Hidden Costs: Caregivers and Girls with Eating Disorders

Although there is widespread information about the overall cost of treating a person with an eating disorder, until recently there was little data about the physical, emotional, and financial cost to a family member caring for a girl with anorexia, bulimia, or an eating disorder not otherwise specified (EDNOS). In an ongoing study, Cheryl A. Dellasega, of Penn State University, and Margaret Marino, Middletown, PA, are exploring the impact of care-giving for a girl with an eating disorder.

The researchers used the Caregiving Information Form, a questionnaire they developed that contains 30 questions designed to assess stressors related to caring for an ill family member. Questionnaires were mailed out to 153 volunteers recruited through organizations and referred by therapists specialized in the treatment of eating disorders. Most of the caregivers who responded were middle-aged, married, female professionals caring for a young woman aged 20 (patients ranged in age from 12 to 44 years). The authors note that their study is ongoing, and thus far 29 questionnaires (13%) have been returned.

Most of the daughters have anorexia nervosa and have been ill for nearly 6 years. The main stressor the researchers have identified thus far is the mothers’ fear their daughters may die. Most of the mothers have had significant decreases in both physical and mental health since their daughters developed an eating disorder.

The caregivers reported spending an average of $112 per week (range $0-$850) on care for their daughters related to their eating disorders. They also reported missing nearly a day of work per month because of their caregiving responsibilities. Dellasega and Marino reported their findings at the Academy for Eating Disorders meeting in Denver this spring.