Applying person-centered research ethics in the design of dementia-specific measures.

There is an emerging call for new strengths-based measures to guide research, care, and support for persons living with Alzheimer's disease and related dementias. Person-centered interventions have demonstrated a positive impact in global quality of life, but many promising approaches lack strengths-based measures with sufficient sensitivity to document relevant outcomes. Human centered design is an innovative method for person-centered instrument development. This paper describes a research process using Human Centered Design and highlights ethical principles considered during the translation of the design process to experiential world of Alzheimer's disease and related dementia. Including persons living with dementia and care partners as members of the design team offers new insights, while requiring focused attention on inclusivity, transparency, and person-centered ethics.

Cost-Benefit Analysis of the COPE Program for Persons Living With Dementia: Toward a Payment Model.

BACKGROUND AND OBJECTIVES: There is a critical need for effective interventions to support quality of life for persons living with dementia and their caregivers. Growing evidence supports nonpharmacologic programs that provide care management, disease education, skills training, and support. This cost-benefit analysis examined whether the Care of Persons with Dementia in their Environments (COPE) program achieves cost savings when incorporated into Connecticut's home- and community-based services (HCBS), which are state- and Medicaid-funded. RESEARCH DESIGN AND METHODS: Findings are based on a pragmatic trial where persons living with dementia and their caregiver dyads were randomly assigned to COPE with HCBS, or HCBS alone. Cost measures included those relevant to HCBS decision makers: intervention delivery, health care utilization, caregiver time, formal care, and social services. Data sources included care management records and caregiver report. RESULTS: Per-dyad mean cost savings at 12 months were $2 354 for those who received COPE with a mean difference-in-difference of -$6 667 versus HCBS alone (95% CI: -$15 473, $2 734; not statistically significant). COPE costs would consume 5.6%-11.3% of Connecticut's HCBS annual spending limit, and HCBS cost-sharing requirements align with participants' willingness to pay for COPE. DISCUSSION AND IMPLICATIONS: COPE represents a potentially cost-saving dementia care service that could be financed through existing Connecticut HCBS. HCBS programs represent an important, sustainable payment model for delivering nonpharmacological dementia interventions such as COPE.

Person-centered assessment of people living with dementia: Review of existing measures.

INTRODUCTION: Person-centered care and assessment calls for measurement tools that help researchers and providers understand people with dementia, their social relationships, and their experience of the care environment. This paper reviewed available measures and evaluated their psychometric properties. METHODS: Literature searches of major databases (PsycInfo, PubMed, EBSCO, CINAHL) for papers examining person-centered constructs in samples of people living with dementia or mild cognitive impairment. Reliability and validity coefficients were reviewed and reported. RESULTS: We identified 26 unique measures that had been tested in samples of people living with dementia. Twelve measures of hope, well-being, engagement, social relationships, meaning, resilience, stigma, spiritual beliefs and practices, values and preferences, and positive psychology constructs had strong psychometric properties in samples with dementia. DISCUSSION: A variety of reliability and valid measures were identified for use in person-centered care and research with people living with dementia. Additional measure development is needed for key person-centered concepts including dignity and strengths.

Effectiveness of the Care of Persons With Dementia in Their Environments Intervention When Embedded in a Publicly Funded Home- and Community-Based Service Program.

