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
• screening
• qualitative review

Acknowledgements

We would like to thank members of the Agency for Healthcare Research and Quality Scientific Group and the Cochrane Qualitative Research Methods Group for training and guidance in SQS methods. We also would like to thank Dr. Jane Noyes, Dr. Marjorie Danz, Robin Paynter, Melinda Davies, and Dr. Jennifer Lin for their contributions.

Disclosure statement

The authors report there are no competing interests to declare. The authors of this document are responsible for its content. The content does not necessarily represent the official views of or imply endorsement by AHRQ or HHS.

Additional information

Funding

This project was funded under Contract No. 75Q80120D00004 from the Agency for Healthcare Research and Quality (AHRQ)10.13039/100000133, U.S. Department of Health and Human Services (HHS).