This story was written by Catalina Sofia Dansberger Duque and first appeared on news.umbc.edu
Laura Girling, director of UMBC’s Center for Aging Studies, breaks down stereotypes of people living with dementia through innovative research. Since 2019, the NIH’s National Institute of Aging (NIA) has awarded her more than $750,000. The funding helped her examine how people with dementia live alone in community settings. This includes research focused on how COVID-19 social distancing guidelines impact this vulnerable population and how to ethically include people living with dementia as research participants.
“Persons with dementia are often portrayed as bedridden,” shares Girling, Ph.D. ’15, gerontology. “When I show clips of people living with dementia leading active lives, there is a realization that people with dementia can do many of the same activities others can.”
Girling began studying people living alone with dementia two years ago. The project launched under the title Aging at Home Alone with Alzheimer’s and Related Dementias. She began to assess how people experiencing dementia manage their day to day living. Girling noted their interactions with their caregivers and community, and how they navigate and negotiate their physical and social environments.
To gather such detailed information Girling completes in-home neuropsychometric assessments and in-depth in-person interviews. These in-person interviews have helped her observe the cognition and behavior of people with dementia who live alone in community settings in Maryland.
As COVID-19 spread and in-home visits became impossible, the project had to pause. Virtual visits didn’t allow for the same kind of assessment, Girling explains. But the situation did draw her attention to important new research questions.
Living with dementia during a crisis
As social distancing guidelines were implemented, Girling wanted to know how community-dwelling persons with dementia and their informal and formal supports were managing during a pandemic.
She began a new research project, Exploring COVID-19’s Impact on the Care and Well-being of Community Dwelling Persons with Dementia, with supplemental funding from her main NIA grant. This research evaluates the impact of social distancing guidelines on the health and wellbeing of community-dwelling persons with dementia.
Mary Nemec. Photo courtesy of Nemec.
Girling’s local COVID-19 research team includes research assistant Amber Zurn ‘21, sociology; Michael Allison, assistant director of the Adult Intensive Care Unit at Saint Agnes Hospital; and Mary Nemec, geriatric social worker and senior ethnographer. Nemec worked at UMBC’s Center for Aging Studies for more than 20 years and came out of retirement to lend her expertise to this project.
“Working with Dr. Girling I have learned how to code and systematically sort through research narratives,” shares Zurn. She is enrolled in UMBC’s health and public policy program and holds a certificate in social dimensions of health. “This has been an insightful process. It shows the nuances of qualitative data collection, a skillset I will be able to use in future career fields.”
Preliminary findings, from virtual and phone interviews, indicate that community-dwelling persons with dementia are experiencing more periods of isolation. This is due to the disruption in the supports and structures that allow them to successfully engage in daily living activities. And it puts their health and ongoing independence at risk.
Creating inclusive research
Girling notes that there is still so much that is unknown about improving the health and wellbeing of people with dementia in times of crisis and daily living. Expanding who is included in dementia research will help improve our understanding of the early stages of dementia. It will also give us insight on how to support people experiencing it.
One obstacle in pursuing dementia research, she explains, is the frequent exclusion of people with dementia in human subject research broadly. She is working with Nancy Berlinger, a bioethics research scholar at the Hastings Center, as well as Kate de Medeiros from Miami University, to address this issue.
Berlinger researches health care ethics and social ethics in aging societies. Girling has received supplemental NIA funding to research the bioethical implications of including people with dementia as participants in dementia research. Together, they will develop best practices relating to logistical and other challenges of working with this vulnerable population.
“These guidelines will help the research community support inclusion of people with dementia in future social research,” says Girling.
Banner image: Laura Girling. Photo courtesy of Girling.