The NIH/NIA grant is to fund “Holistic Evaluation to Advance Research in Dementia (HEARD),” a new research project aimed at better understanding and improving the quality of life for those living with dementia.

This project will create an infrastructure for the development, standardization and validation of new outcome measures and methods for psychosocial interventions for those working with people with dementia. In addition, Molony and her fellow researchers will work to develop meaningful measures that capture living well with dementia.

“We want the voices of people living with dementia to be heard in this research,” said Molony, who will serve as lead investigator. “We’re conducting research to improve the wellbeing of people living with dementia, and to do that, we need to include them in the design and implementation of our research. We want to work together to find ways to measure strengths-based, positive outcomes such as wellbeing, dignity and social engagement rather than measuring deficit, decline or challenging behaviors.”

A steering council, made up of two individuals with early-stage dementia, two caregivers of those with moderate stage Alzheimer’s, two expert dementia researchers and two statisticians who have expertise in developing measures, will work with Molony to apply a human-centered design method. 

Steering council members will work to empathize with and better understand the needs of those living with dementia. Molony will also conduct focus groups with 25 Alzheimer’s patients who have already participated in other research studies.

“We will try to better understand and gain empathy for what it was like for them to use the questionnaires and research methods employed in previous studies as well as examine other sources such as books, blogs and podcasts authored by people with Alzheimer’s, research papers, and the work of other advisory groups to gain a deeper understanding of their experiences.”

The professor said she was inspired to do the research after working with the Alzheimer’s Association, publishing research on positive psychosocial outcomes and participating in the Empowering Partners Program at LiveWell in Plantsville, where researchers and individuals with dementia are trained to be co-researchers. In addition, she was motivated by the work of LINC-AD, a National Institutes of Health-funded consortium that is working to broaden scientific interest and involvement in psychosocial dementia care research and strengthen the research framework that guides investigations.

“Using the skills and techniques I learned in the Empowering Partners Program and having access to national and international experts at the Alzheimer’s Association and LINC-AD, I thought the time was right to do this important work.”

Lisa O’Connor, dean of the School of Nursing said, “The School of Nursing community is very proud of Dr. Sheila Molony and her team for securing the NIHNIA grant to advance our understanding of those living with dementia. Dr. Molony is a steadfast advocate for people living with dementia. Her collaborations and research agenda provide deep meaning for the School of Nursing. Having more breadth and depth of understanding of this illness and fostering a more holistic approach to finding more positive outcomes not only strengthens our curriculum, it deepens the experiences we have with our students when teaching about and caring for, patients with dementia. The knowledge and skill Dr. Molony brings to our community on this topic is invaluable and sincerely appreciated.”

Research reported in this publication was supported by the National Institute On Aging of the National Institutes of Health under Award Number R21AG070481. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.