Caregiver Program Research Articles

Design, Implementation and Evaluation of a Health Promotion Program for Family Caregivers of Chronic Mental Disorders: A Mixed Methods Study.

Family caregivers of patients with chronic mental disorders who are responsible for taking care of the patient face many problems that can endanger the psychosocial health of these people. This study was conducted to develop, implement, and evaluate a psychosocial health promotion program for family caregivers of patients with chronic mental disorders. This research is an exploratory sequential mixed-method study conducted using a qualitative-quantitative design. A qualitative study was conducted to explain the needs and psychosocial problems and the solution to improve the psychosocial health of family caregivers of patients with chronic mental disorders in two psychiatric care centers in Isfahan were conducted. Then the program was written based on Kern's programming development approach. In the quantitative stage, a part of the developed program was implemented as virtual group psychoeducation for 67 caregivers, and its impact on caregivers' burden of care was evaluated. The findings from the qualitative phase of the study led to the emergence of 3 main categories and the findings from the quantitative phase of the study indicated that the implementation of the compiled program causes a significant reduction in the burden of care in family caregivers of chronically mentally ill patients (p<0.05). The current program was prepared and developed using an evidence-based approach. Policymakers and members of the mental health team can take a valuable step toward reducing the care burden of family caregivers of chronic mental patients by using the content of the developed mental health promotion program.

Profiling early adopters of 'iSupport-Portugal': a country-specific version of a worldwide adapted digital support program for informal caregivers of people with dementia.

Informal caregivers are the backbone of dementia care. iSupport is a World Health Organization digital support program for caregivers of people with dementia (PwD) that has been culturally adapted in several countries. iSupport was previously assessed for its feasibility in Portugal, and this country-specific version is now being utilized as a remote measurement tool (RMT). It constitutes the first internationally developed iSupport platform that is technically and scientifically enhanced to collect data on sociodemographic, clinical, and psychosocial variables of dementia care dyads. This paper characterizes the early adopters of iSupport-Portugal and discusses its exploration as a RMT. Cross-sectional data were collected between February and July 2023 from users registering on isupport-portugal.pt. To characterize caregivers and PwD, eligibility was limited to unpaid caregivers assisting community dwelling PwD (n = 173). Data were collected through self-administered instruments in users' accounts. Caregivers completed psychosocial measures on burden, anxiety, depression, quality of life, desire to institutionalize and usage of community services. Textual data on caregivers' needs underwent content analysis. Among the early adopters of iSupport-Portugal (n = 365), 52.3% were informal caregivers, while 44.7% were health/social care professionals or others. Most caregivers were female (82.7%), middle-aged (M 51.7 years), highly educated (M 15.3 years) and supporting a parent (70.5%). Caregivers cared for a median of 24 h/week and 60.8% lived with the PwD. Neuropsychiatric symptoms were reported for 94.1% of PwD, who scored as moderately dependent (Barthel Index: M 14.0). Significant burden was reported by 88.4% of caregivers (≥21 on ZBI-22). Among caregivers scoring borderline or abnormal (≥8 on HADS) for anxiety, depression, or both (75.5%), 30.8% sought mental health counseling. Caregivers supporting a PwD not using community services scored higher on anxiety (p = 0.003), and depression (p = 0.009). Text data revealed unmet practical, emotional, and informational needs. iSupport-Portugal has garnered fair initial interest from caregivers, particularly from those who are children, highly educated, and employed. Early adopters exhibited significant psychological distress, and both practical and emotional needs, which contrast with limited use of support services for themselves and the PwD. iSupport-Portugal shows promise for descriptive research on care dyads, particularly among newer generations of caregivers.

Understanding Multilevel Factors Related to Retention Among the Direct Care Workforce: Incorporating Lessons Learned in Considering Innovative Interventions.

