartbroken.

[00;14;41] Dr. Lakelyn:
I can only imagine. How did you approach sharing the news as a family? Many families struggle with who to tell and how to discuss a diagnosis. Did you share it immediately or slowly?

[00;15;03] Karen Sandone:
I had to digest everything on my own first. In a split second, I went from checking work emails to discovering my husband had a terminal illness. It was a moment of stark clarity that our planned future was unrecognizable. I knew I couldn't talk with Anthony first; I needed to figure out how to plan this out.

The first person I called was my mom, followed by my parents, Anthony's children, his sisters, and his parents. Everyone was in initial denial—especially his parents, who did not want to hear that their 55-year-old son had Alzheimer's. His adult kids were less in denial, but I wasn't in denial at all—I started grieving immediately. From the moment I opened that portal, my head was spinning: 'What do I do now? I need to learn everything.' That began my journey of finding resources, reaching out to the Alzheimer's Association, and gathering knowledge.

[00;16;44] Dr. Lakelyn:
Because of his young age of 55, denial is so understandable—people expect Alzheimer's to be a disease of older age. Receiving that news when there's so much life ahead is devastating. You mentioned grief; grief takes many forms during caregiving. Could you share more about the grief you experienced?

[00;17;38] Karen Sandone:
To be as raw as possible: When I first noticed symptoms before the diagnosis, I was getting frustrated and angry with him—asking why he forgot his phone or reminding him I'd already told him something. My first stage of grief was overwhelming guilt that I had been angry with him. I had to resolve that guilt, acknowledge it, and move past it because feeling guilty wasn't helpful.

The second stage was asking: 'Why us? How could this happen to us?' We were actively planning our future, having just purchased a shore home in October 2022. Our retirement plan was moving to the shore and traveling to Florida in the winter. I couldn't believe this was my life and kept asking 'Why us?' Then I felt immense anger over the diagnosis and its impact on our family, knowing he would never return to work and that everything fell on my shoulders. Anthony and I had a wonderful marriage and shared all household responsibilities, but now I had to adapt to becoming a single-income family.

Yet, during that period, I also held intense hope. Leqembi had just received FDA and Medicare approval in July 2023, and I was so hopeful it would slow progression. I told myself, 'We have 10 years; they'll find a cure soon, and Leqembi will slow this down.' In earlier videos of us, you can hear us both saying, 'We're going to beat this!' At the time, I hadn't done deep research. Once I connected with the Alzheimer's Association, I realized the reality of this uphill battle.

[00;21;04] Dr. Lakelyn:
Thank you for sharing those raw emotions. It's a unique time in the Alzheimer's space with new disease-modifying treatments bringing hope, paired with the reality of living through a progressive disease. Connecting with the Alzheimer's Association early on helps families access vital information and resources.

[00;22;08] Karen Sandone:
It really does. While some caregivers keep their journey private—which is their choice—Anthony and I attended the Alzheimer's Association Leadership Summit in February 2024. We met thousands of people going through this and realized how many young people are impacted. Listening to speakers in the crowd, I broke down crying for the first time as the scale of this disease hit me. A woman sitting next to me grabbed my hand and passed me a tissue—a moment I'll never forget. It was the beginning of my understanding of the immense volume of families impacted.

Returning from the summit, I knew I had to get involved. A young-onset diagnosis brings about 20 major high-level decisions you must immediately evaluate: short-term disability, establishing power of attorney, updating wills, evaluating housing, and securing single-income finances. I couldn't control the disease, but I could prepare our lives and children for what was coming, so I tackled those high-level decisions step-by-step.

[00;24;26] Dr. Lakelyn:
That proactive planning is so crucial. Early diagnosis gives families the gift of time to make legal, financial, and care decisions alongside the person diagnosed. At what point did your family decide to publicly share your story?

[00;25;10] Karen Sandone:
I give full credit to Anthony's daughters! They started sharing funny videos and conversations with their dad on social media, creating 'Anthony vs. Alzheimer's' and a TikTok called 'Tony TikTok.' It resonated deeply with people. I started appearing in the videos, and we received a flood of questions.

People on social media who had no understanding of Alzheimer's were shocked to see a young 55-year-old couple navigating this. As the videos went viral, answering questions became a coping mechanism for me. I connected with young-onset caregivers across the country and internationally. We felt like we were genuinely helping people. We never intended for it to become as large as it did, but I am now on a mission to provide support so no one has to navigate this scary, isolated journey without guidance.

[00;27;49] Dr. Lakelyn:
It's so admirable how you've used your platform to connect families. Could you share more about 'Surviving the Now'—the support community you co-founded with fellow caregivers?

[00;28;31] Karen Sandone:
Early on, I realized how difficult it is to talk with friends and family who aren't living this reality—they want to support you, but they don't truly understand. I found three women who did: Eileen Ware (whose husband Steve had later-stage young-onset) found me at a Purple Gala event where Anthony and I spoke; Sherry and Becca found me on TikTok. The four of us started a private Sunday Zoom support group.

