Aging, Disability, and Long-Term Care

Projects

Current Projects

• Older Adults and Drug Decisions: Collaboration and Outcomes – This project is studying the outcomes of an intervention designed to prompt physicians, at the time of a clinic visit, to address adults’ (60 years of age or older) priorities regarding arthritis and its therapy using a longitudinal quasi-experimental design with a study and control group.

  Principal Investigator: Betsy L. Sleath, Ph.D.

  Funding Source: National Institute on Aging, NIH (subcontract with University of Wisconsin)

  Total Project Period: 09/15/02 – 08/31/07 (extended)
  
  

• Improving Medical Care of Assisted Living Residents with Dementia – The overall goal of this project is to increase adherence to evidence-based disease guidelines for Alzheimer’s Disease and related dementia care by: 1) improving diagnosis, assessment, and staging of dementia; 2) reducing problems with medication use (including underprescribing of effective medications and use of potentially inappropriate medications); and 3) improving the assessment, detection and treatment of critical elements of dementia quality of life (behavioral symptoms, pain, depression, and mobility problems). The study is utilizing the resources of an existing cohort of 293 assisted living ( AL) facilities and 40 nursing homes where Sheps Center researchers have conducted numerous studies over the past six years that document the need for improved medical services.

  Principal Investigator: Philip D. Sloane, M.D., M.P.H.

  Funding Source: Alzheimer’s Association

  Total Project Period: 03/05 – 02/10

  
  

• Evaluating the Alzheimer’s Association’s Training Program for Direct Care Staff – Based in part on the work of a previously funded Sheps Center project, the Alzheimer’s Association embarked on a campaign to improve the quality of care and quality of lives for people with Alzheimer’s disease and dementia in residential care/assisted living (RC/AL) facilities and nursing homes (NHs). Practice recommendations for direct care staff related to care for food and fluid intake, pain management, and activity involvement, have been developed based on research as well as input from Association chapters, industry and care experts. Chapter affiliates of the Alzheimer’s Association were trained to provide classroom instruction on these practices to care staff in RC/AL facilities and NHs in the summer, 2005. This project is a collaborative effort to evaluate: 1) the training provided by the affiliate to the direct care staff and supervisors; 2) the extent to which the practice recommendations are being implemented; and 3) the characteristics related to training outcomes in North Carolina, South Carolina, and Virginia.  The supplement allows Kentucky to be included in the evaluation.

  Principal Investigator: Sheryl Zimmerman, Ph.D.

  Funding Source: Alzheimer’s Association

  Total Project Period: 11/05 – 10/08

  Supplemental Funding Source:  Commonwealth of Kentucky

  Total Project Period: 05/07 - 06/08
  
  

• A National Assisted Living Community-based Participatory Research Partnership – The goal of this project is to develop a practice/policy-research partnership, through which new knowledge can be generated and existing knowledge translated, to truly improve the quality of care and quality of life in assisted living. Members of the Center for Excellence in Assisted Living (CEAL) and the Collaborative Studies of Long-Term Care (CS–LTC) will establish a partnership with an organizational structure and established modes of communication, to work together toward two aims: 1) the development of a sustainable model of national community-based participatory research (CBPR) in assisted living and 2) the collection of pilot data for and development of a research project related to medication management in assisted living. The project will develop a partnership focused on improving the quality of assisted living, and also serve as a beta test of this model.

  Principal Investigator: Sheryl Zimmerman, Ph.D.

  Funding Source: Agency for Healthcare Research and Quality

  Total Project Period: 09/06 – 08/08
  
  

• Implementing a Program to Prevent Injurious Falls in Assisted Living – Using a model of quality improvement and adapting evidence-based interventions that have been used in nursing home and community settings, a multi-component intervention of medication review, assessment, environmental modification, and exercise will be developed to reduce risk factors for falls and fall and fracture rates among residents of assisted living facilities. Two pairs of matched assisted living facilities will be randomly selected; one of each will receive the multi-component intervention program and the other an educational intervention. Over the course of one year of implementation they will be evaluated to determine: 1) the degree to which the facility changes its practices in accordance with the multi-component intervention; the degree to which residents accept and adhere to the intervention; and facility- and resident-level facilitators for and obstacles to implementation and maintenance of the intervention; 2) the change in resident risk factors, and in facility fall and fracture rates; and 3) the relationship of implementation and adherence to change in risk factors and fall and fracture rates. [This is the first project funded at UNC funded under the Accelerating Change and Transforming Organizations and Networks (ACTION) Task Order Agreement to RTI from AHRQ.]

