Ali Ahmadi, a Navy veteran and nuclear field engineer, became a caregiver for his mother-in-law after she was diagnosed with lymphoma. He and his wife turned to the state’s Department of Health Services for help.
“What the state thought we needed was respite, in-home care, possibly adult daycare resources,” said Ahmadi. “It turns out what we needed was marriage counseling … My wife and I were struggling with giving care. We were struggling with our caregiving duties. And we were on the verge of divorce.”
That experience would lead Ahmadi to co-found a Madison-based startup called TCARE in 2014 that, using an evidence-based approach developed at the University of Wisconsin-Milwaukee, connects people who care for sick, elderly or disabled loved ones with the help they need to avoid burnout or a crisis.
Ahmadi and a team of 23 employees, split between offices in Madison and St. Louis, are building out TCARE’s algorithmic software, already in use by health departments and caregiver management agencies around the U.S. The primary goals are twofold: One, to help family caregiver caseworkers identify the root causes of stress that could trigger a crisis, and two, to connect caregivers with resources in their area that could help. In the process, the company says it’s helping save millions of dollars in healthcare expenses, and helping delay the institutionalization of loved ones into long-term care facilities.
Ahmadi said that he and his wife have tested out the TCARE — short for Tailored Care — for themselves.
“Our system recommended to us, three blocks away from us, there was a local church that did free family counseling systems,” he said.
It’s not necessarily the long hours spent cleaning, cooking, or shuttling patients to appointments that ends up causing burnout for caregivers, said Ahmadi. More taxing are bigger-picture issues — the resentment that can build between siblings who split caregiver responsibility, the legal and financial pitfalls that arise from caregiving, and the emotional pain of seeing a loved one suffering.
“Our state is asking family caregivers what they want, and measuring through subjective paper-pencil methods — two pieces of paper on a clipboard — what family members want,” said Ahmadi. “They typically end up providing them with respite vouchers or addressing physical needs of the caregiver.
"But what’s being neglected is the emotional behavior and mental needs and support for the caregiver.”
TCARE aims to help identify those needs by having caseworkers sit family caregivers down, and leading them through a conversation based on prompts given by software. The prompts are dynamic, changing based on the answers the caregiver gives.
At the end of the interview, the software identifies root causes of a caregiver’s potential burnout, and provides the basis for a personalized care plan, flagging services in the area that could help the caregiver in question. Ahmadi said there are 99 different categories of services included in TCARE’s network, ranging from counseling to legal assistance to nonprofits that could build a ramp to the front entrance of a home.
The science of TCARE was developed by Ahmadi’s co-founder, University of Wisconsin-Milwaukee professor emerita Rhonda L.V. Montgomery, who first began developing the protocol in 2007. The system is grounded in what’s called identity discrepancy theory.
“It is a clinical model of transition of role of a family member … into a family caregiver role,” said Ahmadi. “I may initially be 90 percent son, 10 percent caregiver. Later, I might become 95 percent caregiver, 5 percent son.”
Crises typically arise when a caregiver’s own self-identity is at odds with how much work as a caregiver they’ve actually taken on. When the TCARE software identifies such a discrepancy, it signals that an intervention is needed to avoid a crisis.
The state of Washington conducted a long-term study with Montgomery’s TCARE protocol to measure its efficacy. The research found that caregivers that used TCARE had lower rates of depression and stress, and were slightly less likely to fall back on Medicaid long-term care services.
Ahmadi said that the company already has contracts with clients ranging from state health departments to life insurance carriers — any institution that stands to gain from the medical and long-ter care cost savings TCARE says it provides — in 22 states. Ahmadi said he hopes that the state of Wisconsin’s health division will soon be added to the list.
“Based on the nature of the previous administration, I believe there were some political obstacles in the way. We’re hopeful that the new administration has progressive thinking and forward thinking,” he said.
TCARE is currently operating out of StartingBlock, a startup center on Madison’s near east side, along with a second office in St. Louis. It graduated from the startup accelerator gener8tor in 2018, and is a finalist in this year’s Governor’s Business Plan competition. It has raised over a million dollars in venture capital backing, along with millions in grant funding from the National Institutes of Health.