Care for the Family Caregiver: Lessons Learned from a Family Caregiver and Caregiving Scientist

 All right. Good morning, everyone. It’s such an honor to be here. I want you to raise your hand if you are currently a caregiver.

And I want you to raise your hand if you have ever been a caregiver at any point in your life before.

At least half the people in this room. You raised your hands. I always like to start my talks with the words of former first lady Rosalynn Carter. She was an incredible advocate for family caregivers, and she devoted her public service to addressing the mental health needs of family caregivers. And she said that there are only four kinds of people in this world.

Those who were caregivers, those who are caregivers, those who will be caregivers, and those who will need caregivers. That means everyone in this room, all of you, all of us. This is a role we enter and exit repeatedly throughout our lives. It’s one that deeply changes who we are and the trajectory for a life moving forward. Now, the COVID 19 pandemic shined a very bright spotlight on a caregiving crisis in the United States, one that predated the pandemic, but certainly was exacerbated as a result of the tremendous responsibilities that caregivers have.

And it also highlighted a mental health crisis, similarly one that predated the pandemic, but was exacerbated by the individual and collective isolation and trauma we all experienced. And falling at the intersection of these crises are family caregivers, who’ve always been at incredibly high risk for distress and now, more than ever before, need our support. Now, long before the pandemic, there was a lot of attention growing on the topic of family caregiving. I want to share with you some of the articles from the New York Times. I read in the few years preceding the pandemic.

A shortage of caregivers. More caregivers are no spring chickens themselves. Daughters still are. The caregivers caring for the Alzheimer’s caregiver. Who will care for the caregivers when the caregivers need healing?

A living wage for caregivers. For some caregivers, the trauma lingers. A millennial caregiver. My family cared for my sick aunt who’s caring for us at 75. Taking care of mom 99, we did not think she would live this long.

Pressed into caregiving sooner than expected. Caregiving is hard enough. Isolation can make it unbearable. Strategies for long distance caregiving Medicaid patient shift squeezes home caregivers a big topic right now. Training needed for home care is lacking.

Daughters will suffer from Medicaid Cuts. I can speak to that one. Caregiver Plus, MD or RN caregivers sometimes must sacrifice their careers and my all time favorite, How Getting High Made Me a Better Caregiver. So these titles speak to the range of challenges that caregivers faced and therefore those that healthcare professionals such as myself must address. From the financial toxicity of caregiving to the fact that so many of us are providing care from a distance, to the reality that the distress associated with caregiving does not end with the death of the patient.

So what do the over 53 million parents, partners, children, siblings and friends of patients living with chronic and life limiting illnesses and disabilities and mental health challenges do? The answer is they do absolutely everything. They provide support with activities of daily living and instrumental activities of daily living. They provide support with nursing and medical tasks. I’m going to turn back to that a few times today.

They provide emotional support. This is often invisible and very importantly at a time when they are no longer receiving the same level of emotional support they once did from patients. And so there’s a mismatch in support that’s received in terms of time. On average, caregivers provide care for four and a half years. But for 29% it’s at least five years.

And for 14% of US caregivers, this is a 10 or more year long journey. This is an ultra marathon. This is an ironman conducted in Antarctica without clothes or water. This is what caregiving is right now for so many US caregivers. And on average they’re providing care for 23.7 hours a week.

But for 21%, it’s a full time job, often conducted in addition to full time paid employment. And on that note, in 2023, this is striking. The annual economic value of caregiving was estimated to be $600 billion. That is the value of the efforts of caregivers accounted for $600 billion of care. Despite that, 1/4 of caregivers report high financial strain and 1/5 go into poverty as a result of caregiving.

Needless to say, caregivers are critical to our healthcare system. For 15 years I’ve been saying family caregivers are the invisible backbone of our health care system. So as a result of all these responsibilities, the majority of caregivers experience what we call caregiver burden. This is a catch all phrase. It refers to all the ways in which the caregiving role can potentially negatively impact the caregiver.