  Principal Investigator: Sheryl Zimmerman, Ph.D.

  Funding Source: Agency for Healthcare Research and Quality (subcontract with the Research Triangle Institute)

  Total Project Period: 09/15/06 – 09/14/08
  
  

• A Family Staff Partnership to Improve Long-Term Care Quality – Virtually all practitioners, policy-makers, researchers and the general public recognize a need to improve the quality of care in nursing homes and other residential long-term care settings. In large part, quality concerns exist because there is an insufficient and inconsistent workforce to care for long-term care residents. Fortunately, there is a likely remedy to worker burden, already in place and waiting to be mobilized: residents’ families. Therefore, the aim of this project is to conduct a six-month randomized clinical trial of a family-staff partnership program in 24 nursing homes and residential care/assisted living facilities. Families (N = 960) will be involved in resident-focused activities and relations between family and staff (544 nursing assistants and personal care aides) will be facilitated. Results have implications for the workforce crisis in long-term care, and can benefit all individuals who live in, work in, and care about those living and working in, nursing homes and residential care/assisted living facilities.

  Principal Investigator: Sheryl Zimmerman, Ph.D.

  Funding Source: Agency for Healthcare Research and Quality

  Total Project Period: 09/15/06 – 06/30/09
  
  

• Improving Decision-Making About Feeding Options for Dementia Patients – This study is a cluster randomized controlled trial of a previously piloted decision aid to improve decisions about feeding options for patients with advanced dementia. It aims to test: 1) whether a decision aid on feeding options in dementia effectively informs surrogate decision-makers in the intervention group; 2) whether the decision aid improves 1 and 3 month decision-making outcomes for surrogate decision-makers in the intervention group; and 3) the impact of the decision aid on 1 and 3 month clinical treatment decisions.

  Principal Investigator: Laura C. Hanson, M.D., M.P.H.

  Primary Funding Source: National Institute on Aging, NIH

  Total Project Period: 9/28/06 – 6/30/10
  
  

• Primary Care-Practice Based Research Network (PBRN) – This is a master task order contract that brings together five North Carolina-based PBRNs, three based at UNC-CH, one based at Duke University, and one based at Carolinas HealthCare System. Although no core funds are allocated, it places UNC on a “short list” for contract work from AHRQ over the next 3-5 years, and multiple research projects will result.

  Principal Investigator: Philip D. Sloane, M.D., M.P.H.

  Funding Source: Agency for HealthCare Policy and Research (AHRQ)

  Total Project Period: 01/29/07 – 01/28/10
  
  

• Employment of Adults with Disabilities – . This study will provide assistance to the North Carolina Medicaid Infrastructure Grant-2 (MIG2), through on-going collaboration with consumer, employer and state agency stakeholders; collection of primary data on working adults with emotional, cognitive and physical limitations and their employers; and analysis of primary and secondary data to meet the informational needs of MIG2. The goal is to assist the MIG2 effort to develop a comprehensive and lasting employment infrastructure in North Carolina that coordinates disparate state service delivery systems in order to maximize employment for people with disabilities, increase the state's labor force through the inclusion of people with disabilities, and protect and enhance workers' healthcare, other benefits, and needed employment supports.

  Principal Investigator: Kathleen C. Thomas, M.P.H., Ph.D.

