Paurvi Bhatt
I was only 28 when I joined an unexpectedly popular club. Together, with more than 53 million Americans, I became a family caregiver when my father was diagnosed with early onset dementia. A few years later, our situation escalated when my mother’s cancer reemerged, and her cardiac and lung conditions worsened.
This situation is unfortunately now a common, yet silent, milestone across households in every community. Even more so for immigrant families like mine and for women who assume family care responsibilities quickly and often without support.
As an only child and working daughter, I found myself completely unprepared to provide respectful, culturally-adapted, and high-quality care for my first-generation Indian American immigrant parents.
As a global health care executive, I was convinced I would know exactly how to manage their care with ease, but the reality of navigating health care as a family member was far more frustrating, confusing, and challenging than I could have dreamed, not to mention doing so across cultural, language, and system divides.
Initiatives such as “hospital at home” are growing, yet few of them design their models based on the realities that immigrant families face in navigating care — or seriously take diversity into account.
Family caregivers constantly navigate extreme uncertainty as it is. Our systems of support at the state and federal — and health system — level are fragmented, inaccessible, and oftentimes nonexistent. The disconnect and confusion are tenfold for immigrant families.
Caregiving is often cast as a family responsibility versus a societal one. This is something people take for granted until the responsibility is thrust on them, only to realize their own family is unequipped to handle it.
Beyond that, each family has its own culture and traditions. So how can we scale support for something so unique and personal?
Conversations about caregiving are shifting in part thanks to the lifelong advocacy of former first lady Rosalynn Carter. In bravely sharing her dementia diagnosis earlier this year, she amplified an important dialogue.
It was Carter who famously said, “There are only four kinds of people in the world: those who have been caregivers, those who are caregivers, those who will be caregivers, and those who will need caregivers.”
If caregiving is practically universal, then why haven’t we scaled the resources needed to support caregivers?
It takes a vibrant community to care for a loved one who is aging, ill, or disabled. And despite being overrepresented in the caregiver community and prominent in the health care system, people of color are significantly less likely to have caregiving support for their own well-being.
The ability to care for a loved one should not depend on ethnicity, economic standing, or ability to “influence the system.” Many of us have dropped out of work to manage it all. For women of color, this often means we fall even further behind. The headwinds of care and bereavement work against every equity initiative focused on elevating the role of women of color in leadership.
I have advocated for a paid Family Medical Leave Act program, which would provide up to 12 weeks of pay for caregivers across the state. Early in my career, I was pressured to prioritize work over family and often had to remind my managers that FMLA existed to protect my job.
These protections would have an outsize impact on shift workers and working-class families, alongside other policies like expanded care and bereavement leave based on any definition of family and cultural practice.
We need to adapt existing caregiving and bereavement programs to be more culturally diverse, and we must do a better job of reaching families in need.
The Rosalynn Carter Institute for Caregivers recently began a cultural adaptation of its Dealing with Dementia program to engage more diverse caregivers, particularly those in communities of color, with culturally-competent resources, training, and support.
Many programs across the state are starting to integrate cultural needs into managed and end-of-life care, like granting access to temple support for Hindu families.
Caregivers are a powerful constituency and crucial providers in the referral pathway for care. Health equity and health care cannot scale with outcomes without us. We must work toward a world where caregivers are seen and supported, regardless of language, culture, or where they are in their caregiving journey.
Paurvi Bhatt, MPH, is a health care executive and vice chair of the Rosalynn Carter Institute for Caregivers.
