In the ongoing fight against HIV, much attention has been given to treatment, prevention and support for those living with the virus. But standing quietly beside many of them are caregivers—spouses, siblings, friends, parents, adult children and even professional aides—who carry emotional, physical and social responsibilities that often go unrecognized.
These caregivers are vital to the health and well-being of people living with HIV (PLWH). Yet, they often face their struggles in silence. Supporting them is not only a compassionate act but also essential to the overall effectiveness of HIV care and community health.
The Emotional Burden of Care
Caregiving can take an emotional toll. Many caregivers experience anxiety, fear, sadness or helplessness—especially if their loved one is coping with advanced illness or multiple health issues. They often live with anticipatory grief, dreading the possibility of decline or loss. The stress of always being “on alert” can build into burnout or depression if there are no outlets for support.
In communities where HIV remains stigmatized, caregivers may feel isolated or reluctant to talk about their role. Some may internalize the stigma and feel shame, even if they are not HIV-positive. These emotions can fester in silence and harm the mental and emotional health of the caregiver over time.
Physical Strain and Exhaustion
Beyond emotional demands, caregivers often face physical stresses as well. The tasks can be exhausting, from medication management to doctor visits, meal preparation, mobility assistance and hygiene support. Many caregivers neglect their health as they prioritize their loved ones’ needs.
‘Caregivers often juggle multiple roles—health aide, companion, advocate and emotional support.’
These tasks are equally challenging for older caregivers or those dealing with their own chronic conditions. Without relief, caregivers risk fatigue, sleep loss and stress-related illnesses. Over time, their ability to provide quality care diminishes, putting their health and the health of the person they care for at risk.
Social Isolation and Role Loss
The life of a caregiver can become very small. Long hours and emotional fatigue can make maintaining friendships, enjoying hobbies or even keeping a job difficult. The isolation is even more pronounced for those caring in secret—perhaps due to stigma or fear of gossip.
Caregivers also may lose sight of who they are outside their caregiving role. Dreams, goals and personal interests get pushed aside. Many caregivers report feeling invisible or forgotten, even though they pour so much of themselves into others.
Stigma’s Heavy Shadow
Although medical advancements have changed the reality of living with HIV, the stigma lingers. Misinformation, fear and moral judgment persist in some communities. As a result, caregivers may be judged by association—treated with suspicion or blamed for their loved one’s condition.
This stigma can discourage caregivers from seeking help, joining support groups, or even speaking openly with doctors. Sometimes, it can create tension within families or churches, leading to even deeper emotional wounds.
Voices from Experience
The value of caregivers is not abstract—it is felt deeply and personally by those they serve. Michael J., a 66-year-old white gay male who has been living with HIV for 25 years, shared this powerful reflection:
“There were days I couldn’t get out of bed, and my caregiver was the only reason I made it through. She didn’t just help me take my meds—she reminded me that I mattered. That kind of support is life-saving.”
—Michael J. of Arlington, Texas, has been living with HIV for 25 years
Caregivers speak to their work’s impact—and the emotional connection that often forms with those they support.
“I didn’t realize how invisible I had become. My sister has been living with HIV for 35 years, and now, at 69, “Everyone would ask how my sister was doing, but no one ever asked me how I was holding up.”
—Angela K., of the Bronx, New York, is a 45-year-old family caregiver
“I’ve worked with clients living with HIV for over a decade, and I’ve seen how powerful simple acts of care can be. It’s more than just assisting with tasks—it’s being a steady presence when the world feels shaky.”
—Aryona F., of Washington, DC, is a professional home caregiver of a PLWH
“As a new caregiver of a PLWH, I came in thinking I’d be offering help, but I’ve received just as much in return. The people I care for have taught me about strength, patience and grace. Caregiving is a two-way gift.”
—Antonio K., of Ft. Lauderdale, Fla., is a professional home caregiver of a PLWH
These voices remind us that caregiving—whether given or received—is a profoundly human exchange rooted in dignity, compassion and connection.
Aging with HIV: A New Layer of Complexity
One growing area of concern is the care of people aging with HIV. Due to better treatments, many PLWH live into their 60s, 70s and beyond. But aging with HIV introduces new challenges—both for individuals and for the caregivers who support them.
Older PLWH are more likely to face other health problems, such as heart disease, diabetes, bone loss or cognitive decline. Managing HIV alongside these conditions requires more complex care, more medications, and more doctor visits. Caregivers often juggle multiple roles—health aide, companion, advocate and emotional support.
In many cases, caregivers are older, too. An older spouse caring for their partner or an adult child caring for an aging parent with HIV may have limited strength or resources. As their need grows, we must ensure that PLWH and their caregivers are supported with appropriate services, education and health access.
Long-term care providers must also be trained in HIV awareness and sensitivity to serve this population with dignity and compassion.
How to Support the Caregivers of PLWH
Supporting caregivers leads to better health outcomes for everyone. Here are several ways communities, faith-based organizations and healthcare providers can help:
- Offer Emotional and Mental Health Support—Caregivers need space to express their feelings and be heard. Access to counseling, support groups or peer check-ins can provide healing. Faith leaders and pastoral care teams can play a meaningful role in spiritual and emotional encouragement.
- Provide Respite and Physical Relief—Everyone needs a break. Communities can organize volunteer efforts, respite programs, or relief days for caregivers. Encouraging self-care practices—exercise, rest, good nutrition—is also critical to their wellness.
- Empower with Education and Tools—Many caregivers are untrained and overwhelmed by medical tasks. Workshops, online resources and printed guides can offer practical help. Education on aging-related HIV care is also critical as needs grow more complex.
- Build Supportive, Stigma-Free Spaces—Creating an environment of compassion makes a big difference. Churches, health centers and community groups can help shift the narrative around HIV through education and advocacy. Publicly recognizing caregivers helps reduce shame and fosters inclusion.
- Address Financial and Legal Needs—Many caregivers experience financial strain or have questions about housing, insurance, or legal authority. Communities can connect them with legal aid services, benefits programs, or nonprofits specializing in caregiver support.
Conclusion: A Call to Care for the Caregivers
Caregivers of people living with HIV play a quiet but critical role. They offer strength, compassion and commitment under pressure—often without recognition or help. As the population of people aging with HIV grows, so, too, must our systems of support.
When we care for caregivers, we invest in the stability and resilience of the entire HIV care network. Let’s be communities that see them, celebrate them, and support them—ensuring they never carry the weight alone.
Linda H Scruggs, MHS, is co-executive director of Ribbon—A Center of Excellence(Ribbon) in Largo, Md.; Vanessa Johnson, JD, is co-executive director of Ribbon; Shauna Cooper, MPH, is the evaluation director at Ribbon; and Denise Drayton is senior program associate at Ribbon.
