Work

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

Year: 2022

Type: article

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 useful across individuals and the course of the disease; address recruitment and engagement in dementia research; and explore the operationalization of person-centered care in practice. As an additional effort to promote new measurement development, the Alzheimer's Association is issuing a series of request for research applications on Advancing Research on Care and Outcome Measurement (ARCOM). Given individual differences, diversity, change over time, and the complexity of care and outcomes, it may be that ultimately a “toolkit” of measures is developed that incorporates measurement of all nine of the DCPR domains and ultimately yields a common lexicon that can embrace all domains. In so doing, it is advisable that efforts across countries be better harmonized, including among LINC-AD, INTERDEM (Early detection and timely INTERvention in DEMentia, composed of European researchers), JPND (a global research initiative focused on neurodegenerative disease), and the US-based IMPACT Collaboratory, which aims to transform dementia care across health care systems and has its own core that focuses on pragmatic measurement related to person/patient and caregiver relevant outcomes.16 Within the US, both LINC-AD and IMPACT welcome individuals and organizations from across the globe to access the resources on their websites and participate in their educational and networking opportunities; see https://alz.org/linc-ad/overview.asp and https://impactcollaboratory.org/. Of special relevance is IMPACT's Patient and Caregiver Relevant Outcome iLibrary, which links and critiques existing measures related to the DCPR domains. This work was supported by the National Institute on Aging (NIA) of the National Institutes of Health under Award Number R24 AG065185. The authors also were also supported by the NIA under Award Number U54AG063546, which funds the NIA Imbedded Pragmatic Alzheimer's Disease and AD-Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Author disclosures are available in the supporting information. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.

Source: Alzheimer s & Dementia Translational Research & Clinical Interventions

DOI: 10.1002/trc2.12359

Authors: Sheryl Zimmerman, Sam Fazio

Institutions: University of North Carolina at Chapel Hill, Alzheimer's Association

Language: English

Topic: Dementia and Cognitive Impairment Research

Subfield: Psychiatry and Mental health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $2,200