We were all in different stages—early, moderate, and late—and understood each other completely. Realizing how valuable our discussions were, and unable to keep up individually with the flooding social media messages on my Instagram (@k_sandone), we launched 'Surviving the Now' as a formal mission. In October 2023, we hosted our first live 'Zoom-cast' so we could see people's faces and answer chat questions directly. Over 170 people registered for our very first session!

We just launched Season Two last night with over 75 live participants and over 6,000 downloads. We address topics caregivers are afraid to ask about, grounded in peer experience rather than clinical jargon. Recently, we expanded into regional support groups. I facilitate the Pennsylvania/New Jersey regional group with 20 caregivers—we have an active group text, monthly Zoom meetings, and meet in person! It has become an amazing platform.

[00;32;37] Dr. Lakelyn:
That is incredible! What are some of the most common or unique topics you discuss on 'Surviving the Now'?

[00;33;03] Karen Sandone:
We started by covering practical 'next steps' following diagnosis—elder law attorneys, disability, and how young-onset differs from late-life Alzheimer's (navigating careers, raising kids, and college tuition in your 50s).

We held a powerful episode on intimacy and marriage, discussing how a diagnosis shifts a marriage from a mutual romantic partnership to a patient-caregiver relationship—a profound loss to digest. We also discussed 'caregiving lasts'—the last time driving, the last text received (April 2023 for me), and the last phone call.

Another highly popular episode featured our adult children—my stepdaughters, Sherry's son, and Becca and Eileen's children—sharing their perspectives on their parents' diagnosis. Hearing the children's grief and strength was profound. Next, we're launching a dedicated group for the adult children of caregivers. Last night, we discussed transitioning into new stages of caregiving and making difficult long-term care decisions.

[00;35;56] Dr. Lakelyn:
Those topics are so real and resonant. Giving adult children a dedicated space to share is beautiful, as grief looks very different for a child than for a spouse.

[00;36;34] Karen Sandone:
Yes! In the beginning, I didn't fully understand their grief and they didn't understand mine. We had to work hard to appreciate those differences.

[00;37;01] Dr. Lakelyn:
You also serve as an ambassador for the Alzheimer's Association and advocate with the Alzheimer's Impact Movement (AIM). How has your advocacy evolved?

[00;37;34] Karen Sandone:
Advocacy has been incredibly healing. We created 'Sandone Strong' and host an annual local fundraising event every April, raising over $100,000 for the Alzheimer's Association research. I also travel to Washington, D.C. every June with AIM to lobby Congress for Alzheimer's legislation and caregiving bills.

Recently, I was appointed to the Board of Directors for the Southeastern Pennsylvania Chapter of the Alzheimer's Association. My primary board initiative is advocating for family caregivers—over 13 million unpaid caregivers in America are lost in the shuffle and overwhelmed by care costs. Next week, Anthony and I are moving out of our home into a 55+ community so I can provide better care. I shouldn't have been forced to make that financial decision, and no caregiver should. I hope my board work drives systemic change for caregivers.

[00;39;57] Dr. Lakelyn:
Thank you for your tireless advocacy! Caregivers do get lost in the shuffle, and lifting your voice creates real empowerment. Where can our listeners follow your work and connect with your channels?

[00;41;07] Karen Sandone:
On Facebook: Karen Rio Sandone. On Instagram: @AnthonyVsAlzheimers and @K_Sandone. On TikTok: @K_Sandone and @TonyTikTok. My personal accounts focus on caregiver tips, resources, and life adjustments, while the kids share beautiful messages about their dad. I also host Instagram Live sessions to answer caregiver questions directly.

[00;41;57] Dr. Lakelyn:
Karen, I am so grateful for your wisdom and advocacy today. If you could leave caregivers listening with one final parting thought—especially those navigating a new diagnosis—what would it be?

[00;42;19] Karen Sandone:
First: Give yourself grace. Take a deep breath, get control of your thoughts, and understand what to expect. Plan as much as possible, even though it's difficult.

Second: Prioritize self-care. 76% of caregivers develop chronic health conditions from caregiving stress. You must find small ways to care for yourself—even 10 minutes a day. Eat right, step outside, and secure moments to yourself so you don't burn out.

[00;43;22] Dr. Lakelyn:
All wonderful advice to leave us with. Karen, thank you so much again! It's so good to see you, and I look forward to connecting in person again soon.

[00;43;45] Karen Sandone:
Thank you very much! You have a beautiful family.

[00;43;49] Dr. Lakelyn:
Thank you! Karen, thank you for trusting us with your family story and for making other families feel less alone. Your story is a vital reminder that young-onset Alzheimer's impacts the entire family—shifting careers, plans, and relationships.

I appreciate your reminder to 'live in the now' and find meaningful moments together despite uncertainty. To our listeners: You do not have to figure everything out by yourself. Information on 'Surviving the Now,' Karen and Anthony's social channels, and resources mentioned today are in our show notes.

If you found today's episode helpful, please subscribe, leave a review, and share it with another caregiver. Follow @HomeInsteadInc on Instagram for updates and tips. Thank you for listening, and please remember to take good care of yourself while you care for others. Caregiver Chats is brought to you by Home Instead; visit homeinstead.com to learn more.