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Objective: To determine the long-term effectiveness of comprehensive support and counseling for spouse-caregivers and families in postponing or preventing nursing home placement of patients with Alzheimer disease (AD).Design: Randomized controlled intervention study.Setting: Outpatient research clinic in the New York City metropolitan area.Participants: Referred, volunteer sample of 206 spouse-caregivers of AD patients who enrolled in the study during a 3 1/2-year period. All patients were living at home at baseline and had at least 1 relative living in the area.Intervention: Caregivers in the treatment group were provided with 6 sessions of individual and family counseling within 4 months of enrollment in the study and were required to join support groups. In addition, counselors were available for further counseling at any time.Main Outcome Measure: Time from enrollment of caregivers in the study to placement of the AD patients in a nursing home.Results: Using Kaplan-Meier survival analysis, we estimated that the median time (weighted average of estimates for male and female caregivers) from baseline to nursing home placement of AD patients was 329 days longer in the treatment group than in the control group (z=2.29; P=.02). The relative risk (RR) from a Cox proportional hazard model of nursing home placement (intent-to-treat estimate) after adjusting for caregiver sex, patient age, and patient income was 0.65 (95% confidence interval [CI], 0.45 to 0.94; P=.02), indicating that caregivers were approximately two thirds as likely to place their spouses in nursing homes at any point in time if they were in the treatment group than if they were in the control group. Treatment had the greatest effect on risk of placement for patients who were mildly demented (RR, 0.18; 95% CI, 0.04 to 0.77) or moderately demented (RR, 0.38; 95% CI, 0.17 to 0.82).Conclusions: A program of counseling and support can substantially increase the time spouse-caregivers are able to care for AD patients at home, particularly during the early to middle stages of dementia when nursing home placement is generally least appropriate. [ABSTRACT FROM AUTHOR]

Behavioral problems are among the most challenging aspects of caring for a person with Alzheimer's disease. A sample of 406 spouses-caregivers of patients with Alzheimer's disease was randomized to an active multicomponent counseling and support intervention condition or to a usual care condition. Caregivers reported on the frequency of troublesome patient behaviors and their reactions to them at baseline and at regular follow-up interviews. Random-effects regression models over the first 4 years after randomization revealed that, although the intervention did not affect the frequency of patient behavioral problems, it did significantly reduce caregivers' reaction ratings. Because caregiver appraisals have been found to mediate the impact of caregiving stress on depression and to predict nursing home placement rates, they deserve greater attention as an important target of intervention services. [ABSTRACT FROM AUTHOR]

The purpose of this study was to evaluate the efficacy of the Residential Care Transition Module, a six-session, psychosocial, and psychoeducational telehealth intervention for family caregivers of cognitively impaired relatives living in a residential long-term care setting. Eligible participants (including care recipients, regardless of time since admission) were randomized to treatment or usual care control conditions. Survey data were collected at baseline, 4 months, 8 months, and 12 months ( N = 240). Primary analytic outcomes included caregiver subjective stress (a stress process mechanism) and depressive symptoms (a measure of global well-being). Secondary analytic outcomes included secondary role strains, residential care stress, caregiver sense of competence, and self-efficacy (additional mechanisms of action). General linear models tested for the main effects of the intervention at 4 months, and longitudinal mixed models examined the 12-month effects of the intervention. Post hoc analyses also examined the influence of moderators. No significant differences between the treatment and control groups for any primary analytic outcome were apparent. Caregivers in the treatment group whose relatives were admitted to residential long-term care in the prior 3 months were more likely to indicate reductions in depressive symptoms over the first 4 months of participation. Over the 12-month study period, caregivers in the treatment group who were employed reported increased self-efficacy over time. The heterogeneity of dementia care requires a broader consideration of key contextual factors that may influence the efficacy of nonpharmacological interventions. Aligning measures with the preferences, goals, and values of dementia caregivers may further demonstrate the direct benefits of interventions such as the Residential Care Transition Module. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Background: Chinese and Korean Americans are among the fastest-growing minority groups in the US but face disparities in income and limited English proficiency, leading to health inequities in Alzheimer's disease and related dementias (ADRD) care., Objective: This study aims to understand cultural influences in ADRD care from the perspectives of Chinese and Korean American caregivers to inform culturally sensitive support for caregivers in Asian immigrant populations., Methods: We conducted a study that was part of a broader project aimed at informing the cultural adaptation of the NYU Caregiver Intervention-Enhanced Support (NYUCI-ES) program specifically for Chinese and Korean American caregivers managing multiple chronic conditions. In our interviews with 14 Chinese American and 11 Korean American caregivers, we focused on how their roles as primary caregivers were influenced by cultural and family expectations, the impact of caregiving on their personal and emotional well-being, and the specific barriers they face in accessing healthcare for themselves and their relatives with dementia., Results: Cultural beliefs and values significantly influenced the perceptions and utilization of support systems among Chinese and Korean American caregivers. Family stigma and adherence to cultural norms impacted their caregiving experiences. The study also highlighted the added burden during the pandemic and the potential benefits of telehealth and information technology in ADRD care., Conclusions: Developing culturally tailored, person-centered programs is crucial to meeting the unique needs of Chinese and Korean American caregivers. This research contributes to understanding and supporting this vulnerable population, promoting healthcare equity for ADRD patients and caregivers.

