IDS Seed Grants Awardees Highlight

hand of an aged, colored person resting on a blanket

Although the search for the fountain of youth continues, we must face the reality of aging and the increase in an aging population. The number of adults over the age of 85 is expected to rise quickly; by 2050, those over the age of 80 will triple world-wide (1). Along with aging comes age-related diseases. Assistant Professors, Joohyun Chung PhD, at the Elaine Marieb College of Nursing, and Ning Zhang* PhD, in the School of Public Health and Health Sciences, at the University of Massachusetts Amherst know this all too well. Their lives have been touched by age-related diseases and they are well aware of the possibility that they may have to move to a long-term care facility late in life. ‘We are all aging; this will be our stories’ says Chung. This is part of their motivation to explore whether there are ethnic and racial disparities in the care received by people with moderate-to-severe Alzheimer’s disease or related dementia in long-term care facilities with a seed grant from the Institute of Diversity Sciences (IDS).

Sabriye Abban
Sabriye Abban, PhD nursing student (Elaine Marieb College of Nursing)

Two questions drive their research project: Do patients at long-term care facilities at the end of life receive palliative care or non-palliative care? And, are there race disparities in who receives what type of care? Palliative care optimizes quality of life and reduces suffering among people with serious, complex, and often terminal illnesses when there is no cure. Curative care, on the other hand, attempts to overcome disease through all available medical means. Past research shows that even though they are at the end of life, only 15% of patients with Alzheimer’s or other dementia in long-term care facilities receive palliative care to relieve suffering (2). Chung and Zhang’s preliminary research found that African Americans patients with Alzheimer’s and related dementia in nursing homes and long-term care facilities are 4 times more likely to be subject to invasive procedures like feeding tubes and 2.5 times more likely to have multiple hospitalizations than White patients with similar conditions. Now, Chung and Zhang, along with PhD nursing student, Sabriye Abban, are digging into their data to find out more.

Chung, Zhang, and Abban’s research focused on four indicators of non-palliative care that range in invasiveness in an existing dataset: hospitalization, feeding tubes, intravenous fluids or medication, and physical restraints. They also documented patients’ race. In addition to analyzing their data more thoroughly, they also plan to take it a step further by interviewing staff providing care to patients at local nursing homes to explore whether they are witnessing the same race disparities that have emerged in the existing data. The research team also wants to understand the challenges the staff are facing. This interview process has been tough because Covid protocols still restricting outside visitors and continued staff shortage in long-term care facilities means that many staff do not have the time to participate in research related interviews. But Chung, Zhang, and Abban are persisting.

From left: Ning Zhang PhD (School of Public Health and Health Sciences) and Joohyun Chung PhD (Elaine Marieb College of Nursing)
From left: Ning Zhang PhD (School of Public Health and Health Sciences) and Joohyun Chung PhD (Elaine Marieb College of Nursing)

Currently, 6.5 million Americans ages 65 and older are living with Alzheimer's and dementia, and this number may double by 2060 (3). In the United States, most people with Alzheimer’s and related dementias are placed in institutions before death. Chung believes institutionalized adults are a vulnerable population and more research is needed on the quality of care in these facilities. While a lot of research focuses on hospitals and acute care facilities, she notes that far less research examines the quality of care provided at nursing homes and long-term care facilities. This is a ‘hidden,’ but critical topic of research.

Chung acknowledges the limitations with the dataset they are using. It doesn’t provide a complete picture of the total care a patient receives. So they want to follow it up with a larger project and more funding. They have applied for a bigger grant from the National Institutes of Health for a follow-on project that uses their IDS-funded project as the proof of concept.

*Zhang is no longer at UMass and is currently an Associate Professor at Bouvé College of Health Sciences at Northeastern University.