Faculty Bibliography

Background: As the number of people with dementia increases, there is a growing need for trained providers of evidence-based interventions to support family caregivers.A20-year randomized controlled trial demonstrated many benefits of the NYUC are giver Intervention (NYUCI)-reduced caregiver depression and stress and improved physical health, and delayed nursing home placement of the person with dementia. The intervention has been widely implemented, but until now, clinician training was provided in person by the original investigator and an expert counselor. Online training, if equally effective, would provide a technological solution, accessible 24/7, reducing cost and increasing accessibility. Methods: We developed an Internet-based training program that contains text, videos of interviews with experts, role play and case studies as well as certification and continuing education credits. We conducted a cluster randomized controlled trial to test the hypothesis that online training was no worse than in-person training. Participants were asked to complete a 100-item multiple choice and true-false test of knowledge of the NYUCI, 2 and 4 months after the training. The 2-month follow-up results have just become available. Results: We enrolled 261 participants in the US and Canada over a 2-year period. Among enrollees, 173 (66.2%) completed the 2 month follow-up test; 72.9% of those assigned to in person and 59.4% of those assigned to online training. Follow-up completion increased significantly, from 43.1% in year 1 to 74.4% in year 2, after efforts to assure buy-in from supervisors, clarification of expectations, and restricting the time interval for online training. There was no difference in test scores between clinicians trained in person and online (in-person mean= 79.4, sd= 5.8, vs online mean= 80.9, sd=7.7; t=-1.46, p=0.15). Only 2 participants assigned to online training dropped because of difficulty with the technology while 9 were unable to attend the in-person training due to scheduling or personal conflicts. Conclusions: While there are challenges in assuring high rates of completion, Internet-based training in implementing an evidence-based caregiver intervention can be as effective as in person training for social service providers, is more accessible and cost-effective and can lead to widespread availability of a skilled workforce to support family caregivers

The current study developed prognostic tools to identify dementia caregivers at-risk for clinically relevant burden or depressive symptoms following nursing home admission (NHA) of their family members. A retrospective, longitudinal design was used that included 1,610 dementia caregivers who provided data prior to and up to 6 months following nursing home admission. Response operant characteristic (ROC) curves were constructed to test and validate two prognostic tools: the NHA-Burden and NHA-Depression tools. An ROC curve yielded a sensitivity of 77% and a specificity of 62.5% at a cutoff score of 5.41 for the NHA-Burden Prognostic tool. A second ROC curve indicated a sensitivity of 75.4% and a specificity of 62.5% at a cutoff score of 7.45 for the NHA-Depression tool. Clinicians may wish to utilize cutpoints on the NHA-Burden and NHA-Depression tools to ensure that more persons who are at-risk for clinically significant burden or depression during NHA are identified.

PURPOSE: This study determined whether the NYU Caregiver Intervention, adapted in Minnesota for adult child caregivers (NYUCI-AC), prevented or delayed residential care placement for persons with dementia. DESIGN AND METHODS: A single-blinded randomized controlled trial design was used. One hundred and seven adult child caregivers of persons with dementia were randomly assigned to the NYUCI-AC treatment group who received individual and family counseling, support group referral, and ad hoc consultation or a contact control group. Participants were asked to complete structured assessments quarterly during Year 1 and every 6 months thereafter for a minimum of 2 years. RESULTS: Two thirds (66%) of adult child caregivers in the control condition admitted their parent to a residential care setting compared with 37% in the treatment condition. Logistic regression and Cox proportional hazards models found that NYUCI-AC participants were significantly less likely (p < .05) to admit their parents to a residential care setting and delayed their parents' time to admission significantly longer (228.36 days longer on average) than those in the control group. IMPLICATIONS: The multicomponent NYUCI-AC offered adult children the psychosocial support required to continue providing care to cognitively impaired parents at home.

PURPOSE: The stigma experienced by the family members of an individual with a stigmatized illness is defined by 3 dimensions: caregiver stigma, lay public stigma, and structural stigma. Research in the area of mental illness suggests that caregivers' perception of stigma is associated with increased burden. However, the effect of stigma on caregiver burden among those caring for a relative with Alzheimer's disease (AD) has yet to undergo theoretical and empirical testing. The aim of this study was to examine whether family stigma is a predictor of caregiver burden in the case of Alzheimer's disease. DESIGN AND METHODS: Structured face-to-face interviews were conducted with 185 adult child caregivers (75% female; mean age = 53 years) for persons with Alzheimer's disease. RESULTS: Caregiver stigma variables improved the prediction of caregiver burden by adding an additional 18% to the explained variance over and above the other covariates. The 2 caregiver stigma variables of shame and decreased involvement with caregiving were found to be the major contributing factors. IMPLICATIONS: Our findings show that caregiver stigma increases caregiver burden in the case of Alzheimer's disease. Using this knowledge, psychosocial interventions should target stigmatic beliefs in order to reduce caregiver burden.

BACKGROUND: Family caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients. METHODS: A randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes), caregiver burden and quality of life (secondary outcomes). Intention-to-treat as well as per protocol analyses were performed. RESULTS: A substantial number of caregivers (72/192) developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38) or in reducing depressive (randomization-by-time interaction coefficient = -1.40; 95% CI -3.91 to 1.10) or anxiety symptoms (randomization-by-time interaction coefficient = -0.55; 95% CI -1.59 to 0.49). The intervention did not reduce caregiver burden or their health related quality of life. CONCLUSION: This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial if provided in a more concentrated dose, when applied for therapeutic purposes or targeted towards subgroups of caregivers. TRIAL REGISTRATION: Controlled-Trials.com ISRCTN90163486.

BACKGROUND: Current research fails to capture the temporal dynamics of chronic disease in favor of cross-sectional snapshots of symptoms and outcomes. OBJECTIVE: The aim of this study was to estimate the effects of comprehensive psychosocial support on trajectories of spouse caregivers' well-being related to the nursing home placement transition. METHOD: Data from the New York University Caregiver Intervention, a randomized controlled trial of a comprehensive support program for spouse caregivers of persons with Alzheimer's disease, were utilized. A convenience sample of 406 spouse caregivers of community-dwelling persons with Alzheimer's disease was enrolled over a 9.5-year period in an Alzheimer's disease research center in New York City. Outcome measures, including the Zarit Burden Inventory and Geriatric Depression Scale, were used to assess the differential effects of nursing home placement and of the intervention on spouse caregivers. In-person interviews of spouse caregivers took place every 4 months during the first year of participation and every 6 months thereafter for up to 16 years; 385 caregivers provided sufficient follow-up data for all analyses. RESULTS: Longitudinal models found that wives were more likely than husbands to indicate reductions in burden in the months after placement in an institution. Wives also reported greater decreases in depressive symptoms after placement in an institution when compared with husbands. DISCUSSION: The inclusion of transitions and health trajectories in a randomized controlled trial offers an intriguing picture of how comprehensive psychosocial interventions can help families navigate the challenges of chronic disease care. The results also indicate how advances in nursing science can facilitate future research in the modeling of trajectories and transitions in the dementia care context