{"doi":"10.1002/trc2.12359","title":"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 administration5 and 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. The concept of domain-specific measurement can be appreciated using a simple example: the measurement of “well-being.” Conceptually, well-being can be differentiated in relation to emotional well-being (e.g., positive affect), psychological well-being (e.g., self-determination), social well-being (e.g., belonging), and life satisfaction (e.g., valuing life),6 – but the specific items may differ depending on the domain under study. The Alzheimer's Association's Dementia Care Practice Recommendations (DCPR) include nine domains,7 for which well-being would be differently measured based upon the domain: well-being related to detection and diagnosis might best be measured in relation to an individual's ability to accept the diagnosis, whereas well-being related to activities of daily living might best be measured in relation to independence in toileting. Measurement is also needed to guide and evaluate care, and this is an area largely overlooked in dementia care measurement (e.g., two recent papers focusing on nonpharmacological care for behavioral expressions pointed out that evidence-based care practices lack protocols for administration in daily life).8, 9 The absence of protocols means that caregivers do not have guidance to implement or monitor evidence-based practices, and so are hindered in optimal care provision. The Table 1 below lists the nine DCPR recommendations, example care measures needing development, and domain-specific outcome measures. In recognition of the need for improved measurement, the National Institute on Aging funded the Alzheimer's Association's LINC-AD – Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer's and Dementia (LINC-AD). Key to this effort is use of the DCPR as a structure around which to organize a thorough review of existing and needed measurement tools to advance psychosocial research, papers of which are being published in a special collection in Alzheimer's & Dementia: Translational Research & Clinical Interventions (TRCI). To expand on this effort, TRCI has put forth a Call for Papers on Key Issues in Measurement, hoping to include topics such as person-centered measures that foster a constructive balance between strengths and deficits assessment; evidence-based tools to guide structures and processes of care; community-centric measures and measures for long-term care and international use; measures recognizing diversity and issues of racism, stigma, and discrimination; and stakeholder engagement in measurement development. Already, the special collection includes papers on reconsidering frameworks for dementia care,10 measures for dementia care planning,11 and person-centered assessment;12 a paper on environmental assessment tools is currently in press.13 Upcoming papers will overview and evaluate measures related to detection and diagnosis and activities of daily living; discuss goal attainment scaling as a person-centered measurement tool use","journal":"Alzheimer s & Dementia Translational Research & Clinical Interventions","year":2022,"id":266134,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":10,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.948,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2022-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":378807,"name":"Sam Fazio","orcid":"0000-0002-5408-4241","position":1,"is_corresponding":false},{"id":338366,"name":"Sheryl Zimmerman","orcid":null,"position":0,"is_corresponding":true}],"reference_count":12,"raw_metadata":null,"created_at":"2026-07-19T00:26:54.081997Z","pmid":"36226047","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}