Objectives: In response to the needs of dementia caregivers during the COVID-19 pandemic, the NYU Langone Alzheimer's Disease and Related Disorders Family Support Program (FSP) quickly transitioned to providing most services online. To understand how dementia caregivers experienced FSP services after the switch to video telehealth, we conducted qualitative interviews of spouse or partner dementia caregivers., Participants: Ten participants were recruited from a convenience sample of dementia spouse or partner caregivers who used one or more online FSP services offered during the pandemic., Design: Caregivers engaged in semi-structured interviews held via videoconference between May and June 2020. Qualitative analysis of interviews was conducted according to the principles of framework analysis., Results: Caregivers reported high satisfaction with the FSP pre-pandemic and continued to feel supported when services were provided online. They transitioned to video telehealth services with little difficulty., Conclusions: While video telehealth is frequently cited as beneficial for those in rural communities, socioeconomically disadvantaged groups, or homebound individuals, our findings suggest that video telehealth is also advantageous for dementia caregivers, given their unique barriers, including lack of time due to caregiving responsibilities, lack of respite care for the person with dementia, and the additional burdens of travel time to access in-person services., (Copyright © 2022 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

This study sought to determine the perceived benefits of the Residential Care Transition Module (RCTM), a novel multi-component, psychoeducational/psychosocial, telehealth intervention for caregivers of cognitively impaired relatives living in residential long-term care (RLTC). Few support programs exist for these caregivers. Determining the intervention's mechanisms of benefit will provide actionable clinical and research information regarding which key features aspects RLTC and public health agencies should offer their families. We conducted semi-structured interviews with 30 purposively selected participants randomly assigned to receive the RCTM. Additionally, an open-ended survey question solicited feedback at 4 (n = 90), 8 (n = 79), and 12 months (n = 77). Available qualitative data were analyzed for thematic content. Participants endorsed 9 mechanisms of benefit. Six mechanisms were related to RCTM content: education dementia progression and dementia behavior management, personalized resource provision, strategies for communication and engagement with the care recipient (CR) and others, management of multiple roles, and relaxation exercises. Three mechanisms were related to coaching: emotional support, knowledgeability, and being a neutral third party. Common benefits attributed to RCTM included improvement in mood, caregiving confidence, and communication and interactions with CR and others. Using qualitative data and analyses, we discovered the most valued aspects of the RCTM intervention. These mechanisms of benefit have not been described in the literature. Notably, we were unable to detect mechanisms of benefit in a separate analysis utilizing quantitative data. Findings emphasize the importance of including qualitative measures in intervention research and selecting quantitative measures that reflect the intervention's real effects, if any., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The longitudinal study, "Couples Lived Experiences," focuses on whether and how relationship characteristics of older couples change with the cognitive decline of one member of the couple, and how these changes affect each individual's emotional and physical health outcomes. Until now, most psychosocial research in dementia has focused either on the person with dementia (PWD) or the caregiver separately. The previous literature examining relationship characteristics and their role in outcomes for the caregiver and PWD is scant and suffers from methodological issues that limit the understanding of which relationship characteristics most influence outcomes for caregivers and care-receivers and what other factors may mitigate or exacerbate their effects., Methods: We will enroll 300 dyads and collect information via online interviews of each member of the couple, every 6 months for 3 years. Relationship characteristics will be measured with a set of short, well-validated, and reliable self-report measures, plus the newly developed "Partnership Approach Questionnaire." Outcomes include global quality of life, subjective physical health, mental health (depression and anxiety), and status change (transitions in levels of care; i.e., placement in a nursing home). Longitudinal data will be used to investigate how relationship characteristics are affected by cognitive, functional, and behavioral changes, and the impact of these changes on health outcomes. Qualitative data will also be collected to enrich the interpretation of results of quantitative analyses., Discussion: Psychosocial interventions have demonstrated effectiveness in promoting the wellbeing of PWD and their caregivers. The knowledge gained from this study can lead to the development or enhancement of targeted interventions for older couples that consider the impact of cognitive and functional decline on the relationship between members of a couple and thereby improve their wellbeing., Trial Registration: This study has been registered with ClinicalTrials.gov. ClinicalTrials.gov Identifier is: NCT04863495 ., (© 2021. The Author(s).)