  Funding Source: North Carolina Division of Vocational Rehabilitation

  Total Project Period: 07/07 – 06/08
  
  

• Measuring the Quality of Dying in Residential Long-term Care – Long-term care (LTC) settings have become a significant site for end-of-life (EOL) care. Although, the information available on EOL in LTC has been growing, one important omission in the research is lack of definitive outcome measures to assess the quality of dying in LTC. This project will evaluate six quality of dying measures that have been used in—but not necessarily developed for—LTC populations, one developed by this research team for an earlier study. They will be administered to family caregivers in 300 nursing homes and decedents in 150 residential care/assisted living facilities, to determine: 1) the domains of study, convergent validity, internal consistency reliability, ease of use, and perceived relevance of each; 2) what combination of items from the measures results in a composite instrument with the best psychometric properties overall, and in different settings; and 3) whether the measure can separate quality of care from quality of dying. Thus, the project will develop one or two comprehensive, yet parsimonious, valid and reliable measures to assess the quality of dying and the quality of EOL care in LTC. A similar study planned for the Netherlands will permit examination of the culturally-bound components of care and outcomes, which will be useful for international comparisons to improve EOL care in LTC.

  Principal Investigator: Sheryl Zimmerman, Ph.D.

  Funding Source: National Palliative Care Research Center

  Total Project Period: 07/07 – 06/09
  
  

• Improving the Integration of Evidenced-Based Clinical and Community Services to Support Healthy Behaviors – This is a randomized trial within a primary care practice-based research network (PBRN) evaluating two different interventions compared to usual practice to improve linkages with community resources addressing tobacco use, unhealthy diets, and physical inactivity. The first intervention uses an evidence-based quality improvement learning collaborative and the second uses a more informal practice strategy in which practices will receive written material (brochures, fax referral forms, and “information” prescription pads) to facilitate referral to community resources that address the selected unhealthy behaviors. Quantitative and qualitative analyses will be used to understand the impact of the interventions at the practice, provider, patient, and community resource level. The main outcome measure is the probability that a patient with an unhealthy behavior is referred to a community resource. [This is the first Primary Care-Practice Based Research Network (PBRN) project.]

  Principal Investigator: Philip D. Sloane, M.D., M.P.H.

  Funding Source: Agency for HealthCare Policy and Research (AHRQ)

  Total Project Period: 07/07 – 12/08
  
  

• Understanding the Direct and Indirect Costs of Quality Measurement Data Collection and Reporting in Primary Care Practice –. The purpose of this study is to estimate both direct and indirect costs incurred by primary care practices related to being required to collect and report quality performance measurement data. A diverse sample of eight practices will participate in the study. Direct and indirect costs of the following scenarios will be estimated: 1) total costs absorbed by practices who are reporting 1-2 measures; 2) costs involved with reporting a small group of measures (2-8 measures); and 3) costs of reporting 2-8 (or more) measures to several different stakeholders. Cost estimates will be generated for practices that use Health Information Technologies (HIT, e.g. electronic health records, registries) and for those that do not. In addition, the project seeks to determine: 1) what factors influence primary care practices to collect and report quality measures; 2) the actual strategies used by practices to implement and maintain reporting, and to improve the cost-efficiency of this reporting; and 3) the justification of these costs. [This is the second Primary Care-Practice Based Research Network (PBRN) project.]

  Principal Investigator: Philip D. Sloane, M.D., M.P.H.

  Funding Source: Agency for HealthCare Policy and Research (AHRQ)

  Total Project Period: 09/07 – 10/08
  
  

• Physician Care in Assisted Living ( AL) Facilities – Currently, there is no systematic information regarding physician care to AL facility residents, and how it is coordinated with AL services. Obtaining this information is the first step to improving the quality of medical care for millions of our nation’s elderly. Therefore, the aims of this project are to: 1) describe the care that 240 physicians provide to 480 AL facility residents in 120 stratified AL facilities across four states, as well as the physician and practice characteristics and perspectives related to this care; 2) describe the 120 AL facility managers’ (or healthcare liaisons’) reports of the care physicians provide to AL facility residents, as well as the medical support services provided by the AL facility and his/her own perspectives regarding this medical care; 3) examine how physician and practice characteristics are associated with the care they provide to AL facility residents; and 4) examine how AL facility characteristics are associated with the care physicians provide to AL facility residents. Findings will have great promise to clarify the current role and future promise of physician services in AL.

  Principal Investigator: Sheryl Zimmerman, Ph.D.

