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Alzheimer’s disease remains a pressing public health concern, ranking as the fifth leading cause of death among individuals aged 65 and older in 2021. For the growing population of older adults living with dementia, achieving quality of life at the end of life hinges on adopting a palliative care approach. This approach prioritizes minimizing distressing symptoms, including pain, depression, falls, and aspiration. Despite the critical importance of symptom management, research highlights significant gaps in nursing home care where many people spend their final days. Under-recognition and undertreatment of distressing symptoms, such as pain and depression, are more common among nursing home residents with dementia and among racially minoritized residents, underscoring a pressing need to address disparities in care.
While the issue of disparities in symptom management is well-documented, few studies have explored the perspectives of those directly affected—the residents, their families, and the staff who provide their care. There is also limited research about how issues of racism and dementia-related communication challenges may compound with each other and other factors to contribute to disparities in nursing home care. These gaps in the literature motivated my dissertation research, which aimed to shed light on nursing home community members’ views of these disparities and identify actionable factors that contribute to inequities in nursing home settings.
The Project
With generous support from the Rita and Alex Hillman Foundation through a small grant program, I embarked on a qualitative research project to explore factors related to disparities in symptom management among nursing home residents. The grant funding was instrumental in supporting participant incentives, interview transcription, and the involvement of a research assistant as a second qualitative coder.
The study included interviews with 48 participants representing five distinct roles within racially diverse nursing homes in rural North Carolina:
- Residents (8)
- Family members (8)
- Staff (18)
- Leadership (9)
- Quality representatives (5)
These nursing home communities were intentionally selected based on their racial diversity, with 60% or fewer white residents, as racial segregation of nursing homes is also connected to disparities in care. I sought to understand how residents experience symptoms and symptom management near the end of life, with a specific focus on factors that may lead to differences. The two primary research questions for my dissertation analysis were:
- How do participants observe differences in symptom experiences?
- What explanations do participants offer for these differences, and at what level (individual, provider, encounter, or organizational)?
Guided by Kilbourne et al.’s (2006) multilevel framework, the interviews and subsequent qualitative analysis uncovered a range of factors influencing disparities in symptom management. We created a modified framework including the factors that participants discussed (see figure). These findings offer critical insights into the lived experiences of NH residents and the systemic
Future Plans
Building on this foundation, I have identified several avenues for further analysis of the rich dataset generated through this project. The modified multi-level framework and findings from my dissertation have also sparked ideas for future projects, such as:
- Exploring the role of family involvement in symptom management disparities.
- Investigating system and policy factors such as Medicaid reimbursement and staffing ratio rules that influence disparities.
- Examining provider-level barriers and facilitators to equitable care delivery.
- Developing cultural humility interventions to help organizations mitigate internal factors leading to disparities.
By deepening our understanding of the multilevel factors at play, these efforts aim to drive meaningful changes in long-term care settings.
Impact
The overarching goal of this research was to amplify the voices of those living and working in nursing homes, providing a nuanced understanding of disparities in symptom management. By identifying multilevel factors—spanning individual, provider, encounter, and organizational/ system levels—this work lays the groundwork for future interventions and policy changes aimed at achieving health equity in long-term care settings.
Ultimately, the findings from this project contribute to a growing body of evidence that underscores the need for systemic reforms. By highlighting actionable pathways to reduce disparities, this research seeks to enhance the quality of life for nursing home residents with dementia and ensure that care is equitable and person-centered at the end of life.
Multi-level framework related to disparities in symptom management for nursing home residents. Adapted from Kilbourne et al. (2006).