Ep 07: How Does Dementia Affect the Entire Family?

In 2023, an estimated 6.7 million Americans age 65 and older are living with Alzheimer's, which will likely double to 12.7 million by 2050. Yet our health and long-term care systems aren't prepared to support this population or their families, many of whom are strained financially and emotionally.

In the seventh episode of A Question of Care™, Robert Espinoza is joined by expert guest Jason Resendez, President and CEO at the National Alliance for Caregiving. They speak about the latest trends in dementia, its impact on millions of family caregivers, and how our country should support everyone as dementia cases continue to rise.

Robert Espinoza: How did the wealthiest country in the world get to a point where it can't support the health and long-term care needs of more than 54 million older adults? Welcome to A Question of Care™, a podcast that explores the many answers to this question through different viewpoints and topics. I'm your host, Robert Espinoza, a national expert and frequent speaker on aging, long-term care, and the workforce.

On this episode, we'll uncover some of the truths and misconceptions surrounding the complex topic of dementia. Here, as our guiding expert, is none other than Jason Resendez, a renowned authority on caregiving, aging, and research equity.

Jason Resendez: My name is Jason Resendez, and I'm the President and CEO of the National Alliance for Caregiving.

Robert Espinoza: Dementia is a subject that has impacted many of us. It exerts a profound impact in the United States, placing an emotional toll on individuals and families and straining healthcare systems and social support networks. As the older adult population grows, the prevalence of dementia-related conditions poses significant challenges, which will require more resources for caregivers, medical professionals, and researchers to alleviate the burden on everyone who's affected.

What is dementia? As Jason defines it…

Jason Resendez: Dementia is a family of symptoms related to memory loss and loss of executive function. The most predominant form of dementia, and the one that we often hear about in the news and making healthcare headlines, is Alzheimer's disease. So, it makes up a significant number of the cases of dementia or dementia caused by Alzheimer's disease.

Alzheimer's is a progressive neurological condition that, over time, erodes executive function, erodes memory ability, and erodes an individual's ability to connect with family members, friends, and loved ones.

And because of the progressive nature of the disease, it has a tremendous impact, not just on the individual, but on the individual's family, particularly the caregiver of an individual living with dementia. And in turn, it has ripple effects throughout a family and throughout communities.

So, because of the progressive nature of Alzheimer's, for example, we see a lot of folks over time because symptoms become progressively worse… Individuals have to leave the workforce. Eventually, they need round-the-clock care. So it's that round-the-clock care. That then necessitates the active participation of a caregiver, oftentimes a family member. So that means, particularly in instances of individuals living with limited resources, individuals are having to leave the workforce to provide that care, or they're having to put their loved one in an institutionalized setting, often a nursing home.

So, it's one of those issues that has ripple effects. It has ripple effects for the individual, family, and communities. It's one of those issues that's really destabilizing families and communities, and often, it's doing that in the shadows. It's one of those things; there's a lot of stigma around dementia, particularly around Alzheimer's disease.

But we're starting to see that change. Thanks to conversations like these and the work of organizations like UsAgainstAlzheimer's, where I spent nearly a decade of my career, and leaders like you and others, helping to raise awareness and destigmatize the conversation around dementia.

Robert Espinoza: When you look at the numbers on dementia in this country, as you know, they are startling. They show that an estimated 6.7 million Americans age 65 and older are living with Alzheimer's in 2023, which will likely double to 12.7 million by 2050. You've touched on some of these points, but what does this mean for our country as a whole?

Jason Resendez: Yeah, it has the effect of destabilizing families and communities. This [issue] is one of the most under-addressed health crises in this country. We're starting to see that shift. There's been a lot of progress in the fight against Alzheimer's and other dementias, but primarily Alzheimer's, over the last three decades.

And that's for good reason. Until recently, it was one of the only top 10 causes of death that had no therapeutic that could modify the underlying cause of the disease. But we're starting to see really great progress and strides in addressing the ripple effects of dementia.

