York University Caregiver Intervention Research Articles

WHAT MATTERS TO CHINESE AND KOREAN DEMENTIA CAREGIVERS: INFORMING THE CULTURAL ADAPTATION OF THE NYUCI-ES PROGRAM

Abstract Family caregivers of persons with dementia (PWD) undertake an extensive amount of care and many are challenged by heavy caregiving burden and their own health problems. The New York University Caregiver Intervention (NYUCI) program has demonstrated effectiveness in multiple studies among largely Caucasian samples in improving the wellbeing of caregivers of PWD by decreasing their levels of depression and stress and improving self-reported health. As two large Asian immigrant population in the U.S., Korean and Chinese American caregivers of PWD have unique challenges impacted by their cultural background. However, there are limited studies on what can be done to support them in a culturally sensitive way. The current study aims to inform the cultural adaptation of the program for Chinese and Korean caregivers with multiple chronic conditions by exploring their perspectives to understand their unique challenges, unmet needs, and the best ways to support them in caregiving and engage them in selfcare. We interviewed 14 Chinese and 11 Korean caregivers living in the New York Metropolitan Area. We compared themes mentioned by both groups and found that cultural beliefs profoundly impact their perceptions of dementia and caregiving, their way of utilizing social and family support, and understanding of self-care and counselling services. Caregivers are facing and addressing new challenges during and after the Pandemic, providing insights into how we can use technology and telehealth to assist them in caregiving and coordinating support from others. Our findings provided implications to culturally adapt the NYUCI program to culturally diverse populations.

Feasibility, acceptability and potential helpfulness of the PROACTIVE intervention in Flanders, Belgium: A survey study.

This study aimed to explore the feasibility of a Flemish adaptation of the New York University Caregiver Intervention (i.e., PROACTIVE intervention) modifying the recruitment and intervention content for informal caregivers of people with early cognitive decline, and across different subgroups. A feasibility study is necessary in order to reduce research waste for intervention adaptation and evaluation. Researchers constructed, tested, and sent out a survey consisting of 43 questions on the following topics: awareness of symptoms of early cognitive decline, levels of cognitive performance using the updated Cognitive Performance Scale (CPS2), acceptability, and potential helpfulness of the intervention, and sociodemographic characteristics. Quantitative data were analyzed using descriptive statistics and logistic regression with SAS 9.4©. Qualitative data were analyzed using an inductive content analysis. A total of 463 informal caregivers completed the survey (mean age 58.8 ± 11.8, 83.6% female). Among them, 230 respondents who cared for people with cognitive decline indicated they would probably or certainly participate in the study. Identified factors influencing the recruitment were cognition, co-habitation, education, and employment status. Over half of the target caregivers indicated almost all services from the intervention could satisfy their needs. A majority perceived the PROACTIVE intervention would be helpful (69.4%), especially the CPS2 = 3 (76.1%) and CPS2 = 4 (74.1%) subgroups. The recruitment of target participants for a subsequent RCT evaluation study is feasible, and identified associated factors should be considered during the recruitment process. The PROACTIVE intervention and core components except 'peer-group participation' were perceived as helpful by most caregivers. The CPS2 = 3-4 subgroups were most accepting of the intervention and were most likely to benefit from the intervention.

EVIDENCE-DRIVEN PROGRAMS IN THE HEALTHCARE SETTING: HOW CAREGIVERS CAN BENEFIT

How do family caregivers who interface with the healthcare system benefit from evidence-driven programs designed to support them? Education, training, and care coordination programs have all been found to significantly improve the well- being of caregivers. These programs include Operation Family Caregiver; Caring For You, Caring For Me; BRI Care Consultation; the New York University Caregiver Intervention; and patient and family advisory councils. Healthcare systems that host, translate and scale these programs make them more readily accessible for patients and their families, staff, and the larger community. Further, there is legislation, including the CARE Act, which recognizes the key role a family caregiver provides as a partner in their love one’s care. The CARE Act, now enacted in 36 states, states that family caregivers must be identified in the medical record and provided with the necessary resources to be able to care for their loved one after a hospital stay.

FAMILIES: an effective healthcare intervention for caregivers of community dwelling people living with dementia

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.

Comparative Effectiveness of 2 Interventions for Hispanic Caregivers of Persons with Dementia.

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). 1:1 randomized pragmatic trial. New York City. Informal Hispanic caregivers of persons with dementia (N=221; mean age 58.2, 82.8% female, 63.3% adult children, 31.7% spouses). 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. 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). 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. 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.

Medicaid Savings From The New York University Caregiver Intervention for Families with Dementia.

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. 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. 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. 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.

External Validity of the New York University Caregiver Intervention: Key Caregiver Outcomes Across Multiple Demonstration Projects.

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.

Northern Manhattan Hispanic Caregiver Intervention Effectiveness Study: protocol of a pragmatic randomised trial comparing the effectiveness of two established interventions for informal caregivers of persons with dementia

IntroductionThe prevalence of dementia is increasing without a known cure, resulting in an increasing number of informal caregivers. Caring for a person with dementia results in increased stress and depressive...

Translating Training in the NYU Caregiver Intervention in Australia: Maintaining Fidelity and Meeting Graduate Standards in an Online Continuing Professional Education Setting

The aim of this study was to develop an Internet-based self-directed training program for Australian healthcare workers to facilitate learning and competence in delivery of a proven intervention for caregivers of people with dementia: The New York University Caregiver Intervention (NYUCI). The NYUCI is a nonpharmacological, multicomponent intervention for spousal caregivers. It is aimed at maintaining well-being by increasing social support and decreasing family discord, thereby delaying or avoiding nursing home placement of the person with dementia. Training in the NYUCI in the United States has, until now, been conducted in person to trainee practitioners. The Internet-based intervention was developed simultaneously for trainees in the U.S. and Australia. In Australia, due to population geography, community healthcare workers, who provide support to older adult caregivers of people with dementia, live and work in many regional and rural areas. Therefore, it was especially important to have online training available to make it possible to realize the health and economic benefits of using an existing evidence-based intervention. This study aimed to transfer knowledge of training in, and delivery of, the NYUCI for an Australian context and consumers. This article details the considerations given to contextual differences and to learners’ skillset differences in translating the NYUCI for Australia.

Estimating The Potential Cost Savings From The New York University Caregiver Intervention In Minnesota

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.

The Northern Manhattan Caregiver Intervention Project: a randomised trial testing the effectiveness of a dementia caregiver intervention in Hispanics in New York City

ObjectivesDementia prevalence and its burden on families are increasing. Caregivers of persons with dementia have more depression and stress than the general population. Several interventions have proven efficacy in decreasing...

Modeling Trajectories and Transitions

Current research fails to capture the temporal dynamics of chronic disease in favor of cross-sectional snapshots of symptoms and outcomes. 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. 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. 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. 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.

The process of family-centered counseling for caregivers of persons with dementia: barriers, facilitators and benefits

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. 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. 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. 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.

Can Counseling and Support Reduce Burden and Depressive Symptoms in Caregivers of People with Alzheimer's Disease During the Transition to Institutionalization? Results from the New York University Caregiver Intervention Study

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. 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. Outpatient research clinic in the New York City metropolitan area. Referred volunteer sample of 406 spouse caregivers of community-dwelling patients with AD enrolled over a 9.5-year period. Enhanced counseling and support consisting of six sessions of individual and family counseling, support group participation, and continuous availability of ad hoc telephone counseling. Outcome measures included burden (modified Zarit Burden Interview) and depressive symptoms (Geriatric Depression Scale). 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. 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.