Chin Chin Lee

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

A Methodology for Describing and Decomposing Complex Psychosocial and Behavioral Interventions

This article presents a comprehensive conceptual framework and methodology for characterizing multidimensional psychosocial and behavioral interventions for family caregivers of people with Alzheimers disease. The methodology involved conducting a detailed task analysis of the interventions, and the application of the analytical hierarchy process. The authors were able to achieve high levels of consistency and reliability using this methodology to decompose and describe the interventions according to a complex conceptual framework comprising 3 dimensions: target domain, functional domain, and delivery system characteristics. Application of this methodology will enhance the ability to describe and measure interventions consistently, make comparisons across studies, isolate causal factors that achieve desired outcomes, and more generally elevate the science of psychosocial intervention research.

Effects of Age, Speech Rate, and Environmental Support in Using Telephone Voice Menu Systems

Age differences in the use of telephone menu systems were investigated in two experiments. Participants from three age groups (younger: 18--39; middle-aged: 40--59; older: 60+ years) were required to obtain specified information or perform some action using simulated voice menu systems. Measures reflecting task performance, menu navigation, and subjective responses were collected. The focus in Experiment 1 was on examining the effect of speech rate. Data from 196 participants indicated age differences in performance, especially for complex problems. There was no effect of speech rate on any of the performance measures. Experiment 2 examined two types of support devices: a screen phone and a graphical aid. Data from 114 participants indicated that the screen phone provided some benefits in navigational efficiency. In terms of performance, the older participants benefited more from the graphical aid and the younger participants performed better with the screen phone. Actual or potential applications of this research include guidance in the use of support devices that can reduce memory demands and the identification of appropriate speech rates.

Factors influencing use of an e-health website in a community sample of older adults

OBJECTIVE The use of the internet as a source of health information and link to healthcare services has raised concerns about the ability of consumers, especially vulnerable populations such as older adults, to access these applications. This study examined the influence of training on the ability of adults (aged 45+ years) to use the Medicare.gov website to solve problems related to health management. The influence of computer experience and cognitive abilities on performance was also examined. DESIGN Seventy-one participants, aged 47-92, were randomized into a Multimedia training, Unimodal training, or Cold Start condition and completed three healthcare management problems. MEASUREMENT AND ANALYSES: Computer/internet experience was measured via questionnaire, and cognitive abilities were assessed using standard neuropsychological tests. Performance metrics included measures of navigation, accuracy and efficiency. Data were analyzed using analysis of variance, χ(2) and regression techniques. RESULTS The data indicate that there was no difference among the three conditions on measures of accuracy, efficiency, or navigation. However, results of the regression analyses showed that, overall, people who received training performed better on the tasks, as evidenced by greater accuracy and efficiency. Performance was also significantly influenced by prior computer experience and cognitive abilities. Participants with more computer experience and higher cognitive abilities performed better. CONCLUSIONS The findings indicate that training, experience, and abilities are important when using complex health websites. However, training alone is not sufficient. The complexity of web content needs to be considered to ensure successful use of these websites by those with lower abilities.

Training Older Workers for Technology-Based Employment

An increasingly aging workforce and advances in technology are changing work environments and structures. The continued employability of older adults, particularly those of lower socioeconomic status (SES), requires them to participate in training programs to ensure their competence in todays workplace. Focus groups with 37 unemployed adults (51–76 years old) were conducted to gather information about barriers and obstacles for returning to work, training needs and formats, work experiences, and perceptions of the characteristics of an ideal job. Overall, results indicated that participants experienced age discrimination and lack of technology skills. They also expressed a desire to receive additional training on technology and a preference for classroom training.

Computer Proficiency Questionnaire: Assessing Low and High Computer Proficient Seniors

PURPOSE OF THE STUDY Computers and the Internet have the potential to enrich the lives of seniors and aid in the performance of important tasks required for independent living. A prerequisite for reaping these benefits is having the skills needed to use these systems, which is highly dependent on proper training. One prerequisite for efficient and effective training is being able to gauge current levels of proficiency. We developed a new measure (the Computer Proficiency Questionnaire, or CPQ) to measure computer proficiency in the domains of computer basics, printing, communication, Internet, calendaring software, and multimedia use. Our aim was to develop a measure appropriate for individuals with a wide range of proficiencies from noncomputer users to extremely skilled users. DESIGN AND METHODS To assess the reliability and validity of the CPQ, a diverse sample of older adults, including 276 older adults with no or minimal computer experience, was recruited and asked to complete the CPQ. RESULTS The CPQ demonstrated excellent reliability (Cronbachs α = .98), with subscale reliabilities ranging from .86 to .97. Age, computer use, and general technology use all predicted CPQ scores. Factor analysis revealed three main factors of proficiency related to Internet and e-mail use; communication and calendaring; and computer basics. Based on our findings, we also developed a short-form CPQ (CPQ-12) with similar properties but 21 fewer questions. IMPLICATIONS The CPQ and CPQ-12 are useful tools to gauge computer proficiency for training and research purposes, even among low computer proficient older adults.

