Caring Together with Jason Resendez

Show Notes

Alzheimer’s and related diseases don’t just affect memory. They also bring behavioral and psychological challenges known as neuropsychiatric symptoms, or NPS. These can include anxiety, depression, agitation, and sleep disturbances, making life difficult for both patients and caregivers. As symptoms progress, so do the risks of injury, isolation, and the need for institutional care, often worsened by stigma and limited support.

To address this, the Alliance for Aging Research and the National Alliance for Caregiving co-hosted the “Caring Together” summit in December 2025, bringing together experts, caregivers, and people with lived experience to share practical tools and strategies—now captured in a new white paper. Joining us today to discuss these resources is Jason Resendez, President and CEO of the National Alliance for Caregiving, where he leads efforts to better support more than 63 million family caregivers nationwide.

Transcript

Katrin Werner-Perez:

Hello, and welcome to This Is Growing Old, the podcast all about the common human experience of aging. My name is Katrin Werner-Perez. I’m the Director of Health Programs, and I’ll be your host today.

Alzheimer’s and related diseases not only rob people of their memories, but they often lead to significant behavioral and psychological symptoms. Known as neuropsychiatric symptoms, or NPS, they can include anxiety, depression, agitation, apathy, psychosis, sleep disturbances, wandering, and more. For the person experiencing them, such symptoms can be really scary and difficult to navigate. And as the symptoms progress, so do the risk of injury, mortality, and institutionalization. Taking care of a loved one who’s experiencing these symptoms can be really challenging, and especially when there’s a lack of awareness and support from healthcare professionals. Social stigma is also common, and along with it can come isolation. But thankfully, there is a lot of support out there, and our goal today is to spread the word about it.

In December 2025, the Alliance for Aging Research and the National Alliance for Caregiving co-convened a virtual summit, Caring Together: Empowering Families and Health Professionals with Tools for Better Neuropsychiatric Symptom Care. This interactive summit brought together a range of experts, caregivers, healthcare professionals and people with lived experience to share real-world stories, practical tools, and evidence-based strategies, and this summit was then published as a white paper.

Today we’re going to talk about the summit and the white paper, which were made possible with support from Otsuka and Lundbeck. Joining us today to discuss the summit and resources on NPS is the National Alliance for Caregiving’s President and CEO, Jason Resendez. Jason is a nationally-recognized family policy expert and advocate, and as president and CEO of the National Alliance for Caregiving, he leads research, policy, and systems change initiatives to transform how America values and supports its over 63 million family caregivers. Jason, thank you so much for being here. You are a friend of the Alliance, and we’re so grateful to have you, so let’s dive in.

Jason Resendez:

Excellent. Thanks for having me. Excited for the conversation.

Katrin Werner-Perez:

Wonderful. So how did you come to be so passionate about family caregiving in general, and specifically for people living with Alzheimer’s and related diseases?

Jason Resendez:

Yeah, absolutely. For me, and like millions of other Americans, this is a personal issue. I grew up watching my mom raise three kids while working a full-time job and caring for my grandmother, who battled multiple chronic conditions. And she did that out of a deep sense of love and commitment for her family, but also because she had no other choice. There weren’t affordable alternatives in our small South Texas town, and that care had ripple effects for her and for our family. She had a dream of becoming a Certified Public Accountant, but she was never able to finish her college education because of her caregiving responsibilities, so her dreams took a back seat to the realities of care, and that’s a reality that millions of Americans share.

And so it was really that personal experience that introduced me to caregiving before I even knew the word caregiving, knowing that my mom was a sandwich generation caregiver, one of over what we know now is 16 million American shouldering care for children alongside care for adults in their lives. And when we look at the data, a big driver of that caregiver hardship are progressive serious illnesses like Alzheimer’s disease, and that is something that over time has become a reality for members of my family. One of my great-uncles, my grandfather’s best friend growing up, in later life developed Alzheimer’s.

And so it’s one of those issues that often lives in the shadows, and it’s really that reality that brought me to this work, right, the understanding that there’s an opportunity for longevity, for aging to be a beautiful gift. But in order to realize that potential, we have to address the challenges associated with caregiving, the challenges associated with diseases like Alzheimer’s. NPS, I think, fits right within that category.