When we think about what those effects are, there are tremendous economic costs associated with dementia. One, in terms of individuals leaving the workforce, but also in terms of the cost of caring for someone living with dementia or Alzheimer's, right? The costs of the Medicare and Medicaid programs are tremendous when we think about how we are navigating and how dementia is addressing or affecting individual families.

And so there's a tremendous economic cost in specific communities—in the Latino community alone, we projected that by 2060… This is a partnership with the USC Roybal Institute on Aging… By 2060, the cumulative economic impact of Alzheimer's on the Latino community would reach $1.3 trillion. That's $1.3 trillion of Latino wealth wiped out by one disease: Alzheimer's disease. That was a conservative estimate.

And so there's tremendous economic impact that is easy to quantify. What's not easy to quantify is the emotional toll on families and individuals. That psychological toll [it's] taking on individuals from a family or shifting the way that individuals participate in a family.

I grew up in Latino households, which are very intergenerational, right? We grow up with our family members living with us; care is part of that equation. But when you have Alzheimer's dementia, in that equation, things change. There's a lot of stigma. There's a lot of hushed conversations. There are a lot of folks leaving the workforce to provide care. So, there are tremendous impacts when it comes to Alzheimer's and other dementias on our communities and our families.

Luckily, we're starting to see some tides shift. I'm hoping we can talk a little bit about that. But we're starting to better understand, for example, the role that prevention plays in addressing the impacts of Alzheimer's and other dementias.

We're starting to see more therapeutics come online that can help address not just the symptoms of dementia but also start to address the underlying causes of the pathology of Alzheimer's and other dementias. So it's a really exciting time, but it's one that comes after many, many, many decades of impact. Many decades of not understanding how we best effectively address this disease. And we're starting to feel that, right? When you think about caregiving and the demands and hardships of care, when you look at the data, Alzheimer's and other dementias are one of the number one reasons why folks have caregivers in this country.

Robert Espinoza: I want to shift the conversation to the role of families and family caregivers. I think many of us have experienced what it means to be a family caregiver, including what it means to be a family caregiver with someone living with dementia. Who is the typical family caregiver, and what are their primary responsibilities and tasks?

Jason Resendez: Yeah, so caregiving is one of those things that impacts all of us. When we think about who the typical caregiver is, you know, it's a mom, a son. It's a daughter. It's a neighbor, right? Caregiving manifests in so many different ways. And we all perform caregiving duty at one point in our life, either in receiving care or providing care.

But when you look at the data of the caregiver providing care today, it's a woman in her late forties providing care for a loved one, typically an older adult spouse, either a mother or father or an in-law. And in terms of the kinds of care that she's providing—she's providing care around assisting with activities of daily living, two or more activities of daily living. So, [she's] helping a care recipient get out of bed to feed, change, and move from a bed to the bathroom, for example. Helping individuals live in the home as well—a family caregiver is doing.

We know that a large number—over 50 percent of caregivers- are helping with medical and nursing tasks. So, these are complex care tasks. It's particularly the case of dementia, where, over time, symptoms become worse, and individuals can't care for themselves. So they're providing complex care that could involve changing a catheter. It could involve feeding tubes. It could involve a number of things that are more complex.

And we see a large number of caregivers who are providing that type of care, often without any training. In fact, just 30 percent of caregivers have said that their provider has asked them: what can we do to help you provide care for your care recipient? So, most caregivers are providing complex care but providing that care without any support from the healthcare system. And so there's a lot of hardship that gets placed on the caregiver, a lot of responsibility that gets placed on the family caregiver. And that responsibility increases for individuals providing care for someone living with a serious illness like Alzheimer's.

Then you also have folks providing care for someone that might be more sick, someone recovering or in remission from cancer, for example. Or recovery from a stroke and sort of a more cyclical kind of caregiving responsibilities.

It's not easy. Care is something that we do. I think about my mom. I watched my mom raise three kids while working a full-time job and caring for my grandmother, who lived with multiple chronic conditions. She did it with extreme love and compassion for her mom and her family and was working to juggle all that. But she also did it out of necessity—there was no other option for her, right? So, just because she did it with love doesn't mean it was easy. So, there's this level of complexity involved in caregiving that caregivers are navigating every day.