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.

Objectives: Caregiving for a person with dementia (PWD) carries increased risk of poorer health and quality of life. Non-pharmacological interventions improve outcomes for caregivers of PWDs. We evaluated the efficacy of a modified New York University Caregiver Intervention (NYUCI), named FAMILIES, delivered to spousal and non-spousal caregivers of PWDs from diverse etiologies in a reduced number of sessions. Methods: Participants were 122 primary caregivers for community dwelling PWDs in Virginia. The intervention included two individual and four family/group counseling sessions that integrated dementia education, coping skills and behavioral management training, emotional support, and identification of family and community resources. Assessment of depression, caregiver well-being and burden, and caregiver reactions to the behavioral symptoms of dementia (BSD) were completed at baseline, the sixth session, and 6-month follow-up. Results: Symptoms of depression ( p < .001) and caregiver burden ( p = .001) and caregivers' capacity to effectively manage their reactions to BSD ( p = .003), significantly improved at the sixth session. Benefits were maintained at 6-month follow-up. Being married and female predicted improvement in caregiver burden; being male and living in a rural area predicted reduced risk of depression. Caregivers reported that the intervention was helpful and had a positive impact on the PWD. Conclusions: Modifications to the NYUCI did not diminish its efficacy. Caregivers in FAMILIES experienced improvements in depressive symptoms, caregiver burden, and their ability to effectively manage their reactions to BSD. Systemic support for implementing FAMILIES could have a broad impact on caregivers, PWDs, and the healthcare system.

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.

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: 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: ClinicalTrials.gov (NCT02915939, prospectively registered).

Background and Objectives: 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: 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: Among the entire sample, role conflict significantly ( p < .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: 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: 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: 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: 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: 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.

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.

The current project tested the feasibility and utility of the CARES® Dementia-Friendly Hospital™ (CDFH) program, a 4-module, online training program for nursing assistants (NAs) and allied hospital workers (AHWs) who provide care to individuals with dementia. A single group pretest/posttest design was used for 25 hospital NAs/AHWs, and quantitative and qualitative data were collected to determine whether NAs'/AHWs' knowledge of hospital-based dementia care significantly increased, and if CDFH was perceived as useful and acceptable. Dementia care knowledge increased significantly (p < 0.001). Open- and closed-ended data suggested that the delivery of online training to NAs/AHWs to enhance dementia care is feasible, useful, and efficient. Ongoing gaps in care exist for individuals with dementia in hospitals, and delivering robust training for NAs/AHWs may serve as an effective modality to enhance quality of dementia care in such settings. [Res Gerontol Nurs. 2017; 10(2):58-65.]., (Copyright 2017, SLACK Incorporated.)

