Written by Tom Chiodo Contributor Developing documentaries & special projects for public media.
Jun 11, 2024 Forbes
There are more than 53 million unpaid family caregivers in the United States, who provide 34 billion hours of care each year, amounting to an estimated $67 billion in lost income. Many caregivers struggle to balance a full-time job with taking care of multiple family members at once. Despite their importance to our families and communities, caregivers are an often overlooked and underrepresented majority.
Caregivers are at an increased risk of negative health outcomes. According to a 2023 study from Guardian Life, 41% of caregivers report low physical, mental, and financial wellbeing, compared to 31% of non-caregivers. The stresses of caring for themselves and their loved ones causes many caregivers to experience burnout. The symptoms of caregiver burnout mirror anxiety and depression, leading to isolation, exhaustion, loss of interest in activities, detachment from the act of caregiving, and physical health problems for both the caregiver and care recipient. As a result, when the caregiver is experiencing burnout, they are more likely to place the care recipient in a long-term care facility.
When caregivers have the support they need, the act of care can be a positive, empowering experience. A study from the John Hopkins University Center on Aging reports that family caregivers who prioritize their own health reported higher self-esteem and longer life-expectancy. The first step toward changing health outcomes for caregivers is to identify effective, affordable resources to reduce burnout and promote wellbeing. One such resource is TCARE, Inc., a caregiver support platform that combines high tech and human touch to lower the risk of burnout. We sat down with TCARE’s co-founder and CEO Ali Ahmadi to learn about the potential for technology to improve health outcomes for caregivers.
A Case Study in Caregiving
A former US Naval Aviator who spent eight years working for Siemens as an engineer, Ali was first introduced to caregiving in late 2015, after his mother-in-law was diagnosed with stage four lymphoma. In the months that followed, the stresses of caregiving put a strain on Ali’s family and his marriage. A former military friend connected Ali with his mother who was a researcher on caregiving. In 2016, Ali and his wife met the team at the University of Wisconsin-Milwaukee, where researchers were in the early stages of developing the Tailored Caregiver Assessment and Referral protocol.
The protocol is supported by Caregiver Identity Theory, which views caregiving as a series of personal and emotional transitions influenced by changes in the caregiving environment and shifts in personal norms rooted in family roles and cultural backgrounds. Studies using the TCARE system determined that identity discrepancy, which refers to the identity shift that occurs in the early stages of caregiving when a child, spouse, parent, or friend becomes a caregiver, increases the risk of caregiver burnout. Throughout the day, caregivers shift identities, from son or daughter to caregiver, and over time, they begin to lose their sense of self. The emotional impact of this identity discrepancy can lead to distress and, ultimately, burnout.
Harnessing AI for Compassionate Care
Recognizing the potential for the TCARE model to change the lives of family caregivers like himself, Ali partnered with experts in the field to take the behavioral intervention model outside of universities and share it with caregivers. In 2017, Ali co-founded TCARE.ai, a digital platform that utilizes AI to assess the risks of caregiver burnout algorithmically, while connecting caregivers to social workers or “care specialists” who provide the human touch. The TCARE Care Specialist offers empathy, advocacy, and continuous connection to resources and services to meet the specific needs of the caregiver. Care specialists go through training with the TCARE tech team, data science team, and behavioral intervention team to learn how to use AI to enhance their work. “We’re not throwing technology at caregivers, technology is the tool but not the enabler that creates trust,” Ali clarifies. “We are able to establish a one-to-one relationship with our care specialists, and those become the trusted family caregiving navigators.”
When caregivers sign up for TCARE.ai, they are assigned a Care Specialist who will perform a 20- to 40-minute assessment virtually, over the phone or video chat, to obtain information about the caregiver, to understand their caregiving journey, and their emotional and physical wellbeing. The Care Specialist will also ask about the care recipient, including the level of care they receive and the activities they can perform on their own. Using this information, the AI algorithm recommends interventions and services need to support the caregiver and assists in creating a care plan. Care Specialists share this information with the caregiver and help them develop a care plan based on their needs, preferences, and availability. TCARE, Inc. partners with managed care organizations, long-term care insurance providers, employers, and state- and federally funded agencies to offer the platform free-of-charge to policy holders.
Ali and his wife used TCARE themselves to address the challenges of caregiving. TCARE algorithms identified the resource that they needed was marriage counseling, because their risk factor for caregiver burnout was related to the emotional impact of caregiving that led them to consider placing his mother-in-law in a nursing home. The system recommended a church two blocks from their home that offers free family counseling sessions.
Caregiving by the Numbers
TCARE’s data scientists use 15 years of longitudinal data to identify trends and patterns for caregivers across social, economic, and ethnic demographics. The system can predict how likely someone is to put their loved one in a home within the next twelve months or less, and identify which interventions can increase or decrease caregiver burnout based on an individual’s identity. TCARE’s data not only reveals the differences between caregivers, but the similarities between caregivers from all walks of life. “While tactical elements of caregiving in different cultures can be unique, the emotional impact on the caregiver is universal across all cultures,” shares Ali.
The model has produced positive results for many caregivers and their families. For example, 84% of users report lower levels of depression. The system has contributed to a 20% reduction in home- and community-based and long-term care service utilization, and a 21-month average delay in nursing home and assisted living placement.
Today, many family caregivers remain at risk of burnout. Innovative models and technology offer hope for a better future, in which caregivers receive the care that they need so they can continue caring for others.
Follow me on LinkedIn.
About the Author
Forbes
Tom Chiodo Executive producer Special Projects, National Productions at WETA, flagship PBS station in Washington D.C., developing primetime documentary films and original digital content, accompanied by national impact and engagement campaigns, for 330+ PBS stations. Recent projects include Ken Burns presents Hiding in Plain Sight: Youth Mental Illness (2022); Emmy-nominated documentary The Gene: An Intimate History (2020). More than thirty years experience in media, communications, television, and entertainment industry. Senior positions at Entertainment Industry Foundation, Rubenstein Associates, U.S. Department of Health & Human Services, and Massachusetts Department of Pubic Health. Co-author “Home Care for Respirator Dependent Children” New England Journal of Medicine. Contributing writer Forbes.com. 2023 judge for National Academy of Television Arts & Sciences News & Documentary Emmy Awards.
The “Hiding in Plain Sight” Blog supports the 2022 documentary series Hiding in Plain Sight: Youth Mental Illness (Now streaming on the PBS App), and the upcoming 2025 series, Hiding in Plain Sight: Adult Mental Illness, produced and directed by Ewers Brothers Productions, executive produced by Ken Burns, and presented by WETA, the PBS flagship station in our nation’s capital.
You are not alone. If you or someone you know is in crisis, whether they are considering suicide or not, please call 988 or the toll-free National Suicide Lifeline at 800-273-TALK (8255) to speak with a trained crisis counselor. If you don’t want to talk on the phone, you can also text. Crisis Text Line offers free mental health support. Text “10-18” or “SCRUBS” to 741741 for help. The call and text lines are open 24 hours a day.