Principal Investigator: Molly M. Perkins (Emory University)
Co-Investigators: Mary M. Ball, Alexis A. Bender, Tammie E. Quest, Ann E. Vandenberg (Emory University), Candace L. Kemp (Georgia State University), and Patrick J. Doyle (Brightview Senior Living and John Hopkins School of Nursing Center for Innovative Care in Aging)
Funding Agency: National Institute on Aging (NIH/NIA) (5R01AG47408)
Study Dates: 05/15/2015 – 4/30/2020
Value: $1,854,273
Study Contact: Molly M. Perkins ([email protected]; telephone: 404-728-6570)

Assisted living is increasingly becoming a site of end-of-life care, yet an in-depth understanding of end-of-life care in assisted living is lacking. Such knowledge is essential to identifying best practices aimed at positively influencing quality of life and overall well-being of assisted living residents and their caregivers as residents become older and frailer and experience increasing comorbidity. Researchers and policy-makers are calling for a broader definition of end of life that encompasses different end of life transitions, including dying as a phase of advanced chronic illness that may extend for years, as well as dying at the end of old age. In order to provide adequate support services and timely palliative care, it is important to acknowledge and identify these varying and often ambiguous end of life trajectories.

The overall goal of this five-year study was to address critical knowledge gaps and identify best practices for end-of-life care in assisted living. The specific aims were:

1. Understand how end of life is defined and experienced by assisted living residents and their informal and formal caregivers;
2. (2) Investigate the structure and process of formal and informal end-of-life care in assisted living and understand the interface between these care components and how they shape outcomes;
3. (3) Identify the contexts and conditions within which structures and processes of end-of-life care are shaped and understand the combined impact these aspects of care have on stakeholders’ overall end-of-life experience.

Thus far, 265 participants, including 102 residents and 163 AL staff, external care workers, and family members across 7 diverse assisted living facilities in metropolitan Atlanta have participated in this project. Residents were selected based on being 85 years or older, having multiple chronic conditions, being diagnosed with a life-limiting illness and/or use of hospice and were followed for up to 24 months or until death or transfer to another setting. This qualitatively-driven study used grounded theory methods and was guided by a strengths-based social determinants of health approach and a relational model based on more than two decades of our previous work in assisted living. Data collection included participant observation and in-depth interviews, social network mapping, resident record review, and health assessments conducted over time (e.g., measures of cognition, grip strength, quality of life, depression, and fatigue). Knowledge from this study is helping guide policy and inform best practices for palliative care and end-of-life care in assisted living and other long-term care settings.

Study findings continue to be disseminated in a variety of ways, including recommendations, a study report, and academic publications, including:

Bender, A. A., Halpin, S. N., Kemp, C. L., & Perkins, M. M. (2019). Barriers and Facilitators to Exercise Participation Among Frail Older African American Assisted Living Residents. Journal of Applied Gerontology. https://doi.org/10.1177/0733464819893923

Vandenberg, A. E., Ball, M. M., Kemp, C. L., Doyle, P. J., Fritz, M., Halpin, S., . . . Perkins, M. M. (2018). Contours of “here”: Phenomenology of space for assisted living residents approaching end of life. Journal of Aging Studies, 47, 72-83. doi:https://doi.org/10.1016/j.jaging.2018.03.001