Purpose of the Study: This study determined whether the NYU Caregiver Intervention for Adult Children (the NYUCI-AC) significantly reduced primary subjective stress for adult child caregivers of persons with dementia., Design and Methods: The NYUCI-AC was evaluated within a single-blinded randomized controlled trial. The sample included 107 adult child caregivers of persons with dementia (n = 54 assigned to the multicomponent treatment group; n = 53 assigned to a contact control group). Participants completed comprehensive assessments at baseline and at 4-month intervals during the first year and every 6 months thereafter. The focus of the current analysis was on the effects of the NYUCI-AC on change in primary subjective stress over 8, 12, and 18 months., Results: Individual growth curve models found that caregivers in the NYUCI-AC treatment condition indicated statistically significant (p < .05) linear declines in overall negative reactions to behavior problems over a 1-year period when compared with controls. Adult child caregivers in the NYUCI-AC also indicated greater decreases in negative reactions to disruptive behavior problems when compared with controls over 8, 12, and 18 months., Implications: The NYUCI-AC offered adult child caregivers counseling and support that improved their ability to manage their reactions to disruptive behaviors. This occurred despite the fact that other primary subjective stressors, such as role captivity and role overload, were not reduced., (© The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background/rationale: This report describes a quality improvement continuing medical education activity designed to enhance the recognition and treatment of residents with Alzheimer's disease (AD) or other dementias in skilled-nursing facilities (SNFs)., Methods: Charts were compared in 6 areas prior to and following (stages A and C) a live, faculty-led workshop (stage B). Four SNFs completed stages A (n = 67 residents) and B, and 3 SNFs completed stage C (n = 52 residents). All charts came from residents with AD or a diagnosis of dementia or dementia-like symptoms., Results/conclusion: The SNFs had >95% baseline performance in both the frequency of cognitive assessments and documented medication reviews. The percentage of residents who received a quality-of-life assessment and those who had a mental health care plan in place represent areas for improvement. As part of this activity, a toolkit was developed to help guide facilities and clinicians in instituting care improvements for residents with AD/dementia., (© The Author(s) 2015.)

Objectives: This study determined whether the NYU Caregiver Intervention for Adult Children (the NYUCI-AC) significantly reduced depressive symptoms and improved quality of life for adult child caregivers of persons with dementia., Methods: The NYUCI-AC was evaluated within a single-blinded randomized controlled trial. The sample included 107 adult child caregivers of persons with dementia (N = 54 assigned to the multi-component treatment group; N = 53 assigned to a contact control group). Participants completed comprehensive assessments every 4 months during the first year and every 6 months thereafter for at least 2 years and up to 3.79 years., Results: Individual growth curve models found that caregivers in the NYUCI-AC treatment condition indicated statistically significant (p <0.05) curvilinear decreases in symptoms of depression indicating withdrawal, apathy, and lack of vigor and increases in perceptions of overall quality of life over a 3-year period in comparison to control caregivers., Conclusions: The NYUCI-AC offered adult child caregivers the capacity, via individual and family counseling as well as ongoing support, to enhance their quality of life and overcome their social withdrawal and apathy over time. These findings lend additional support to the NYUCI as an evidence-based approach to support family caregivers of persons with dementia., (Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

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., (© The Author(s) 2012.)

No therapies are known to substantially alter the course of dementia and associated treatment costs. However, enhanced support services for caregivers of people with dementia have been shown to improve caregivers' capabilities and well-being and delay patients' institutionalization. Using a model that simulated disease progression, place of residence, and direct costs of care, we estimated the potential savings to Minnesota from offering the New York University Caregiver Intervention, a program of enhanced support services for spouse and adult child caregivers of community-dwelling people with dementia, to all eligible people in the state from 2010 to 2025. Results indicate that approximately 5 percent more people with dementia would remain in the community from year 3 (2013) on and that 19.3 percent fewer people with dementia would die in institutions over fifteen years. During those years Minnesota could save $996 million in direct care costs (with a range of nearly $100 million to $2.64 billion under worst- and best-case scenarios, respectively). These findings suggest that broader access to enhanced caregiver supports could produce a positive return on investment or be cost-effective--assuming widespread implementation, reasonable program costs, and substantial caregiver participation.

One of the most devastating impacts of Alzheimer's disease and related dementias is the toll on caregivers. Evidence from randomized clinical trials has demonstrated the effectiveness of providing psychosocial interventions for caregivers to lessen their burden. However, the implementation of such interventions in community settings has proved challenging. This case study describes outcomes of the implementation of an evidence-based intervention in a multisite program in Minnesota. Consistent with the original randomized clinical trial of the intervention, assessments of this program showed decreased depression and distress among caregivers. Participating in a greater number of caregiver counseling sessions was also associated with longer time to nursing home placement for the person with dementia. Some of the challenges in the community setting included having caregivers complete the full six counseling sessions and acquiring complete outcome data. Given the challenges faced in the community setting, web-based training for providers may be a cost-effective way to realize the maximum benefits of the intervention for vulnerable adults with dementia and their families.