And I’m going to really focus today on the psychological component. Though of course there are physical, financial, social, spiritual and existential components of this distress. And when we do not intervene on distress, this is a typical caregiving trajectory from diagnosis through bereavement. Should bereavement be the outcome? Distress is going to increase exponentially.

This is when there’s no support. And there are particular points along this trajectory at which caregivers are at unique risk for distress. And my guess is these latter two categories are of no surprise to any of you. Of course, if a patient transitions to hospice care and a caregiver into bereavement, it’s very, very difficult. But I want to highlight for all of you, survivorship.

Now, for 15 years, I worked at Survivors Keter and Cancer Center. So in cancer care, this is when a patient is often told there’s no evidence of disease. In other illnesses, it might be a period when symptoms have abated, when there’s no need for further treatment. And in patients, we see a significant improvement in quality of life and survivorship. They say they have a new lease on life.

They’re going to return to their new normal. Paradoxically, we see the opposite experience in caregivers who for the first time take an exhale because their loved one’s doing okay. And with that exhale comes the rushing in of all of the negative emotions they were avoiding during the initial phases of their loved one’s treatment. And so, very importantly, this is a moment when caregivers need all of our help and at the same time become disconnected from the healthcare team, are no longer actually physically coming in, necessarily. So I want to flag this for all of you as a point when caregivers really need extra support and attention.

Now, there’s many reasons why caregivers are distressed. I want to highlight a few of these that come from an article written by my colleague Nicholas Odom. And the first is that this is wonderful. Increasingly, patients are living longer, right? Our therapeutic technologies are improving, but that means that caregiving journeys are getting longer and patients are not only living just with cancer or just with dementia, but with significant comorbidities, which mean the caregivers have complex tasks that they need to be performing all of the time.

There is a dramatic push to outpatient and homebound care. I’m going to share a story briefly. I’m given very little time today, but back in 2010, as a postdoctoral fellow, my first year at Sloan Kettering, I was given a consult from the bone marrow transplant service, and I was told, please review the protocol for our new outpatient and homebound transplantation program, stem cell transplant, where a patient was going to get their stem cell transplant and go home. And I read this consent form, and it said that in order for a patient to qualify for transplant, guess what they needed? They needed a caregiver, and they needed that caregiver to be available 24,7 for one month at least, ideally up to 100 days.

100 days is the mark when we know a stem cell transplantation has actually taken. And I thought, what an incredible ask. I’m going to come back to that. But we are seeing increasingly protocols like that. That’s just one example.

There’s increasing outpatient care and hospital at home programs that depend on family caregivers. And they are doing complex medical tasks once assumed only by trained healthcare professionals. Now many patients do choose to die at home. I want to be very clear that choice to die at home is not right for everyone. But for those patients who choose that, often they are living longer and longer in hospice care.

And this is a period that is very, very difficult for family caregivers. I’m sure some of you in this room have had this experience before, and this is a period when caregivers must both provide intense medical care and contend with anticipatory grief. So this is very, very difficult. There’s increased cost of medical care at home. The financial toxicity is significant.

As I said, many caregivers are providing care from a distance. So I’m a clinical psychologist by training. I came to memorial stone Kettering in 2010 as a postdoctoral fellow working in the field of psycho oncology, which is the field that unites psychiatry and cancer care. And that year, I was working primarily with patients with advanced life limiting cancers at the end of their lives. And what was so striking to me about these patients narratives was, as opposed to focusing on their own mortality, they were focused on their parents and partners and children and siblings and friends.

They were focused on the individuals left in the waiting rooms and left at home, Individuals who they were identifying as the linchpin of their care and who would be most deeply impacted by their eventual deaths. And I realized back then, in 2010, so long before the pandemic, that cancer care specifically, but health care more broadly, Was increasingly relying on family caregivers to shoulder tremendous responsibilities. And I had that experience with that protocol to really drive it home for me. And despite the fact that the scientific literature had already very well documented distress in caregivers, shockingly, there were no targeted support services for caregivers in any cancer center or any healthcare system in the United states. So in 2011, I sought to change that.

