How can we better care for caregivers? 🧑🧑🧒🧒
Today, over 60 million Americans provide essential care for loved ones, including children, older adults, and family members with special needs. These caregivers are critical to our health system—yet many lack the support needed to stay healthy and financially secure themselves.
During Aspen Ideas: Health, experts and advocates discussed the societal changes needed to prioritize caregiving in the U.S.. Learn more at the link in bio! #NationalFamilyCaregiversMonth
The overlap between my personal and professional caregiving experiences has had a profound impact on me. Taking care of my Dad while leading the Caregivers Clinic at MSK underscored the challenges faced by the 53 million U.S. family caregivers, and how my professional work was only scratching the surface of addressing their unmet needs. Experiencing the complexity of caregiving in the setting of Lewy body disease while leading support for cancer caregivers highlighted commonalities and differences in the experiences of caregivers based on illnesses, disabilities, and treatments. Facing the financial toxicity of caregiving and navigating the Medicaid system underscored the overwhelming ways public policies shape caregivers’ experiences. Enduring repeated waves of anxiety, trauma, and anticipatory grief standing by my Dad’s side and feeling invisible in the healthcare systems where he received care was eye opening.
I knew long before my caregiving journey ended that I would want to do more, and I knew once I had moved past the intensity of my grief, that it would be time to do more. Now is that time. I’m thrilled to share that I’ve joined the Icahn School of Medicine at Mount Sinai as a Professor in the Brookdale Department of Geriatrics and Palliative Medicine, and as the Director of the newly established Steven S. Elbaum Family Center for Caregiving! The Elbaum Center for Caregiving includes research, clinical care, training, and advocacy efforts aimed at addressing the needs of caregivers of patients with all chronic and life-limiting illnesses. One of our primary goals is to help healthcare systems nationally develop sustainable support programs for family caregivers. It is an incredible honor to lead a robust group of colleagues, trainees, and advocates to advance caregiving science and help provide much needed support to caregivers nationally and worldwide. I am immensely grateful to our donors and my new department for bringing my 15-year vision for a home for caregiving science to fruition and for recognizing that, just as palliative care was two decades ago, addressing the needs of family caregivers is the next urgently needed change in U.S. healthcare.
I am so grateful to @songwriterpodcast for the opportunity to share my caregiver story, speak about the most important lesson that I learned as a family caregiver, and carry forward my Dad’s legacy. ❤️🎶
Meet one of our panelists: Dr. Allison Applebaum 🤍
Dr. Applebaum is a caregiving scientist, writer, and advocate dedicated to improving the lives of those impacted by cancer—not just patients, but the loved ones who care for them.
She is a Professor of Geriatrics and Palliative Medicine and Director of the Steven S. Elbaum Family Center for Caregiving at Mount Sinai. She also previously founded the Caregivers Clinic at Memorial Sloan Kettering Cancer Center—the first program of its kind in the U.S. to provide comprehensive psychosocial care for caregivers.
Her work focuses on expanding support for caregivers nationwide, with the goal of ensuring every cancer center offers meaningful, accessible care for those in the caregiving role.
Before her career in healthcare, Dr. Applebaum trained as a ballet dancer—and in recent years, has returned to the stage, reconnecting with dance in a deeply meaningful way.
We’re so honored to have her join us for our inaugural NYC community performance.
🩰
#oncoballet #ballet #cancercommunity #caregiving #panelist
For years, my colleagues and @caringacrossgen have spoken about how important it is to have illness and caregiving represented in the media and the arts. And in recent years we have seen some beautiful depictions of care in the media. (If you haven’t, check out @vicki_shabo ‘s blog on this topic, 10 Top Moments of Care on TV in 2024). Happily, there is a new, stunningly magnificent musical to add to this list of depictions: Night Side Songs. Last week, I had the gift of experiencing this musical from the Lazour brothers @frereslazour that highlights the fine lines between health, illness, and caregiving, aka the liminal space we all will eventually live in, at least once in our lives. Night Side Songs is the first live show in years (at least that I’ve seen) to accurately depict the complexity of what it means to be thrown into the caregiving role, and the existential distress we face when we realize that we are all, indeed, mortal. The show is running now until March 29 at @lctheater . I hope you’ll attend, and that you’ll share broadly with your networks!
