Linda O. Nichols

Enhancing the Quality of Life of Dementia Caregivers from Different Ethnic or Racial Groups: A Randomized, Controlled Trial

Context Providing care for patients with dementia can pose enormous burdens that may be eased with assistance and support. Needs may differ by race or ethnicity. Contributions The investigators randomly assigned Hispanic, black, and white dementia caregivers to receive written educational materials or an intensive intervention to improve caregiver quality of life. The specific interventions were determined by caregivers, were delivered via trained personnel and telephone support groups, and targeted several dimensions of need. The study found that quality of life improved for Hispanic and white caregivers and for black spousal caregivers in the intervention group but not in the control group. The intervention had no detectable effect on the number of care recipients who were institutionalized. Cautions The study used only a single 6-month follow-up assessment, combined heterogeneous cultures and ethnicities into 3 groups, and excluded some ethnicities. Implications An intensive intervention targeting several dimensions of caregiver need improved caregiver quality of life without an apparent effect on care recipient institutionalization. The effect did not differ by caregiver race or ethnicity. The Editors Caring for a family member with dementia is extremely stressful, contributes to psychiatric and physical illness, and increases the risk for death (1, 2). The accumulating evidence on the personal, social, and health effects of dementia caregiving has generated a broad range of intervention studies, including randomized trials aimed at decreasing the burden and stress of caregiving. Several studies have demonstrated statistically significant effects in reducing caregiver burden, lowering caregiver depression, and delaying institutionalization of care recipients (1, 3, 4) through either targeted interventions that treat a specific caregiver problem, such as depression, or broad-based multicomponent interventions that include counseling, case management, and telephone support. Persistent limitations of caregiver intervention research are the paucity of well-controlled randomized trials, the limited range of outcomes examined, small sample sizes and insufficient power, geographic limitations, inadequate racial or ethnic variation, and a scarcity of comprehensive multicomponent interventions (4). Indeed, none of the 41 randomized clinical trials published in the last 5 years met Consolidated Standards of Reporting Trials (CONSORT) recommendations for reporting randomized trials (5), and many have serious methodologic problems that call into question the reported findings (4). To address these limitations, the National Institute on Aging and the National Institute of Nursing Research funded a multisite research program designed to develop and test an effective caregiver intervention: the Resources for Enhancing Alzheimers Caregiver Health (REACH) study. We performed the study in 2 phases. In the first phase (REACH I), we tested several different interventions at 6 U.S. sites to identify the most promising approaches to decreasing caregiver burden and depression (6). Results from the study showed that active treatments were superior to control conditions in reducing caregiver burden and that active engagement in skills training statistically significantly reduced caregiver depression (7, 8). The existing literature and findings from REACH I helped guide the design of the REACH II intervention (7, 8). We based the REACH II study on the premise that caregivers can have problems in several areas at varying levels of intensity, and thus, interventions must be responsive to variations in needs among caregivers. The findings from REACH I also suggest that interventions that use active techniques, such as role-playing and interactive practice, are more effective at improving outcomes, such as depression symptoms, compared with more passive methods, such as providing information (7). We based the REACH II intervention on these assumptions and designed the intervention to maximize outcomes by systematically targeting several problem areas, tailored the intervention to respond to the needs of each individual, and actively engaged the caregiver in the intervention process. We hypothesized that participants assigned to the intervention would do better than those in the control group on several indicators of caregiver quality of life, including depression, burden, self-care, and social support and care recipient problem behaviors, and that these differences would be largest among Hispanic or Latino persons because they have lower access to support services (8). In additional analyses, we assessed the effects of treatment on rates of caregiver clinical depression and care recipient institutional placement, as well as the benefits derived from study participation. Methods Caregivers Eligibility criteria for caregivers included the following: Hispanic or Latino, white or Caucasian, or black or African-American race or ethnicity; age 21 years or older; living with or sharing cooking facilities with the care recipient; providing care for a relative with diagnosed Alzheimer disease or related disorders for at least 4 hours per day for at least the past 6 months; and reported distress associated with caregiving (reported at least 2 of the following 6 items at baseline assessment: felt overwhelmed, felt like they often needed to cry, were angry or frustrated, felt they were cut off from family or friends, reported moderate to high levels of general stress, or felt their health had declined). We excluded caregivers who were involved in another caregiver intervention study, who had participated in REACH I, or who had an illness that would prevent 6 months of study participation. Other requirements were logistic, including having a telephone, planning to remain in the geographic area for at least 6 months, and competency in either English or Spanish (see Appendix Table 1 for a detailed list of exclusions). Appendix Table 1. Reasons for Ineligibility Care Recipients To be eligible for the study, caregivers had to confirm that their relative had diagnosed Alzheimer disease or related disorders. In addition, we screened care recipients for a history of severe mental illness, head injury, Parkinson disease, or stroke, and we administered the MiniMental State Examination (MMSE) (9). We excluded patients who were bedbound with MMSE scores of 0 because we felt that our intervention had little to offer caregivers who were caring for such patients. Moreover, being bedbound is a risk factor for institutional placement or death, and we sought to exclude caregivers who were likely to transition out of the caregiving role within the 6-month study. For patients who scored more than 23 on the MMSE or had other conditions, such as head injury, we required a physicians diagnosis of Alzheimer disease or related disorders. Procedures We recruited caregiver and care recipient dyads at 5 sites: Birmingham, Alabama; Memphis, Tennessee; Miami, Florida; Palo Alto, California; and Philadelphia, Pennsylvania. Enrollment began in June 2002, and follow-up ended in August 2004. Recruitment occurred in memory disorder clinics, primary care clinics, social service agencies, physician offices, churches, and community centers and by using professionally designed brochures, public service announcements on radio stations, newspaper articles, television, targeted newsletters, and community presentations. We translated all intervention materials and assessment instruments into Spanish for the Hispanic or Latino participants by using established techniques for forward-and-back translation and allowing for regional variation in language expression. We used bilingual and bicultural staff at the 3 sites that recruited Hispanic or Latino participants: Palo Alto, Philadelphia, and Miami. At all sites, assessors and interventionists received cultural sensitivity training and were certified before entering the field. Certified assessors were blinded to group assignment of study participants. The institutional review boards of all 5 site institutions and the coordinating center in Pittsburgh, Pennsylvania, approved the study. We obtained written informed consent from all caregivers and from care recipients whenever possible. Caregivers provided consent on behalf of care recipients who could not do so on their own. After telephone screening (n= 995) and baseline assessment (n= 670), we randomly assigned participants (n= 642) to the intervention or control group (Figure). We stratified randomization by using a block size of 2 or 4 within strata defined by the 5 intervention sites, 3 racial or ethnic groups (Hispanic or Latino, white or Caucasian, and black or African American), and 2 caregivercare recipient relationships (spouse or nonspouse). We performed randomization at the coordinating center by using a computer-generated algorithm and a standard protocol for transmitting randomization information between the coordinating center and the study sites. We administered 1 of 3 follow-up batteries, on the basis of care recipient status at follow-up (full follow-up, bereavement battery, or placement battery), to study participants 6 months after randomization when the intervention was completed. To maximize the number of individuals who could be included in the outcome analyses, we ensured that the 3 batteries were as similar as possible. We did not ask caregivers about caregiver burden and care recipient functional status if their care recipients had died; thus, we could not include these caregivers in the primary outcome analysis (10). Figure. Study flow diagram. *See Appendix Table 1 for reasons for ineligibility. See Appendix Table 2 (for reasons for unavailable end points and types of 6-month follow-up. Appendix Table 2. Reasons for Unavailable End Points and Types of 6-Month Follow-up Trial Groups Intervention The intervention involved a range of strategies: provision of informat