I founded the caregivers clinic at Sloan Kettering, whose mission is to assure that no caregiver experiencing significant distress as a result of their critical role, it was unidentified and deprived of necessary psychosocial services. The clinic provides care to caregivers of patients with all sites and stages of cancer, from diagnosis through bereavement. It was the first of its kind. I’m very happy to say it is no longer the only of its kind. And my and my colleagues, we are working very hard to ensure that in the next 10 years, every cancer center has a caregiver’s clinic, and within 20, so too does every healthcare system.

When I founded the clinic, I advocated that caregivers should register to become patients of the health care system with their own medical record and their own medical record number. This would address any issues around privacy and confidentiality. Should their own medical information or mental health care information be documented in the record of the patient? And of course, the administration was really happy to know that when you, of course, have a record in place, there is an ethical way in which you can bill for services. So we were able to generate revenue for the service.

There’s many reasons why caregivers come to our clinic. These are the top four. Anxiety management, balancing caregiving with other responsibilities, communication with healthcare professionals and care partners, the patients, and existential distress, which is the distress that every one of us experience when we realize that we’re not mortal. That we are mortal. Sorry, we’re not mortal.

Amazing. Okay, we are mortal. We are going to die. Our loved ones are going to die. And all of us as caregivers, regardless of whether our care partner has a ST, stage 4 pancreatic cancer that’s inoperable or a stage 0 sign of a breast cancer, that existential distress comes up.

And that’s real for all of us as caregivers, regardless of a care partner’s illness or disability during the pandemic. We conducted a study to evaluate the availability of caregiver support programs in cancer centers in the US and we defined caregiver support as anything ranging from the type of support at Sloan Kettering without comprehensive caregivers clinic to simply giving a caregiver a pamphlet and saying, here’s some information, or here are referrals to the community, like, we live in New York City. Here are the resources within the greater New York area. And among 238 cancer centers, 75% said they had a program. But can you guess what type of program that was?

Program, pamphlet, here’s a pamphlet, or go somewhere else to get Your care Now. Some people were really optimistic when they heard that 75% of cancer centers had something. I’m not necessarily a pessimist, but turn that around. 25% of 238 cancer centers didn’t even have information to give caregivers, which is unacceptable. We asked about barriers to developing support programs.

The number one barrier was concern about how would we generate revenue and bill for services. And of course, with a medical record in place, we have a solution for those who are interested. We published a toolkit in collaboration with the American Cancer Society that is really a cliff notes version to all the steps that I took to develop the clinic. There are webinars housed on the ACS website that walk you through the toolkit and fingers and toes and all the hair on my head crossed that the National Institutes of Health is going to fund some of my research which will allow me and my colleagues to train 200 cancer centers to develop caregiver support programs like the one at Sloan Kettering. So I want to take a zoom out lens and spend a little bit of time talking to you about some of the research I’ve done with caregivers over the past 15 years.

I’m not going to go into any of these studies in detail. Please email me if you’re interested in reading the full text articles. Happy to send them your way, but I want to zoom out and highlight some points that I think are really important for you to hear as you move forward and think about the ways in which you can can best address the needs of family caregivers. And so I want to start with this early phase of caregiving so a patient receives a diagnosis. Caregiver is thrust into this.

By the way, most caregivers don’t choose to become caregivers. For those of you who raise your hands, my guess is many of you felt like you had no choice. That was how I felt. And so I want to talk about best ways in which we can support caregivers at this point. And that is through identifying caregivers.

That itself is an intervention and screening them for distress. I want you to raise your hand who has heard about the caregiver advise record enable act. 1, 2, 3. Amazing. At least a few.

I was thinking it might be easier. That’s great. I’m glad a few of you heard of this. I’m glad that more of you now are going to know about this. So the CareGiver Advise Record Enable Act.

The Care act is currently passed in 45 states and territories. Territories. And it has three provisions it says hospitals must document the name and contact information of caregivers in a patient medical record. When a patient is admitted to the hospital, hospitals must let that caregiver know when a patient’s going to be transferred or discharged. And caregivers must provide training and education so that that caregiver knows what to do when they get home.

