Faculty Bibliography

BACKGROUND/OBJECTIVE:Hispanics are about 1.5 times as likely as non-Hispanic Whites to experience Alzheimer's disease and related dementias (AD/ADRD). Eight percent of AD/ADRD caregivers are Hispanics. The purpose of this article is to provide a methodological case study of using data mining methods and the Twitter platform to inform online self-management and social support intervention design and evaluation for Hispanic AD/ADRD caregivers. It will enable other researchers to replicate the methods for their phenomena of interest. METHOD:We extracted an analytic corpus of 317,658 English and Spanish tweets, applied content mining (topic models) and network structure analysis (macro-, meso-, and micro-levels) methods, and created visualizations of results. RESULTS:The topic models showed differences in content between English and Spanish tweet corpora and between years analyzed. Our methods detected significant structural changes between years including increases in network size and subgroups, decrease in proportion of isolates, and increase in proportion of triads of the balanced communication type. DISCUSSION/CONCLUSION:Each analysis revealed key lessons that informed the design and/or evaluation of online self-management and social support interventions for Hispanic AD/ADRD caregivers. These lessons are relevant to others wishing to use Twitter to characterize a particular phenomenon or as an intervention platform.

We applied artificial intelligence techniques to build correlate models that predict general poor health in a national sample of caregivers with mild cognitive impairment (MCI). Our application of deep learning identified age, duration of caregiving, amount of alcohol intake, weight, myocardial infarction (MI) and frequency of MCI symptoms for Blacks and Hispanics whereas frequency of MCI symptoms, income, weight, coronary heart disease (CHD), age, and use of e-cigarette for the others as the strongest correlates of poor health among 81 variables entered. The application of artificial intelligence efficiently provided intervention strategies for Black and Hispanic caregivers with MCI.

Objectives: Alzheimer's disease (AD) affects not only the person with the illness, but family caregivers as well. The NYU Caregiver Intervention (NYUCI), a psychosocial intervention which has demonstrated both short and long-term benefits for caregivers, has been used widely in the United States and in Australia and England. The Israeli study was a hybrid between a community implementation study and a randomized controlled trial (RCT) of the NYUCI in a non-English speaking country.Method: A sample of 100 spouse caregivers participated in trial comparing the NYUCI provided by ten Israeli clinicians (enhanced care), to support group participation (usual care). The major outcome of interest was caregiver depressive symptoms, measured with the Geriatric Depression Scale. A linear random effects regression model controlling for factors associated with depressive symptoms was used to plot the longitudinal trajectories of depressive symptoms over the two-year study period and compare outcomes for the enhanced care and control groups.Results: One hundred spouse caregivers enrolled, of whom 81 provided data at baseline and at one or more post intervention assessments. The Israeli adaptation of the NYUCI was effective in reducing depressive symptoms reported by caregivers compared to their counterparts in the control group, b= -1.29 [95%CI (-2.43, -0.15)], p= .0265.Conclusion: While implementing a randomized controlled trial of an intervention developed and tested in traditional research settings using community providers in Israel, posed unique challenges, the study demonstrated benefits to caregivers. As a result, 30 municipalities in Israel are currently implementing an ongoing adaptation of the NYUCI.

BACKGROUND:Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. METHODS:In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. DISCUSSION/CONCLUSIONS:This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. TRIAL REGISTRATION/BACKGROUND:ClinicalTrials.gov (NCT02915939, prospectively registered).

BACKGROUND:Participatory art-based activities enhance the well-being and quality of life of patients. Few studies have examined the effects of these activities in community-dwelling older adults. This study aims to examine changes in well-being, quality of life and frailty associated with a weekly art-based activity, known as "Thursday at the Museum", performed at the Montreal Museum of Fine Arts (MMFA) in community-dwelling older adults. METHODS:Based on a pre-post intervention, single-arm, prospective and longitudinal design, 130 community-dwelling older adults (mean age 71.6 ± 4.9, 91.5 % female) were enrolled and completed this experimental study. The intervention was a participatory art-based activity carried out at the MMFA. Groups of participants (30-45 individuals) met for 2.3 h once a week for a 12-week period (defining a session). Before and after the first (M0), the fifth (M1), the ninth (M2) and the twelfth (M3) workshops, well-being was assessed. Quality of life, frailty, physician visits and hospitalizations were also assessed. RESULTS:The mean well-being score improved after each workshop compared with baseline (P ≤ 0.001), i.e., from M0 to M3. The magnitude of this change in well-being was significant at M3 when M0 was used as a reference value (coefficient of regression beta (ß) = 3.22 with P = 0.037). Quality of life gradually increased from M1 to M3 (ß increased from -0.50 to -2.1 with all P-values ≤0.003). The proportion of vigorous participants increased significantly, whereas the proportion of mild frail participants decreased at M3 only (ß=-0.70 with P = 0.001). CONCLUSION/CONCLUSIONS:The MMFA participatory art-based activity session had multidimensional positive effects on mental and physical health outcomes. These results suggest that museums may become key partners in public health policy initiatives for health prevention in older populations. TRIALREGISTRATION/UNASSIGNED:NCT03557723.

