In 2019, the National Alliance for Caregiving, in partnership with the Crohn’s & Colitis Foundation and ImproveCareNow, released the first national report, to our knowledge, on caregiving of individuals with inflammatory bowel disease. Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis focuses on caregiving for the more than three million Americans affected by the two most common forms of IBD. It was clear from the study that caregivers needed support, with the report providing insight on who provides that support and caregivers’ perception of their capacity to provide care for the condition. The report also includes policy recommendations and next steps that can be taken in order to improve support for IBD caregivers and their families.

In 2020, NAC followed up this study with two additional resources for caregivers and professionals caring for IBD patients and their families.


  1. A flyer on IBD caregiving for individuals and families, available in the public domain for use in a clinical office or setting. This flyer includes key takeaways from the study and online resources to help navigate their care journey with IBD.  
  2. A guidebook for professionals and providers with tips on how to work with IBD caregivers to ensure that they are engaged and empowered to participate in shared and supported decision-making processes; that they are equipped to provide the best care to their care recipient; and that they have access to the necessary support and resources to protect their own well-being while navigating their IBD care journey.

On July 14, NAC invited a group of professionals and providers dealing with IBD to discuss these materials and how they may be used in a clinical setting. View the recording of this discussion here:

Access the study and additional materials at ImproveCareNow care centers are eligible to receive hard copies of these materials. To request hard copies please email Charlotte at NAC.

To stay up-to-date on the work of NAC, you can subscribe to a weekly newsletter at and connect on Twitter and Facebook with the handle @NA4Caregiving


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