PRL-IHPS Research Focus: Aging and Dementia

End-of-life Care

Liz Dzeng, MD, MPH, PhD is an Associate Professor in Hospital Medicine and an affiliated faculty at PRL-IHPS. She is a hospitalist, sociologist, and ethicist who draws from diverse qualitative research methods including empirical bioethics, sociological methods, and human centered design to improve health equity and quality of end-of-life care. Her current research examines how hospital institutional cultures impact the quality and intensity of end-of-life care for older adults with advanced dementia or serious illness. She is particularly interested in how macro-sociological factors such as neoliberalism and structural racism influences hospital cultures and individual perceptions around care.  

She is the Principal Investigator for a comparative study that seeks to understand how cultures of high intensity end-of-life care develop. This study compares four West coast academic medical centers in the United States and also includes an international arm comparing US practices to that of the United Kingdom and France. These insights inform the second aim of her study which uses human centered design to design and test systems-level interventions to mitigate burdensome end-of-life care in partnership with The Better Lab at UCSF. Dr. Dzeng is also conducting a new study that uses community based participatory research to understand how experiences of structural racism across the life course influences the quality of end-of-life care in older Black adults. 

Hospice and People with Dementia

Krista Harrison, PhD, focuses on improving systems of care for older adults with serious illness, especially those with dementia. This includes home-based care, geriatrics and palliative care, and hospice care.  She used both qualitative and quantitative methods to understand care received at home by older adults, care needs of PWD in different care settings, and palliative care received by PWD. As part of the National Home Based Primary Care Learning Network, she contributed to PCORI-funded formative research and development of a research agenda for home-based care by and for homebound older adults and caregivers. Recent qualitative work focused on how hospice organizations facilitate and measure goal-aligned care at end of life. (Recent publications)

Dr. Harrison's current work uses qualitative methods to document challenges and supports experienced by people with dementia (PWD) and their caregivers, and large secondary dataset analyses to understand the impact of hospice, and hospice policy change, on PWD. She aims to use findings to inform clinical intervention development and recommendations for policy change. As an advocate, Harrison uses her personal and professional experience to argue for policy change for hospice and end-of-life care (especially for older adults with neurodegenerative disease) and for grieving.

Front-line Dementia Care Workforce

Dementia care needs are increasing in skilled nursing facilities (SNFs). There are 5.8 million Americans aged 65 years and older living with dementia, and by 2050 they will number nearly 14 million. On average, 48% of the 1.2 million SNF residents have dementia, including 37% of SNF residents who receive short-term rehabilitation and 59% of long-stay residents. Therefore, the need for a qualified and sustainable workforce is now more important than ever.

Direct care nursing staff such as licensed practical nurses (LPNs) and certified nursing assistants (CNAs) are an essential part of the workforce in SNFs. Yet, very little is known about the characteristics of the front-line dementia care workforce, their work environment as it relates to caring for residents with dementia, and the specialized training this low-wage workforce receives, especially when only half of the U.S. states require specific dementia care training. Our recent National Institute on Aging R01 grant, “Relationships of dementia care workforce experiences, training, and work environment to resident outcomes in skilled nursing facilities,” is a 5-year study that seeks to understand the interactions between factors that impact work environment, workforce characteristics, and dementia care training to better inform programs that can improve health outcomes for residents living with dementia in SNFs. We will explore state dementia care training policies and survey nursing homes about their training practices.  The team from PRL-IHPS who will be participating in this study include Laura Wagner, PhD, RN, FAAN (PI), Joanne Spetz, PhD, Susan Chapman, RN, PhD, FAAN, Alissa Bernstein Sideman, PhD, MPH, MA, and Matthew Jura, PhD and Jackie Miller. This work builds on the robust research this team has been conducting as part of the UCSF Health Workforce Research Center on Long-Term Care. 

UCSF Health Workforce Research Center on Long-Term Care

The UCSF Health Workforce Research Center on Long-Term Care has been supported through a cooperative agreement with the U.S. Bureau of Health Workforce for 8 years. The HWRC’s mission is to help answer the question: Is our health care workforce prepared to meet the growing long-term care needs of people who are aging and people living with disabilities?  The HWRC’s leadership brings together IHPS, Healthforce Center, and the School of Nursing, and the research team includes UCSF faculty from across the UCSF campus, as well as from other organizations including PHI, the Disability Rights Education and Defense Fund, and HWRCs at other universities. New projects are developed each year and our studies have considered nearly every occupation and setting that provides long-term care services. Recently-completed studies have examined the future of the geriatrician workforce, the impact of restrictions on home care aide practice, organization of nursing home medical staff and resident outcomes, the financial vulnerability of long-term care workers, home health nurse turnover, and personal care assistance in rural communities. HWRC faculty and staff also lead other research and evaluation projects, such as the evaluation of San Francisco’s Support at Home Pilot Program, which provided vouchers for home care services to middle-income people with disabilities.