Robert Espinoza: According to the research, Black and Latino caregivers are more often in high-intensity care situations than other racial and ethnic groups. But they are also more likely to report that caregiving provides them with a sense of purpose. What lessons do you draw from those findings?

Jason Resendez: I think one of the most fascinating things about that data is that when you look at a sense of purpose and emotional fulfillment for Black and Latino caregivers, we see that it might act as a buffer for some of the emotional levels of distress that we see in care. So, despite being in higher-intensity care situations [and] having worse financial impacts due to caregiving, family caregivers of color who report higher levels of fulfillment from caregiving [also] report lower levels of emotional distress.

That suggests that there's a buffer effect when it comes to levels of fulfillment and purpose from caregiving, and that speaks to resiliency, a resiliency that we have to invest in as a system. And right now, we're not doing that adequately, right? We're not prioritizing the needs of caregivers, particularly caregivers of color. We're not investing in training. We're not investing in economic opportunity. We're not investing in support. [We're not] looking at how we can support caregivers through more affordable and accessible direct care support, for example.

It's an area of research that's promising because anywhere we can see caregivers feeling emotionally fulfilled and how that might relate to addressing the mental health effects of caregiving is a positive. But [this research gap] still underscores the need to invest in supporting these caregivers and their care journeys.

Robert Espinoza: Jason, I want to talk for a bit about solutions. As we look at the growing numbers of people living with dementia, what do you think our country should prioritize to support families?

Jason Resendez: Yeah, that's a great question. I think about what if I had a magic wand. What could we do to better support family caregivers? One, from a policy perspective, there's so much more that we can be doing to build the care infrastructure in this country to make caregiving, whether it's for someone living with dementia or someone living with a serious illness, more sustainable, more dignified, and more equitable.

And when I think about what policy solutions exist to help us do that, one is policies that recognize the tremendous economic value that caregivers provide. Then, there can be policies like paid family and medical leave. We know that 60 percent of family caregivers are navigating care while working. That's true for dementia caregivers in the same way that it's true for other caregivers. And so we have caregivers who are making the hard choice of—do I continue to provide quality care for my loved one, or do I go to work so I could put food on the table?

And without a paid family and medical leave policy, that decision can become untenable over time. We see a lot of caregivers, particularly dementia caregivers, eventually leave the workforce to provide care that disproportionately impacts women caregivers and women of color caregivers, and caregivers who have lower levels of education. So, it becomes a really urgent equity issue. Paid family leave, while it's not a silver bullet, can move us in the right direction in terms of helping support economic pathways over time for family caregivers, and research supports that. We see research in states that have passed paid family leave suggesting that, over time, it contributes to economic opportunity and stability, particularly for women.

I think another really important policy to help support dementia caregivers and caregivers over time is things like caregiver tax credits. This [policy] is particularly true for a dementia caregiver who becomes vital over the course of a disease. And in providing care, we see folks going into debt to provide care. There are a lot of out-of-pocket costs associated with caregiving; whether that's paying for things like adjustments to a home to ensure mobility or personal care things, you name it. And that all comes out of pocket and is not tax deductible. So, some legislation has been introduced to help make those caregiving expenses tax deductible, which is a step in the right direction.

I think one of the big issues is how we put in place care infrastructure that better supports the family caregiver and the person receiving care. What are those things that bridge those two issues? And that's where the direct care workforce is, and investing in our direct care workforce through better wages and other policies is critical. Because we're asking so much of the unpaid family caregiver, we need to consider what holistic support looks like and how they can better engage and be supported by direct care workers [since family caregivers] are more accessible and affordable. Make sure direct care workers are making a living wage yet are still accessible to families who need them. And so that's another critical area.

And then, when we think about dementia. For the first time, like I alluded to earlier, we're starting to see more progress when it comes to delivering therapeutics to support or address the underlying causes of Alzheimer's and other dementias. And so this has been a long time in the making, but over the last year, we've seen a sea change when it comes to new therapies available to individuals with Alzheimer's, specifically.