  Funding Source: National Institute on Aging, NIH (subcontract with University of Maryland Baltimore County)

  Total Project Period: 07/07 – 12/09
  
  

• Stigma in the Cultural Context of Residential Settings for the Elderly – Different forms of community housing and residential long-term care now exist for older adults, including active adult communities, assisted living facilities, nursing homes, and continuing care retirement communities. These settings differ in at least two important ways: 1) they do not similarly intend to address the health and psychosocial needs of the residents who live there and 2) they are not similarly acceptable to prospective clientele. Anecdotal data indicate that the more services a setting offers, the more its residents are stigmatized. Unfortunately, this stigma may act to delay an individual's willingness to seek and accept necessary services. Therefore, the aims of this project are to determine: 1) how older adults define stigmatizing traits in themselves and others in their everyday routines; 2) how older adults act and react to stigmatizing traits in themselves and others in their everyday routines; 3) how stigmatizing interpersonal and inter-group traits influence social dynamics and personal behaviors (such as masking, hiding, enabling) to avoid stigma; 4) how stigma is defined or operates differently in various levels of care and environmental configurations (such as those with single vs. graded levels of care in one campus); and 5) how the quality of settings and care might be improved with attention to the personal and social dynamics of stigma.

  Principal Investigator: Sheryl Zimmerman, Ph.D.

  Funding Source: National Institute on Aging, NIH (subcontract with University of Maryland Baltimore County)

  Total Project Period: 07/07 – 06/12

 Recently Completed Projects

• End-of-Life Care in Residential Care and Nursing Homes – Data to describe, compare, and evaluate the structure (the facility’s capacity to provide care and the care setting) and the process (manner in which the care is delivered and the application of care) are being collected from 193 residential care/assisted living facilities and 40 nursing homes participating in NIA’s Collaborative Studies of Long-Term Care. In addition, data are being collected on a stratified sample of 450 of the residents who die or are transferred up to three days before their death to describe: 1) the characteristics of the residents who die (i.e., age, cognitive and comorbid status, cause and site of death), 2) the care provided to these residents at the end-of-life (primary provider continuity, advance care planning, administration of pain medication), and 3) select outcomes of the end-of-life care (resident discomfort and quality of life, family and staff satisfaction with care). Analyses will also determine the relationship between structure and process measures and the outcome measures.

  Principal Investigator: Sheryl Zimmerman, Ph.D.

  Funding Source: The National Institute on Aging, NIH

  Total Project Period: 06/01 – 05/07 (extended)
  
  

• High Intensity Light Therapy in Alzheimer’s Disease – A clinical trial with crossover to test the effect of high intensity, low glare, ambient daytime light (HILGADL) on sleep/wake patterns, depressive symptoms, and agitation in nursing home residents with Alzheimer’s disease. Four treatments are being tested: 1) morning HILGADL, 2) evening HILGADL, 3) full day HILGADL, and 4) control group with pre-existing lighting. Sleep/activity is being measured using wrist motion sensors, depressive symptoms using the Cornell Depressive Index and the Philadelphia Geriatric Center Affect Rating Scale, and agitation by using computer-assisted direct observations and the Cohen-Mansfield Agitation Inventory. Light exposure is being documented using wrist photocells. The original site for the study was in North Carolina and in 2003 supplemental funds were obtained to add a second site in Oregon.

  Principal Investigator: Philip D. Sloane, M.D., M.P.H.

  Funding Source: National Center for Complimentary and Alternative Medicine, NIH

  Total Project Period: 09/25/01 – 12/31/06 (extended)
  
  

• Spiritual Care at the End of Life – This project provides the first systematic overview of spiritual care from a multidisciplinary, health services perspective, and the results of this research will lay a firm foundation for future interventions to increase access and improve the quality of spiritual caregiving at the end of life. The primary aim of this project is to describe the structure, process, and outcome of spiritual care provided to dying patients and their families. Secondary aims include the description of individual and structural factors, which facilitate or impede the delivery of spiritual care by health care providers, and the exploration of the personal values and spiritual traditions that empower health care providers to deliver spiritual care in diverse populations.

  Principal Investigator: Timothy P. Daaleman, D.O.