That moment of discharge when a caregiver goes home with a patient is so, so, so overwhelming. So number three is really important. Unfortunately, it’s not consistently implemented even in states where it’s passed. But what I want to share right now is that I want us to take this a step further. So if we’re taking the time to identify caregivers, document their information, well, that is the perfect opportunity to screen them for distress, ask them how they’re doing and route them to appropriate services.

And that’s what this first study really looked at, which was a trial of 150 caregivers who were randomized either to get a distress screening protocol or enhanced usual care, which is basically giving that. Here’s all the information we have at Sloan Kettering about resources for caregivers. It’s up to you whether you want to use these resources or not. The screening tool we use is called the CSS Caregiver. It’s from the cancer support community.

It is 33 items, web based, automated. And what’s really beautiful about this tool tool is it allows us to build in the back end information so that if a caregiver says I am, you know, I have concerns about finances, I’m concerned I can’t put food on the table because I paid for the chemotherapy. Well, when they hit submit, they immediately get an email that is information about patient financial services at Sloan Kettering. So it’s a really beautiful way to root caregivers to resources. And for those of us on the back end, we get a report saying this caregiver has X amount of X rating of depression, anxiety and suicidality.

We simply randomized 150 caregivers of patients who were getting outpatient surgery to get the screening or not. Those who got the screening got a phone call five days later. Do you have any questions about your screening? Can we help you to get services here? Strikingly, six months later, caregivers who got the screening reported significant improvement in emotional well being.

There were no significant differences in psychosocial services. Meaning those caregivers who got the screening didn’t necessarily come to our caregivers clinic. In fact, only four of those, 75 did. But we conducted in depth interviews with a handful of caregivers. And I think those interviews really told the story caregivers said to us.

I feel seen. The screening helped me to feel understood. I feel less invisible. I feel valued. By Memorial Stone Kettering Cancer Center I know where to get resources.

Simply acknowledging caregivers in their role, acknowledging their distress and providing them with referrals had a dramatic impact on their overall well being. I think that’s really important. So while all of you may not be integrating a 33 item screener into your materials, there’s a 4 word screener you can use and that’s how are you doing? Or many, many other simple ways. I want to put this on your radar.

Anything you can be doing to ask caregivers how they’re doing, that is a powerful, powerful intervention. So a caregiver’s been in the journey for a little while. It could be weeks, it could be months, it could be years. Their care partner is receiving treatment, perhaps in the setting of cancer. It’s first or second rounds of care.

And this is a period when caregivers really need help with their coping skills, with their social support, and navigating uncertainty. If there’s one commonality among every caregiver I’ve worked over the past 15 years, whether clinically or through my research, it is the challenge they face with sitting with uncertainty, with not knowing what the next year or month or week or day or even the next hour may bring. That can be very, very difficult. And so I wanted to develop a psychotherapy, an approach that could give caregivers the tools to sit with that uncertainty. And that’s the focus of this study I’m sharing right now.

Raise your hand if you are familiar with what’s called cognitive behavioral therapy, or cbt. Great. A lot of hands went up. So CBT is the most empirically supported intervention with the most data behind it to treat anxiety, depression, insomnia, and many, many other things. But for those of you maybe who’ve done cbt, I hope a lot of you have done therapy.

I’m a big fan of therapy. Of course, you may know that one of the major techniques is a process we call cognitive restructuring, where we evaluate the helpfulness and validity of our patient’s thoughts. What I realized in coming to this work is that the thoughts my patients were having were valid. These are some examples of what I hear often in clinic. The look on the doctor’s face meant something bad.

My boss is going to fire me if I miss work again for another family emergency. He seems more out of breath that cancer must be spreading. And so what I realized is that for many of the worries my patients were sharing, trying to challenge these worries was actually really, really invalidating. And so instead what I realized we needed to do was not challenge the thoughts, but help caregivers to engage in worry and rumination from the beginning. And so I adopted an approach.

It’s called emotion regulation therapy. It’s, it was originally developed for all of us in the general population to target anxiety and depression, but it was 16 sessions long and no caregiver is going to come to therapy for 16 sessions. We created an eight session version and we basically this was the results of an open trial. So 32 caregivers got eight sessions of therapy. We evaluated them before and after.