This article explores how broad, contextual factors may be influential in the retention of direct care workers (DCWs; i.e., entry-level caregivers) who provide vital support to patients in healthcare settings. We reflect on lessons learned from an evaluation of a multisite intervention to improve retention among DCWs employed primarily in hospital settings at three health systems. We evaluated a multitiered program for entry-level caregivers that included a risk assessment, a 4-day curriculum, and follow-up sessions, as well as workforce coaching at the three health systems. As part of our evaluation, we collected data on roughly 3,000 DCWs from the three health systems; the information included hiring date, any transfer date, and any termination date for each new DCW, as well as demographic information, position characteristics, and termination status and reasons for any termination. In addition, we collected information about organizational characteristics, including staffing and number of employees. We also conducted interviews with 56 DCWs and 21 staff members who implemented a retention program across each of the three health systems and remotely conducted virtual observations of the curriculum sessions at each system. Although the program we evaluated focused on individual-level factors that may affect retention, our findings revealed other broader, contextual challenges faced by DCWs that they said would have an impact on their willingness to stay in their positions. These challenges included (1) job-related factors including limited compensation, aspects of the job itself, and the inability to advance in one's position; (2) health system challenges including the mission, policies, staffing, and organizational culture; and (3) external factors including federal policies and the ongoing COVID-19 pandemic. As the direct care workforce continues to grow, interventions to improve retention should consider the interconnectedness of these multilevel factors rather than solely individual-level factors. In addition, further research is needed to rigorously evaluate any potential intervention and consider how such an approach can target DCWs in hospital-based settings who are most affected by the multilevel challenges identified. Finally, any intervention to improve retention must be also aligned to ensure equity, especially in this population of low-wage DCWs, many of whom are marginalized women and individuals of color.

Psychological challenges of female caregivers in providing home-based palliative care for patients with advanced cancer: A descriptive-exploratory study.

Family caregivers play a key role in providing care for patients with advanced cancer. Most of this care burden is shouldered by female caregivers in the family. Compared to their male counterparts, female caregivers face numerous psychological challenges in the process of caregiving. The aim of this study was to identify the psychological challenges of female caregivers in providing care to patients with advanced cancer. This descriptive-exploratory study began with purposive sampling method in 2020-2021 in Isfahan and continued until data saturation was reached. Twenty semi-structured interviews were conducted with female caregivers of patients with advanced cancer and 18 more interviews with providers of health services and supportive-palliative care. The interviews were recorded, transcribed, and analyzed using conventional qualitative content analysis. The results were classified into three categories. The first category was psychological reactions that included the four subcategories of depression and anxiety, aggression, mental exhaustion, and death anxiety; the second category was psychological needs which included the three subcategories of need for professional counseling, need for emotional support, and need to prepare for mourning; and the third category was mental occupations which consisted of the two subcategories of feeling of regret and remorse. Assessment of psychological challenges is a prerequisite for planning psychological interventions, providing high-quality care, and improving quality of life and satisfaction of caregivers. The findings of this study will contribute to the development of guidelines and empowerment programs for female caregivers providing palliative care.

Memory Loss and Missteps: Investigating Fall Risks in Alzheimer's and Dementia Patients.

Degenerative diseases such as Alzheimer's disease and dementia are significant health concerns among older adults in the United States, contributing substantially to the high incidence of falls in this population. This study aims to investigate the incidence and prevalence of falls among older adults diagnosed with Alzheimer's disease and dementia and explore the association between these conditions and the occurrence of traumatic brain injuries (TBIs). A retrospective cohort study was conducted using data from 17,000 older adults aged 65 and above, arrived at the hospital with fall related injuries, obtained from the TriNetX network at Virginia Commonwealth University Health System (VCUHS) between January 1, 2019, and December 31, 2023. Data included demographic information, diagnosis codes (ICD-10), and details on falls, Alzheimer's disease, dementia, and TBIs. Descriptive statistics and logistic regression analyses were performed using TriNetX analytical tools. Older adults with Alzheimer's disease (incidence proportion: 3.11%, prevalence: 4.81%) and dementia (incidence proportion: 12.46%, prevalence: 17.06%) had a significantly higher incidence of falls compared to those without these conditions. Females showed a slightly higher incidence of falls than males. Logistic regression analysis indicated that patients with Alzheimer's disease had a reduced risk of TBIs (OR = 0.765, 95% CI: 0.588-0.996, p = 0.047), while those with unspecified dementia had an increased risk (OR = 1.161, 95% CI: 1.002-1.346, p = 0.047). Our study reveals a higher risk of falls and traumatic brain injuries (TBIs) in older adults with dementia compared to those with Alzheimer's disease. These findings underscore the need for targeted fall prevention strategies and educational programs for caregivers.