BACKGROUND AND OBJECTIVES/OBJECTIVE:Caregivers need to understand their health status and the disabilities of the care recipient to engage in effective health management. Infographics tailored with personal health data are a promising approach to facilitating comprehension, particularly for individuals with low health literacy/limited English proficiency. Such approaches may be especially important for dementia caregivers given the high care burden. RESEARCH DESIGN AND METHODS/METHODS:Guided by the Health Belief Model and the Data-Frame Theory of Sensemaking, we conducted iterative participatory design sessions with Hispanic family caregivers (N = 16) of persons with dementia. We created multiple prototype infographic designs to display scores on validated instruments of topics such as caregiving burden, overall health, and psychological distress. We retained and refined designs participants judged to be easily comprehensible. Analysis focused on identifying the graphical elements that contributed to the comprehensibility of designs and on evaluating participants' reactions to the designs. RESULTS:Successful infographics used intuitive scaling consistent with caregivers' perspective of dementia as inevitable decline. Participants reacted to infographics by describing the self-management actions they would take to address the health issue at hand. DISCUSSION AND IMPLICATIONS/UNASSIGNED:Tailored infographics supported caregivers' comprehension of their health status and served as cues to engaging in self-management. As such, they should be presented in the context of informational support that can facilitate selection of appropriate next steps. This can mitigate the potential mental and physical health consequences of caregiving and enable caregivers to continue to care for their relatives with dementia with less damage to their own well-being.

Introduction/UNASSIGNED:Information and communication technology (ICT) has emerged as promising to support health care consumers, including informal caregivers. This systematic review seeks to evaluate the state of the science of ICT interventions on the health of informal dementia caregivers. Methods/UNASSIGNED:We searched PubMed, CINAHL, Web of Science, and PsycINFO using concepts associated with ICT, dementia, and caregiver. Studies were assessed using the Quality Assessment Tool for Quantitative Studies. Results/UNASSIGNED:We identified 657 full-text publications. After removal of duplicates and title, abstract, and full-text screening, the quality of 12 studies was assessed. Studies varied in technology, implementation, results, and intervention evaluation. Discussion/UNASSIGNED:The methodological quality of the ICT intervention studies among dementia family caregivers was moderate to strong, yet outcome measurement was not uniform. The evidence is strongest for various forms of telephone-based interventions. However, there is a need for research that includes heterogeneous participants based on gender, race, and ethnicity.

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.

OBJECTIVE:We investigated a) the number of reported benefits in an informal caregiving situation and b) the factors that predict the caregiver's (CG's) experience of benefits. METHOD/METHODS:In this cross-sectional study, we computed univariate analyses and a multiple regression analysis using a benefit score as the dependent variable. Participants were 734 informal CGs who provide care for a person with chronic care needs in Germany. We examined the CG's self-reported physical complaints (GBB-24), subjective burden (CSI), depressive symptoms (PHQ-9), quality of life (CarerQoL), and benefits (BIZA-D). RESULTS:Most of the CGs (87.1%) experienced benefits in at least one field. A higher experience of benefits was significantly associated with: more depressive symptoms (r = 0.10), higher burden (r = 0.17), longer duration of care (r = 0.07), longer daily care time (r = 0.21), more physical complaints (r = 0.15), and a good quality of the relationship between CG and CR (η = 0.13). In the multivariate regression analysis, a good relationship between the CG and CR (β = .157, P < .001), an increased amount of care time (β = .188, P < .001), and a higher level of burden (β = .167, P < .001) were associated with greater CG's benefits. CONCLUSION/CONCLUSIONS:CG benefits are a very important, often experienced, but less-explored construct in caregiving research. Benefits do not seem to be on the opposite end of the same continuum as negative aspects of caregiving. Benefits appear to be a nearly distinct dimension in informal care settings.

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.