BACKGROUND AND OBJECTIVES: In the absence of effective pharmacotherapy, there is an urgent need to test evidence-based dementia care interventions using pragmatic trial approaches. We present results from a study in which an evidence-based, nonpharmacologic intervention for persons living with Alzheimer's disease and related dementia (ADRD) and their informal caregivers, Care of Persons with Dementia in their Environments (COPE), was tested in a Medicaid and state revenue-funded home and community-based service (HCBS) program. RESEARCH DESIGN AND METHODS: Using pragmatic trial design strategies, persons living with ADRD and their caregivers were randomly assigned as dyads to receive COPE plus usual HCBS (COPE; n = 145 dyads) or usual HCBS only (Usual Care or UC; n = 146 dyads). Outcomes were measured prerandomization, and 4 and 12 months postrandomization. Outcomes for persons living with ADRD included functional independence, activity engagement, self-reported quality of life, and behavioral and psychological symptoms. Caregiver outcomes included perceived well-being, confidence using dementia management strategies, and degree of distress caused by behavioral and psychological symptoms. RESULTS: After 4 months, caregivers receiving COPE reported greater perceived well-being (least squares mean = 3.2; 95% CI: 3.1-3.3) than caregivers receiving UC (3.0; 2.9-3.0; p < .001), and persons living with ADRD receiving COPE, compared to those receiving UC, showed a strong trend toward experiencing less frequent and less severe behavioral and psychological symptoms (9.7; 5.2-14.2 vs 12.7; 8.3-17.1; p = .07). After 12 months, persons living with ADRD receiving COPE were more engaged in meaningful activities (2.1; 2.0-2.1 vs 1.9; 1.9-2.0; p = .02) than those receiving UC. DISCUSSION AND IMPLICATIONS: Embedding COPE in a publicly funded HCBS program yielded positive immediate effects on caregivers' well-being, marginal positive immediate effects on behavioral and psychological symptoms, and long-term effects on meaningful activity engagement among persons living with ADRD. Findings suggest that COPE can be effectively integrated into this service system, an important step towards widespread adoption. CLINICAL TRIALS REGISTRATION NUMBER: NCT02365051.

Person-Centered Care Plans for Nursing Home Residents With Behavioral and Psychological Symptoms of Dementia.

Little literature exists examining the development and implementation of person-centered care (PCC) plans focused on behavioral and psychological symptoms of dementia (BPSD). The current study aimed to describe BPSD documented in nursing home (NH) residents' care plans, the types of approaches staff document in addressing those symptoms, and whether resident and/or facility characteristics are associated with documentation of PCC approaches. The sample included 553 residents from 55 NHs in two East Coast states. Resistiveness to care (44.9%), agitation (42.2%), and aggression (42%) were most frequently documented in care plans. PCC approaches were documented in care plans in 21.3% to 62.7% of cases depending on BPSD type. Resident (e.g., younger age, lower functional ability, lower cognitive ability, longer length of stay, male gender) and facility (e.g., less certified nursing assistant staffing hours, greater percentage of residents taking antipsychotic medications, non-profit status) characteristics were associated with increased odds of PCC approaches being documented. Optimal PCC planning is discussed, and a sample PCC plan is provided. [Journal of Gerontological Nursing, 46(11), 17-27.].

Evaluation of a Hospital: Community Partnership to Reduce 30-Day Readmissions.

PURPOSE: To evaluate the ComPass program by (1) effectiveness in reducing 30-day hospital readmissions, (2) reach of program into target population, and (3) implementation of key program elements. PRIMARY PRACTICE SETTING: An academic hospital in New England (John Dempsey Hospital). METHODOLOGY AND SAMPLE: Retrospective analysis of Medicare fee-for-service (FFS) beneficiaries hospitalized at John Dempsey Hospital between May 1, 2012, and November 30, 2014. RESULTS: The program reached 34% of eligible Medicare FFS beneficiaries (n = 832; 61% female, mean age = 79 years). The unadjusted 30-day all-cause readmission rate decreased from 21% to 16.2% (p = .03). Implementation was high for postdischarge phone calls (89%) but low for home visits (34%). The mean change in patient activation scores following completion of the program was 0.15 (SD = 4.79), with no change in patient activation level, χ (6) = 3.82, p = .70. IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: The ComPass program was consistent with the philosophy and standards of case management practice. Case managers will want to utilize an evidence-based instrument with real-time information to identify patients at risk for 30-day readmission. A physical presence of ComPass coaches within the hospital enabled a strong hospital-community-based organization (CBO) partnership, facilitating the coordination, communication, and collaboration. Case managers will want to advocate for policy incentivizing hospital-CBO partnerships. Patient activation is essential; case managers may benefit from training in motivational interviewing to improve patient activation and outcomes. Additional research is needed to further elucidate and mitigate barriers to posttransition home visits and patient activation.

Person-Centered Assessment and Care Planning.

