One million older and dependent adults in the United States live and receive care in assisted living (AL), those settings licensed by states to provide at least two meals a day, scheduled and unscheduled supportive care, and 24-hour oversight. Over the last twenty years, the number of AL beds increased 97% (to almost 1.2 million beds), while the number of nursing home beds grew by only 7% (to 1.7 million beds), a process that was largely fueled by the perception that moving to a nursing home is a """"""""dreaded event"""""""". Thus, AL mushroomed as an intended solution to the institutional nature of nursing home care, and its numbers continue to rise. AL has differed from nursing home care by incorporating homelike features such as private rooms, carpeting, kitchenettes, and meals served on table linens as opposed to on trays. However at the same time, most AL settings adopted the hierarchical, task-oriented operational culture and workforce practices of nursing homes. Consequently, as AL settings have grown, so too have concerns that their care is impersonal and custodial and fails to promote the optimal well-being that was promised. Further, reports have become commonplace of matters such as improper care, neglect, and forced transfer. As a result, hopes that AL would be a landmark improvement in long-term care for our nation's older adults have given way to concerns about quality. Assisted living began as an alternative to nursing homes that would be person-centered. Unfortunately, as the industry has grown, and as calls for stricter regulation have become more strident, the lack of valid, reliable, well-accepted measures of person-centered care is driving regulators to adopt the traditional, medical-model- focused quality measures used in nursing homes. We now are at a tipping point in AL care, wherein it is timely and urgent to develop and promote measures that can foster the promising alternative that was initially envisioned by AL developers. The goal of this research project is to address this urgent need by developing a toolkit of valid and reliable measures of person-centered care and outcomes for use by AL administrators, staff, residents, their families, and others to improve care and outcomes. The project will use a community-based participatory research approach to achieve the following aims: (1) determine the structures, processes, and outcomes of person-centered care, both conceptually and operationally;(2) conduct cognitive testing of the items with AL administrators, staff, residents, and their families, and modify the items as indicated;and (3) test the toolkit of revised items to determine feasibility, conduct exploratory factor analysis, assess reliability and validity, obtain estimates, and determine agreement among stakeholders.

Public Health Relevance

This project will develop measures to provide information that assisted living (AL) administrators can use to change their care practices so they are more """"""""person centered"""""""" -- respectful and responsive to individual's preferences, needs and values -- and to ensure that the an individual's values guide care.

Agency
National Institute of Health (NIH)
Institute
National Institute on Aging (NIA)
Type
Exploratory/Developmental Grants (R21)
Project #
1R21AG038808-01A1
Application #
8113714
Study Section
Health Services Organization and Delivery Study Section (HSOD)
Program Officer
Baker, Colin S
Project Start
2011-09-01
Project End
2013-08-31
Budget Start
2011-09-01
Budget End
2012-08-31
Support Year
1
Fiscal Year
2011
Total Cost
$232,511
Indirect Cost
Name
University of North Carolina Chapel Hill
Department
Type
Schools of Social Work
DUNS #
608195277
City
Chapel Hill
State
NC
Country
United States
Zip Code
27599
Zimmerman, Sheryl; Allen, Josh; Cohen, Lauren W et al. (2015) A measure of person-centered practices in assisted living: the PC-PAL. J Am Med Dir Assoc 16:132-7
Zimmerman, Sheryl; Love, Karen; Cohen, Lauren W et al. (2014) Person-Centeredness in Home- and Community-Based Services and Supports: Domains, Attributes, and Assisted Living Indicators. Clin Gerontol 37:429-445