Faculty Bibliography

OBJECTIVES/OBJECTIVE:To compare the effectiveness of 2 caregiver interventions with known efficacy: the Resources for Enhancing Caregiver Health-Offering Useful Treatment (REACH-OUT) and the New York University Caregiver Intervention (NYUCI). DESIGN/METHODS:1:1 randomized pragmatic trial. SETTING/METHODS:New York City. PARTICIPANTS/METHODS:Informal Hispanic caregivers of persons with dementia (N=221; mean age 58.2, 82.8% female, 63.3% adult children, 31.7% spouses). INTERVENTION/METHODS:Participants were randomized to 6 months of NYUCI (n=110) or REACH-OUT (n=111), balanced on characteristics at baseline. All participants were referred for social supportive services. MEASUREMENTS/METHODS:The primary outcomes were changes between baseline and 6 months in depressive symptoms, measured using the Geriatric Depression Scale (GDS), and caregiver burden, measured using the Zarit Caregiver Burden Scale (ZCBS). RESULTS:There were no differences in outcomes between NYUCI and REACH-OUT. Both interventions showed a reduction in burden (REACH-OUT: 5.2 points, 95% confidence interval (CI)=2.2-8.1, p<.001; NYUCI: 4.6-points, 95% CI=1.7-7.5, p=.002). There were no significant changes on the GDS. Effects for the ZCBS were significant only for spouses and older caregivers. CONCLUSION/CONCLUSIONS:Although there were no significant intervention group differences, both interventions resulted in significantly reduced burden for Hispanic caregivers at 6 months, particularly for spouses and older caregivers.

Summary/Abstract Our experience evaluating a museum program for people with dementia together with their family members demonstrated benefits for all participants. We hypothesized that participation in a chorus would also have positive effects, giving them an opportunity to share a stimulating and social activity that could improve their quality of life. We inaugurated a chorus for people with dementia and their family caregivers in 2011, which rehearses and performs regularly. Each person with dementia must be accompanied by a friend or family member and must commit to attending all rehearsals and the concert that ensues. A pilot study included a structured assessment, take home questionnaires and focus groups. Analyses of pre-post scores were conducted; effect size was quantified using Cohen's d. Results showed that quality of life and communication with the other member of the dyad improved (Effect size: Cohen's d between 0.32 and 0.72) for people with dementia; quality of life, social support, communication and self-esteem improved (d between 0.29 and 0.68) for caregivers. Most participants stated that benefits included belonging to a group, having a normal activity together and learning new skills. Participants attended rehearsals in spite of harsh weather conditions. The chorus has been rehearsing and performing together for more than 6 years and contributing to its costs. Results of this pilot study suggest that people in the early to middle stage of dementia and their family members and friends can enjoy and learn from rehearsing and performing in concerts that also engage the wider community. It is essential to conduct additional larger studies of the benefits of participating in a chorus, which may include improved quality of life and social support for all, and reduced cognitive decline among people with dementia.

Background and Objectives/UNASSIGNED:Many evaluations of nonpharmacologic interventions for family members of persons with Alzheimer's disease or related dementias (ADRDs) exist, but few consider effects on outcomes that are pertinent to caregivers' roles and relationships. The current study evaluated the efficacy of the New York University Caregiver Intervention-Adult Child (NYUCI-AC) on perceptions of family conflict, role conflict (effects of family caregiving and time, family, and social life), and perceived social support for adult child caregivers of relatives with ADRD over a 3-year period. Research Design and Methods/UNASSIGNED:A single-blinded randomized controlled trial design was used. One-hundred and seven adult child caregivers were enrolled in the NYUCI-AC and randomly assigned to a treatment or contact control group. Assessments were scheduled to be completed every 4 months during the first year of participation and every 6 months thereafter for up to 3 years. Individual growth curve models were utilized to ascertain the effects of the NYUCI-AC on change in family conflict, role conflict, and perceptions of social support. Results/UNASSIGNED:< .05) declined and satisfaction with instrumental assistance increased over the course of the study, whereas family conflict slightly increased over the initial study period and then declined slightly. The findings indicated that the NYUCI-AC did not exert statistically significant effects on changes in family conflict, role conflict, or perceptions of social support over the 3-year study period. Discussion and Implications/UNASSIGNED:Although the clinical content of some dementia caregiver interventions is tailored to the specific needs of each caregiver and family, the outcomes selected to judge the efficacy of these interventions might not follow similar principles. Incorporating clinical content and evaluation outcomes that are family-centered will help to advance the state of the art of dementia caregiving interventions.