Interdisciplinary geriatric primary care evaluation and management: two-year outcomes.

BACKGROUND: The long‐term efficacy of interdisciplinary outpatient primary care Geriatric Evaluation and Management (GEM) has not been proven. This article focuses on results obtained during the 2 years of the study.

The Cost-Effectiveness of a Behavior Intervention with Caregivers of Patients with Alzheimer's Disease

OBJECTIVES: To examine the cost‐effectiveness of a randomized, clinical trial of a home‐based intervention for caregivers of people with dementia.

Factors predicting readmission of older general medicine patients

Objectives:1) Identify demographic, clinical, social support, functional, and psychological factors about which data are available within 24 hours of hospital admission associated with emergent unscheduled readmission for a group of older general medicine patients; 2) develop a model to predict emergent readmission.Design:Interview- and cbart-based study of emergent admissions that occurred within 60 days of discharge.Setting:General medicine wards of the Memphis Veterans Affairs Medical Center, an 862-bed university-affiliated tertiary care facility.Patients/participants:General medicine patients ≥ 65 years old (n=173). Inclusion criteria were willingness to participate, written consent (patient or family member), and patient interview within 36 hours of admission.Measurements and main results:The dependent variable was emergent readmission within 60 days of discharge from the hospital. Independent variables included demographic (age, race, income, education), social support (marital status, living arrangements), psychological (cognition, depression), activities of daily living functioning, and clinical (diagnoses, type and source of admission, length of stay, numbers of hospitalizations and days of hospitalizations in the past year, illness severity) parameters. Readmitted patients were emergently admitted and more severely ill, had more diagnoses of chronic obstructive pulmonary disease (COPD) or congestive heart failure (CHF), less ischemic heart disease, and more hospitalizations and hospital days in the past year (all p<0.05). Logistic regression identified diagnostic group (COPD or CHF), emergent admission, and admission severity of illness as predictive of readmission. The likelihood of being readmitted was 5.4. Accuracy of the three-variable model was 76%, predicted value positive, 73%, and predictive value negative, 77%.Conclusions:Chronically ill patients who are severely ill at index admission and who have had several hospitalizations in the past year tend to be readmitted. Using this model, high-risk patients may be prospectively targeted to reduce readmissions.

