Caring for the caregiver

By Lingsheng Li, MD, MHS, University of California, San Francisco

As a geriatrician, I often find that caring for patients means caring for their family caregivers, too. I’ve come to see the caregiver not simply as “Mr. Chan’s wife” or “Ms. Joyce’s daughter,” but as an individual whose physical, social, and emotional well-being is deeply intertwined with that of the patient sitting in clinic or lying in a hospital bed. Many of us have little idea of how challenging caregiving truly is until we find ourselves in the same position—caring for a loved one and navigating an incredibly confusing and fragmented healthcare system, all while trying to juggle the many other demands of day-to-day life.

I’m learning as I go, listening to caregivers’ stories and allowing their experiences to guide how I communicate and offer support. Sometimes, a simple expression of appreciation, followed by a question about how the caregiver is coping, can open the door to a meaningful conversation about their needs and experiences. Here are a few things I’ve learned:

1. Take a moment to acknowledge the caregiver’s efforts.

“You’ve been doing an incredible job caring for [name of their loved one].”

2. Create space for the caregiver to share their experience.

“Being a caregiver is one of the most difficult jobs there is. What’s been the hardest part of caregiving lately? What’s been going well? What’s been weighing on you about [name of loved one]’s health? How has caring for [name of their loved one] been affecting your own health?

3. Ask about the caregivers’ own well-being.

“How are you taking care of yourself these days? What helps you get through the really hard days? What kind of support would be most helpful right now?”

4. Help caregivers find the right resources.

There are resources available to support caregivers, but finding the right ones can be hard and time-consuming. Caregivers often encounter information that isn’t relevant to their situation or feels overwhelming during an already stressful time.

Rather than simply providing a list of resources, help caregivers identify what might be most helpful for them and their loved one. For caregivers and patients with specific cultural and language needs, it’s important to partner with a social worker and/or become familiar with local community organizations that provide cultural- and language-aligned care.

Here are two helpful resources to explore:

The AARP caregiving website offers information, guidance, and state-specific resources across different aspects of care, including financial and legal issues, long-term care options, dementia care, end-of-life planning, and caregiver well-being.

The Family Caregiver Alliance (FCA) provides tailored resource navigation and can help connect caregivers with more individualized and community support. The FCA CareNav is a secure online tool that helps caregivers identify resources based on their individual caregiving situation.

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.