Elder mistreatment and self-neglect among people living with dementia and their caregivers

The National Institute on Aging awarded Education Development Center, Inc. $320,150 under the Aging Research program (CFDA 93.866) on September 1, 2026.

The research project examines elder mistreatment and self-neglect among older adults with Alzheimer's disease and related dementias, leveraging the UCLA Alzheimer's and Dementia Care (ADC) Program's longitudinal dataset of structured data and clinical notes from dementia care specialists. The study expands the existing dataset to include three cohorts of 3,212 ADC patients spanning the pre- and post-implementation periods of the Centers for Medicare & Medicaid Services' GUIDE Model, a nationwide initiative enhancing structured assessment, caregiver support, and home visits. Research activities comprise three aims: identifying individual-level risk and protective factors associated with documentation of elder mistreatment and self-neglect; determining whether documented concerns predict survival and long-term care placement after adjusting for dementia severity and comorbidities; and leveraging the GUIDE Model as a natural experiment to examine how changes in dementia care delivery influence detection and reporting, and whether GUIDE participation modifies associations between individual characteristics and detection.

Performance occurs in Waltham, Massachusetts. The period of performance runs September 1, 2026 through August 31, 2028. The assistance type is Project Grant. The award obligates $320,150.

Abstract

Elder mistreatment (EM) and self-neglect (SN) among older adults with alzheimer's disease and related dementias (adrd) are urgent but under-addressed public health challenges. Affecting an estimated 43% and 37% of older adults with adrd respectively, EM and SN contribute to injury, functional decline, chronic illness exacerbation, institutionalization, and premature death. Yet little is known about adrd-specific risk and protective factors, the impact of EM and SN on health outcomes, or how changes in dementia care delivery influence detection and response. The proposed research leverages the ucla alzheimer's and dementia care (ADC) program, which maintains a large, longitudinal dataset that includes structured data and rich, unstructured clinical notes from dementia care specialists (DCS). Building on the PI's prior work developing methods to abstract EM/SN information from DCS notes, this project will expand the existing dataset to include three cohorts of ADC patients (n=3,212) spanning pre- and post-implementation of the centers for medicare & medicaid services (CMS) guiding an improved dementia care experience (guide) model - a nationwide initiative that enhances structured assessment, caregiver support, and home visits. Aim 1 will identify individual-level risk and protective factors associated with documentation of EM/SN among older adults with adrd. Aim 2 will determine whether documented EM/SN concern predicts survival and long-term care placement, adjusting for dementia severity and comorbidities. Aim 3 will leverage the guide model as a natural experiment to examine how changes in dementia care delivery influence EM/SN detection and reporting, and whether guide participation modifies associations between individual-level characteristics and EM/SN detection. This study will generate foundational evidence on the multilevel determinants of EM and SN in dementia care, elucidate the impact of these phenomena on patient outcomes, and assess the role new models of care can play in improving detection and response. Findings will inform the design of interventions that improve dementia care quality, enhance caregiver support, and advance elder justice.