Below are some resources and information for caregivers in general and specific for people caring for those with IBD. Caregivers can also utilize the patient resources to learn more about IBD, nutrition, treatment, and more.
Where available, resource links are provided for both English and Spanish. Please note that the content may vary slightly between the two versions.
Crohn’s & Colitis Foundation
The Crohn’s & Colitis Foundation is a non-profit organization dedicated to finding cures for Crohn’s disease and ulcerative colitis and improving the quality of life of children and adults affected by these diseases. Their website includes lots of information about IBD and helpful resources for caregivers of people with IBD.
IBD help center
The Irwin M. and Suzanne R. Rosenthal IBD Resource Center, also known as the IBD Help Center, from the Crohn’s & Colitis Foundation, provides information and resources to patients, caregivers, and healthcare providers about IBD.
IBD specific caregiver resources
IBD specific resources from the National Alliance for Caregiving (NAC).
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IBD factsheet
A factsheet developed by NAC, in partnership with the Crohn’s & Colitis Foundation and ImproveCareNow, with facts about Crohn’s disease and ulcerative colitis and links to relevant resources.
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IBD caregiver report
NAC, in partnership with the Crohn’s & Colitis Foundation and ImproveCareNow, conducted and released a new caregiving study of individuals with inflammatory bowel disease. This report Riding the Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis (2019) focuses on caregiving for the more than three million Americans affected by the two most common forms of IBD.
Family caregiving
A webpage from the American Association of Retired Persons (AARP) that provides a variety of resources to help family caregivers navigate their role and responsibilities.
National Alliance for Caregiving (NAC)
NAC is a catalyst for change, transforming how the United States recognizes, supports, and values the 53 million family caregivers providing complex care. Through our nationally recognized caregiving research and advocacy, we drive policy, system, and culture change to elevate family caregivers as a national priority. We foster partnerships across aging, disability, healthcare, philanthropy, and the private sector with the goal of making family caregiving more sustainable, equitable, and dignified.
Caregiver Action Network (CAN)
CAN is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. Spanish (and other languages) version is accessible by selecting it from the drop-down menu in the bottom left corner.
Family Caregiver Alliance (FCA)
FCA provides services to family caregivers of adults with physical and cognitive impairments, including assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers.
The Caregiver Space
The Caregiver Space offers a free, supportive environment where you can openly discuss the challenges of caring for someone with a serious disability or illness. Their community is a welcoming space to ask questions, share experiences, receive honest feedback, or simply express your feelings.