Katrin Werner-Perez:

Absolutely. And just echoing what you said, so many Americans in the world, people, can relate to this. They’re experiencing it, they know someone that’s experiencing it, so it’s so incredibly common. And that leads us perfectly into our next question, which is that many people are surprised to learn that neuropsychiatric symptoms, or NPS, impact as many as 97% of people living with Alzheimer’s and related diseases. So why do you think that the awareness is still so low, given the prevalence?

Jason Resendez:

Yeah. Honestly, I think stigma has a lot to do with it. When someone’s living with Alzheimer’s and they become agitated, they wander, they experience hallucinations, it’s easy and I think very human to frame that as a behavioral problem, as if they’re choosing to act out or being difficult, but that framing can do real harm. These are medical symptoms rooted in neurodegeneration, not choices, and when we treat them as behavioral failures, families feel shame. They hesitate to talk about what they’re experiencing, to talk about it with their providers, and oftentimes clinicians may not probe further.

So there’s also the reality that memory loss tends to dominate the public conversation around Alzheimer’s disease. NPS often fly under the radar, even though they can actually appear before significant cognitive decline or memory-related issues. So until we shift the cultural conversation to recognize NPS as the widespread serious medical symptoms they are, awareness will remain low and families will continue to navigate this in the shadows. And that’s why I’m grateful for the Alliance for Aging Research for taking on projects like this, to pull back the curtain on these realities, and to put the clinical practice change that we need alongside the cultural change that we need to bring NPS into the light.

Katrin Werner-Perez:

Wow. That was incredibly powerful. And anecdotally, because of the Alliance and the work that the National Alliance for Caregiving does and everyone in this space, to share personally, I have a family member who started to have neuropsychiatric symptoms before she had the cognitive decline. And because of the awareness of me being in this space, I was able to encourage them to seek some care, and they did eventually receive a diagnosis, I think far earlier than maybe someone else who wasn’t aware, and they were able to get earlier interventions to help. So just putting it out there, that it really is key that we break the stigma so people can get the help they need.

Jason Resendez:

Yeah, absolutely. That’s a powerful example.

Katrin Werner-Perez:

Yeah. So survey research also shows that clinicians often don’t ask questions or provide information about these neuropsychiatric symptoms to patients or their family caregivers. In the white paper report that we have come out with that was from the summit, it makes a point of saying that NPS are not just willful behavior. So why is that distinction important, and what resources are available for families to initiate conversations with their doctors?

Jason Resendez:

Yeah, I think that distinction is everything. When NPS are seen as behavioral choices, the response becomes correction or management rather than treatment. So it strips away empathy both from providers and, heartbreakingly, from families, who may find themselves frustrated or even resentful towards the person that they’re caring for. So recognizing NPS as a medical manifestation of disease reframes the entire caregiving experience and then I think treatment journey. It opens the door to clinical intervention and appropriate support. But like your personal story, recognizing it, it’s not so easy to know where to go from there. But the good news is families don’t have to walk into the doctor’s office empty-handed, thanks to the amazing work of the Alliance and others in this space. There’s some excellent tools specifically designed to help start these conversations. These are outlined in the report.

So the Agitation and Alzheimer’s Screening for Caregivers questionnaire, or AASC, it’s a great starting point. It’s an online quiz that caregivers can complete and then share directly with their clinician, to open a dialogue about whether their loved one may be experiencing agitated-related NPS. The KAER Toolkit for Brain Health developed by the Gerontological Society of America, a good friend to both the Alliance and the National Alliance for Caregiving, is another strong resource. It guides clinicians and care teams in proactively identifying cognitive impairment and connecting individuals to community-level supports.

And the American Academy of Physician Associates NPS Toolkit is a practical guide designed for both clinicians and caregivers around post-diagnosis care. It covers what NPS looks like in daily life and how to manage them. And the Alliance for Aging Research NPS video series with Dr. Carolyn Clevenger breaks down six of the most common NPS, what to expect and how to seek support. It’s a wonderful resource to watch before a medical appointment, so you feel informed and empowered walking into your provider’s office. And all these are available at agingresearch.org/nps.

Katrin Werner-Perez:

And I have to say … and it is not just because they’re from the Alliance … that series with Carolyn Clevenger, I have watched so many times. It is like having a clinician in your back pocket. And even though I know what they say and I basically have them memorized at this point, when we’re going through what we’re going through with my family member, it’s just helpful to have that reminder, to know that this is normal, it’s all part of the journey, and so I just had to put a plug in.

