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NIH Record - 75th Anniversary - National Institutes of Health

Rare Diseases Affect Patients as Well as Caregivers

Bevans speaks from her office

Caregivers must also take care of themselves, notes Dr. Margaret Bevans. “I’m here today to make a universal statement of permission for all caregivers of those with rare disease: participate in everyday self-care activities.”

Rare diseases affect more than the individual with the disease, said Dr. Margaret Bevans, during a Rare Disease Day session on caregiver resilience.

“They affect many others, including family members, and often parents, who serve as caregivers,” said Bevans, director of the Office of Research Nursing in NHLBI’s Office of the Clinical Director.

Caregivers are not paid and don’t receive any formal training. They give of themselves unconditionally to those they love to make a difference, she said. 

They report higher levels of anxiety, depression, fatigue and loneliness. Oftentimes, they have to change their daily lives and restrict leisure activities. One study of parents with a child with a rare disease found they have a slightly lower quality of life compared to parents with healthy children. 

“Caregiving is a chronic stressor,” said Bevans. “It is a complex and complicated experience that includes multiple competing priorities.”

There are many positive aspects of caregiving, such as finding meaning and being connected with people we love, said Bevans. However, “caring for another person, no matter how much you love them, is heavy.” 

To build resilience, they must learn how to balance caring for another and one’s own emotional, spiritual and physical health. 

“There are many professional interventions that your providers can refer you for, which can help support you and build resilience,” she said. 

Additionally, there are everyday activities caregivers can do to cultivate balance, she said. They can, for example, find a trusted support person to share their feelings; improve communication with family, friends and providers; delegate responsibilities to others; exercise and pursue physical activity; get fresh air and explore nature; and make time to be mindful. 

“As you prioritize your self-care, remember the acronym, REST—relax, eat healthy and stay active, sleep and take care of yourself,” Bevans concluded.  

Find resources for caregivers on the Clinical Center’s website at: https://cc.nih.gov/wecare.

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