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.

Background: Although extensive research exists on informal long-term care, little work has examined the clinical significance of transitions in family caregiving due to a lack of established clinical cut-points on key measures. The objectives of this study were to determine whether clinically significant changes in symptoms of burden and depression occur among caregivers within 12 months of nursing home admission (NHA) of their relatives with dementia, and to identify key predictors of clinically persistent burden and depression in the first year after institutionalization., Methods: Secondary longitudinal analysis of dementia caregivers were recruited from eight catchment areas in the United States with 6- and 12-month post-placement follow-up data. The sample included data on 1,610 dementia caregivers with pre- and six-month post-placement data and 1,116 with pre-placement, six-month, and 12-month post-placement data. Burden was measured with a modified version of the Zarit Burden Inventory. Depressive symptoms were assessed with the Geriatric Depression Scale., Results: Chi-square analyses found significant (P < .05) reductions in the number of caregivers who reported clinically significant burden and depressive symptoms after NHA compared to pre-placement. Logistic regression models revealed that wives and daughters were most likely to experience clinically persistent burden and husbands were most likely to experience clinically significant depression after NHA., Conclusions: In addition to suggesting that clinically significant decreases in caregiver burden and depression are likely to occur following institutionalization, the results reveal particular subsets of caregivers who are at continued risk of distress. Such findings can facilitate development of screening processes to identify families at-risk following institutionalization.

Background: Despite the high consistency of evidence in favor of person-centered care, little information is available on how person-centered and family-centered interventions are actually provided. The aim of this study is to gain insight into the provision of the effective New York University Caregiver Intervention (NYUCI) in order to enhance its implementation., Methods: This is a qualitative study using a grounded theory approach. Group interviews were carried out with three purposefully sampled counselors who had provided the NYUCI., Results: Six themes were identified: (1) family problems, (2) ways to deal with these family problems, (3) barriers encountered by counselors, (4) ways to deal with these barriers, (5) facilitators or rewards of being a counselor, and (6) perceived effectiveness.The problem categories were (a) conflicts within families; (b) past experiences and personality; and (c) daily living with dementia. Ways of helping caregivers deal with these problems included problem clarification from the perspectives of the key players. An important barrier was reluctance to be helped. This was dealt with by acknowledging caregivers' need for control over situations. Additional effects of participation in the NYUCI observed by the counselors were reduction of anger and awareness of more and new options for dealing with dementia., Conclusions: Person- or family-centered care offers new perspectives on problems that are seemingly unmanageable. We hypothesize that seeing new and more options is a direct effect of this person-centered counseling. This might be an important outcome to be measured in future studies.

Participant death is often observed in studies that examine predictors of events, such as hospitalization or institutionalization, in older adult populations. The Cox proportional hazards modeling of the target event, whereby death is treated as a censoring event, is the standard analysis in this competing risks situation. However, the assumption of noninformative censoring applied to a frequently occurring competing event like death may be invalid and complicate interpretation in terms of the probability of the event. Multiple cause-specific hazard (CSH) models can be estimated, but ambiguities may arise when interpreting covariate effects across multiple CSH models and in terms of the cumulative incidence function (CIF). Alternatively, one can model the proportional hazards of the subdistribution of the CIF and evaluate the covariate effects on the CIF directly. We examine and compare these two approaches with nursing home (NH) placement data from a randomized controlled trial of a counseling and support intervention for spouse-caregivers of patients with Alzheimer's disease. CSHs for NH placement (where death is treated as a censoring event) and death (where NH placement is treated as a censoring event) and subdistribution hazards of the CIF for NH placement are modeled separately. In the presence of multiple covariates, the intervention effect is significant in both approaches, but the interpretation of the covariate effects requires joint evaluation of all estimated models., ((c) 2009 John Wiley & Sons, Ltd.)