Jason Resendez:

Yeah, I love that. And seeing something or reading something is one thing, but to see it and to hear from an expert professionally in a way that you can pause and rewind and go back, I mean, that can make all the difference when you’re dealing with an issue that, like we talked about earlier, can be highly stigmatized, highly complex, interwoven with emotional issues and trauma. So having a resource like that I think can make all the difference.

Katrin Werner-Perez:

So the survey cited in the white paper found that 93% of those caring for someone with Alzheimer’s-related agitation report feeling overwhelmed or emotionally drained. What are examples of resources for folks to learn more about NPS management and support?

Jason Resendez:

Yeah. Well, first, I want to say that number, that 93% number, is staggering, but it doesn’t surprise those of us who’ve seen what caregiving actually looks like up close. So what I want caregivers to know is that you’re not alone, and there’s real tangible help available. The Alliance for Aging Research has developed a comprehensive video series that we’re talking about with Dr. Clevenger, where she walks through the six of the most common NPS, agitation, apathy, anxiety, depression, sleep disturbances and psychosis, explaining what each of those looks like and what families can do. There’s also a powerful expert series featuring clinicians, family caregivers and people living with Alzheimer’s, sharing their real experiences. These videos are a wonderful starting point for understanding that what you’re seeing is something that’s shared by millions of Americans, and that can help folks feel less alone.

And Hilarity for Charity, a great friend of I think both the Alliance and the National Alliance for Caregiving, offers an amazing respite program that provides financial assistance so family caregivers can secure in-home care and actually take time to rest and recharge. Their data shows that 93% of grant recipients report improved stress management. So this isn’t just a nice idea, it works. They also offer free online support groups led by credentialed social workers, which give caregivers a dedicated space to connect with others who truly understand what they’re going through. And for those navigating the clinical side, the NPS Toolkit from the American Academy of Physician Associates offers concrete guidance on post-diagnosis care, helping family caregivers understand what symptoms mean and how to work within a care team to address them.

Katrin Werner-Perez:

Wonderful. Those are all great resources and we’ll make sure that those are listed with this episode as well, so anyone listening or watching can access those. So in the experience with my family member, going through this journey, it can feel like there are these large gaps where you feel largely isolated and alone. So for caregivers listening right now who maybe feel that way, that large gap between where do I start, what is that next step, what is the first step that you’d encourage them to take?

Jason Resendez:

I think you gotta name what you’re seeing. So many family caregivers spend enormous energy wondering if what they’re observing is normal, or questioning whether they’re overreacting. So if your loved one is experiencing changes in mood, behavior, sleep, or how they perceive reality, write it down. Note when it happens, what seems to trigger it, and how it affects their daily life. This could be a notepad, it could be an Excel sheet. There’s so many apps now out there around caregiving that folks can use, but that simple act of documentation transforms what feels like chaos into information that you can bring into a doctor’s office. And then from there, I encourage you to visit at agingresearch.org/nps and take a look at the AASC questionnaire. It takes just a few minutes and it can help walk you into the next medical appointment with language and structure, which makes all the difference when appointments are short and the stakes feel so high.

And I also want to say this directly to all the family caregivers that might be listening. I know that in the face of a serious illness like Alzheimer’s or another form of dementia, it feels so easy to be overwhelmed or overpowered by the disease, by the situation, by the uncertainty about not knowing what comes next. But these tools and resources are an important way to take back some of that power, to do something. Even when it feels small, even when it feels like one tiny step forward, that matters, because what caregiving really is is not one heroic moment, but the accumulation of small, intentional acts of devotion and advocacy, day by day. So you don’t have to have all the answers, you just have to take the next step.

Katrin Werner-Perez:

That is phenomenal. That is great advice, and so powerful. I know that that’s going to mean a lot to anyone listening or watching right now. And I can’t echo enough the importance of you knowing your loved one. And I think it’s so easy for some of these symptoms, to dismiss them not only as willful behavior, but as aging. “Oh, well, they’re getting forgetful. That’s just part of aging,” or, “They’re wandering around or having trouble sleeping. That happens.” I think it’s just important to remember that you know your loved one best, and if something is sticking out to you, to your point, write it down. No harm in just writing it down and talking to your doctor and checking out these resources.

