Validation of Wellbeing Scales Among Informal Caregivers of Latinos With Alzheimer’s Disease and Related Dementias
Abstract
We aied to examine the psychometric properties of several wellbeing scales among Latinos in the US, most of which have never been validated in a US-Latino population. We leveraged secondary baseline data from a one-arm mHealth trial on dementia caregiver support. We included 100 responses for caregiver-focused scales and 88 responses for care recipient-focused scales. Scales included the Neuropsychiatric Inventory Questionnaire Severity and Distress scales, Six-item Zarit Burden Inventory, Ten-item Center for Epidemiologic Studies Depression Scale, 15-item Geriatric Depression Scale, Quality of Life in Alzheimer’s Disease, and Single-item Satisfaction With Life Scale. We calculated concurrent validity using Pearson and Spearman correlations and expected correlations amongst all variables in line with the Stress Process Framework. We calculated internal consistency reliability using Cronbach’s alpha. All concurrent validity correlations followed the expected directionality, with 19/21 inter-scale correlations in the total sample reaching statistical significance (p < .05), and 17/21 reaching at least a low correlation (.3). Cronbach’s alpha ranged from .832 to .879 in all scales in the total sample. The English and Spanish caregiver-administered scales tested in this manuscript have good psychometric properties among Latinos. These are now appropriately available for use among US Latinos in research and clinical contexts.
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Data availability statement
Data is available upon request, provided that the request is deemed appropriate by the study PI.
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Biographies
Jaime Perales-Puchalt is an Assistant Professor at the University of Kansas Alzheimer’s Disease Research Center. His background is in psychology and public health. He currently leads federally funded grants to understand and reduce disparities in dementia care among Latinos. He is the Principal investigator of the current project.
Irene Checa currently works at the Department of Evolutionary and Educational Psychology, University of Valencia. She does research in Health Psychology, Sport Psychology and Psychometrics. Her area of interest is the measurement of well-being.
Begoña Espejo is a Professor at the University of Valencia. Her research interests include development, adaptation and validation of assessment instruments, structural equation modelling, alcohol consumption in adolescents, and evaluation of selective prevention programs in alcohol consumption.
Marta de la C. Martín Carbonell specializes is in clinical and health psychology. Her clinical experience is in mental health and care for people with chronic diseases and pain. Her lines of research include psychological assessment, psychosocial factors in chronic diseases and pain, stress and its relationship with anxiety and depression, psychogerontology and cross-cultural research.
Mónica Fracachán-Cabrera is a Research Assistant at Juntos; Center for Advancing Latino Health, at the University of Kansas Medical Center. She studied and graduated as a surgeon in Venezuela and specialized in Otolaryngology at the Central University of Venezuela. She has worked in several text message interventions among Latinos.
Christina Baker is a Research Assistant at Juntos; Center for Advancing Latino Health, at the University of Kansas Medical Center. She is an experienced advocate and public health professional with an interest in system-based solutions aimed at advancing health equity in the community. She has experience working with diverse populations.
Mariana Ramírez-Mantilla is the Director of Juntos; Center for Advancing Latino Health, at the University of Kansas Medical Center. She works leading core administrative functions at Juntos including recruitment, implementation, and evaluation of several research studies. Ms. Ramírez is actively involved in several community boards across the state of Kansas.
Prisca Mendez-Asaro is the Program Director of the Heart of America Alzheimer’s Association. She provides care and support for families, and promotes education to all communities. Her passion and personal experience elevates her desire to successfully reach out to 65 counties in Kansas and Missouri.
Malissia Zimmer is a Program Specialist at the Alzheimer’s Association of Central and Western Kansas. Her office supports 69 counties and provides critical services and programs to thousands of Alzheimer’s affected-families.
Kristine Williams is a nurse gerontologist and the E. Jean Hill Professor at the University of Kansas School of Nursing. Her research tests interventions designed to improve the quality of life of people with ADRD and their families.
K. Allen Greiner is the Nason Family Endowed Professor and Vice Chair of the Department of Family Medicine and Community Health at the University of Kansas Medical Center. He is a practicing family physician and is the Medical Officer for the Wyandotte County Unified Government Health Department.
Jana Zaudke is a Family Physician at Vibrant Health. She graduated at the university of Kansas Medical Center. She serves a largely diverse and underserved community, including Latinos.
Hector Arreaza is a family physician at Clínica Sierra Vista, a Federally Qualified Health Center system, where they serve a majority Latino and underserved population. He graduated from medical school in Venezuela. He was a UCLA International Medical Graduate scholar and finished his residency in the Rio Bravo Family Medicine Residency Program.
Idaly Velez-Uribe received a PhD in Experimental Psychology with an emphasis and concentration in Neuropsychology at Florida Atlantic University. She is currently doing postdoctoral fellow training in neurocognitive measures at FAU and the Wein Center for Alzheimer’s Disease at Mount Sinai Medical within the Florida Alzheimer’s Disease Research Center. Her research is focused on how diverse factors influence brain plasticity across the lifespan.
Henry P. Moore is an Associate Professor of Clinical Neurology at the Department of Neurology, Division of Parkinson’s disease and Movement Disorders at the University of Miami - Miller School of Medicine. He is the Director of Movement Disorders at Palm Beach County, and Director of the Neurology Clinic at UHealth at Boca Raton. He also serves as Director of the Huntington Disease Society of America Center of Excellence and Medical Director of the APDA Information and Referral Coordination Center.
Vanessa Sepulveda-Rivera is a Board-certified Internal Medicine and Geriatrics Physician, Professor of the School of Medicine of the Medical Sciences Campus of the University of Puerto Rico (MSC UPR). She supervises and mentors medicine students, Internal Medicine residents and Geriatrics fellows on their training, medical education and research projects. Her career has been focused on the care and study of the elderly and their most common syndromes.
Kylie Meyer is an Assistant Professor at Case Western Reserve University. Her research focuses on family caregiving relationships, online interventions to support family caregivers, as well as policies to support caregiving families.
Donna Benton is a Research Associate Professor of Gerontology at the USC Leonard Davis School of Gerontology. She received her graduate training in clinical psychology from the California School of Professional Psychology and was a gero-psychological postdoctoral fellow at USC/Rancho Los Amigos Medical Center. Benton is the Director of the USC Family Caregiver Support Center (FCSC) and the Los Angeles Caregiver Resource Center (LACRC). She has over 30 years of experience in providing direct service, advocacy and programs for families caring for persons with dementia.
Krystal Kittle is an Assistant Professor of Community Health Education at the University of Massachusetts Amherst. She holds a PhD is in gerontology. Her research focuses on LGBTQIA+ aging and health.
Lindsey Gillen is a Nurse Practitioner at the University of Kansas Medical Center’s Memory Clinic, at the Department of Neurology. She has experience diagnosing and treating patients with Alzheimer’s disease and related dementias.
Jeffrey M. Burns is the Director of the KU Alzheimer’s Disease Center and Professor of Neurology. Dr. Burns also runs the center’s Clinical Core. He has been appointed to the Kansas Governor’s Work Group to establish a statewide plan for addressing dementia. Dr. Burns has key expertise in directing dementia care networks and in treating individuals with dementia.
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Article first published online: January 10, 2025
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JPP, JB, KAG, and KW conceptualized the design of the project. JPP led the project and JB, KAG, and KW supervised his work. JPP curated the data conducted, formal analysis, and wrote the original draft. All authors took part in the investigation of the study and provided the reviews and editing.
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