Translation of a Dementia Caregiver Support Program in a Health Care System—REACH VA

BACKGROUND Based on the National Institute on Aging/National Institute of Nursing Research Resources for Enhancing Alzheimers Caregiver Health (REACH) randomized controlled trial (REACH II), REACH VA (Department of Veterans Affairs) was the first national clinical translation of a proven behavioral intervention for dementia caregivers, running from September 2007 through August 2009. This article describes the population and outcomes of the REACH VA translation of REACH II into the VA. METHODS Clinical staff members from 24 VA Medical Center Home-Based Primary Care programs in 15 states delivered the intervention to stressed caregivers of patients with dementia. Like REACH II, the 6-month REACH VA intervention, structured through a protocol and individualized through a risk assessment, targeted education, support, and skills training to address caregiving risk areas of safety, social support, problem behaviors, depression, and health through 12 individual in-home and telephone sessions and 5 telephone support group sessions. Staff members of the Memphis VA Medical Center, Memphis, Tennessee, collected data on burden, depression, health and healthy behaviors, caregiving frustrations, social support, dementia-related behaviors, and time spent providing care and on duty. RESULTS From baseline to 6 months, caregivers reported significantly decreased burden, depression, impact of depression on daily life, caregiving frustrations, and number of troubling dementia-related behaviors. A 2-hour decrease in hours per day on duty approached significance. Caregivers (96%) believed that the program should be provided by the VA to caregivers. CONCLUSIONS This clinical translation achieved outcomes similar to the REACH II randomized controlled trial, providing clinically significant benefits for caregivers of a veteran with a progressive dementing disease. This model of caregiver support can inform public policy in providing assistance to caregivers.

Better Access, Quality, and Cost for Clinically Complex Veterans with Home‐Based Primary Care

In successfully reducing healthcare expenditures, patient goals must be met and savings differentiated from cost shifting. Although the Department of Veterans Affairs (VA) Home Based Primary Care (HBPC) program for chronically ill individuals has resulted in cost reduction for the VA, it is unknown whether cost reduction results from restricting services or shifting costs to Medicare and whether HBPC meets patient goals. Cost projection using a hierarchical condition category (HCC) model adapted to the VA was used to determine VA plus Medicare projected costs for 9,425 newly enrolled HBPC recipients. Projected annual costs were compared with observed annualized costs before and during HBPC. To assess patient perspectives of care, 31 veterans and caregivers were interviewed from three representative programs. During HBPC, Medicare costs were 10.8% lower than projected, VA plus Medicare costs were 11.7% lower than projected, and combined hospitalizations were 25.5% lower than during the period without HBPC. Patients reported high satisfaction with HBPC team access, education, and continuity of care, which they felt contributed to fewer exacerbations, emergency visits, and hospitalizations. HBPC improves access while reducing hospitalizations and total cost. Medicare is currently testing the HBPC approach through the Independence at Home demonstration.

Development of the risk appraisal measure: a brief screen to identify risk areas and guide interventions for dementia caregivers.

OBJECTIVES: To develop and validate a brief screening measure for use in research, healthcare, and community settings to systematically assess well‐being and identify needed areas of support for caregivers of patients with dementia.

Variation in cost of informal caregiving and formal-service use for people with Alzheimer's disease.

This study used a geographically diverse sample to estimate the total cost of informal care and formal services for community-residing Alzheimers disease (AD) care recipients. Baseline data were used for 1200 family caregivers from the Resources for Enhancing Alzheimers Caregiver Health (REACH) study, a multisite intervention trial. The replacement-wage-rate approach estimated informal cost. Formal services were assigned a cost based on secondary sources. Annual cost per care recipient amounted to

Disciplinary split: A threat to geriatrics interdisciplinary team training

23,436 for informal care and

Social marketing as a framework for recruitment: Illustrations from the REACH study

8,064 for formal services. Variation in informal cost was almost entirely due to instrumental activities of daily living (IADLs) assistance. Cross-site differences in cost persisted after controlling for caregiver and care-recipient characteristics. Geographic variation may suggest regional preferences or ethnic/cultural values. Further study is needed to determine whether this reflects differences in access or availability or how including a control group for care recipients with nondementia diagnoses might have affected these findings.