And what we found was after this therapy, there were significant reductions in, in worry, which is repetitive thoughts about the future, rumination, repetitive thoughts about the past, anxiety, depression and perseverative negative thinking. We also found that all of those beautiful outcomes occurred while caregiver burden was increasing, which told us that we actually succeeded. We gave them the tools they needed. So what I want to emphasize to all of you, again, you might not be implementing eight sessions of emotion regulation therapy in your work, but anything you can do to think about implementing, integrating some of the mindfulness based practices, there are wonderful programs out there, the Headspace act, for example, that gives these skills. Any technique that brings our attention to the present moment eventually may be a very, very powerful intervention for a caregiver who’s really struggling to sit with uncertainty.

Turning to later phases of caregiving as a patient’s disease progresses, as perhaps their and implementation of palliative or supportive care. Discussion about hospice care. This is a period where we want to focus on meaning focused coping communication skills. Certainly this is a time when communication skills are really, really critical, especially in discussing advanced care planning. And of course, caregivers certainly need assistance around anticipatory grief.

And so I want to share two brief studies with you. The first is an approach called meaning centered psychotherapy. This is the one I’ve been working on the longest. My mentor, Dr. William Breitbart, a Memorial stone, Kettering Cancer center, he’s a psychiatrist and he realized that there was no pill, no Prozac, no Lexapro, no Zoloft that he could give his patients that would take away their existential distress, that would take away the dread that comes with realizing a life is going to end.

There is no pill, by the way, for that. And so he and colleagues developed meaning centered psychotherapy which is a now very empirically supported set seven session approach that seeks to give individuals who are facing dramatic, profound limitations, losses and challenges the tools they need to connect to meaning and purpose despite that suffering. So that’s the underlying idea. Meaning and suffering can coexist. I’m speaking quickly, I know, and I also don’t see any outward eye rolls right now, but there might be some inward ones.

So I want to be very clear here. When I talk about this. I, I’m not talking about the power of positive thinking, I’m not talking about turning lemons to lemonade. That’s not who I am as a therapist or as a human. But I am saying that in situations in which we suffer, and caregiving absolutely is one of those situations, we have the opportunity to connect to meaning and purpose.

The suffering and the meaning can coexist. The anger, the frustration, the isolation, the exhaustion can coexist with love and hope and strength and connectedness. They’re not mutually exclusive. And so this approach is seven sessions. I adapted it for family caregivers and I tested it among caregivers of patients with glioblastoma multiform or gbm.

This is a very devastating neuro oncological disease with a very poor prognosis and it places caregivers in the role of surrogate decision maker or healthcare proxy very quickly. So I thought, well, if we can show that this approach works in this very distressed group of caregivers and it’s feasible and acceptable, they’re going to actually do it, then we could potentially have something here for everyone else. And that’s what we found. This is a pilot randomized controlled trial of 60 caregivers randomized to get either seven sessions of meaning centered psychotherapy or enhanced usual care. And immediately after the therapy and two months later, those who got the therapy reported an enhanced sense of meaning and purpose in life, decreased anxiety, enhanced spiritual well being and enhanced benefit finding the ability to find something good despite the tragedy all around.

And what’s so striking to me about these data are many of these caregivers became bereaved, but they were nonetheless able to say, you know what, I could connect to something good here. Maybe my relationship improved or I learned new things about myself. I’m going to turn back to that in a moment. And finally, I was so struck when I began the caregivers clinic that almost every caregiver who came to us when we asked, what do you need help with? They would say, Dr.

Applebaum, I have no idea how to speak to the doctor. Am I allowed to speak to the doctor or I’m really terrified of talking to my husband about his care in the future, or he gets really angry at me every time I try to open a conversation. I just don’t know what to do. I know I need to know what he wants. And I realized there are many training programs out there for healthcare professionals to improve their communication skills.