Jason Resendez:

Yeah, absolutely. I mean, I think one of the most powerful things that a caregiver can do is to recognize and reflect on their … you know, lived experience is power. Knowing who they’re providing care for, understanding that that experience is just as important to a provider as a blood pressure reading. That lived experience, that intimate knowledge, is power, and really recognizing the importance of being able to bring that to the table. And so that can help to create opportunities for improving care and then also opportunities for recognizing, “Hey, I might not be a provider, but I’m an expert in the person that I’m providing care for.”

Katrin Werner-Perez:

Yeah, right, and your provider wants to hear that. They want to hear those. Maybe something that to you might not be … you notice it’s something a little different, but you don’t think it’s huge, that might be big for your provider. So important to bring everything to them, absolutely.

Jason Resendez:

Yeah, and why these tools are so important, because it helps you navigate and put into context that lived experience and those observations, in a way that you can bring to the table with the provider for a more structured conversation.

Katrin Werner-Perez:

I love that. I mean, yeah, definitely advocating that patient advocacy for yourself and for your loved one. Like you said, how many times have we had the unfortunate reality of going into your doctor’s office and you feel a little like you don’t have a lot of time with them. So the more that you can be there with the right information, the right tools, you can really make use of that time.

Jason Resendez:

Absolutely.

Katrin Werner-Perez:

So now for two questions we ask all of our guests. First, when you were younger, what did you imagine growing older would be like?

Jason Resendez:

Oh, man. What a great question. I love these. So I grew up in a big Mexican-American family where generations blended into one vibrant community with my great-great-grandmother. We called her Mama Panchita. She was at the center of it all, so some of my earliest memories are of the milestone birthdays we celebrated as she got older. Her 90th was a particularly big moment for our family.

So I think what I imagined was that aging was simply a family affair, something that you moved through together, surrounded by the people who loved you, but a lot has changed since I was five or six years old. Family dynamics and household structures look very different today and more people are navigating loneliness and isolation, precisely because we don’t have the infrastructure in place to support healthy aging, from clinical care for age-related conditions like Alzheimer’s to social services that actually support family caregivers.

I didn’t see any of that complexity as a child, but what I did see was something that I carry with me to this day, the deep love and devotion that can grow when generations mix, support one another, and refuse to let their elders face their hardest moments alone. And that image has never left me, and it’s a big part of why this work feels so personal and so urgent and why these types of conversations are so important.

Katrin Werner-Perez:

Absolutely. So finally, you said at five or six, that’s what it looked like to you. But finally as an adult, now that you are getting older, what do you enjoy the most?

Jason Resendez:

I think it’s perspective and wisdom. There’s something genuinely freeing about being past the stage of wondering who you are or what matters most. When I was younger, everything seemed to carry the same weight, like getting picked first, getting picked last, having the right shoes, getting into the right college. It all felt equally urgent and equally defining. But as I’ve grown older, my world has gotten so much bigger, and with that comes a clear sense of what’s most important to me, like my family, being kind, being generous, having meaningful relationships with friends and colleagues who challenge me and inspire me.

But one of my favorite parts about getting older is the ability to draw connections and find meaning across different life experiences. For example, I’ve come to see that care exists on a continuum that bonds nearly 130 million Americans, from folks providing care for children to folks providing care for older adults, and that caregiving isn’t some niche corner of burden that we’re trying to eliminate. It’s a fundamental part of the human experience. We’re not trying to cure caregiving. We’re trying to make it more sustainable and more valued, so that people can show up for the ones they love with joy instead of exhaustion, and without sacrificing their own health or financial futures in the process.

So that kind of perspective is something you can really only earn over time. And the older I get, the more I am in awe of the people doing the caregiving work every single day, quietly, faithfully, out of love, out of devotion, out of necessity. That kind of commitment deserves to be honored. It deserves to be supported. It deserves to be seen. And the older we get, the more visible that becomes in our lives, and that’s a gift.

Katrin Werner-Perez:

Wow. Incredible. I will certainly be thinking about that for a long time. Thank you. Jason, thank you so much for this amazing info, and thank you to our listeners for tuning in. Please check out the National Alliance for Caregiving’s website at caregiving.org and the Alliance’s website, agingresearch.org/nps, to access the NPS Summit recording, white paper, and all the NPS resources mentioned on today’s program. Thank you again to Otsuka and Lundbeck, whose support made all of these resources possible. You can listen to more episodes of This Is Growing Old on agingresearch.org and wherever you get your podcasts.

This episode of This Is Growing Old was produced independently by the Alliance for Aging Research with support from Otsuka, a member of the Alliance’s Corporate Partnership Council.