Exploring the experiences of cognitive symptoms in Long COVID: a mixed-methods study in the UK

Song, Ning; Sivan, Manoj; Miller, Amy; Chowdhury, Rumana; Burke, Melanie Rose · 2025 · DOAJ

DOI: 10.1136/bmjopen-2024-084999

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Summary

This mixed-methods study investigates the lived experiences and extent of cognitive symptoms in individuals with Long COVID (LC) in the UK. Motivated by the high prevalence of cognitive dysfunction in LC and its association with potential neurodegeneration, the research aims to provide a comprehensive understanding of how these symptoms impact daily life, psychological well-being, and occupational status. The study seeks to fill a gap in current literature by combining quantitative measures of symptom severity with qualitative insights into subjective experiences, thereby informing rehabilitation strategies. The researchers employed a mixed-methods design involving 25 adults with self-reported LC living in the UK. Data collection occurred in April 2023 through eight focus groups (four in-person, four online) and a self-report questionnaire. The final analysis included 24 participants, as one did not return the questionnaire. Quantitative data were gathered using the Post-Long COVID-19 Questionnaire, which assessed symptom severity and perceived change across domains including mental ability, energy, and mobility. Qualitative data were collected via audio-recorded focus groups guided by broad discussion questions. The qualitative transcripts were analyzed using Framework Analysis, a structured approach involving familiarization, coding, charting, and theme development, with inter-rater reliability checks performed by a second analyst. Quantitative results indicated that cognitive symptoms were among the most severe and impactful. Specifically, 87.5% of participants reported worsened concentration, 83.3% reported declined short-term memory, and 75% noted changes in communication. Participants reported a tenfold increase in concern regarding their cognition post-infection. Qualitative analysis revealed three interconnected themes. First, participants provided rich accounts of cognitive impairments, frequently describing "brain fog" characterized by deficits in memory, language, attention, executive function, and processing speed. Second, these symptoms profoundly impacted physical function and psychological well-being. Over half of the participants experienced negative effects on employment, including reduced hours, role changes, or loss of professional identity. Difficulties with activities of daily living, such as cooking and driving, were also common. Psychologically, cognitive decline contributed to low mood, anxiety, and fears of accelerated aging or dementia. Third, participants employed various symptom management strategies, such as simplifying decisions, using reminders, and taking regular rest breaks. However, these strategies were often tedious or ineffective, with many participants continuing to experience forgetfulness despite their efforts. The study concludes that cognitive dysfunction in LC is exacerbated by a vicious cycle involving withdrawal from daily life, loss of employment, physical inactivity, and social isolation, which drive low mood and further cognitive decline. The authors propose the "Long-COVID Interacting Network of factors affecting Cognitive Symptoms" framework to synthesize neural, individual, and lifestyle contributors. This framework is intended to guide clinicians and researchers toward a comprehensive rehabilitation approach that addresses the multifaceted nature of LC. The findings highlight the urgent need for targeted interventions to support the occupational, psychological, and cognitive needs of individuals with Long COVID.

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• cognitive impairment