Center for Excellence in Assisted Living CEAL@UNC

Advancing the well-being of the people who live and work in assisted living through research, practice, and policy.

End of Life

Do End-of-Life Outcomes Differ by Assisted Living Memory-Care Designation?

Apr 1, 2024
Background Residential care/assisted living (RC/AL) is an increasingly common place of end-of-life care for persons with Alzheimer’s disease and related dementia (ADRD), who have unique care needs as their health declines. Approximately 22% of RC/ALs provide specialized memory care (memory-care RC/AL). Understanding how end-of-life outcomes differ by memory care among residents with ADRD could facilitate […]

Do End-of-Life Outcomes Differ by Assisted Living Memory-Care Designation?

by Lea Efird-Green

Background Residential care/assisted living (RC/AL) is an increasingly common place of end-of-life care for persons with Alzheimer’s disease and related dementia (ADRD), who have unique care needs as their health declines. Approximately 22% of RC/ALs provide specialized memory care (memory-care RC/AL). Understanding how end-of-life outcomes differ by memory care among residents with ADRD could facilitate […]

Hospice Providers Serving Assisted Living Residents: Association of Higher Volume with Lower Quality

Mar 1, 2024
Background Assisted living (AL) community caregivers are known to report lower quality of hospice care. However, little is known about hospice providers serving AL residents and factors that may contribute to, and explain, differences in quality. We examined the association between hospice providers’ AL patient-day volume and their quality ratings based on Hospice Item Set […]

Hospice Providers Serving Assisted Living Residents: Association of Higher Volume with Lower Quality

by Lea Efird-Green

Background Assisted living (AL) community caregivers are known to report lower quality of hospice care. However, little is known about hospice providers serving AL residents and factors that may contribute to, and explain, differences in quality. We examined the association between hospice providers’ AL patient-day volume and their quality ratings based on Hospice Item Set […]

Resident and Caregiver Dyads Talk About Death and Dying in Assisted Living: A Typology of Communication Behaviors

Jan 1, 2024
Background In the U.S., assisted living (AL) is increasingly a site of death, and anxiety about dying has been identified in long-term care residents and their caregivers. Communication about death and dying is associated with better quality of life and care at end of life (EOL). Objective To understand communication behaviors used by AL residents […]

Resident and Caregiver Dyads Talk About Death and Dying in Assisted Living: A Typology of Communication Behaviors

by Lea Efird-Green

Background In the U.S., assisted living (AL) is increasingly a site of death, and anxiety about dying has been identified in long-term care residents and their caregivers. Communication about death and dying is associated with better quality of life and care at end of life (EOL). Objective To understand communication behaviors used by AL residents […]

Characteristics and End-of-Life Care Pathways of Decedents From a National Cohort of Assisted Living Residents

Dec 1, 2023
Background: Assisted living (AL) is an increasingly common, place of care for dying persons. However, it remains unclear to what extent residents are able to age in place or if AL represents an additional transition before death. Objectives: Examine the sociodemographic characteristics, comorbidities, health care utilization, and end-of-life care pathways of AL residents before death. […]

Characteristics and End-of-Life Care Pathways of Decedents From a National Cohort of Assisted Living Residents

by Lea Efird-Green

Background: Assisted living (AL) is an increasingly common, place of care for dying persons. However, it remains unclear to what extent residents are able to age in place or if AL represents an additional transition before death. Objectives: Examine the sociodemographic characteristics, comorbidities, health care utilization, and end-of-life care pathways of AL residents before death. […]

Turning It Over to God: African American Assisted Living Residents’ End-of-Life Preferences and Advance Care Planning

Jul 1, 2023
Objectives Assisted living (AL), a popular long-term care setting for older Americans, increasingly is a site for end-of-life care. Although most residents prefer AL to be their final home, relatively little is known about end-of-life preferences and advance care planning, especially among African American residents. Our research addresses this knowledge gap. Methods Informed by grounded […]

Turning It Over to God: African American Assisted Living Residents’ End-of-Life Preferences and Advance Care Planning

by Lea Efird-Green

Objectives Assisted living (AL), a popular long-term care setting for older Americans, increasingly is a site for end-of-life care. Although most residents prefer AL to be their final home, relatively little is known about end-of-life preferences and advance care planning, especially among African American residents. Our research addresses this knowledge gap. Methods Informed by grounded […]

End-of-Life Care Transitions in Assisted Living: Associations With State Staffing and Training Regulations

Jun 1, 2023
WHAT THIS MEANS FOR YOU: This study examined associations between end-of-life care transitions (meaning stays in hospitals and nursing homes in either the 7 or 30 days before death in this study) and state staffing and training requirements for nearly 114,000 Medicare beneficiaries who died in an assisted living community in 2018-2019. A higher proportion of transitions was associated with stricter regulations about licensed and direct care worker staffing, whereas a lower proportion was associated with more specific regulations about direct care worker training. Therefore, policymakers and practitioners may want to implement regulations that make staff training requirements more specific to better address end-of-life care.

