Racial and Ethnic Variations in Dementia Diagnosis, Survival, and End-of-Life Care Quality

Saturday, November 5, 2022

3:30 PM – 5:00 PM ET

Location: 201 CC

CE: 1.5

Chair(s)

Olga Jarrín, PhD, RN, FAAN

Associate Professor
Nursing Science
Rutgers, The State University of New Jersey
New Brunswick, New Jersey, United States

Co-Chair(s)

Zahra Rahemi, PhD, RN

Assistant Professor
School of Nursing
Clemson University
Greenville, South Carolina, United States

Discussant(s)

MG

Michael Gusmano, PhD

Professor and Associate Dean
College of Health
Leigh University
Bethlehem, Pennsylvania, United States

Individual Symposium Abstract First Author(s)

HL

Haiqun Lin, MD, PhD

Professor
School of Nursing
Rutgers University
Newark, New Jersey, United States
Zahra Rahemi, PhD, RN

Assistant Professor
School of Nursing
Clemson University
Greenville, South Carolina, United States
Olga Jarrín, PhD, RN, FAAN

Associate Professor
Nursing Science
Rutgers, The State University of New Jersey
New Brunswick, New Jersey, United States
Ayse Malatyali, PhD, MBA, RN

Assistant Professor
College of Nursing and Health Sciences
University of Central Florida
Orlando, Florida, United States

In the United States most adults have a preference to die at home and is an indicator of good end-of-life care. In the context of dementia, family members and caregivers are decision makers and part of good and equitable care involves understanding cultural variation in attitudes and social norms related to dementia, death and dying, and the meaning of a good death. This symposium explores racial and ethnic variation in lifetime dementia diagnosis and end-of-life care quality indicators. The first presentation examines racial, ethnic, and geographic variation in the rarely discussed lifetime prevalence of dementia and survival time from dementia diagnosis to death using national Medicare data. The second presentation describes the relationship between end-of-life care planning and satisfaction with end-of-life care using data from the Health and Retirement Study. The third presentation describes variation in place of death, a key indicator of end-of-life care quality, by dementia diagnosis and race/ethnicity using national Medicare data. The fourth presentation examines variation in hospice use, another indicator of end-of-life-care quality, and place of death by dementia diagnosis, race, and ethnicity using national Medicare data. The symposium concludes with a presentation examining the relationship between place of death and satisfaction with care received using data from the Health and Retirement Study. The Institute for Healthcare Improvement’s Triple Aim (improving the experience of care, improving the health of populations, and reducing per capita costs of health care) serves as a lens for discussing policy and practice implications of the major findings from each presentation.

Learning Objectives:

Explain why the proportion of Medicare beneficiaries with a diagnosis of dementia during their lifetime (by the time of death) is so much larger than the dementia prevalence numbers, and how survival time after dementia diagnosis impacts racial/ethnic differences in prevalence estimates.
Describe factors associated with place of death for people living with dementia and compare and contrast research findings from studies using two national datasets (100% Medicare beneficiary population data from the Centers for Medicare and Medicaid Services, and the Health and Retirement Study).
Discuss why advance care planning and understanding hospice options are important for all older adults and their family caregivers using the IHI Triple Aim framework: improving the experience of care, improving the health of populations, and reducing per capita costs of health care.

Presentations:

3:30 PM – 5:00 PM ET

Survival After Dementia Diagnosis: Variation by Race/Ethnicity and Geographic Factors
Individual Symposium Abstract First Author: Haiqun F. Lin, MD, PhD – Rutgers University
3:30 PM – 5:00 PM ET

End-of-Life Care Planning and Satisfaction Among the Health and Retirement Study Decedents
Individual Symposium Abstract First Author: Zahra Rahemi, PhD, RN – Clemson University
3:30 PM – 5:00 PM ET

Place of Death Among Medicare Beneficiaries: Variations by Dementia Diagnosis and Race/Ethnicity
Individual Symposium Abstract First Author: Olga F. Jarrín, PhD, RN, FAAN – Rutgers, The State University of New Jersey
3:30 PM – 5:00 PM ET

Hospice Utilization and Place of Death by Dementia Diagnosis and Race/Ethnicity
Individual Symposium Abstract First Author: Olga F. Jarrín, PhD, RN, FAAN – Rutgers, The State University of New Jersey
3:30 PM – 5:00 PM ET

Place of Death and Care Satisfaction Among the Health and Retirement Study Decedents
Individual Symposium Abstract First Author: Ayse Malatyali, PhD, MBA, RN – University of Central Florida