The National Alliance for Caregiving (NAC) has released a report on caregiving of individuals with Inflammatory Bowel Disease (IBD). Riding the 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 – Crohn’s disease and ulcerative colitis.

The full results of the survey can be viewed online at

The report is the result of a national study, which was conducted to gain a better understanding of caregiving in an autoimmune disease area, that is chronic and can lead caregivers and their recipients on a wild ride. There has been little work done in this area.

“This study took a deep dive into the lives of caregivers facing the challenges of helping loved ones manage IBD.  The results illuminate expected and unexpected ways that IBD has consequences far beyond the patient, and should help us better understand and manage those consequences for people that are central to the fight against this challenging disease.”

 – Derek Aday, PhD, IBD Caregiving Advisory Committee

The findings and results in Riding the Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis are based on fall 2018 survey data from 728 individuals who reported providing unpaid care for someone with IBD.

Results from the survey include:

  • 81% of respondents worked full- or part-time while providing care and many of these individuals reported that providing care caused them to lose time at work (94%) and their productivity to suffer (55%).
  • 92% reported providing or preparing meals including specialty foods, which was cited as one of the most difficult tasks
  • Six in 10 caregivers reported assisting with medication, doing housework, and managing finances.
  • Emotional stress was common among caregivers with 59% experiencing emotional stress, 49% feeling overwhelmed, and 16% reporting experiencing depression from providing care.
  • 35% felt guilty because they thought they should be doing a better job of providing care.
  • More than 6 in 10 reported struggling with a sense of loss over what the care recipient’s life would have been like without IBD.

The National Alliance for Caregiving, the Crohn’s & Colitis Foundation, ImproveCareNow, and researchers from Crimson Research at New Mexico State University (NMSU) worked collaboratively to develop the study. This research was conducted with grant funding from the David R. Clare and Margaret C. Clare Foundation.

The full results of the survey can be viewed online at


About ImproveCareNow

ImproveCareNow is a Learning Health Network dedicated to transforming care, health and costs for all children and youth with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network. We are enabling patients, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge. We invite everyone interested in getting kids with IBD better right now to join us at

About the National Alliance for Caregiving

Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for; the Alliance supports a network of more than 80 state and local caregiving coalitions and serves as Secretariat for the International Alliance of Carer Organizations (IACO). Learn more at

About the Crohn’s & Colitis Foundation

The Crohn's & Colitis Foundation is the largest non-profit, voluntary, health organization dedicated to finding cures for inflammatory bowel diseases (IBD). The Foundation’s mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults who are affected by these diseases. The Foundation works to fulfill its mission by funding research; providing educational resources for patients and their families, medical professionals, and the public; and furnishing supportive services for those afflicted with IBD. For more information visit, call 888-694-8872, or email [email protected].

Related links:  

National Study on Caregiving for People Living with Inflammatory Bowel Disease (IBD) Unveils Unique Challenges

ImproveCareNow Partnering to Survey Caregivers of Individuals with Inflammatory Bowel Disease


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