Caregiver burden in anti-NMDA receptor encephalitis

A group of doctors led by Dr. Anusha Yeshokumar have assessed care transitions and caregiver burden among caregivers of individuals with anti-NMDA receptor encephalitis (anti-NMDARE). Surveying caregivers about their experience caring for those with anti-NMDARE and their perceptions of disease progression and recovery provides a unique opportunity to assess aspects of care for patients who may not be able to articulate themselves, due to the nature of the disease.

The group recruited self-identifying caregivers of individuals with autoimmune encephalitis via a link provided on the Encephalitis Society and the Autoimmune Encephalitis Alliance websites and social media accounts. A total of 324 encephalitis caregivers completed the survey, after careful consideration 76 caregivers were included in this study.

Key findings

  • Caregivers reported high levels of dissatisfaction, particularly with knowing how the individual with anti-NMDARE was going to have his/her healthcare needs met and understanding what was needed from the caregiver to manage the individual’s health.
  • Caregivers also expressed moderate to severe levels of caregiver burden, most notably with regard to the impact that caring for an individual with anti-NMDARE had on caregivers’ personal lives.
  • Higher levels of caregiver burden were found when care transitions were poor and when the individual with anti-NMDARE had not yet returned to driving.

Caregivers may provide important insights into aspects of patient care and experience, particularly in diseases such as anti-NMDARE, in which consciousness and memory are often impaired. When patients experience poor care transitions, they may not be able to understand and follow their treatment plan and as a result, may even have worse overall outcomes. The poor care transitions also negatively impact caregiving and are associated with a higher burden.

When caregivers experience high levels of burden, patients suffer. In a study of multiple sclerosis caregivers, a higher burden was associated with poorer perceived disease control state and poor medication adherence. Care transitions for individuals with anti-NMDARE assessed in this study appear worse than what has been reported in individuals with other diseases such as traumatic brain injury.

The findings of this study show the important role care transitions play in overall outcomes and how targeted interventions are needed to support individuals with anti-NMDARE and their caregivers through the course of the disease and recovery.