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If you’ve ever cared for a loved one, you know the role doesn’t come with regular breaks or a set schedule. Caregiving is personal. It’s emotional. And it’s often relentless. But there’s a concept called respite care that, when embraced and accessible, can make all the difference—not just for the caregiver’s health, but for the long-term sustainability of care at home.
In this post, I want to revisit some research that has shaped how we understand caregiver support systems—especially when it comes to using respite services—and highlight where we are today.
What Is Respite Care?
What is respite care? It is temporary relief for family caregivers, provided by someone else who cares for your loved one during a pre-determined period of time. It gives you a much-needed break. It could involve a few hours of relief to run afternoon errands, an overnight stay for your loved one in a facility, or in-home support that allows you to work or maybe rest.
This care is not a luxury—it’s an essential element of healthy, long-term caregiving.
What Does the Research on Respite Care Suggest?
Back in 2001, researchers Karl Kosloski, Rhonda Montgomery, and Jane Youngbauer published a study in the Journal of Applied Gerontology titled “Utilization of Respite Services: A Comparison of Users, Seekers, and Nonseekers.”[1] I’ve cited this research many times in my own work, and its relevance hasn’t faded.
The researchers surveyed nearly 500 family caregivers of individuals with Alzheimer’s disease in Michigan. They placed these caregivers into three groups:
- Users: those who were actively using respite services
- Seekers: those who had looked into this care but hadn’t used it yet
- Nonseekers: those who weren’t even seeking this form of care
Kosloski, et al found that family caregivers were more likely to use respite if they had:
- Greater care demands (especially for activities of daily living)
- Other people available to help occasionally
- Trust in the reliability and scheduling of respite care for caregivers
- Affordable options
The “seekers” in this study were often burdened—but they lacked transportation, didn’t have help from others, or weren’t sure how to navigate the system. In other words, desire alone wasn’t enough. Even when these caregivers knew they needed help, they had trouble accessing that help due to systematic barriers.
In a personal conversation with me a few years ago, Rhonda Montgomery referenced this study. She told me that initially she and her research team couldn’t understand why some family caregivers would not access respite care when it was offered to them, but they came to understand that it was not necessarily the automatic solution for every family caregiver. The framework that emerged from their research—users, seekers, nonseekers—helps us to see that caregivers don’t neatly fall into a single category. Family caregivers might be viewed as moving along a path, influenced not only by the care receiver’s health condition but also by their own emotional, logistical, and/or structural factors.
Subsequent research has affirmed and expanded upon the findings of Kosloski, Montgomery, & Youngbauer. While the prevalence of caregiving in our society has increased, some of the barriers to respite care for caregivers have not disappeared—in fact, they’ve become more apparent.
A 2025 study in Health Affairs reported that family caregivers of individuals with dementia are now providing 31 hours of care per week on average, up from 21 hours a decade ago.[2] That quantity of time amounts to nearly a full-time job—unpaid and often unsupported. Ironically and paradoxically, use of respite services has declined.
The Columbia University Mailman School of Public Health also recently estimated that unpaid family caregiving now represents over $870 billion annually in labor[3]—a financial estimate that speaks nothing of the emotional and physical toll of caregiving.
In light of the above, as we see families taking on more caregiving responsibilities today, we must also empower them with additional caregiving support. Respite care is a vital resource that can make the caregiver role more sustainable over the long trajectory of caregiving.
Real-Life Example: The Need for Respite Care for Caregivers
A new story in People magazine highlights a young woman named Sara, just 22 years old, who became the sole caregiver for her grandmother and disabled brother after the tragic loss of her parents.[4] The first comment posted in response to this story, from KidsMD77, says:
“There must be some type of social services available to help her so that she doesn’t need to be the full-time caregiver of both her brother and grandmother.”
It’s easy to recognize the need for respite care for caregivers, as KidsMD77 points out. Indeed, Sara could potentially utilize it to meet the needs of her family and complete her college degree at the same time.
Like Sara, most family caregivers could use a little help to do things apart from fulfilling the demands of family caregiving.
Moving From Surviving to Thriving
The research on this care shows that family caregivers need more than just information on it. They need systems that work for them. This includes:
- Reliable, affordable respite options
- Transportation and accessibility support
- Emotional reassurance that using respite is not failure—it’s wisdom
Kosloski, Montgomery, & Youngbauer helped us recognize that respite care utilization depends on more than need. It depends on readiness, trust, and structure.
Practical Takeaways for Caregivers
If you’re in the caregiving role, here are a few steps you might consider after reading this post:
- Recognize your limits: You don’t have to wait until burnout hits to secure respite services.
- Start the conversation: Talk to your doctor, local Area Agency on Aging, or community health programs.
- Schedule care before you need it: Build it into your caregiving plan.
- Ask for help: You do not need to “go it alone” when there are supports to help you.
Family caregiving is a sacred and difficult calling. As the demands on family caregivers increase, respite care must become a central component of our support systems. This kind of care is more than an emergency escape hatch; it must become an essential and regular part of caregiving life.
References
[1] Kosloski, K., Montgomery, R. J., & Youngbauer, J. G. (2001). Utilization of respite services: A comparison of users, seekers, and nonseekers. Journal of Applied Gerontology, 20(1), 111–132. https://doi.org/10.1177/073346480102000107
[2] Wolff, J. L., Cornman, J. C., & Freeman, V. A. (n.d.). The number of family caregivers helping older US adults increased from 18 million to 24 million, 2011–22 | Health Affairs Journal. The Number Of Family Caregivers Helping Older US Adults Increased From 18 Million To 24 Million, 2011–22. https://www.healthaffairs.org/doi/10.1377/hlthaff.2024.00978
[3] America’s Unseen Workforce: What will it take to change the future of family caregiving? (n.d.-d). https://otsuka-us.com/media/static/01US24EUC0485_Columbia_Caregiving_Report_2024_DIGITAL.pdf
[4] Frankel, J. (2025, June 12). 22-year-old becomes sole caregiver for grandmother and brother after parents drown in Riptide. People.com. https://people.com/22-year-old-becomes-caregiver-grandmother-brother-parents-drown-11749346?utm_source=chatgpt.com
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