Uncovering the hidden toll of autoimmune encephalitis

Abstract

Autoimmune encephalitis is a neurological disorder caused by an autoimmune response in which antibodies target neural proteins in the brain. This can lead to a variety of symptoms which affect various aspects of functioning and can result in critical illness. Advances in the detection of different subtypes of encephalitis and development of treatments mean it is highly treatable, however numerous studies highlight that earlier treatment is associated with better long-term outcomes. Therefore prompt intervention is crucial.
Much of the existing literature examining long-term outcomes in autoimmune encephalitis seems to focus on cognitive and physical outcomes, with limited attention to psychosocial functioning. To address this, a systematic review and narrative synthesis were conducted to examine potential long-term implications for psychosocial functioning. Despite the limited research available, the review found evidence to suggest long-term psychosocial impacts. Furthermore, it highlighted the lack of standardised approaches and validated measures for the assessment of psychosocial functioning in this population. Key targets for intervention were identified, including enhancing employment opportunities, promoting social reintegration and supporting daily living skills; which could improve emotional wellbeing, whilst alleviating caregiver burden, and financial strain.
One subtype of autoimmune encephalitis is anti-N-methyl-D-aspartate receptor (anti-NMDAR) encephalitis, which is particularly notable for its psychiatric presentation. These psychiatric symptoms often lead to misdiagnosis, with many individuals initially admitted to psychiatric hospitals before an accurate diagnosis of encephalitis is made. Many individuals with anti-NMDAR encephalitis become critically ill and require admission to intensive care units. To date, and to the author’s knowledge, there have been no qualitative studies into the impact of anti-NMDAR encephalitis on caregivers. Therefore, the empirical study aimed to use semi-structured interviews and Interpretive Phenomenological Analysis (IPA) to capture caregiver’s experiences of initial symptoms, diagnostic process, treatment, and recovery journey. The analysis identified four themes; ‘The Fight for Diagnosis’, ‘Everything Changed after Diagnosis’, ‘The Caring Role Takes it’s Toll’ and ‘Reflecting on the Experience Now- I’m Just Glad They’re Still Here’. The study highlighted the need for increased awareness of encephalitis, the importance of communication between healthcare providers and caregivers, along with the need for improved support systems for caregivers.
The findings from both chapters are discussed with reference to current literature, clinical implications and recommendations for future research.

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Identifiers

ORCID for Hayley Grantham: orcid.org/0000-0003-3952-3565

ORCID for Warren Dunger: orcid.org/0000-0002-3213-5175

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