"This can certainly work…": stakeholder perspectives of the feasibility of a caregiver-led training program for caregivers of children with cerebral palsy in a rural setting in Malawi.

Caregiver training is a key component of rehabilitation for children with complex lifelong disabilities such as cerebral palsy. However critical shortages of therapists in low- and middle-income countries like Malawi, reduce access to therapy. Introducing expert caregivers to assist with the provision of basic training on the condition for fellow caregivers offers a potential solution. However, there is a paucity of evidence regarding the implementation of such strategies in low-resource settings. The aim of this study was to explore perspectives of stakeholders regarding the feasibility of implementing a caregiver-led and delivered training program for caregivers of children with cerebral palsy in Malawi. Over 5 days in January 2023, a caregiver-led training program, the "Malamulele Onward Carer-to-Carer Training Program," was conducted in Blantyre, Malawi. A South African master trainer traveled to Malawi and delivered the program to potential stakeholders including caregivers of children with cerebral palsy; physiotherapists; and community-based organization representatives. Stakeholder perspectives regarding the acceptability, demand, practicality and adaptation of the program were obtained through a combination of focus group discussions, in-depth interviews, and daily field notes. Data from the focus group discussions and in-depth interviews were analyzed using thematic analysis. The caregiver-led training program was deemed acceptable despite two areas identified as potential areas of concern; that the expert caregivers may cross practice boundaries and that their fellow caregivers may look down upon them. A demand for this program was expressed because of perceived relative advantages and relevance to caregiver needs. Participants indicated that the intervention could be easily delivered using local materials, absorbed and supported by existing community structures. A caregiver-led training program offers an innovative way of supporting caregivers of children with complex disabilities such as cerebral palsy in low-resource settings. The stakeholder engagement demonstrated the positive perspectives of all stakeholders. The areas for modification and adaptation highlighted by the stakeholders will be useful in strengthening the implementation of the program in Malawi.

A randomized waitlist control trial of the Make the Connection® online program for caregivers of infants and young children: Study protocol.

A positive child-caregiver relationship is one of the strongest determinants of child health and development, yet many caregivers report challenges in establishing a positive relationship with their child. For over 20 years, Make the Connection® (MTC), an evidence-based parenting program, has been delivered in-person by child-caring professionals to over 120,000 parents to improve positive parenting behaviours and attitudes. Recently, MTC has been adapted into a 'direct to caregiver' online platform to increase scalability and accessibility. The purpose of this study is to evaluate the effectiveness of the online modality of MTC in increasing parenting knowledge, attitudes, and the perceived relationship with their child, and to understand barriers and facilitators to its access. Two hundred caregivers with children aged 0-3 years old will be recruited through Public Health agencies in Ontario, Canada. Participants will be randomly placed in the intervention or waitlist control group. Both groups will complete a battery of questionnaires at study enrolment and 8 weeks later. The intervention group will receive the MTC online program during the 8-week period, while the waitlist group will receive the program after an 8-week wait. The study questionnaires will address demographic information, caregivers' relational attitudes towards their infant, self-competence in their caregiver role, depression, and caregiver stress, as well as caregivers' and infants' emotion regulation. Results from this study will add critical knowledge to the development, scaling, and roll out of the MTC online program, thus increasing its capacity to reach a greater number of families. The study was registered with ClinicalTrials.gov on 15 March 2023 (NCT05770414).