The quality of dementia care rendered to individuals and families is contingent upon the quality of assessment and care planning, and the degree to which those processes are person-centered. This paper provides recommendations for assessment and care planning derived from a review of the research literature. These guidelines build upon previous recommendations published by the Alzheimer's Association, and apply to all settings, types, and stages of dementia. The target audience for these guidelines includes professionals, paraprofessionals, and direct care workers, depending on their scope of practice and training.

Trends in Contemporary Holistic Nursing Research: 2010-2015.

PURPOSE: The purpose of this study was to describe and summarize the characteristics of contemporary holistic nursing research (HNR) published nationally. DESIGN: A descriptive research design was used for this study. METHOD: Data for this study came from a consecutive sample of 579 studies published in six journals determined as most consistent with the scope of holistic nursing from 2010 to 2015. The Johns Hopkins level of evidence was used to identify evidence generated, and two criteria-power analysis for quantitative research and trustworthiness for qualitative research-were used to describe overall quality of HNR. FINDINGS: Of the studies, 275 were considered HNR and included in the analysis. Caring, energy therapies, knowledge and attitudes, and spirituality were the most common foci, and caring/healing, symptom management, quality of life, and depression were the outcomes most often examined. Of the studies, 56% were quantitative, 39% qualitative, and 5% mixed-methods designs. Only 32% of studies were funded. Level III evidence (nonexperimental, qualitative) was the most common level of evidence generated. CONCLUSIONS: Findings from this study suggest ways in which holistic nurse researchers can strengthen study designs and thus improve the quality of scientific evidence available for application into practice and improve health outcomes.

Using simulated family presence to decrease agitation in older hospitalized delirious patients: A randomized controlled trial.

BACKGROUND: Simulated family presence has been shown to be an effective nonpharmacological intervention to reduce agitation in persons with dementia in nursing homes. Hyperactive or mixed delirium is a common and serious complication experienced by hospitalized patients, a key feature of which is agitation. Effective nonpharmacological interventions to manage delirium are needed. OBJECTIVES: To examine the effect of simulated family presence through pre-recorded video messages on the agitation level of hospitalized, delirious, acutely agitated patients. DESIGN: Single site randomized control trial, 3 groups×4 time points mixed factorial design conducted from July 2015 to March 2016. SETTING: Acute care level one trauma center in an inner city of the state of Connecticut, USA. PARTICIPANTS: Hospitalized patients experiencing hyperactive or mixed delirium and receiving continuous observation were consecutively enrolled (n=126), with 111 participants completing the study. Most were older, male, Caucasian, spouseless, with a pre-existing dementia. METHODS: Participants were randomized to one of the following study arms: view a one minute family video message, view a one minute nature video, or usual care. Participants in experimental groups also received usual care. The Agitated Behavior Scale was used to measure the level of agitation prior to, during, immediately following, and 30min following the intervention. RESULTS: Both the family video and nature video groups displayed a significant change in median agitation scores over the four time periods (p<0.001), whereas the control group did not. The family video group had significantly lower median agitation scores during the intervention period (p<0.001) and a significantly greater proportion (94%) of participants experiencing a reduction in agitation from the pre-intervention to during intervention (p<0.001) than those viewing the nature video (70%) or those in usual care only (30%). The median agitation scores for the three groups were not significantly different at either of the post intervention time measurements. When comparing the proportion of participants experiencing a reduction in agitation from baseline to post intervention, there remained a statistically significant difference (p=0.001) between family video(60%) and usual care (35.1%) immediately following the intervention CONCLUSION: This work provides preliminary support for the use of family video messaging as a nonpharmacological intervention that may decrease agitation in selected hospitalized delirious patients. Further studies are necessary to determine the efficacy of the intervention as part of a multi-component intervention as well as among younger delirious patients without baseline dementia.

Translation of the Care of Persons with Dementia in their Environments (COPE) intervention in a publicly-funded home care context: Rationale and research design.

