A decade of caring for her aging parents had left Sonia Basuroy of Newark, California, “resentful, burdened and completely exhausted.” She shared her struggles in The Sandwich Generation Confronts The Caregiver Crunch: Sonia’s Story. In 2024, a Google search for help led Sonia to Desi Daughters, a community and resource hub for South Asians caring for elderly parents.
“Culturally, it felt safe,” said Sonia, who now heads Desi Daughters’ California Bay Area chapter, one of the group’s largest chapters with 60 members. “There are certain things you would talk about, and everyone would understand those feelings,” said Sonia.
A Desi Daughter’s solution
A similar caregiving struggle to Sonia’s spurred Boston-based Salina Shah to found Desi Daughters, a resource hub for South Asians navigating elder care. Her father-in-law’s prolonged illness took him in and out of hospitals and rehab centers several times a year; he spent over 90 days in seven different institutions across four different states in under a year.
As she reached out to friends and family for solutions, Salina found that the Indian community lacked a central resource center for elder care. She realized she wasn’t the only one seeking culturally congruent resources. “What was available catered to the general population; nothing for our community specifically. Everybody was just recreating the wheel on their own,” said Salina.
“That’s not very efficient.”
So in 2023, Salina started a Facebook group to crowdsource solutions from the community. The group grew so fast that she added a website and webinars to address the growing need.
Today Desi Daughters is a community of 14,000 members across Facebook and its website, with local chapters in the U.S., Canada, and India, and a growing business directory.
Desi Daughters collates crowdsourced responses into a free resource guide for the community. They also organize expert panels on a wide range of caregiving issues, including dementia, in-home care, senior living, and hospice for South Asian elders. The resources cover services for the aging in the U.S. as well as for those in India whose children are American residents.
The most sought-after services on Desi Daughters is for in-home caregivers, said Salina. “The number one request that I see in our Desi Daughters community is how do I find somebody who can make the [Indian] meals, provide companionship, just help out and speak the language.”
A demand for culturally congruent care
The caregiving journey that plagued Sonia and Salina mirrors that of many other Indian American adult children – members of the sandwich generation who are trying to balance caring for parents who want to age in place, raising children, and keeping their careers afloat.
There is a rising demand for culturally aligned care from the first wave of immigrants, who came here in the 1960s, as well as from older parents from India joining their adult immigrant children in the US.
But their demand for care is compounded by an immigrant mindset about who qualifies as a caregiver, coupled with a hesitancy within the community to seek outside help or move to care centers and assisted living, explains Salina.
“Parents who grew up in India and immigrated here are used to having elders taken care of by the family and not a third party. What they forget is that in India everyone’s (in) assisted living; nobody lives independently. You have a maid, you have a cook, … everyone has help. They’re not family members, right? And this (assisted living in America) is very similar to that. We need a mindset shift to see that,” she said.
Opportunity cost of being a desi daughter
When aging parents’ needs exceed what their children can provide at home, a move to a care facility can become unavoidable. For Indian immigrants, this can become a cultural minefield of failed expectations, said Salina.
“They get a lot of grief and judgment from the parent, from their extended family, from people who have never been in their shoes. I just wish that our community would be a little more open-minded about these solutions,” Salina said.
A healthcare actuary who has worked with retirement communities, Salina found that more women were doing the heavy lifting, moving to lower-intensity roles, going part-time, taking time off, or retiring early to care for their elders. It was the daughters who were stepping back from their careers.
“These decisions impact their earnings, their savings, their retirement, their Social Security benefits. We’re putting ourselves in a position where we are more financially insecure,” Salina said.
Home care agencies also reported that calls came primarily from daughters, Salina said. “Culturally, that’s sort of the expectation. Because of our culture, we cancel out a whole bunch of other options, like care facilities,” she said.
This is not an individual problem; it’s a systemic challenge, said Salina of the sandwich generation and their struggle to balance it all. “I think what’s breaking is the person in the middle. You can’t say no to either, so you kind of end up trying to do both.”
Joining forces to pilot solutions
So at Desi Daughters, Salina has set a plan in motion to build a pipeline of Indian caregivers for Indian retirees. They are partnering with Care Home Health (CHH), an East Coast-based home health care agency that provides home health aides to families in need, to serve Indian seniors.
