A synthesis of qualitative studies on patient and caregiver experiences with cognitive impairment screening and diagnosis

Abstract

Objectives: To understand patient and caregiver perspectives on the experience of being screened or diagnosed with cognitive impairment to inform preventive clinical care.

Methods: Systematic review and synthesis of qualitative studies with searches in Ovid MEDLINE ALL, EBSCOHost CINAHL, and Scopus in February 2021. Included studies were assessed for quality and coded with descriptive, deductive, and inductive codes and findings were rated using GRADE-CER-qual.

Results: We included 15 qualitative studies representing 153 patients and 179 caregivers. Most studies involved in-depth interviews. No studies examined screening experiences for older adults presenting without cognitive function concerns; nearly all patients received a diagnosis of cognitive impairment. Seven themes emerged with moderate to high confidence. Findings showed the role of caregivers in pursuing assessment and its benefits in validating concerns and for future planning. Patients were less inclined to be evaluated, fearing judgements or social consequences from the diagnostic label. Caregivers and patients were at times frustrated with the assessment process yet believed it might result in treatments to cure or slow disease progression.

Conclusion: Clinicians and care systems can support caregivers and patients by providing timely and informative resources to support their shared and separate motivations, needs, and concerns.

Keywords: Cognitive impairment; dementia; patient perspectives; qualitative review; screening.