Prior research has yielded discrepant findings regarding change in caregiver burden or depressive symptoms after institutionalization of persons with dementia. However, earlier studies often included small postplacement samples. In samples of 1,610 and 1,116 dementia caregivers with up to 6 months' and 12 months' postplacement data, respectively, this study identified predictors of change in caregiver burden and depressive symptoms following nursing home admission. Descriptive analyses found that caregivers reported significant and considerable decreases in burden in the 6- and 12-month postplacement panels. A number of variables predicted increased burden and depressive symptoms in the 6- and 12-month postplacement panels. Preplacement measures of burden and depressive symptoms, site (Florida), overnight hospital use, and spousal relationship appear to result in impaired caregiver well-being following nursing home admission. Incorporating more specific measures of stress, considering the influence of health-related transitions, and coordinating clinical strategies that balance caregivers' needs for placement with sustainability of at-home care are important challenges for future research., ((c) 2009 APA, all rights reserved.)

Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms., Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly assessed with the Geriatric Depression Scale prior to and following bereavement. Random effects regression growth curve analyses examined the effects of treatment group and bereavement while controlling for other variables., Results: The death of the care recipient led to reductions in depressive symptoms for both caregiving groups. Enhanced support intervention led to lower depressive symptoms compared with controls both before and after bereavement. Post-bereavement group differences were stronger for caregivers of spouses who did not previously experience a nursing home placement. These caregivers maintained these differences for more than 1 year after bereavement. Caregivers who received the enhanced support intervention were more likely to show long-term patterns of fewer depressive symptoms before and after bereavement, suggesting resilience, whereas control caregivers were more likely to show chronic depressive symptoms before and after the death of their spouse., Implications: Caregiver intervention has the potential to alter the long-term course of the caregiving career. Such clinical strategies may also protect caregivers against chronic depressive symptoms that would otherwise persist long after caregiving ends.

Objective: To evaluate the effectiveness of a combination of cholinesterase inhibitor therapy for patients with Alzheimer disease (AD) and psychosocial intervention, for their spouse caregivers compared with drug treatment alone in three countries simultaneously., Design: Randomized controlled trial. Structured questionnaires were administered at baseline and at regular follow-up intervals for 24 months by independent raters blind to group assignment., Setting: Outpatient research clinics in New York City, U.S., Manchester, U.K. and Sydney, Australia., Participants: Volunteer sample of 158 spouse caregivers of community dwelling patients with AD., Interventions: Five sessions of individual and family counseling within 3 months of enrollment and continuous availability of ad hoc telephone counseling were provided for half the caregivers. Donepezil was prescribed for all patients., Main Outcome Measure: Depressive symptoms of spouse caregivers measured at intake and follow-up assessments for 24 months using Beck Depression Inventory (revised)., Results: Depression scores of caregivers who received counseling decreased over time, whereas the depression scores for caregivers who did not receive counseling increased. The benefit of the psychosocial intervention was significant after controlling for site, gender and country was not accounted for by antidepressant use and increased over 2 years even though the individual and family counseling sessions occurred in the first 3 months., Conclusion: Effective counseling and support interventions can reduce symptoms of depression in caregivers when patients are taking donepezil. Harmonized multinational psychosocial interventions are feasible. Combined drug and supportive care approaches to the management of people with AD should be a priority.

Objectives: To determine whether counseling and support reduce the burden and depressive symptoms of spouse caregivers of patients with Alzheimer's disease (AD) during the transition to institutionalization., Design: A randomized, controlled trial of an enhanced counseling and support program for spouse caregivers of persons with AD. Structured interviews were conducted with spouse caregivers at baseline, every 4 months during Year 1, and every 6 months thereafter for up to 16 years., Setting: Outpatient research clinic in the New York City metropolitan area., Participants: Referred volunteer sample of 406 spouse caregivers of community-dwelling patients with AD enrolled over a 9.5-year period., Intervention: Enhanced counseling and support consisting of six sessions of individual and family counseling, support group participation, and continuous availability of ad hoc telephone counseling., Measurements: Outcome measures included burden (modified Zarit Burden Interview) and depressive symptoms (Geriatric Depression Scale)., Results: Burden and depressive symptoms were significantly lower for caregivers in the treatment group than for controls receiving usual care at the time of and after institutionalization. Nursing home admission itself significantly reduced burden and depressive symptoms in the intervention and control groups., Conclusion: Institutionalization alone can reduce caregiver burden and depressive symptoms, but enhanced counseling provides additional long-term benefits. The results offer some of the first clinical evidence of the benefits of enhanced counseling during the transition to institutionalization for caregivers of people with AD.