The project will pilot at ShantiNiketan, an Indian senior living community in Tavares, Florida, consisting of 300 residential units across three phases, by bringing on campus a team of licensed, multilingual Indian caregivers. The project is scheduled to take off by late October.
The caregivers will live on campus, integrate with the community, and provide care to whoever needs it as they age. The idea is to create a pool of desi caregivers with multiple language skills in locations with a large population of older Indians, Salina said. Her father-in-law is a resident of ShantiNiketan, Phase 2.
A long-standing demand for desi caregivers
Care Home Health has its roots in a home health care agency founded in the 1980s by the mother of its CEO, Manisha Sethi Varma. Manisha’s mother launched the service in response to a steadily growing demand for caregivers who are culturally sensitive to Indian-origin seniors in the community.
A lawyer from India, Manisha’s mother had worked in healthcare and policymaking in Vienna before coming to the U.S. with the World Health Organization. The South Asian community in Pittsburgh, where the family first arrived, was growing rapidly. Manisha’s parents ran a restaurant, which quickly became the focal point for the city’s Indian community. She recalls her mother advising community members on finding caregiving help because she often hired people for her businesses and understood caregiving well from her healthcare days.
That led her to found Sethi Home Health in 1985, helping hundreds of families in Ohio, West Virginia, and Pittsburgh find culturally attuned helpers or caregivers for a family member or a visiting parent. Even in the eighties and nineties, Manisha’s mother was serving a niche population – desi families, many with neurological conditions, looking for culturally-sensitive care.
The culturally-aligned care model
Manisha, who now lives in the Bryn Mawr suburb of Philadelphia, took over the business after her father passed two years ago, renaming it Care Home Health and expanding services to six states, including Florida.
She understands the issues of aging well.
“Ever since I was a child, I’ve gone to nursing homes, and I’ve helped mom,” says Manisha. She, too, is part of the sandwich generation, raising three teenage children and caring for her mother and her in-laws, who are in their 90s.
“Most elders feel more comfortable if they have some cultural similarities around them,” says Manisha. “A lot of people who come to us, come to us with this ask – find us somebody who can speak Hindi, Gujarati, Punjabi, or at least can understand that we have to take our shoes off when we come in the home [or] that some of us are pure vegetarian…”
Salina Shah agrees that people desire culturally attuned care as they age. “It’s the ability to have a home-cooked meal that’s desi, the ability to talk with somebody in an Indian language,” she said. “I think with age there is a little bit of regression. For older age groups, they start reminiscing about old times and may revert to their mother tongue,” Salina said.
A collaborative solution
The two women found common ground in navigating the challenges of being sandwich generation ‘desi daughters,’ and looked for avenues to collaborate. Care Home Health and Desi Daughters joined forces; ShantiNiketan, a senior living facility in Florida that serves South Asian seniors, became their first pilot project.
During visits to ShantiNiketan (which Manisha had explored for her ailing father), they noticed a shortage of caregivers who knew Indian languages like Gujarati or Hindi. They realized that placing trained South Asian caregivers in the facility would better serve its South Asian residents.
“She [Salina] has a whole community, like Desi Daughters; I have a whole community of caregivers and a model that can be carried over from state to state,” says Manisha of their partnership. “And now we’re executing upon that.”
The ShantiNiketan project
Armed with a license to offer care services in certain Florida counties, Manisha and her mother (now 78) will go on-site at ShantiNiketan to settle caregivers in a condominium to be leased by CHH.
Over 50 residents attended the preliminary information sessions and expressed interest in assistance with daily activities (ADLs), “culturally connected care,” and companionship, recalls Salina.
The pilot’s future will hinge on the uptake.
“A particularly important aspect for many residents is having a caregiver who understands their language, culture, food preferences, traditions, and way of life. For example, residents may prefer someone who speaks their native language and can communicate with them comfortably, prepare familiar cultural meals, accompany them to appointments or community activities, and provide companionship in a way that feels familiar and respectful,” Manisha said in an email.
Locating caregivers with cultural empathy
Sourcing and training caregivers is one of their challenges. Finding caregivers who can serve a cultural niche is hard and could take a couple of months to onboard a potential candidate, said Manisha.