BACKGROUND: Dementia is the leading cause of loss of independence in older adults worldwide. In the U.S., approximately 15 million family members provide care to relatives with dementia. This paper presents the rationale and design for a translational study in which an evidence-based, non-pharmacologic intervention for older adults with dementia and family caregivers (CGs) is incorporated into a publicly-funded home care program for older adults at risk for nursing home admission. METHODS: The 4-month Care of Persons with Dementia in their Environments (COPE) intervention is designed to optimize older adults' functional independence, and to improve CG dementia management skills and health-related outcomes. COPE features 10 in-home occupational therapy visits, and 1 in-home visit and 1 telephone contact by an advanced practice nurse. COPE was deemed efficacious in a published randomized clinical trial. In the present study, older adults with dementia enrolled in the Connecticut Home Care Program for Elders (CHCPE) and their CGs are randomly assigned to receive COPE plus their ongoing CHCPE services, or to continue receiving CHCPE services only. OUTCOMES: The primary outcome for older adults with dementia is functional independence; secondary outcomes are activity engagement, quality of life, and prevention or alleviation of neuropsychiatric symptoms. CG outcomes include perceived well-being and confidence in using activities to manage dementia symptoms. Translational outcomes include net financial benefit of COPE, and feasibility and acceptability of COPE implementation into the CHCPE. COPE has the potential to improve health-related outcomes while saving Medicaid waiver and state revenue-funded home care program costs nationwide.

Connecting with chronically ill patients to improve treatment adherence.

This study presents an integrative review of the literature assessing the relationships among a patient's style in coping with a long-term health condition, the patient-practitioner therapeutic alliance, and treatment adherence among chronically ill adults. Evidence-based recommendations to improve nurse practitioner-patient therapeutic alliance and treatment adherence are suggested.

Predicting nursing home placement among home- and community-based services program participants.

BACKGROUND: Several states offer publicly funded-care management programs to prevent long-term care placement of high-risk Medicaid beneficiaries. Understanding participant risk factors and services that may prevent long-term care placement can facilitate efficient allocation of program resources. OBJECTIVES: To develop a practical prediction model to identify participants in a home- and community-based services program who are at highest risk for long-term nursing home placement, and to examine participant-level and program-level predictors of nursing home placement. STUDY DESIGN: In a retrospective observational study, we used deidentified data for participants in the Connecticut Home Care Program for Elders who completed an annual assessment survey between 2005 and 2010. METHODS: We analyzed data on patient characteristics, use of program services, and short-term facility admissions in the previous year. We used logistic regression models with random effects to predict nursing home placement. The main outcome measures were long-term nursing home placement within 180 days or 1 year of assessment. RESULTS: Among 10,975 study participants, 1249 (11.4%) had nursing home placement within 1 year of annual assessment. Risk factors included Alzheimer's disease (odds ratio [OR], 1.30; 95% CI, 1.18-1.43), money management dependency (OR, 1.33; 95% CI, 1.18-1.51), living alone (OR, 1.53; 95% CI, 1.31-1.80), and number of prior short-term skilled nursing facility stays (OR, 1.46; 95% CI, 1.31-1.62). Use of a personal care assistance service was associated with 46% lower odds of nursing home placement. The model C statistic was 0.76 in the validation cohort. CONCLUSIONS: A model using information from a home- and community-based service program had strong discrimination to predict risk of long-term nursing home placement and can be used to identify high-risk participants for targeted interventions.

Trajectories of at-homeness and health in usual care and small house nursing homes.

BACKGROUND: Long-term care providers across the United States are building innovative environments called "Green House" or small-house nursing homes that weave humanistic person-centered philosophies into clinical care, organizational policies, and built environments. PURPOSE: To compare and contrast trajectories of at-homeness and health over time between residents remaining in a usual care nursing home (ucNH) and residents moving from that home to a small house (SmH). METHODS: Mixed methods longitudinal design with 4 waves of data collection: before the move and 1, 3, and 6 months after the move (or equivalent for nonmovers). RESULTS: Prior to the move, individuals who decided to relocate to the SmH had more depressive symptoms and lower levels of at-homeness (measured by the Experience of Home [EOH] Scale). Most participants who chose to stay in the ucNH reported high baseline levels of at-homeness and maintained this over the next 6 months. All EOH scores in the SmH group increased after the move. Individuals who moved to the SmH also had greater less functional dependence over time. Qualitative findings highlight variables that contributed to at-homeness in both groups. CONCLUSIONS: This study demonstrates that a "one size fits all" approach may not be best because at-homeness is an individualized construct. Complex relationships emerged between perceived self-care ability, functional performance, and SmH nursing homes. Mixed methods enable deeper understanding of therapeutic environments and inform the development and testing of tailored interventions.