Purpose of the study: The economic burden of dementia is substantially borne by state Medicaid programs. We estimated savings, from the state payer perspective, from offering the New York University Caregiver Intervention (NYUCI), a well-studied caregiver support and counseling program, to eligible Minnesota Medicaid enrollees. Design and Methods: A population-based microsimulation Markov model predicted and compared costs over 15 years with and without implementation of the NYUCI for family caregivers of community-based Medicaid eligibles with dementia. The model was informed by primary analysis of Minnesota Department of Human Services (MN DHS) data, and literature on the epidemiology, natural history, costs, and evidence-based management of the disease. Primary outcomes were predicted cumulative total direct costs, including medical, facility, and waiver-program payments for eligibles, and estimated costs of providing the NYUCI. Results: Approximately 5-6% more eligibles with dementia would remain in the community annually from year 3 (2014) on, so that over 15 years 17% fewer would die in nursing homes (NH) if their caregivers received the NYUCI. After 15 years, MN DHS could realize savings of $40.4 million (2011 dollars, discounted at 3%) if all eligibles/caregivers enrolled. Savings were expected 5 years after implementation. Multiple sensitivity analyses, including best-and worst-case scenarios, estimated results ranging from 15-year cumulative savings of $178.9 million to a cumulative loss of $7.3 million, respectively, driven largely by assumed program effectiveness. Implications: State payers can use enhanced caregiver support to moderate the growing tax burden of dementia, even without a breakthrough in the pharmacologic treatment of the disease.

Purpose of the Study/UNASSIGNED:A noted limitation of dementia caregiver intervention research is a lack of focus on the mechanisms of successful programs. The purpose of this study was to conduct a process evaluation of the New York University Caregiver Intervention-Adult Child (NYUCI-AC) to describe its delivery and determine which of its components were associated with key outcomes (caregiver stress and well-being; care recipient residential care admission). Design and Methods/UNASSIGNED:Adult child caregivers randomly assigned to receive the NYUCI-AC intervention (n = 54) were included. Detailed data on the frequency and duration of each intervention component received, 4-month review checklists, and regular caregiver assessments were collected. Quantitative (descriptive, logistic regression, Cox proportional hazards models, growth curve models) and qualitative thematic analyses were performed. Results/UNASSIGNED:Adult children receiving the NYUCI-AC completed a mean of 5.19 individual and family counseling sessions; it took on average a little over 11 months to do so. All NYUCI-AC counseling components were generally well-received and improved caregivers' management of care-related stress. The individual counseling sessions' clinical benefits in reducing primary subjective stress were most apparent in the first year of the intervention. Caregivers who experienced negative outcomes over time used more family sessions. Implications/UNASSIGNED:A key mechanism of benefit for adult child caregivers in the NYUCI-AC was the frequent use of individual counseling sessions. The qualitative and quantitative results emphasize the value of the NYUCI-AC's flexibility in allowing adult child caregivers to choose the timing and use of specific intervention components.

