Dementia Screening for Family Members: No Clear Benefit or Harm Found in Landmark Trial

Background

Alzheimer disease and related dementias (ADRD) affect millions worldwide, with early detection often touted as a way to improve outcomes for both patients and their families. However, the benefits and risks of screening family members for cognitive impairment remain unclear. This study aimed to evaluate whether ADRD screening in primary care settings positively or negatively impacts family members’ well-being and caregiving capacity.

Study Design

This multisite randomized clinical trial was conducted across 29 primary care clinics from October 2018 to September 2023. The study enrolled dyads of patients aged 65 years and older and a family member, randomizing them into one of three groups: screening only, screening plus referral for diagnostic follow-up, and a no-screening control group. Cognitive screening was conducted using validated tools like the Mini-Cog and Memory Impairment Screen Telephone version (MIS-T). Data were collected at multiple time points up to 24 months.

Key Findings

The trial included 1808 dyads, with a mean patient age of 73.7 years and family member age of 64.2 years. Only 5.1% of patients screened positive for cognitive impairment, and among those offered follow-up diagnostics, 35.7% declined further assessment. The primary outcome—family member health-related quality of life at 24 months—showed no significant difference between the screening and control groups (SF-36 physical component: -0.21; 95% CI, -1.26 to 0.85; mental component: 0.58; 95% CI, -0.18 to 1.33). Secondary outcomes, including caregiver preparedness and patient quality of life, also showed no significant differences.

Expert Commentary

The findings suggest that routine ADRD screening in primary care may not confer measurable benefits to family members’ quality of life or caregiving capacity. The low positive screening rate and high refusal rate for follow-up diagnostics highlight potential practical barriers to implementing such programs. These results challenge the assumption that early detection necessarily leads to better outcomes for caregivers.

Conclusion

This study provides robust evidence that dementia screening for family members does not significantly improve or harm their well-being. The findings may inform clinical guidelines and family counseling practices, emphasizing the need for more targeted approaches to support caregivers. Future research should explore alternative interventions to enhance caregiver preparedness and quality of life.

Funding and Registration

This trial was registered on ClinicalTrials.gov (NCT03300180).