New Study: Assumptions About Race Affect Quality of Care for Minority Dementia Patients

New Study: Assumptions About Race Affect Quality of Care for Minority Dementia Patients

A new study published in the Journal of the American Medical Association Internal Medicine (JAMA IM) found several factors – including staff assumptions about minoritized groups – may play a role in the variability in the quality of care provided to U.S. nursing home residents with advanced dementia 

The study, “Nursing Home Organizational Culture and Staff Perspectives Influencing Variability in Advanced Dementia Care: The ADVANCE Study ,” identified organizational factors and staff perceptions at nursing homes that may drive known variability in the type of care provided nursing home residents with advanced dementia, especially in the use of more aggressive interventions like tube-feeding or hospitalizations. These aggressive interventions are considered by many to be markers of poor quality of care, as they often do not promote clinical benefits or comfort among persons with advanced dementia. 

Prior research has shown Black residents (versus white residents and those in facilities in the southeastern part of the United States) get more aggressive care, including greater use of feeding tubes and hospital transfers. 

Ruth Palan Lopez, Ph.D., G.N.P.-B.C., F.A.A.N., Professor and Associate Dean of Research, Jacques Mohr Chair at MGH Institute of Health Professions School of Nursing, and Susan L. Mitchell, M.D., M.P.H., Senior Scientist, Hinda and Arthur Marcus Institute for Aging Research at Hebrew SeniorLife and Professor of Medicine at Harvard Medical School, are the lead authors of the study.   

“The study identified several factors that nursing homes could target to improve delivery of goal-directed care to all residents. One is to improve provider knowledge and communication skills that less aggressive interventions may be more in line with the residents’ wishes and best evidence,” said Dr. Lopez. “For example, many nurses may believe that feeding tubes prolong the life of advanced dementia patients, but this is not borne out by existing studies. Nursing homes need to make sure their staff is aware that hand feeding is better for residents. Based on prior research, aggressive interventions can be less effective compared to less-intensive interventions, like feeding residents manually, while requiring more time of the nursing staff provides better care to their patients.” 

The most concerning finding was that staff in nursing homes had preconceptions that families of Black residents did not want to engage in advance care planning and preferred more aggressive care.                                                                                                   

“Staff preconceptions that Blacks are less willing to engage in advance care planning and want more aggressive care speaks to the need to address systemic racial biases in nursing homes,” said Dr. Mitchell, noting that nursing homes in the United States tend to be racially segregated and low-resource homes tend to have more Black residents. “Achieving health equity for all nursing home residents with advanced dementia must be the driving force behind all efforts aimed at reducing disparities in their care.” 

Researchers conducted 169 staff interviews at 14 nursing homes in four states. They identified factors that were typical of nursing homes that provided less intensity of care including: the quality of the physical environment (e.g., good repair, non-malodorous), the availability of standardized advance care planning, greater staff engagement in shared decision-making, and staff understanding that feeding tubes do not prolong life. Aggressive intervention was considered suboptimal. 

More equitable advanced dementia care, the study concluded, may be achieved by addressing several factors, including staff biases towards Black residents. Other solutions include increasing support and funding for low-resourced facilities, standardizing advance-care planning, and educating staff, patients, and their families about evidenced-based care and goal-directed decision-making in advanced dementia. 

Other researchers collaborating in this study work at Beth Israel Deaconess Medical Center, Harvard Medical School, Meyers Primary Care Institute, University of Massachusetts Medical School, Oregon Health & Science University School of Nursing, the University of Tennessee at Martin, Emory Center for Health in Aging and the Nell Hodgson Woodruff School of Nursing at Emory University, the Center for the Study of Aging and Human Development at Duke University School of Medicine, and the Geriatrics Research Education and Clinical Center at Veteran Affairs Medicine Center. 


NYU Nursing Awarded $6.1 Million Grant to Improve Quality of Dementia Care in Hospice

NYU Nursing Awarded $6.1 Million Grant to Improve Quality of Dementia Care in Hospice

The New York University (NYU) Rory Meyers College of Nursing was recently awarded a $6.1 million grant from the National Institute of Health’s (NIH) National Institute on Aging to study a program designed to bring effective care to people with dementia who are receiving hospice care. The two-phase, five-year grant will fund the first large-scale clinical trial of people with dementia in hospice and their caregivers.

According to NYU.edu, sixteen percent of patients in hospice have dementia as their primary diagnosis, making it the second most common hospice diagnosis after cancer. Dementia patients often experience behavioral and psychological symptoms including agitation, depression, and sleep disturbances which affect the quality of life of patients with dementia and their caregivers. End-of-life care providers are often unprepared to manage the challenging symptoms of this complex disease.

The Hartford Institute for Geriatric Nursing at NYU Nursing created Aliviado Dementia Care, a program to implement effective care in the community for people with dementia and their caregivers. The program is based on research on dementia symptom assessment and management and includes training for hospice clinicians, with a focus on education and support for caregivers, and a comprehensive quality improvement program for hospice agencies.

Ab Brody, PhD, RN, FAAN, FPCN, associate director of the Hartford Institute for Geriatric Nursing, associate professor at NYU Meyers, and founder of Aliviado Health, tells NYU.edu, “Despite high rates of dementia in hospice care, little research has been performed on how hospices can best help people with dementia and their caregivers to ensure as high a quality of life as possible during the vulnerable period at the end of life. Our evidence-based program is designed to help people with dementia who are near the end of their lives, as well as their families, to improve their quality of life and cope with this devastating illness.”

To learn more about NYU Nursing’s recent $6.1 million grant to improve the quality of dementia care in hospice, visit here.