Objective: The objective of this study was to determine the effects of counseling and support on the physical health of caregivers of spouses of people with Alzheimer disease., Methods: A randomized controlled trial, conducted between 1987 and 2006 at an outpatient research clinic in the New York City metropolitan area compared outcomes of psychosocial intervention to usual care. Structured questionnaires were administered at baseline and regular follow-ups. A referred volunteer sample of 406 spouse caregivers of community dwelling patients with Alzheimer disease enrolled over a 9.5-year period. Enhanced counseling and support consisted of six sessions of individual and family counseling, support group participation, and continuous availability of ad-hoc telephone counseling. Indicators of physical health included self-rated health (SRH) of caregivers and the number of reported illnesses., Results: Controlling for baseline SRH (mean: 7.24), intervention group caregivers had significantly better SRH than control group caregivers based upon model predicted mean scores four months after baseline (6.87 versus 7.21), and this significant difference was maintained for two years (6.70 versus 7.01). The effect of the intervention on SRH remained significant after controlling for the effects of patient death, nursing home placement, caregiver depressive symptoms and social support satisfaction. Similar benefits of intervention were found for number of illnesses., Conclusion: Counseling and support preserved SRH in vulnerable caregivers. Enhancing caregivers' social support, fostering more benign appraisals of stressors, and reducing depressive symptoms may yield indirect health benefits. Psychosocial intervention studies with biological measures of physical health outcomes are warranted.

Those who provide care at home for a spouse with Alzheimer's disease (AD) endure considerable challenges, including social isolation and increasing caregiving responsibilities. We examine the extent to which an intervention that helps spouse-caregivers mobilize their social support network, helps them better adapt to the caregiving role. We used detailed social support information collected from 200 spouse-caregivers participating in a randomized, controlled trial of enhanced social support services in the USA. Using random effects regression models, we found that individuals in the intervention group reported higher levels of satisfaction with their social support network over the first 5 years of the intervention than those in the support group. Higher levels of emotional support, more visits, and having more network members to whom they felt close were all individually predictive of longitudinal changes in social support network satisfaction. We conclude with a discussion of the importance of having psychological respite when caregivers spend their days in the home and are isolated.

The spouse caregivers of 406 patients with Alzheimer's disease were randomly assigned to an enhanced counseling and support intervention or to a usual care control condition. Structured interviews were conducted to assess changes in social support and psychosocial outcomes for the 312 caregivers who provided care in the home for at least 1 year. The number of support persons, satisfaction with the support network, and support persons' assistance with caregiving all increased significantly as a function of the intervention. Structural equation models indicated increased satisfaction with the social support network mediated a significant proportion of the intervention's impact on caregiver depression. A portion of this mediated effect was further mediated by changes in caregiver stress appraisals. Implications for strengthening intervention programs for spouse caregivers of individuals with Alzheimer's disease are discussed., ((c) 2006 APA)

Purpose: We examined the impact of caregiver neuroticism on longitudinal change in depression among spouse-caregivers of individuals with Alzheimer's disease receiving either enhanced psychosocial treatment or usual care. We were interested in whether high levels of caregiver neuroticism would lead to a diminished response to the enhanced treatment and whether neuroticism affected the longitudinal course of caregiver depression regardless of intervention., Design and Methods: We analyzed data from the NYU Spouse-Caregiver Intervention Study, which randomly assigned caregivers either to an enhanced treatment group that received a comprehensive intervention with counseling, support, and consultation, or to a usual-care control group. The present study analyzed data from 320 caregivers, 160 in each group, who completed the NEO questionnaire. We used random-effects growth curve modeling to examine changes in depression in the first year after intake, examining possible effects of neuroticism on the course of caregiver depression and on response to intervention., Results: Caregivers high in neuroticism showed a worse longitudinal course of depression compared with those low in neuroticism in both the enhanced treatment and usual-care groups after we adjusted for baseline depression as a covariate. Caregivers showed benefits from the enhanced treatment compared with usual care, regardless of neuroticism score. However, caregivers low in neuroticism responded to treatment with declining levels of depression, whereas caregivers high in neuroticism maintained their baseline level of depression., Implications: Caregiver neuroticism is a risk factor for increased caregiver depression over time. High neuroticism does not preclude successful caregiver intervention with a highly individualized intervention like ours, but expectations of outcome should be different than for caregivers low in neuroticism. Future studies should investigate the relationship between neuroticism and response to less individualized interventions and the impact of other personality characteristics on response to treatment., (Copyright 2004 The Gerontological Society of America)

