Caregiving across the lifecourse happens in many different forms, intensity and time frames. While caring for people with serious illnesses and people who are aging is getting much needed attention, there are many other caregiving roles we assume over time from caring for newborns to children and youth with special needs, loved ones with chronic conditions, including severe and persistent mental illness and substance use, and people experiencing deep loss and grief – and more. Caregiving can shake up family dynamics, financial well-being and self identity time and time again. We are interested in thinking about caregiving as a journey – a part of what it means to be human – and considering universal challenges, opportunities and strategies that transcend one particular type of care support or phase of life. To explore areas of common ground, we spoke (separately) with Dr. Todd Jensen and Sherry Mergner. We are offering some of the knowledge nuggets they shared with us.
Dr. Todd Jensen is an Assistant Professor in the UNC School of Education where he leads the Thriving Through Family Transitions (THRIFT) Research Lab. Todd also is a Faculty Fellow of the Carolina Population Center and former faculty member in the UNC School of Social Work. Todd spends time considering what caregiving looks like across diverse family structures, including families who have experienced divorce and those in military communities. He is especially interested in the development of stepparent-child relationships and understanding the varying roles stepparents can play in caregiving contexts. He highlighted that family caregiving can be culturally informed, particularly with respect to perceived expectations and obligations related to caregiving. His research also highlights that caregiving networks are dynamic, often changing over time. To best understand and promote effective caregiving, he emphasized the importance of engaging researchers who view families as complex and ever-changing social systems. When asked what he would consider to be a “universal” asset for caregivers, he suggested that informal support from peers, friends, and “the people in my corner who can help me out” is essential. Peers and friends are central to learning new skills, identifying needed resources, and receiving social/emotional/practical support.
Sherry Mergner, MSW, LCSW, is a Clinical Associate Professor at the UNC School of Social Work, where she has led extensive training on neurodiversity and supporting families of children who are neurodivergent or disabled. In addition to her academic role, Sherry maintains a private clinical practice serving neurodivergent and disabled individuals and brings lived experience as a caregiver. Often described as a meta-caregiver, she is widely sought after for her insight, compassion, and practical guidance—all while navigating the complexities of her own caregiving journey. Sherry brings to light the nuanced challenges of learning to both ask for help and to set healthy limits, including saying no when needed.
In our discussions, we identified several caregiving challenges, including access to transportation across the lifespan, navigating multiple caregiving roles, fear of service loss due to policy changes, and the anxiety surrounding future care if the primary caregiver becomes unable to provide support due to disability or death.
Three overarching meta-issues also surfaced as particularly significant:
- Balancing Support Without Enabling: How can caregivers provide meaningful assistance without fostering dependence or learned helplessness? When does helping become unhelpful? This complex dynamic requires ongoing reflection and boundary setting for both the caregiver and the care recipient and is relevant across age groups and conditions.
- Navigating Social Perceptions: Caregivers often find themselves managing social stigma and discrimination, whether related to a loved one’s appearance (e.g., hair loss from chemotherapy, visible disabilities) or behaviors that fall outside societal norms. This can lead to internal conflict as caregivers strive to shield their loved ones from harm while managing their own emotional responses to being publicly associated with difference or disability. These experiences, though rarely discussed, carry profound social and emotional weight.
- Managing Financial Complexity: Financial concerns are a major source of stress for caregivers. These include protecting assets, accessing benefits, managing debt, securing power of attorney, and planning for long-term care. A core question emerges: How can caregivers safeguard the financial wellbeing of those they support—while also preserving their own stability?
The Jordan Institute for Family is building a research network that will bring together scientists from many disciplines, program leaders, and people with living experience to explore common issues for caregivers across the life course. We seek to identify facilitators that support the ability to assume the role of caregiver at different points in time and lean into that role with love, courage, preparation, resources, support and wisdom. Interested in learning more or joining the work? Please email Sarah_Verbiest@med.unc.edu.
Follow Dr. Jensen to watch his videos for stepparents at Instagram handle: @drtoddjensen or LinkedIn profile: www.linkedin.com/in/toddjensenphd