The Usability of Electronic Personal Health Record Systems for an Underserved Adult Population

Objective: The goals of this study were to identify the demands associated with using electronic personal health records (PHRs) and to evaluate the ability of adults of lower socioeconomic status and low health literacy to use PHRs to perform health management activities. Background: PHRs are proliferating in clinical practices and health care organizations. These systems offer the potential of increasing the active involvement of patients in health self-management. However, little is known about the actual usability of these tools for health consumers. Method: We used task analysis and health literacy load analysis to identify the cognitive and literacy demands inherent in the use of PHRs and evaluated the usability of three currently available PHR systems with a sample of 54 adults. Participants used the systems to perform tasks related to medication management, interpretation of lab/test results, and health maintenance. Data were also gathered on the participants’ perception of the potential value of using a PHR. Results: The results indicated that a majority of the participants had difficulty completing the tasks and needed assistance. There was some variability according to task and PHR system. However, most participants perceived the use of PHRs as valuable. Conclusions: Although considered a valuable tool by consumers, the use of PHR systems may be challenging for many people. Strategies are needed to enhance the usability of these systems, especially for people with low literacy, low health literacy, or limited technology skills. Application: The data from this study have implications for the design of PHRs.

Older Adults' Training Preferences for Learning to Use Technology.

Older adults may benefit from using technology in their everyday lives. However, adults over 65 may need more training than their younger counterparts given they have had less experience with technology. In this study, 113 adults between the ages of 65 and 85 participated in focus group interviews discussing their training needs and preferences for technology items used in the home. Participants expressed an interest in receiving additional training, particularly for specific tasks. Participants also discussed preferences for various characteristics of training, such as who should conduct the training and for their preferred method of training. One of the most frequently discussed preferences was for self-training using text materials, such as a manual.

Older adults and technology adoption

Access to computers and the Internet is a major public policy concern as technology has become a significant aspect of economic, social and health equity. Recent data suggest that although computer and Internet use is lower among older, as compared to younger adults access is increasing among older people. This paper examines changes in use of computers and the Internet over time (2000–2002 and 2006–2007) among two samples (N=424) of older adults ranging in age from 50–85 yrs. Data are also reported on changes in attitudes towards computers and how adoption is influenced by attitudes and demographic characteristics. Technology adoption and attitudes towards computers were assessed via questionnaire. Over time, although there was no difference in percentage of participants who had computer experience, both breadth of computer use and Internet use increased. Participants from the more recent time point also reported more comfort with computers. The data also indicated that age, education, and comfort with computers predicted breadth of computer and Internet use. Understanding factors that influence access is important to the development of strategies to close the gap between adopters and non-adopters.

The personalized reminder information and social management system (PRISM) trial: rationale, methods and baseline characteristics

Technology holds promise in terms of providing support to older adults. To date, there have been limited robust systematic efforts to evaluate the psychosocial benefits of technology for older people and identify factors that influence both the usability and uptake of technology systems. In response to these issues, we developed the Personal Reminder Information and Social Management System (PRISM), a software application designed for older adults to support social connectivity, memory, knowledge about topics, leisure activities and access to resources. This trail is evaluating the impact of access to the PRISM system on outcomes such as social isolation, social support and connectivity. This paper reports on the approach used to design the PRISM system, study design, methodology and baseline data for the trial. The trial is multi-site randomized field trial. PRISM is being compared to a Binder condition where participants received a binder that contained content similar to that found on PRISM. The sample includes 300 older adults, aged 65-98 years, who lived alone and at risk for being isolated. The primary outcome measures for the trial include indices of social isolation and support and well-being. Secondary outcomes measures include indices of computer proficiency, technology uptake and attitudes towards technology. Follow-up assessments occurred at 6 and 12 months post-randomization. The results of this study will yield important information about the potential value of technology for older adults. The study also demonstrates how a user-centered iterative design approach can be incorporated into the design and evaluation of an intervention protocol.