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In 2016, Ali Ahmadi’s mother-in-law was diagnosed with stage 4 lymphoma and came to live with his family. Ahmadi is a former naval aviator. He’s trained to handle high-stress situations. But, he says, “becoming the caregiver to my mother-in-law was the hardest job I was never trained for. The challenges of caregiving had taken my wife and I to the verge of divorce.”
They needed help. Ahmadi was introduced to a research team at the University of Wisconsin that was working in identity discrepancy theory, essentially, the distress that occurs when there’s a mismatch between one’s ideal self and reality. They had created a self-assessment tool that asked questions about caregiver burnout. Ahmadi thought that it would recommend putting his mother-in-law in hospice care. But he was surprised when the assessment instead recommended marriage counseling for Ahmadi and his wife. Ahmadi’s challenges in taking care of his mother-in-law, according to this theory, were tied to his change in identity from son to caregiver. And, the tool suggested, there was a free option for marriage counseling near him, at a church just three blocks from his house.
“I was just amazed at why this model was sitting on the shelf at the university,” Ahmadi says. “I pulled this clinical model out of the university, and that was the inception of TCARE in 2017.”
TCARE, where Ahmadi serves as CEO, is a caregiver-support platform that works with Medicaid and Medicare health plans to provide its services as a benefit to members. Pre-pandemic, TCARE was a team of 12 employees. Now it has 168 full-time workers. In Missouri, about 70 percent of people 65 or older will require some long-term care services, according to the Missouri Department of Insurance, and the average annual cost of a semi-private room in a nursing home is $58,000. The goal of TCARE is to allow seniors to age at home, and to help families with their care. To help with aging-in-place, TCARE asks caregivers to take a psychosocial assessment that scores the risk of burnout for a user based on six areas. Burnout is defined as a caregiver “throwing her hands up in the air and saying, ‘I can’t do this anymore. I’m putting Mom in a nursing home,’” Ahmadi says. Once a user completes the assessment, TCARE sends them interventions: support groups, disease education, financial and legal counseling, respite services, and more.
Research shows that because there are federal, state, and local funds for elder care, combined with Medicare, financial burdens are rarely the reason why family caregivers burn out. Emotional and behavioral reasons, as well as the stress of navigating the care system, are more likely to lead to a breakdown. One of the analogies that Ahmadi hears from caregivers who use TCARE is that taking care of an older loved one is similar to becoming a new parent in that the caregiver’s identity totally transforms. Whereas new parents will watch their babies grow and meet milestones, it’s the reverse for those caring for the aging population. Ahmadi also hears from TCARE users that they often neglect their own needs because they feel guilty—they’re seldom asked questions about how they’re doing because the focus is on Mom or Dad. TCARE’s goal is to care for the caregiver.
“A lot of families go through some of these challenges,” he says. “They never call it ‘caregiving challenges.’ They call it ‘life.’”