The meaning of home: a qualitative meta-synthesis.

Practice-based initiatives have emphasized the need to provide "homelike" environments in long-term care. This study adds to the discourse on the meaning of home by synthesizing several individual qualitative studies using Noblit and Hare's method of meta-ethnography. The purpose of this larger synthesis is to bring the findings from several discrete studies into a larger interpretive perspective that will lead to ongoing theory and practice development to enable experiences of home during residential transition, thereby informing nursing praxis in creating and shaping therapeutic environments.

Monitoring medication use in older adults.

The Beers Criteria for Potentially Inappropriate Medication Use in Older Adults assessment instrument highlights specific medications whose risks to older adults may outweigh their benefits. Nurses can use the criteria to evaluate medications for risks that warrant follow-up with older adults in various settings, including hospitals, nursing homes, and private homes. Watch a video demonstrating the use of the Beers criteria at http://links.lww.com/A266.

Psychometric testing of an instrument to measure the experience of home.

Research related to quality of life in long-term care has been hampered by a paucity of measurement tools sensitive to environmental interventions. The primary aim of this study was to test the psychometric properties of a new instrument, the Experience of Home (EOH) Scale, designed to measure the strength of the experience of meaningful person-environment transaction. The instrument was administered to 200 older adults in diverse dwelling types. Principal components analysis provided support for construct validity, eliciting a three-factor solution accounting for 63.18% of variance in scores. Internal consistency reliability was supported with Cronbach's alpha of .96 for the entire scale. The EOH Scale is a unique research tool to evaluate interventions to improve quality of living in residential environments.

Assessing pain as a fifth vital sign in long-term care facilities: Recommendations from the field.

In long-term care facilities, pain management is complex because dementia, delirium, and other reasons for residents' altered communication ability are a significant barrier to pain assessment. The purpose of this study was to explore the status of implementation of pain as a fifth vital sign in a sample of long-term care facilities. A three-round Delphi survey was used to obtain consensus from personnel in 60 long-term care facilities in NY State. Findings are presented in terms of recommendations related to pain criteria, assessment methods, frequency of pain assessment, responsibility for pain assessment, monitoring strategies, education, documentation, and pain management education. The results of this study highlight many important considerations in the treatment of pain as a fifth vital sign in long-term care facilities. Evidence-based practice will be facilitated by further research related to underexplored aspects of pain assessment and management, and further attention to care delivery systems that support continued knowledge acquisition and the implementation of best practices.

Getting by in the community: lessons from frail elders.

This study explores how functionally impaired, elderly persons are able to remain in the community without home- and community- based care (HCBC) under the Medicaid program. Using HCBC administrative data, Medicare data, and survey data, we find the nonparticipants in the community appear to get by through a combination of reliance on informal care, use of Medicare home care, and going without needed services. Despite their efforts to manage their care in the community, non-participants were significantly more likely than the participants to enter a nursing home during the six months following assessment. While our analysis does not allow us to attribute the higher nursing home entry to the absence of HCBC services with certainty, the finding does raise questions about whether the elements of the HCBC program that discourage participation may save Medicaid dollars in the short-run at the expense of future Medicaid costs from more rapid nursing home entry.

Postoperative pain communication skills for older adults.

This study tested the effect of a preoperative pain communication intervention on older adults' ability to obtain pain relief after a total knee arthroplasty. A posttest-only experimental design was used to compare older adults randomly assigned to (a) view a pain management and pain communication film, (b) view the pain management film only, or (c) receive standard care only. Initial method adjustments decreased potential error in the study. Adjustments included testing only total knee arthroplasty patients receiving standard physical therapy and omitting unreliable measures from the analyses. Recruitment of the standard care group was halted when differences emerged between the remaining groups. Older adults in the communication group reported significantly less sensory pain on postoperative Day 1 than older adults in the pain management only group. Teaching older adults both pain communication skills and pain management information before surgery might result in greater pain relief during the early postoperative period.