Caring for a loved one with an eating disorder is often a full-time job, but one that’s rarely recognized. Research shows that the burden of caring for a person with an eating disorder is higher than that of caring for someone with depression or schizophrenia, with most caregivers reporting a constant sense of worry. At Equip, we work closely with caregivers and strive to support them through the difficulties of eating disorder recovery—but we also know that more research is needed to better understand their experience and what they need during this challenging journey. Our latest survey is a first step toward deepening this understanding.

Research goals

We conducted this survey with several distinct goals in mind. We wanted to:

Quantify the caregiver burden

Our research aimed to assess the emotional, physical, and logistical toll of supporting a loved one through eating disorder treatment. We also sought to unpack how that burden varies by caregiver role (i.e., mothers vs fathers, parents vs. siblings), and throughout the duration of the eating disorder.

Explore gaps in support

Where do caregivers struggle? Are there areas in which they feel unsupported, excluded, or confused? Our survey looked to identify these gaps, exploring how factors like financial pressure and access to treatment shape caregiver experience.

Inform tailored interventions

As with all Equip research, our ultimate goal is for our findings to have practical implications that make the treatment experience better for everyone. With this survey, our goal is to use our findings to inform better care models that support caregivers directly, including training, therapy access, peer support, and role-specific guidance.

Our survey

In order to get a better sense of what the caregiver experience looks like—and what caregivers need to feel supported and successful during the recovery journey—we conducted a survey of over 1,000 people who had helped someone recover from an eating disorder. Here are some more details on our respondent population:

• 1,075 respondents who reported being a caregiver for someone recovering from an eating disorder within the past seven years
• 57% of respondents were 40-49 years old, white, cisgender, and caring for a person over 25
• Gender was almost evenly split among respondents, with 51% female and 48% male
• The primary caregiver roles were friend (27%) and parent (21%)
• Among those being cared for, the most common diagnoses were binge eating disorder (BED) and anorexia

Our survey included a wide range of questions meant to bring to light various aspects of the caregiver experience. These questions included those specifically about the challenges of supporting someone with an eating disorder, as well as broader questions about how this experience impacts the caregiver’s mental health. Some notable questions included:

• How has caregiving impacted your mental health?
• Did you hide your caregiving responsibilities from your employer due to fear of stigma or career consequences?
• What were/are your biggest challenges in supporting your loved one?
• Did you receive education or guidance on how to support someone with an eating disorder?
• Did your loved one’s eating disorder treatment provider offer mental health support for you as a caregiver?

Key takeaways

While we already knew that the caregiving experience is challenging, this survey revealed new perspectives, quantitative takeaways, and eye-opening insights that better illustrate the reality of helping someone through recovery. These learnings will also help shape our support for caregivers going forward.

It challenges who you are

More than 7 in 10 caregivers (74%) say their role taking care of their loved one has reshaped their identity: 41% report that this task has adapted their existing identity, while 33% say they have developed a distinct caregiver identity. This new identity comes with challenges, with 80% of caregivers reporting that they feel overwhelmed at least sometimes, and over half (51%) reporting that they struggle with stress and anxiety.

They’re on their own

Almost two-thirds (65%) of caregivers are deeply involved in treatment, and 94% believe their support is key to recovery—but they are often left to navigate the journey by themselves. Most lean on friends and family (51%) for support, but about 1 in 8 feel totally alone. While about half of respondents receive some mental health care from providers, many want more, citing burnout, exhaustion, and lack of emotional support. Many emphasized the need for affordable, ongoing mental health care to help them cope with the demands of caregiving.

They need more resources

Caregivers are hungry for knowledge and help: 57% want more education about eating disorders, and 45% need caregiver-focused therapy or support groups. Nearly 1 in 5 have had to navigate the recovery journey without guidance, and almost half (48%) feel unprepared for managing relapses.

Money is tight too: 44% say treatment costs strain their finances. Balancing caregiving with work and family is a daily struggle for 50%, and 30% find treatment options confusing and hard to navigate. There’s a strong desire for centralized, easy-to-find resources, including financial help, structured programs, and step-by-step guidance, especially early in the caregiving journey.

They want a seat at the table

Caregivers are heavily involved in the recovery journey: 71% report preparing meals, 60% monitor their loved one after eating, and 55% provide regular emotional support throughout the day. And yet, many report feeling left out of the treatment process and want to be included as valued partners. Respondents asked for consistent updates, transparency, and tools to build trust and effectiveness in their role.

Self-care is still a priority

A significant theme was the need for caregivers to prioritize their own well-being, by doing things like managing their mental and emotional health, taking breaks, and practicing self-care to avoid burnout. They advised reaching out to others for support, whether through family, friends, support groups, or mental health professionals—highlighting that caregivers are not alone and should never hesitate to ask for help.

Where we go from here

As our survey results make clear, caregiver strain is real and significant, and they aren’t getting the support they need. This is important not only for the mental health of the caregivers, but also because they play a vital role in their loved one’s treatment journey—and if they are exhausted, burned out, or feeling confused and unsupported, it can make eating disorder recovery much more difficult, if not impossible.

To help improve the caregiver experience—and, as a result, likely improve patient outcomes—providers need to foster a nonjudgmental environment and proactively screen for caregiver stress, offering referrals to counseling, groups, or other resources as appropriate. It is also essential for eating disorder providers to give caregivers clear eating disorder education, relapse management tools, and regular check-ins to empower them as the active members of the care team that they already are. Lastly, programs should integrate caregiver well-being into care management, an effort that will improve treatment success.

At Equip, we’re proud that caregiver involvement and support is a core part of our treatment program, with extensive caregiver education, dedicated support groups for loved ones, and family mentors on each provider team. Our survey results confirm that these resources are crucial—and compel us to consider new ways that we can provide even more support to everyone helping a loved one overcome an eating disorder.