Evaluating measurement properties of subjective cognitive decline self-reported outcome measures: a systematic review.

BACKGROUND: Subjective cognitive decline (SCD) is present in the early stage of preclinical Alzheimer's disease (AD) and is associated with an increased risk of further cognitive decline and AD dementia later in life. Early detection of at-risk groups with subjective complaints is critical for targeted dementia prevention at the earliest. Accurate assessment of SCD is crucial. However, current measures lack important psychometric evaluations and or reporting. OBJECTIVES: To systematically evaluate measurement properties of self-reported outcome measures (PROMs) used to assess SCD in the older adult population with or at risk of AD. METHODS AND ANALYSIS: We used the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols 2015 Checklist for reporting. We conducted a literature search, screened, and included validation studies of SCD based on self-reported questionnaires from both population-based and clinical studies, conducted in older adults (≥ 55). We critically appraised the included primary studies using the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidelines. RESULTS: Sixteen studies met the inclusion criteria. The included studies reported psychometric properties of 17 SCD self-reported questionnaires. We extracted data on the structural validity, internal consistency, test-retest reliability, and cross-cultural validity and found a widespread proneness to bias across studies, and a marked heterogeneity is assessed and reported measurement properties that prevented the consolidation of results. CONCLUSION: Our findings suggest that available SCD questionnaires lack content validity evaluation. Currently available measurements of SCD lack development and validation standards. Further work is needed to develop and validate SCD self-reported measurement with good quality measurement properties.

The Experiences of Caregivers of Persons Living with Dementia in Jamaica during COVID-19.

This article provides descriptive insights of the experiences of family caregivers of persons living with dementia during the COVID-19 pandemic. Data were generated as part of a qualitative cross-national project to explore the costs and consequences of providing unpaid dementia care. Participants in Jamaica, who were recruited using community gatekeepers, information booths at health fairs, conferences, and other outreach events, were contacted by telephone to discuss their experiences of the pandemic. When face-to-face in-depth interview data collection was suspended due to the pandemic, ethical approval was received to contact all research participants who were informal unpaid family caregivers, both those whose care recipients had died and those who were active caregivers (N = 19). Participants in this study were the 10 active family caregivers (n F = 8; aged 45+; 60% from high socio-economic status). Their updates and reflections during these calls were documented in fieldnotes and analyzed for key themes. Data showed that the pandemic has illustrated the direct costs, both financial and otherwise, that informal dementia carers bear in Jamaica. It also intensified pre-existing challenges faced by family carers. We provide recommendations for sustainable support for family carers.