Very, very needed. But there were no training programs for family caregivers. And so I developed a two hour knowing no caregivers are going to come for a whole day training, a two hour training that gives caregivers the skills they need to engage in advanced care planning discussions. These are the discussions we should, by the way, all of us should be having with those in our life about the type of care we might want in the future should there come a time when we are incapacitated and unable to advocate for ourselves. These are two actors playing a patient and caregiver on the slide.

And the reason I’m sharing that is what we did is we brought in actors to play the patient and the health care professional to give caregivers in vivo practice the most realistic practice they could get. And we said to the actor, this caregiver says that his husband. Husband gets really angry. Play the angry husband, make it as realistic as possible. So we randomized 34 caregivers to the training or this enhanced usual care.

Again, what we found immediately post training, every caregiver said they were much more confident in their capacity to have these conversations with both patients and healthcare professionals. And three months later, decreased anxiety, decreased distress, and very importantly, an enhanced sense of preparedness for death. That means these caregivers must have gone on to have these conversations. And these conversations help them to feel more prepared. So anything that we can be doing to normalize the fear that comes with having these conversations and giving caregivers the concrete language.

There are many communication tips and tools we can literally give easily in our materials to caregivers is a very, very, very powerful intervention. Okay, before my clock runs out, I want to take a little bit of time and share with you a few other lessons that I’ve learned, some related to what I’ve shared in sub different.

And these lessons come both as a result of my career in caregiving science as well as my experience as a family caregiver. So this is my dad, Stanley Applebaum. I think you all know my dad. So who’s heard Benny King’s Stand by Me?

Who knows the string line throughout and the string section in the middle. That sounds like A little symphony, some of you. Good. That’s my dad’s music. So my dad was the arranger for that entire album, for that piece.

And he also composed the string interlude. That was something he wrote on a whim one evening when he was playing around with how rich and full he could make just a few instruments sound. So hopefully now you’ll think about my dad moving forward when you hear that piece. So my dad had me later in life, you might have guessed, since he was writing for these big artists in the 50s and 60s, and he lived with no major medical problems until his late 80s or early 90s, but then was diagnosed with Lewy body disease, or LBD. Lewy body disease is a progressive, neurodegenerative disease.

It leads to fluctuations in autonomic functioning and consciousness. So in my dad, he would have sudden drops in blood pressure and temperature to near hypothermia levels, and much more frequently, he would hallucinate. And he’d hallucinate anywhere from a few minutes to a few hours, occasionally an entire day. And one point, he hallucinated an entire week. We never knew how long these hallucinations were going to last.

And I personally experienced each one of these as a mini. What my patients didn’t know, what most of my colleagues didn’t know, is that the year that I founded the Caregivers Clinic, I stepped into the caregiving role for him, and I was navigating the complexities of our health care system behind the scenes at the same time that I was leading this service and doing all of this work, and was so struck that here I was, as a highly educated individual on faculty at two major New York institutions at the time, one wherein my dad was receiving his medical care. And nonetheless, it was so very challenging for me. And I realized what an incredible crisis we as a country are facing. The first lesson I want to share with you, I learned very quickly when he was first diagnosed, and certainly it was repeated every time I brought him to the hospital when he was hallucinating.

And that is that caregivers are responsible for preserving the identity of their care partner, for telling their story and helping them to tell their story. So I realized very, very quickly, without me by his side to serve as his eyes and his ears and his voice, there was no way for any members of his Pasley medical teams to have any idea who Stan Applebaum was and what mattered to him. There was no way for them to understand what his goals of care were or his goals for life. No way for them to understand, not just that this was a great musician. Of course, that was a fun story to tell.

But this was a man who was not done living and growing, a man who aspired to be 103, who wrote music from his hospital bed, who at age 92, chose to learn Tagalog, the language of his home health aides, because he wanted to challenge himself and speak to them in their native language. But had I not been there to tell his story, no one would have known that assumptions were made about my dad based on the fact that he was hallucinating for sure. And the date of birth on his wristband was 1922. I was constantly on the defensive about the value of his life and the value of care needed to preserve that life. This is one of our responsibilities.

