Caregiver Abuse and Neglect of People with Multiple Sclerosis (P06.198)

Abstract

Objective:Objective 1: To define major categories of caregiver mistreatment of people with MS and validate a survey instrumentthat reliably detects their presence and severity.Objective 2: To investigate risk factors associated with abuse and neglect among people with MS and their caregivers. Background Approximately one in four people with MS experiences sufficient disability to require formal caregiving, most of which is provided by family members. There is limited literature on caregiver abuse in MS. We therefore undertook a research project to investigate caregiver mistreatment. Design/Methods: An advisory board agreed upon definitions of mistreatment. A Longitudinal, Experts, All Data panel assessed whether caregiver mistreatment had occurred in each participant dyad. During structured, in-home interviews, we assessed 102 participant dyads with the MS Functional Composite, Modified Fatigue Impact Scale, MS Self-Efficacy Scale, Beck Depression Inventory, and quality of life items from the MSQOL. Caregivers completed ADL care scales and documented their weekly caregiving hours. Categorical variables were tested with chi-square analysis. For continuous variables, tests included ANOVA, Kruskal Wallis tests, and logistic regression analyses. Results: Caregivers were predominantly family members. Fifty-seven (55.9%) of participants reported mistreatment. Subtype prevalence rates were 45.1% for psychological abuse, 12.7% for physical abuse, 4.9% for sexual abuse, 22.5% for neglect, and 17.6% for financial abuse. We found significant group differences for depression, psychological aggression, physical assault, quality of life, social support of the person with MS, and whether the caregiver had a mental health diagnosis. Conclusions: We found high rates of caregiver abuse and neglect of people with MS. Increased disability was not associated with mistreatment or severity of mistreatment. Limitations in this study included its small sample size and the fact that most participants were from a single university medical center. Nonetheless, these preliminary data confirm that people with MS tend to be at high risk of abuse and neglect. Supported by: A research contract from the National Multiple Sclerosis Society. Disclosure: Dr. Morrison has received personal compensation for activities with Teva Neuroscience and Biogen Idec as a speaker. Dr. MOrrison has received research support from the National Multiple Sclerosis Society. Dr. Wiglesworth has received research support from National Multiple Sclerosis Society. Dr. Sorkin has received research support from the National Multiple Sclerosis Society. Dr. Mosqueda has received research support from the National Multiple Sclerosis Society.