That can help because you buy time, and the more time you have to plan for care over time, make decisions, and have hard conversations. So, being able to stay at a certain level of cognition for longer really helps to address some of that hardship. Making sure that those therapeutics are effective, safe, accessible, and affordable might be another area from a policy perspective that we need to focus on. And that'll have ripple effects, not just for the individual, but for the caregiver as well in Alzheimer's and other dementias.

Robert Espinoza: Let me ask you one more question. If you had all the power in the world to immediately change one thing in this country regarding family caregiving, what would you change?

Jason Resendez: If I had a magic wand and could put in place changes to better support caregivers, I would focus most on addressing the stigma associated with care. I think one of the biggest issues we see is that—and it's why it's so hard to address the care crisis—is that not everyone sees themselves as caregivers. And so making sure that folks felt comfortable identifying as a caregiver who saw themselves in the culture around care. I think it can help us have more of a conversation and create the political will we need around supporting care.

Robert Espinoza: I remember the first time I heard the term "long-distance caregiver" and its impact on me. When my mother entered a northern Colorado nursing home at the end of 2015, I lived more than 1,700 miles away in New York City.

I knew she was receiving round-the-clock skilled care and that my father was visiting and supporting her almost daily. However, I didn't consider myself a caregiver, even though I called her frequently and visited her three times a year. I reasoned then that I wasn't at her side, assisting her physically throughout the day, so the term didn't apply to me. And I was wrong.

I would learn over time that the emotional support I offered from afar was an authentic form of caregiving. According to the National Alliance for Caregiving, I was part of the 15 percent of long-distance family caregivers in this country, totaling 15 million people and growing. Through research, this organization has uncovered, along with AARP, that 47 percent of long-distance caregivers are likely to report emotional distress, as compared to 43 percent of caregivers who are living with their care recipient or 28 percent who live less than one hour away.

All of this distress exploded when COVID-19 emerged. At the time, my mother had lost function in both arms, which meant she needed support from staff to use her cell phone, along with other activities. However, this crisis devastated nursing homes and strained their staff, which meant they weren't able to help her with calling home. And when I would dial the nursing home directly, the phone would ring endlessly. So I asked our family in Mexico to send me digital photos, and I used an app to create postcards from these pictures and mail them to her every day with updates on my life, our family, and the pandemic. I lay awake late into the night, imagining how it must have felt for her to be separated from our family, to watch the daily news and see that nursing home residents were dying in droves, and sensing this fate would come her way eventually.

In December of that year, I was at her side the day she was diagnosed with COVID-19. She looked away as she told me this news, quiet and forlorn, knowing her fragile body would not withstand it, given her other health complications. I told her I would be nearby and that we all loved her. Her nursing home, like others around the country, was experiencing another COVID outbreak, and staff rushed around us wearing PPE. Three days later, she was dead, and as with many fatalities that year, there was no service, no memorial with family and friends honoring her incredible life and presence.

The truth about the distress experienced by family caregivers is that it doesn't go away when a loved one passes. It simply transforms into grief and perches itself on your shoulder, whispering vivid, sometimes gorgeous, and often harrowing memories. The bond that many family caregivers form with the people they support, especially in their final moments, imparts lessons about mortality and how we wish to experience our final days if we have a choice.

It can also teach us about the types of lives we want to live.

While preparing a eulogy for her that I would post on social media that week, I reread an anthology of poems she published in Mexico in the 1980s. I was a child at the time, and she addressed one of her poems to me. In this poem, she implores me to remember her and my father as they reach older age. She asks me not to neglect them simply because they are old.

It's startling, and it reads like prophecy, given my career. But it was also her way of using art to share a message we should all be spreading widely. We have a political imperative as a country to support older people and their families and to create a culture that assists all of us to live, age, and die on our terms. And there could not be a more urgent moment than now.

Thank you to my guest, Jason Resendez, and you, our listeners. If you enjoyed this episode of A Question of Care, please share it on your social channels and stay tuned for future episodes. This podcast was produced by me, Robert Espinoza, in partnership with Modry Media. Please make sure to rate and review the podcast wherever you're listening.

This transcript has been slightly edited from the original episodes to improve readability and accessibility—while preserving the guest's authentic voice and conversational style.