What is the patient and carer burden of LGI1-autoimmune Limbic Encephalitis and its associated cognitive and behavioural changes; a mixed methods study using a neuropsychological test battery, semi-structured interviews and digital diaries

  • Rhea Zambellas

Student thesis: Doctoral ThesisDoctor of Health (DHealth)


Background: Autoimmune Limbic Encephalitis (aLE) is a rare condition, targeting parts of the limbic regions of the brain. Instead of the immune system producing antibodies to destroy foreign invaders such as infections, the antibodies attach to healthy body tissue, in this case, the tissue in the limbic brain. This occurs when the antibodies target the LGI1 (leucine-rich glioma inactivated protein) or the CASPR2 (contactin-associated protein 2). There is still a need to learn how the symptoms and behavioural changes associated with these proteins, affect the patient long-term. This research is two-fold. First it identifies the negative sequelae of LGI1-aLE and determines the extent of the patients’ cognitive and emotional impairment, together with an overview from the carers’ assessment. Second, it investigates the patient and carer experiences of living with LGI1-aLE. With the current literature predominately focusing on the symptoms, diagnosis and appropriate treatment of the disease, this research has bridged the literary gap to integrate mixed methodology (MM) and add an original synthesis using interpretive phenomenological analysis (IPA) to provide an insight into the patient and carer perspectives on the burden of living with the chronic negative sequelae of LGI1-aLE.

Methods: A MM approach incorporating a triangulation method was used for 10 patients and 10 carers. A neuropsychological test battery (NPTB), which assessed the patient’s memory, apathy, anhedonia, depression, fatigue and sleep quality, also used carer assessments on neuropsychiatric symptoms, apathy, carer burden, activities of daily living and memory/intelligence changes over ten years. Together with semi-structured interviews and digital diaries, these methods formed the three phases of data collection.

Results: Descriptive and inferential statistics demonstrated the severity of symptoms and comparisons at group level. There was very little evidence for group-level deficits across the tests/questionnaires administered. However, there were several patients that scored in the impaired range, especially in episodic memory, fluency and sleep quality. The interviews represented in five themes, revealed shared patterns and unique experiences which contribute markedly to the impact on daily lives. Using Interpretative Phenomenological Analysis (IPA), some narratives showed consistencies with the NPTB findings, whereas others demonstrated contradictions. The direct effect of the acute symptoms illustrated a range of feelings including shock, fear and disappointment. The chronic symptoms demonstrated sadness and frustration with the patients’ decline in motivation and confidence, and an increase in irritability and apathy, requiring adjustment from both the patient and carer. The impact on relationships varied in extent and severity, together with the degree of reliance and coping strategies in place. Returning to work in a different capacity and reduced grade evoked feelings of loss, yet a few patients embraced their new roles with pride. A final theme exposed a variety of feelings regarding the uncertainty of making future plans, although possibly attributable to old age and other pre-existing health conditions.

Conclusions and implications: The impact of LGI1-aLE leaves many patients with residual, long-term impairment after treatment. The knowledge produced from this thesis has enhanced the knowledgebase beyond traditional measurable datasets and emphasised the need for health professional learning, by exploring the narratives of those impacted by the disease.

Date of Award22 Feb 2023
Original languageEnglish
Awarding Institution
  • University of Bath
SupervisorBryan Clift (Supervisor) & Georgios Argyropoulos (Supervisor)


  • Autoimmune limbic encephalitis

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