Primary Care Screening and Intervention for Elder Neglect in Patients with Dementia: An Evidence-Based Approach

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PROJECT SUMMARY The over-arching aims of this research are to: (1) develop a novel primary care screening tool to identify elder neglect in patients with Alzheimer’s Disease and Related Dementias (AD/ADRD) and a point-of-care technology-driven intervention for caregivers [R61], and (2) conduct a NIH Model Stage III 3-arm randomized clinical trial to determine the impact of both screening itself and screening combined with the intervention compared to usual care [R33]. We are focusing exclusively on developing screening for neglect rather than all types of mistreatment given that neglect is very common in AD/ADRD patients, neglect is associated with the highest mortality and morbidity of all mistreatment types, and specific targets exist for interventions. Combining all types of mistreatment, the approach taken to date in screening tool design, has important disadvantages. It makes screening time-consuming and challenging. Additionally, different mistreatment types are very different phenomena, occur in different groups of older adults under different circumstances, have different impacts on health, and likely require different intervention strategies. Further, our research team has developed and studied a successful, evidence-based technology intervention for AD/ADRD caregivers. We believe that an adaptation of this intervention for caregiver neglect, which focuses on education and skill building and access to resources, may be highly impactful in reducing and preventing neglect. The Specific Aims of the R61 phase are: (Aim 1a) develop a novel, easy-to-use, brief screening tool to identify elder neglect in primary care and describe the tool’s test characteristics (KQ3), (Aim 1b) develop an innovative intervention for elder neglect by modifying a highly successful evidence-based technology-driven caregiving intervention, and (Aim 2) pilot-test the screening tool and intervention in primary care (NIH Model Stage 1b) to assess feasibility and acceptability. In the R33 phase, we will conduct a 3-arm randomized controlled trial (NIH Model Stage III) to compare: (1) screening + intervention, (2) screening only, and (3) usual care without screening. The Specific Aims of the R33 phase are: (Aim 3) evaluate the impact of screening for elder neglect on reduction in neglect exposure (KQ1) and other patient and caregiver-important outcomes by comparing to usual care and (Aim 4) evaluate the impact of screening tool paired with a technology-based caregiver intervention on reduction in exposure to neglect (KQ5) and other patient and caregiver-important outcomes by comparison to usual care and screening without intervention. Neglect screening in primary care with a novel screening tool will have a positive impact on outcomes including decrease in presence of neglect at 6 months and other patient and caregiver-important outcomes (e.g., neglect severity, neglectful ideation; caregiver burden) and that screening paired with a technology-based caregiving intervention will have a greater positive impact than screening alone. Our long- term goal is to develop a screening tool for neglect in AD/ADRD patients that may be integrated into primary care and paired with a scalable intervention with sufficient evidence to justify USPSTF endorsement.