End-of-Life Care Transitions in Assisted Living: Associations With State Staffing and Training Regulations

by Lea Efird-Green

WHAT THIS MEANS FOR YOU: This study examined associations between end-of-life care transitions (meaning stays in hospitals and nursing homes in either the 7 or 30 days before death in this study) and state staffing and training requirements for nearly 114,000 Medicare beneficiaries who died in an assisted living community in 2018-2019. A higher proportion of transitions was associated with stricter regulations about licensed and direct care worker staffing, whereas a lower proportion was associated with more specific regulations about direct care worker training. Therefore, policymakers and practitioners may want to implement regulations that make staff training requirements more specific to better address end-of-life care.

State Regulations and Assisted Living Residents’ Potentially Burdensome Transitions at the End of Life

Jun 1, 2023
WHAT THIS MEANS FOR YOU: The study examined potentially burdensome end-of-life transitions (e.g., repeated hospitalizations) in relation to state regulations, using Medicare claims data for over 129,000 assisted living residents in communities with 25 or more beds between 2017-2019. There were no associations between transitions and regulations about third-party services or staffing, and small associations between transitions and medication management regulations. These inconclusive results indicate that more research is needed to understand the wide variety of end-of-life outcomes experienced by assisted living residents.

State Regulations and Assisted Living Residents’ Potentially Burdensome Transitions at the End of Life

by Lea Efird-Green

WHAT THIS MEANS FOR YOU: The study examined potentially burdensome end-of-life transitions (e.g., repeated hospitalizations) in relation to state regulations, using Medicare claims data for over 129,000 assisted living residents in communities with 25 or more beds between 2017-2019. There were no associations between transitions and regulations about third-party services or staffing, and small associations between transitions and medication management regulations. These inconclusive results indicate that more research is needed to understand the wide variety of end-of-life outcomes experienced by assisted living residents.

“You Gotta Have Your Cry”: Administrator and Direct Care Worker Experiences of Death in Assisted Living

Dec 1, 2022
Assisted living (AL) is increasingly a site of end-of-life care and a long-term care location where growing numbers of people are aging in place and dying. Despite these trends, limited research focuses on how death and grief impact the work environment in AL. This grounded theory analysis examined qualitative data collected from 27 administrators and […]

“You Gotta Have Your Cry”: Administrator and Direct Care Worker Experiences of Death in Assisted Living

by Lea Efird-Green

Assisted living (AL) is increasingly a site of end-of-life care and a long-term care location where growing numbers of people are aging in place and dying. Despite these trends, limited research focuses on how death and grief impact the work environment in AL. This grounded theory analysis examined qualitative data collected from 27 administrators and […]

Association between State Regulations Supportive of Third-Party Services and Likelihood of Assisted Living Residents in the US Dying in Place

Oct 1, 2022
Importance: Older adults are increasingly residing in assisted living residences during their last year of life. The regulations guiding these residential care settings differ between and within the states in the US, resulting in diverse policies that may support residents who wish to die in place. Objective: To examine the association between state regulations and […]

Association between State Regulations Supportive of Third-Party Services and Likelihood of Assisted Living Residents in the US Dying in Place

by Lea Efird-Green

Importance: Older adults are increasingly residing in assisted living residences during their last year of life. The regulations guiding these residential care settings differ between and within the states in the US, resulting in diverse policies that may support residents who wish to die in place. Objective: To examine the association between state regulations and […]

Successful Aging in Assisted Living: The Importance of Near Visual Acuity

Sep 1, 2022
Successful aging among independent community-dwelling older adults and those in residential settings is paramount to aging in place. The purpose of the current study was to explore how sensory, cognitive, and functional impairments affect successful aging in assisted living (AL) settings. Vision compromise was noted for near visual acuity (NVA) (14.3%) and distance visual acuity […]

Successful Aging in Assisted Living: The Importance of Near Visual Acuity

by Lea Efird-Green

Successful aging among independent community-dwelling older adults and those in residential settings is paramount to aging in place. The purpose of the current study was to explore how sensory, cognitive, and functional impairments affect successful aging in assisted living (AL) settings. Vision compromise was noted for near visual acuity (NVA) (14.3%) and distance visual acuity […]

State Regulations and Hospice Utilization in Assisted Living during the Last Month of Life

Aug 1, 2022
Objectives: To examine the association between hospice/staffing regulations in residential care or assisted living (RC/AL) and hospice utilization among a national cohort of Medicare decedents residing in RC/AL at least 1 day during the last month of life, and to describe patterns of hospice utilization. Design: Retrospective cohort study of fee-for-service Medicare beneficiaries who died […]

State Regulations and Hospice Utilization in Assisted Living during the Last Month of Life

by Lea Efird-Green

Objectives: To examine the association between hospice/staffing regulations in residential care or assisted living (RC/AL) and hospice utilization among a national cohort of Medicare decedents residing in RC/AL at least 1 day during the last month of life, and to describe patterns of hospice utilization. Design: Retrospective cohort study of fee-for-service Medicare beneficiaries who died […]