And what was so striking to me after my father’s death is I realized not once had I seen this responsibility identified in the scientific literature or in any self help book, which is why the entire first chapter of my book is focused on this topic. And this is a responsibility we all have, regardless of whether our care partner has a neurodegenerative disease or not. Not. Number two, we are critical members of the healthcare team. Those of us who raise your hands right now for current caregivers.

You’re not wearing white coats, you’re not carrying pagers, but you all are healthcare team members. You absolutely are. And your responsibilities are vast. We are increasingly performing medical and nursing tasks. The things I was asked to do as a caregiver were so striking to me.

I really, I have a doctorate. I should have my honorary MD and NP and any other medical degree out there after what I had to do over the course of a decade to take care of my dad. And again, these are medical tasks that really were once only assumed by trained healthcare professionals. And as I’ve shared that this is only going to increase over time, I’m overwhelmed each day when I speak to caregivers in my clinical practice about what their medical teams are asking them to do. I want to point that out for all of you.

This is where you all can really come, come in. Their tasks are complicated. So we are physicians, we are nurses, and we’re also case managers. So case managers are by definition paid employees of healthcare systems who coordinate care. But we do it free of charge as caregivers.

That means navigating health insurance and reimbursement and communication between health care teams. That means making sure the home is safe. That means getting our care partner onto Medicaid and implementation, implementing home care, which for me, by the way was the most overwhelming. Getting my dad onto Medicaid, by the way, was much more difficult than getting my doctorate in clinical psychology or getting any NIH grant in the past. It’s absolutely very, very complicated.

What I want to highlight is that these tasks often come as a surprise. So the day to day hands on caregiving most caregivers expect, but these often are a surprise and added on they can push one over the edge. So these are also tasks that can be easily delegated. And this is often what I share with caregivers. What can you delegate?

How many of your case management responsibilities can your best friend do, can your husband do, can your child do? What can you ask others to help with healthcare communication? I never really thought early on that this was a responsibility, but this is the bedrock of what we do as care caregivers. We are the missing link between patients and healthcare professionals. Again, my dad could often not communicate without me by his side.

And caregivers need support around this.

Caregivers are incredibly high risk for distress. Diagnostic rates of anxiety, depression and post traumatic stress disorder are higher in caregivers than the patients for whom they provide caregivers. That’s something I really want you to remember. Caregivers are at really, really high risk for distress. And without support, that distress not only impairs their own well being, impairs their capacity to take care of patients, and therefore has some detrimental effects on the healthcare system.

These are all things that I felt as a caregiver. See if this slide comes up. These are all things my patients have told me. They’re all normal. I want to say that it’s normal to have these feelings.

And at the same time, this, this is why support is so, so important. Every caregiver should have access to psychosocial support. And finally, of course, despite suffering, I learned that caregiving was an opportunity to connect to meaning. I’m sort of joking when I say this, but not really. I’m Alison 6.0 speaking to you today.

It was Allison 2.0 who began her caregiving journey. I would give it all back for one more hug with my dad. I could really use that hug right now. But caregiving made me a lot stronger. I’ve become a much more grounded and peaceful version of myself.

Because of caregiving, I’ve lost track of the number of caregivers who’ve said to me, Dr. Applebaum, I had no idea I was this strong. I had no idea I would be able to get through this. Caregivers who said to me, I found my voice through caregiving. I used to be so, so shy, but I’ve had to speak up with so many healthcare professionals that now I found my voice.

I’m outspoken. And that’s because of caregiving. Every caregiver can connect to meaning and purpose, can connect to that growth, but they can’t do it if they’re drowning in despair. So we can help caregivers connect to meaning and purpose by addressing all of the other drivers of despair. And so on that note, I just want to take the last minute or so that I have to talk about what you all can do.

I hope, of course, my speaking here this morning has planted many, many seeds for you about the importance of family caregivers and ways in which you all can start to integrate the ideas that I brought in today into all that you do. And I want to start with educational content. Your content should be clear and digestible. And when I say that, when you create content, I want you to imagine that your audience is a caregiver who has not gone to sleep for 28 hours. That caregiver may have eaten one meal and that meal being a bag of pretzels.