Objective: The long-term effect of counseling and support on symptoms of depression was examined in spouse-caregivers of patients with Alzheimer's disease., Method: The participants were 406 spouse-caregivers of Alzheimer's disease patients who lived at home at baseline. The caregivers were randomly assigned to either a group receiving enhanced counseling and support treatment or a group receiving usual care (control group). Caregivers in the enhanced treatment group were provided with six sessions of individual and family counseling, agreed to join support groups 4 months after enrollment, and received ongoing ad hoc counseling. The Geriatric Depression Scale was administered at baseline and at regular follow-up intervals for as long as the caregiver participated in the study., Results: After baseline differences were controlled for, caregivers in the enhanced treatment group had significantly fewer depressive symptoms after the intervention than did the control subjects. These effects were sustained for 3.1 years after baseline, similar across gender and patient severity level, and sustained after nursing home placement or death of the patient., Conclusions: Counseling and support lead to sustained benefits in reducing depressive symptoms in spouse-caregivers of Alzheimer's disease patients and should be widely available to provide effective, evidence-based intervention for family caregivers.

This study examined whether baseline neuropsychological performance in elderly assessed at a research clinic could accurately predict subsequent decline to dementia. Logistic regression analyses were applied to (1) 213 nondemented elderly with a Global Deterioration Scale (GDS) score of 1, 2, or 3, of whom 74 (35%) subsequently declined to any diagnosis of dementia, and (2) a diagnostically more restricted subset of this sample (N = 179), of whom 56 (31%) declined to a diagnosis of probable Alzheimer's disease (AD). The mean follow-up intervals were 3.8 and 3.7 years, respectively. A small set of baseline neuropsychological measures (especially a Paragraph Delayed Recall Test) significantly differentiated decliners from nondecliners to dementia or AD, after accounting for the contribution of age, sex, education, follow-up interval, and the rating of global clinical status. When examined in combination with the other factors or alone, the cognitive tests produced reasonably high specificities (91%-97%) and sensitivities (73%-89%). Using the obtained regression model, a similar level of classification accuracy was replicated on an independent sample of 119 nondemented elderly. A subanalysis of the high-risk GDS 3 subgroup indicated that cut scores from the paragraph test distinguished nondecliners from decliners (overall accuracies 87%-91%), implying that this assessment may accurately predict future cognitive status in elderly with mild cognitive impairment.

Caregivers of Alzheimer's disease patients often suffer from depression. Using a longitudinal treatment/control study, we examined the effects of a comprehensive support program on depression in spouse-caregivers. This psychosocial intervention program treats the primary caregiver and family members over the entire course of the disease through individual and family counseling, the continuous availability of ad hoc counseling, and support group participation. In the first year after intake, the control group became increasingly more depressed, whereas the treatment group remained stable. By the eighth month, treated caregivers were significantly less depressed than those in the control group. These results suggest that enhancing long-term social support can have a significant impact on depression in caregivers.

Although mild progressive memory impairment is commonly associated with normal human aging, it is unclear whether this phenomenon can be explained by specific structural brain changes. In a research sample of 54 medically healthy and cognitively normal elderly persons (ages 55-87, x = 69.0 +/- 7.9), magnetic resonance imaging (MRI) was used to derive head-size-adjusted measurements of the hippocampal formation (HF) (dentate gyrus, hippocampus proper, alveus, fimbria, subiculum), the superior temporal gyrus (STG), and the subarachnoid cerebrospinal fluid (CSF) (to estimate generalized cerebral atrophy). Subjects were administered tests of primary memory (digit span) and tests of secondary memory with immediate and delayed recall components (paragraph, paired associate, list recall; facial recognition). Separate composite scores for the immediate and delayed components were created by combining, with equal weighting, the subtests of each category. The WAIS vocabulary subtest was used as a control measure for language and intelligence. A highly significant correlation (P < 0.001), independent of age, gender, and generalized cerebral atrophy was found between HF size and delayed memory performance. No significant correlations were found between HF size and primary or immediate memory performance. STG size was not significantly correlated with any of the composite memory variables. These results suggest that HF atrophy may play an important independent role in contributing to the memory loss experienced by many aging adults.