  Funding Source: John E. Fetzer Institute

  Total Project Period: 04/04 – 03/07 (extended)
  
  

• Evaluation of the Development of the Ticket to Work Program – The Ticket to Work Program is funded by a Medicaid Infrastructure Grant (MIG) to increase work incentives and remove disincentives to work for adults with disabilities. The evaluation has three components. First, an analysis of linked Medicaid eligibility and claims files is being conducted to generate estimates of the cost of extending Personal Assistance Services (PAS). Second, an analysis of linked Medicaid eligibility and claims files is being conducted to generate internal and preliminary estimates of the cost of a Medicaid Buy-In (MBI) for working adults with disabilities. Third, the study team is assisting the Division of Vocational Rehabilitation ( DVR) in the development of a plan for monitoring and evaluating North Carolina efforts to increase participation in SSI work incentives. This set of analyses should serve as important tools for the DVR and the Department of Medical Assistance to develop policies that increase work incentives and remove disincentives to work for adults with disabilities.

  Principal Investigator: Kathleen C. Thomas, M.P.H., Ph.D.

  Funding Source: North Carolina Division of Vocational Rehabilitation

  Total Project Period: 06/04 – 06/07
  
  

• A Primary Health Care Management Support Package for People With Developmental Disabilities – This project is conducting and evaluating a two-year demonstration project in four counties (Duplin, Sampson, Lenoir, and Pitt) in eastern North Carolina to assess its impact on the access to primary care for persons with developmental disabilities. The demonstration project provides a “care management support package” to local primary care providers intended to increase their ability and willingness to provide services to persons with developmental disabilities. During the third year, the knowledge gained during the demonstration period will be transferred to other communities in NC through training, technical assistance, and consultation.

  Principal Investigator: Kathryn Moss, Ph.D.

  Funding Source: North Carolina Council on Developmental Disabilities

  Total Project Period: 07/04 – 06/07
  
  

• Quality of Life (QOL) of Older Long-Term Lymphoma Survivors – While a large body of data exists regarding the short-term QOL following cancer diagnosis and treatment, little is known about the needs of long-term survivors of adult cancer who are more than three years post-diagnosis; specifically, it is not known whether the impact on QOL that is experienced shortly after diagnosis and treatment persists throughout the life course. This project addresses this gap in the literature by proposing a quality of life (QOL) assessment of long-term survivors. The specific aims are to: 1) identify and evaluate the unmet needs of 400 long-term survivors of adult non-Hodgkin’s lymphoma (NHL) (aged 25-90+ years) as evidenced through reported QOL with particular emphasis on psychological distress [as defined by post-traumatic stress disorder (PTSD)] and 2) examine the risk and protective factors associated with QOL and PTSD in adult survivors, with a focus on those that can be used for easy screening (e.g., having had multiple types of treatment) and are potentially modifiable (e.g., social support). These aims are consistent with the recent “Cancer Survivorship Research and Quality of Life Act of 2002,” federal legislation introduced by the Lance Armstrong Foundation and a bipartisan Congressional group to expand research and quality of life programs for cancer survivors.

  Principal Investigator: Sophia K. Smith, Doctoral Student

  Funding Source: Small Grants Program for Behavioral Research in Cancer Control

  Total Project Period: 09/04 – 08/06
  
  

• Preventative Oral Health and Adults With Developmental Disabilities – This project is adding a preventive oral hygiene component to the primary health care project described earlier in this section. Personnel from the Sheps Center and the Department of Dental Ecology are training five dental hygienists from the North Carolina Oral Health Section of the State Department of Health and Human Services in issues unique to working with adults with developmental disabilities. These dental hygienists will train, free of charge except for expenses, local non-medical case managers, nurse care managers, residential care workers, and family members in how to work together with adults with developmental disabilities to help them develop good oral health practices. In addition, written training and technical assistance materials will be developed to promote and improve oral hygiene for adults with developmental disabilities. These materials will be shared with other North Carolina communities via a project website, managed by the North Carolina Council of Community MH/DD/SAS Programs.

  Principal Investigator: Kathryn Moss, Ph.D.

  Funding Source: Duke Endowment

  Total Project Period: 01/06 – 12/07