Measurement to improve care and outcomes for persons with Alzheimer's disease and dementia

Abstract

Translational research and clinical interventions in Alzheimer's and dementia embrace basic science, clinical studies, and diversity, inclusion, and health equity. 1 Measurement is critical in all areas, but is especially lacking in the psychosocial realm; in fact, both the 2017 and 2020 National Research Summits on Care, Services, and Supports for Persons with Dementia and their Caregivers stressed the need to develop person-centered measures suitable for heterogenous populations to better assess care and outcomes. 2,3 Although numerous measures have been recommended for psychosocial research, 4 their limitations are numerous, including time demands for administration 5and that most are based on a medical model, focus on deficits rather than strengths, were not developed with input from persons living with dementia, are not relevant as the disease progresses or in all care settings, rely on informant reports, are not oriented toward quality improvement, and do not exist for numerous domains.

An exploration of the cultural appropriateness of the family-centered function-focused care intervention

“…Research is needed to further develop, test, and use strength-based measures, for both care partners and persons living with dementia. Such work is underway in both Europe and the United States (Clarke et al, 2020; Zimmerman & Fazio, 2022) consistent with the research and policy priority to enable people living with dementia and their care partners to “live well.”…”

A framework for addressing Alzheimer's disease: Without a frame, the work has no aim

“…Additional excellent example measures for care and "well-being" have been developed for each of the nine Alzheimer's Association dementia care practice recommendation domains, which overlap somewhat with the nodes in the AD Framework. 16 Actual metrics will vary by health system capabilities and resource invest-…”

“…The example metric concept is intended to provide a directional view of what good looks like without being so prescriptive that a health setting without data for a particular metric does no measurement. Additional excellent example measures for care and “well‐being” have been developed for each of the nine Alzheimer's Association dementia care practice recommendation domains, which overlap somewhat with the nodes in the AD Framework 16 . Actual metrics will vary by health system capabilities and resource investment.…”