They haven’t showered, they haven’t brushed their teeth, they’re highly distressed and they’re exhausted. That’s your audience. I want you to gear material to that audience because that is the state that so many caregivers are in when they are reading through consent forms, informational brochures, information about medical treatment. So the clearer it could be, the more digestible it can be, the better able caregivers are going to be able to actually integrate that information. So please remember who that audience is.

And by the way, we as caregivers, we are great at looking a. Okay, I looked, excuse my language, for 12 years at Sloan Kettering, like I had my shit together. But behind the scenes I was often falling apart. On three occasions I went to sleep under my desk at the hospital because I spent the entire night by my dad’s side. So even though a caregiver looks like they’re okay, they’re not.

And you won’t know that unless you ask those four words. How are you doing? I said to you about the case management that can be really, really overwhelming when it’s added on top of the to dos, the ADL’s, the IADLs, helping patients with the day to day tasks, anything that you can do to create tools and resources to help caregivers in their case management responsibilities. That is a total gift. This is a no brainer.

Mental health resources so I cannot overstate the benefit of a caregiver seeing information about where they might be able to get support, or a question or a screener, or what we call a distressed thermometer, literally a visual analog scale. Imagine a thermometer, thermometer from 0 to 10 that says how distressed are you? And what’s driving it? I cannot overstate the value of these types of questions and information. It not only means the difference between life and quality of life for caregivers, but for a small number, it means the difference between life and death for caregivers.

And finally, community connection. Caregivers are so, so isolated, particularly those who are taking care of patients who are immunocompromised, compromised. So anything that you can do to create, cultivate and facilitate peer networks is really, really important. Not every caregiver needs to come see me or another licensed clinical psychologist or mental health professional. But every caregiver can benefit from peer support.

Every caregiver can benefit from an understanding shoulder or ear. And the more that you can do to think about ways to cultivate those connections, that too is a path. Powerful, powerful intervention. So I’m going to stop there. Thank you for your time and attention.

I hope that you’ll now move forward, think about ways in which you can continue and better meet the needs of our at least 53 million family caregivers. Thank you.

I think there’s time for questions.

Great. There is time for questions.

Feel free to raise your hand or I’ll look down to see if any come up magically in front of me. Great.

What content formats have you found most digestible for overwhelmed caregivers managing complex medical tasks? Videos. Videos that demonstrate completely what they need to do. It’s so much easier if patients can. If caregivers can visualize concretely what it is they need to do.

So I would say creating videos demonstrating those tasks is really, really the best, powerful way. Great question.

So what other resources might be available? So, number one, we’re really working hard to ensure that every cancer center and every hospital system has these resources. I also will often encourage patients and caregivers to seek out support through disease specific organizations. So if someone’s taking care of someone with cancer, the American Cancer Society is a phenomenal resource. For me, the Lewy Body Disease association was a phenomenal resource.

So these disease specific organizations have incredible support both for patients and caregivers. Hopefully that’s helpful.

I think there was another one on there, but I can’t see it.

These programs are a lifeline. My father was enrolled in one of these programs. This was the only way in which we could implement a safe care plan for him at home. Truly. And certainly the amount of training that’s provided varies and the amount of hours can vary, but these programs, which are currently at risk of being cut, are absolutely a lifeline for millions of patients and caregivers in the country.

Anyone else?

Well, I think this is wonderful because not every caregiver is going to reach out for support, ask for help. We are so good at caregivers as giving help and not so much receiving. This is why I wrote the book that I wrote. I wanted to provide a cliff notes version to the training, education, support and validation any caregiver would get should they come to the caregivers clinic at Sloan Kettering and put it in a format that can be disseminated across the country. So I am saying I think the book is a great resource.

I encourage you to send it to caregivers in your life. The other thing is I want you to ask caregivers, what can I do for you? And if they say, I don’t know, say I want you to start keeping a list of all the things that are causing you stress and I want to take a look at that list and see what it is I can take off your list. The more concrete folks can be about what their needs are, the more likely their needs are going to be met and the better you can do to support them by asking as clearly as possible. All right, thank you so much.