Abstract: Holistic Evaluation to Advance Research in Dementia (HEARD): Measuring the Wellbeing of Persons Living with Alzheimer's Disease and Related Dementias (Society for Social Work and Research 29th Annual Conference)

Schedule:

Saturday, January 18, 2025

Seneca, Level 4 (Sheraton Grand Seattle)

* noted as presenting author

Lea Efird-Green, MSW, MPA, Doctoral Student, University of North Carolina at Chapel Hill, Chapel Hill, NC

Sheila Molony, PhD, Professor of Nursing (Ret), Quinnipiac College, North Haven, CT

Kimberly Van Haitsma, PhD, Professor, The Pennsylvania State University, University Park, PA

Sam Fazio, PhD, Senior Director of Quality Care and Psychosocial Research, Alzheimer's Association, Chicago, IL

Sheryl Zimmerman, PhD, Professor, University of North Carolina at Chapel Hill, Chapel Hill, NC

Background:

Over 55 million people are currently living with Alzheimer’s disease or related dementia worldwide, and another 10 million people are diagnosed every year. One of the barriers to progress in developing and testing psychosocial interventions to foster wellbeing and quality of life for this population is the lack of measures that are sensitive to personally meaningful dimensions of living well with dementia and known to display psychometrically sound properties. This NIH R21/R33 study addresses this need by developing and testing two wellbeing measures: The Living Well with Dementia Inventory (LWDI), a process measure, and the one-item Quality of Day Scale (QODS), an outcome measure, using a community-engaged, collaborative research process. The R21, which has concluded, successfully developed and pilot tested the measures, and the ongoing R33 is testing these measures in a larger sample of people living with mild and moderate dementia (PLWD) across community, assisted living, and skilled nursing settings (N=120).

Methods:

The initial measures were developed using a design-thinking approach include a Steering Council, six focus groups of PLWD, observations, and expert advisory panels. Then, their acceptability and desirability were examined with feedback from 15 PLWD and revised accordingly. The R21 concluded with a pilot test including 20 PLWD dyads (PLWD and care partner) that evaluated measurement stability/reliability over two administrations and validity by way of comparisons to established quality of life measures. The R33 phase is administering the new and established measures to determine their reliability and validity (construct, content, and concurrent), as well as potential floor or ceiling effects.

Results:

Both the LWDI and QOD had face validity (e.g., participants reported they captured meaningful components of wellbeing), were stable (Kappa of .40 [p < .01]), and agreement among dyads was high (LWDI: r = .43, p = .08; QODS: r = .69, p < .001). Content validity was supported by triangulation between quantitative and qualitative data (e.g., the qualitative comments made by participants about their day matched their quantitative rating). The LWDI had internal consistency reliability as a scale (Cronbach’s alpha .76). In relation to validity, the LWDI was correlated with an established measure, the QOL-AD (r = -.69, p < .01), as well as positive affect (r = -.55, p < .05) and affect balance (r = -.62, p < .01) as measured by the PANAS, another established measure. The QODS was also associated with the QOL-AD (Spearman’s r = .38, p < .05). There was a moderate correlation between process (the LWDI) and outcomes (QODS): r = .48, p < .05). This presentation will additionally include results obtained in the R33, which are not yet available.

Implications:

The LWDI and QODS are innovative measures that use a positive reframing of the experience of PLWD to focus on living well (process) and wellbeing (outcome). These measures, once validated in the R33 phase and in further research, represent an opportunity to develop and test interventions and modify care planning to promote holistic wellbeing for PLWD, rather than solely focusing on cognitive and physical functioning.