PURPOSE/OBJECTIVE:To identify the information and communication needs of Hispanic family caregivers for individuals with Alzheimer's Disease and Related Dementias (ADRD) and the manner in which online tools may meet those needs. METHODS:We conducted 11 participatory design sessions with 10 English- and 14 Spanish-speaking urban-dwelling Hispanic family caregivers and gathered data using a survey, collage assemblage, and audio and video recordings. Four investigators analyzed transcripts of audio recordings with a coding framework informed by several conceptual models. RESULTS:Participants had an average age of 59.7 years, were mostly female (79.2%), and had cared for a family member with ADRD for an average of 6.5 years. All participants accessed the Internet at least once a week with 75% ≥ daily. Most used the Internet to look up health information. All participants reported caregiver attributes including awareness of the disease symptoms or behaviors. The majority reported information needs/tasks (91.7%), communication needs/tasks (87.5%), and need for online tools (79.2%). CONCLUSION/CONCLUSIONS:Hispanic caregivers of individuals with ADRD reported key information and communication needs/tasks. Only Spanish-speaking participants reported Internet and technology use deficits suggesting the requirement for further technology support. Data show a need for online tools to meet the needs of caregivers.

Depression, agitation, and wandering are common behaviors associated with dementia and frequently observed among nursing home residents. Even with pharmacological treatment, behaviors often persist, hindering quality of life for elders, their family, and paid caregivers. This study examined the use of music therapy for treatment of these symptoms among 132 people with moderate to severe dementia in nursing homes. Participants were evaluated for depressive symptoms, agitation, and wandering to determine their predominate behavior. There were two assessments, two weeks apart, prior to intervention, followed by a two-week intervention, and two follow-up assessments, also two weeks apart. A repeated measures ANOVA determined that after two weeks of music therapy, symptoms of depression and agitation were significantly reduced; there was no change for wandering. Multivariate analyses confirmed a relationship between music therapy and change in neuropsychiatric symptoms associated with dementia. Results suggest widespread use of music therapy in long-term care settings may be effective in reducing symptoms of depression and agitation.

PURPOSE OF THE STUDY: The Administration on Aging funded six New York University Caregiver Intervention (NYUCI) demonstration projects, a counseling/support intervention targeting dementia caregivers and families. Three sites (Georgia, Utah, Wisconsin) pooled data to inform external validity in nonresearch settings. This study (a) assesses collective changes over time, and (b) compares outcomes across sites on caregiver burden, depressive symptoms, satisfaction with social support, family conflict, and quality of life. DESIGN AND METHODS: Data included baseline/preintervention ( N = 294) and follow-up visits (approximately 4, 8, 12 months). RESULTS: Linear mixed models showed that social support satisfaction increased ( p < .05) and family conflict decreased ( p < .05; Cohen's d = 0.49 and 0.35, respectively). Marginally significant findings emerged for quality of life increases ( p = .05) and burden decreases ( p < .10). Depressive symptoms remained stable. Slopes did not differ much by site. IMPLICATIONS: NYUCI demonstrated external validity in nonresearch settings across diverse caregiver samples.

This study compared differences in both maladaptive beliefs and attitudes about sleep between African American (heareafter referred to as black) men at risk for obstructive sleep apnea (OSA) and those without OSA risk. METHODS: A convenience sample of 120 community-dwelling men provided sociodemographic, health and sleep data. A validated questionnaire was used to identify men at high risk for OSA and the Dysfunctional Beliefs and Attitudes about Sleep (DBAS-16) scale was used to measure endorsed attitudes and beliefs about sleep. RESULTS: The mean age of the sample was 42 +/- 15 years. Men reported difficulty falling asleep (23%), difficulty maintaining sleep (23%), early morning awakening (35%), and use of sleep medicine (6%). 27% were at high risk for OSA. Men at high OSA risk had greater DBAS scores [F1, 92=13.68, p<0.001]; OSA risk was related to greater rate of sleep dissatisfaction overall [46% vs. 13%, Chi2=24.52, p<0.001]. CONCLUSION: The findings suggest that maladaptive beliefs and attitudes about sleep are important characteristics of black men at risk for OSA, and potential screenings around sleep difficulties should also consider these factors.