Patient needs and expectations regarding cognitive impairments in long COVID: perspectives of young and older adults in the UK

ObjectiveTo explore how younger and older adults in the UK experience, manage, and seek treatment for long COVID-related cognitive impairments, and to identify their treatment preferences and expectations. DesignQualitative study using Charmazs (2014) constructivist grounded theory methodology. SettingOnline, semi-structured interviews conducted with UK adults reporting long COVID-related cognitive symptoms, recruited via patient support groups and research panels. ParticipantsTwenty-one adults with long COVID cognitive impairments: 10 younger participants aged 25-38 years and 11 older participants aged 60-72 years. Main outcome measuresPatients lived experiences, coping strategies, healthcare interactions, and treatment preferences and expectations for non-pharmacological and pharmacological interventions, analysed through iterative coding, constant comparison, and theory generation. ResultsIn the absence of effective treatments, both age groups relied heavily on self-management strategies (e.g., memory aids, structured routines, pacing). Interactions with healthcare were characterised by validation from some clinicians but widespread frustration at the lack of treatment options. Younger adults were more proactive in seeking experimental therapies and clinical trials, while older adults emphasised pragmatic adaptation, independence, and cautious optimism. Across groups, participants preferred non-pharmacological interventions (e.g., cognitive rehabilitation) but also expressed hope for biomedical treatments. The central process identified was "striving for agency" in the face of ongoing cognitive difficulties. ConclusionsThis study highlights the urgent unmet need for evidence-based interventions to address long COVID-related cognitive impairment. Health services should provide practical cognitive rehabilitation and support, and clinicians should acknowledge and validate patients cognitive struggles rather than dismissing them as normal ageing or purely psychogenic in origin. Research into therapeutics (e.g. cognitive training programs, pharmacotherapies) is urgently desired by the participants in this study. Effective solutions will need to be holistic and individualised - addressing not only memory and concentration deficits but also the psychological and social challenges associated with long COVID cognitive impairment in different age groups. WHAT IS ALREADY KNOWN ON THIS TOPICO_LIA large proportion of people with long COVID experience persistent cognitive difficulties, often described as "brain fog," with substantial impact on daily functioning and employment. C_LIO_LIMost studies have focused on symptom prevalence, biological mechanisms, or broad psychosocial consequences. C_LIO_LILittle is known about patients treatment preferences and expectations, and almost no research has explored generational differences between younger and older adults. C_LI WHAT THIS STUDY ADDSO_LITo our knowledge, this is the first qualitative study in the UK to compare younger and older adults perspectives on managing long COVID-related cognitive impairment. C_LIO_LIBoth groups described "striving for agency" through self-management, validation-seeking in healthcare, and balancing preferences for pharmacological and non-pharmacological treatments. C_LIO_LIYounger adults were more proactive in seeking experimental therapies and trial participation, while older adults emphasised pragmatic adaptation and maintaining independence. C_LI HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE, OR POLICYO_LIHealthcare services should expand access to cognitive rehabilitation and psychosocial support, while clinicians should validate patients experiences rather than attributing them to ageing or stress. C_LIO_LIFuture research must test both pharmacological and non-pharmacological interventions, with study designs informed by patient priorities and generational needs. C_LIO_LIPolicymakers and service providers should tailor care pathways to life stage: supporting younger adults with workplace accommodations and research opportunities, while providing older adults with reassurance, independence-focused care, and monitoring for possible accelerated cognitive ageing. C_LI