End-Of-Life Care In Assisted Living Communities: Race And Ethnicity, Dual Enrollment Status, And State Regulations

May 1, 2022
WHAT THIS MEANS FOR YOU: This study examined end-of-life care in assisted living – specifically whether residents died in the community or elsewhere and received hospice care -- and whether these were associated with select factors. Among 100,783 Medicare beneficiaries who died in 16,560 communities during 2018–2019, nearly 60% died in their community, with 84% receiving hospice care. Communities with more Medicare-Medicaid enrollment had more residents dying in the community, and white residents were more likely than Black ones to use hospice care. In states with less strict assisted living regulations (e.g., for dementia care, admission/retention, and staffing/training), residents were more likely to die outside of the community (e.g., in a hospital or nursing home).

End-Of-Life Care In Assisted Living Communities: Race And Ethnicity, Dual Enrollment Status, And State Regulations

by Lea Efird-Green

WHAT THIS MEANS FOR YOU: This study examined end-of-life care in assisted living – specifically whether residents died in the community or elsewhere and received hospice care — and whether these were associated with select factors. Among 100,783 Medicare beneficiaries who died in 16,560 communities during 2018–2019, nearly 60% died in their community, with 84% receiving hospice care. Communities with more Medicare-Medicaid enrollment had more residents dying in the community, and white residents were more likely than Black ones to use hospice care. In states with less strict assisted living regulations (e.g., for dementia care, admission/retention, and staffing/training), residents were more likely to die outside of the community (e.g., in a hospital or nursing home).

Ethics of Health Information Sharing and Social Relationships at End of Life in Assisted Living

Apr 1, 2022
Given an observed tension between perceived privacy restrictions and meaningful social connection in assisted living (AL) and using a relational perspective, we conducted a secondary thematic analysis of health information sharing practices among residents and their care partners in one large urban AL community in metropolitan Atlanta. Data included in-depth interviews with residents (n = […]

Ethics of Health Information Sharing and Social Relationships at End of Life in Assisted Living

by Lea Efird-Green

Given an observed tension between perceived privacy restrictions and meaningful social connection in assisted living (AL) and using a relational perspective, we conducted a secondary thematic analysis of health information sharing practices among residents and their care partners in one large urban AL community in metropolitan Atlanta. Data included in-depth interviews with residents (n = […]

“You Lose Some Good Friends”: Death and Grief in Assisted Living

Mar 1, 2022
The purpose of this study was to investigate responses to death at multiple levels within the assisted living (AL) system and to characterize the psychosocial impact of death on surviving residents. This study used secondary thematic analysis of multiple data sources collected as part of a larger quantitative-focused study with 21 ALs. Data sources included: […]

“You Lose Some Good Friends”: Death and Grief in Assisted Living

by Lea Efird-Green

The purpose of this study was to investigate responses to death at multiple levels within the assisted living (AL) system and to characterize the psychosocial impact of death on surviving residents. This study used secondary thematic analysis of multiple data sources collected as part of a larger quantitative-focused study with 21 ALs. Data sources included: […]

State Variation in Potentially Burdensome Transitions among Assisted Living Residents at the End of Life

Feb 1, 2022
WHAT THIS MEANS FOR YOU: There are significant differences in the quality of end-of-life care in AL. Research on 37,668 deceased Medicare beneficiaries who lived in AL found that 1 in 5 experienced challenging transitions including frequent hospitalizations before their death. Burdensome transitions, especially in the last three days of life, varied widely among states, which may be associated with state-level regulations.

State Variation in Potentially Burdensome Transitions among Assisted Living Residents at the End of Life

by Lea Efird-Green

WHAT THIS MEANS FOR YOU: There are significant differences in the quality of end-of-life care in AL. Research on 37,668 deceased Medicare beneficiaries who lived in AL found that 1 in 5 experienced challenging transitions including frequent hospitalizations before their death. Burdensome transitions, especially in the last three days of life, varied widely among states, which may be associated with state-level regulations.

Assisted Living Administrators’ Approaches to Advance Care Planning

Feb 1, 2022
WHAT THIS MEANS FOR YOU: Interviews with 27 AL administrators revealed different approaches to advanced care planning (ACP). They all acknowledged the importance of ACP and often discussed topics like “do-not-resuscitate” orders when new residents arrived. Challenges included insufficient ACP training for staff and administrators and some reluctance from residents and families to discuss ACP. Most communities lacked a systematic, structured ACP approach.

Assisted Living Administrators’ Approaches to Advance Care Planning

by Lea Efird-Green

WHAT THIS MEANS FOR YOU: Interviews with 27 AL administrators revealed different approaches to advanced care planning (ACP). They all acknowledged the importance of ACP and often discussed topics like “do-not-resuscitate” orders when new residents arrived. Challenges included insufficient ACP training for staff and administrators and some reluctance from residents and families to discuss ACP. Most communities lacked a systematic, structured ACP approach.