Like so many U.S. caregivers, my consent to step into the caregiver role was never a discussion. It was assumed, again and again, that I would always be available in every way to support all of my Dad’s healthcare needs. To carry out complex medical and nursing tasks. To put other aspects of my life on hold. We know that caregivers who feel like they do not have a choice to be caregivers (which is the majority of U.S. caregivers) experience worse psychosocial outcomes than those who feel a sense of agency over the role. While informed consent is a foundational principle in medicine designed to foster individual patient autonomy, it is rarely applied to caregiving decisions, leaving too many of the 63 million U.S. caregivers unprepared for the role. Yet healthcare professionals are in a unique position to address this issue. Nicholas R. Mercado and I advocate for a shift toward informed decision making in family caregiving, ensuring individuals can make choices that are INFORMED and VOLUNTARY. We strongly believe this approach will lead to better-informed family caregivers and a more ethically focused healthcare system. #caregivers #caregiversupport #informedconsent
When I began thinking about ways in which we could better support caregivers of patients at Memorial Sloan Kettering Cancer Center back in 2010, I was struck with how the support available to caregivers within healthcare systems was severely limited. In most cases across the U.S. at that time, support for caregivers was an afterthought, or not existent at all. Figuring out how to meet the needs of patients was - and remains - the priority (which I do understand). And yet, we all know that supporting caregivers is not just good for caregivers, but it has benefits for patients and the healthcare system more broadly. Sixteen years later, so much has changed! It’s really amazing to see the incredible growth of hospital-based support for caregivers that addresses their psychosocial needs when and where they need it. And I’m honored to play a role in this change. We have so many empirically supported (i.e., powerful, effective) approaches to target the multifaceted distress experienced by caregivers, but without infrastructure on the ground (i.e., staff) to deliver these interventions, they will never make it to the caregivers who need them most. This is the problem that I and colleagues from the Steven S. Elbaum Family Center for Caregiving @mountsinainyc are trying to solve. There are sustainable models of caregiver support that do not add financial burden to healthcare systems, but instead, do the opposite: address caregiver distress while generating revenue. I’m grateful to @aarp for shining a spotlight on the growing number of hospital-based caregiver support programs, including ours, and I’m excited to see how these models of care will proliferate in the coming years! #caregiver #caregiversupport
/caregiving/medical/hospitals-helping-caregivers.html
@calm hosted a webinar for #WorldMentalHealthDay, and @drallisonapplebaum dropped some 🔥 tips on combatting the loneliness that often comes with caregiving.
interested in watching the full webinar?
👉 comment WEBINAR, and we'll DM the link 🫡
P.S. we're also giving away FREE subscriptions to @calm 's new app: Calm Health.
👉 comment I NEED CALM, and we'll send you info on how to snag one for yourself (and your friends) 😘
Just in time for National Family Caregivers Month, I’m thrilled to share that Stand By Me is being published in China! My goal has always been to help caregivers globally, and I’m so honored that it will now get into the hands of caregivers in China in need of support. I also absolutely adore the culturally adapted title: 穿越有限时空的照护之旅：家庭照护者的突围与重生 Through the Finite Journey of Care: The Breakthrough and Rebirth of Family Caregivers! #caregiversupport #nationalfamilycaregivermonth #caregivers
We’re live!!!! The website for our Steven S. Elbaum Family Center for Caregiving in the Brookdale Department of Geriatrics and Palliative Medicine at Mount Sinai has launched, perfectly timed for National Family Caregivers month! It’s incredible to see this long-term vision come to fruition after so many years. What I’m most excited about is our Caregiver Resources page, where we will keep a growing list of local, state, and national resources for caregivers. We’ll be updating this page quarterly, so if you’d like to have your work/organization/resource featured, please do let me know!
mountsinai.org/caregiving
#caregiversupport #caregiver #nationalfamilycaregiversmonth
As we begin National Family Caregivers Month, I’m reflecting on a few of the events I’ve been a part of over the past year that have been particularly meaningful to me. In September, I was deeply honored to give a keynote for the Center to Advance Palliative Care’s annual seminar to an audience of nearly 800 leaders in healthcare. I took the opportunity to take a zoom out lens and speak about the broader landscape of caregiving in the US, and the significant momentum we’re seeing within healthcare systems nationally to improve the care of family caregivers. I then shifted gears to discuss steps that can be taken to support caregivers that have the potential to result in profound meaningful changes, such as implementing distress screening protocols for caregivers, establishing medical records for caregivers, and identifying caregiver champions on the healthcare team. A few weeks ago, I received feedback from attendees, and what stood out to me were the concrete steps so many plan to take in the coming months to shift how caregivers are supported within their healthcare systems. And I started to think about the ripple effect we all have. If every one of those ~800 leaders takes just one step to integrate caregivers into the healthcare team, that alone will translate into significant national change. It takes a village to shift trends in healthcare, and we are that village, and the time is now. As we begin National Family Caregivers month, I am struck by what significant momentum there is right now to support the 63 million US family caregivers, and how much has been accomplished within healthcare systems for caregivers in just 12 months! I can’t wait to see what the next 12 will bring!
Photo Credit: Center to Advance Palliative Care (CAPC), Pel Productions
#caregivers #nationalfamilycaregiversmonth
Almost 15 years ago, Dr. Nick Odom and I met as we were launching our clinical and research programs to support caregivers at the University of Alabama at Birmingham and Memorial Sloan Kettering Cancer Center, respectively. Over the intervening years we discussed our vision for caregiver support and ways in which we wanted to help caregivers of patients with cancer to receive timely services. During the intervening years, we also both led numerous clinical trials of interventions to support cancer caregivers but realized that without infrastructure on the ground to deliver these interventions, eventually, they would never make it to the caregivers who needed them most.
Thankfully, we now have a plan to build this needed infrastructure. Nick and I are so thrilled to announce that last week, we received a notice of award from the National Cancer Institute (NCI) for our R25 training program that is going to allow us to help build this very infrastructure! Through our INCITE Training Program (INcreasing Caregiver support Implementation through Training and Education), over the next 5 years, we will train teams from up to 200 cancer centers to develop support programs like the ones at UAB and MSK, and now at the Mount Sinai Health System. Our hope is that as a result of this R25, in the future, all cancer caregivers will have access to psychosocial care where their care partners receive care. We’ll be sharing information in the coming months about how to apply and we’re looking forward to having many of you join us in the coming years for this program!