“That’s where I spend a lot of my time – finding good, high-caliber people. You have to dig deep. You have to establish a trust relationship with so many organizations. We do a lot of interviews daily, you know, over a dozen probably in a week, and we constantly recruit,” she said.
CHH caregivers have a range of profiles: some are recent graduates, some may be spouses or were sponsored to be citizens, others may be mothers with a few extra hours on their hands to spare. A candidate must clear all state and federal background checks and complete CHH’s own training programs to become an agency employee.
“There’s a lot of contingency planning that we have to do,” said Manisha. “So it’s not always that we need just one person. We usually need respite care, somebody who’s a backup.”
Caregiving regulations vary from state to state, so expanding services across state lines is an uphill climb. Florida was a tough state to acquire a license for CHH, said Manisha. “We had to do a lot of manuals, emergency processes; we had to get a physical office space,” she said. Caregivers need to take courses on medication reminders, HIV, and infectious diseases.
“Also, the state of Florida prohibits us from really marketing, so we can’t give out things like flyers…We can only talk verbally,” she said.
Florida is the farthest CHH has taken its services so far. California has the largest concentration of people of Indian origin living in the U.S.; but the state has tough regulations, said Manisha. “As we grow, we need to, as a home healthcare business, have… administrative points of contact,” she said.
Costs of care
84-year-old Natarajan Venkatesan, vice president of the condo owners’ association of ShantiNiketan Phase 3, came to Florida in 2023 after living in Los Angeles, California, for 50 years. He and his wife chose ShantiNiketan because it offered Indian retirement housing and was closer to his East Coast-based children.
Once the pilot kicks off, Venkatesan expects the highest demand for help to be for personal care, chores, running errands, and transportation to medical appointments and other destinations. He doesn’t drive any longer, and there are others like him who need help getting around.
But hiring help costs money.
“We have to look at the financial angle as well,” said Venkatesan. I understand they could charge $40 an hour. In our community, they are careful with money, so until they really need it they won’t hire.”
Manisha says many desis can be tight-fisted about spending on care because they were used to having access to cheap labor in India.
But she is also aware that some of the care, even if available, can be out of reach for many in the Indian community. “If I could do this, I’d want to do it for everyone,” she said. “I certainly hear from income brackets that cannot afford this service. I would love to have a nonprofit arm that kind of pulls in money and can help our own community elders if they can’t afford a service.”
What works for desi families
Caregivers with South Asian backgrounds work really well for desi families. “We do hire a lot of people from Nepal, Bhutan, Tibet, Sri Lanka, Pakistan, and India, of course,” says Manisha.
But others from, say, for example, Brazil, also do a good job if they are clearly informed about how a household works. “If language is not a problem…they just have to have that cultural empathy; [we] just make sure that they know what’s expected of them,” said Manisha.
A vision for the future
Their next milestone, say Salina and Manish, is to create caregiving resources in areas with higher concentrations of South Asians.
“The next scaling point with the collaboration with Desi Daughters is going to be across all of the South Asian retirement communities,” said Manisha.
Manisha also points out that as they grow older, many of her Indian clients have certain expectations of their caregivers. Therefore, it is important to understand what kind of care their families want; equally important is that the families understand what to expect from a home health aide or caregiver, said Manisha.
“They’re CPR certified; they can take vitals and communicate with loved ones of the aging parents. They’ll also cook for them, certainly, according to their dietary preferences. They’ll pray with them if that spirituality is a thing, and they’ll help them maintain a clean environment in the home and do their laundry, help them be hygienically clean, play cognitive games with them, keep them engaged. But they’re not house cleaners,” she explained.
Therefore, it’s important to set caregiver expectations with seniors, she adds. “There are certain things that are sort of off-limits for them, because you can’t be everything for this household if you’re going in as a health care worker,” she said.
Salina is optimistic about the Indian community’s response to the caregiver crisis, pointing to more senior day centers and retirement and assisted living communities being developed for aging Indians.
“Caregiving is hard in the U.S., period,” said Salina. From a cultural standpoint, immigrants have it harder because of cultural, linguistic, religious, and dietary preferences.
“I don’t have all the answers. Nobody does,” said Salina.
“But together we can come up with some.”
[Coming Soon Part 3: How the Chinese community built elder care solutions in the Bay Area]
Also Read Part 1: The Sandwich Generation Confronts The Caregiver Crunch: Sonia’s Story