Educational Program for Caregivers Regarding Elderly Abuse in Port Said City

Educational Program for Caregivers Regarding Elderly Abuse in Port Said City

The personality traits of family caregivers of individuals with dementia: The effects of social anxiety, social phobia, and caregiving hours

Background and Aim of Study: Caring for individuals afflicted with dementia engenders substantial demands and responsibilities for caregivers, encompassing the extensive time allocation devoted to the care recipient on a daily basis. Furthermore, the psychological attributes inherent in informal caregivers, encompassing traits like social anxiety and social phobia, can exert an influence on the evolution of their personal dynamics over time. This phenomenon potentially yields repercussions for how caregivers offer guidance and assistance to elderly individuals grappling with dementia, particularly in relation to their fundamental daily activities and instrumental tasks. The aim of the study: to analyze the predictive effect of social anxiety and social phobia as psychological characteristics of caregivers, along with the impact of caregiving hours as caregiving-related characteristics, on caregivers’ personality. Material and Methods: This observational and cross-sectional study comprised a sample of 97 participants serving as primary family caregivers completed a sociodemographic questionnaire, the Big Five Inventory, the Anxiety Scale in Social Interaction Situations, and the Social Phobia Scale. Results: The findings revealed that social phobia demonstrated significant predictive power for Openness (β=-0.199; p=0.016) and Extraversion (β=-0.136; p=0.024), whereas the daily caregiving hours negatively affected Conscientiousness (β=-0.145; p=0.011), Agreeableness (β=-0.137; p=0.040), Openness (β=-0.210; p=0.011), and Extraversion (β=-0.175; p=0.003). Conversely, social anxiety did not prove to be a significant variable. Conclusions: The presence of social phobia or higher hours devoted to caregiving for individuals with dementia are factors that impact personality functioning and should be considered in the planning of support programs for family caregivers.

STAR CAREGIVERS: IMPLEMENTATION OF AN EVIDENCE-BASED PROGRAM IN REAL-WORLD SETTINGS

Abstract Evidence-based non-pharmacological community programs to improve care of older adults with dementia are growing. However, many programs have historically been tested in research studies that fail to reach medically underserved populations or communities with unique service needs. STAR-Caregivers (STAR-C, also known as STAR-Community Consultants) is an evidence-based psychosocial support and skill training program designed to teach family caregivers how to identify and increase pleasant events, improve communication, and use behavioral problem-solving skills to reduce the problems experienced by their family member with dementia while improving quality of life for both persons in the caregiver-care receiver dyad. Since its original randomized controlled trial in 2005, STAR-C has been translated in a variety of real-world settings, including in Area Agencies on Aging throughout Oregon and Washington state. This symposium describes three recent new translation efforts: (1) implementation of STAR-C as a virtual training program (STAR-VTF) for caregivers of persons with dementia who are part of the Kaiser Permanente Washington health care system; (2) cultural adaptation of STAR-VTF for Latino caregivers, and (3) incorporation of STAR-C into a largely rural community care setting in Illinois during the COVID-19 pandemic using Amazon Echo technology to conduct telehealth community dyad STAR-C sessions and connect clients to supplemental services. Each presenter will discuss the dementia care needs in their respective populations, the challenges encountered in translation of STAR-C to serve target caregiving dyads, and lessons learned regarding treatment effectiveness and program sustainability.

ENHANCED SUPPORT FOR CHINESE AND KOREAN AMERICAN DEMENTIA CAREGIVERS: INSIGHT FROM SERVICE PROVIDERS

Abstract As members of two large Asian immigrant populations in the U.S., Korean and Chinese American family caregivers of persons with dementia (PWD) have unique challenges impacted by their cultural background. Many of them prefer to and are relying on social services providers who speak the same language as they do for support and assistance. As part of the project to inform the cultural adaptation of NYU Caregiver Intervention-Enhanced Support (NYUCI-ES) program for Chinese and Korean American caregivers with multiple chronic conditions, we explored the perspectives of 13 Chinese and 12 Korean services providers (physicians and social service staff). During focus group discussions, services providers shared their perspectives on care challenges facing these populations, including challenges in initiating advanced care planning, family conflict in decision making and caregiving, insufficient community resources, staffing shortage associated with the pandemic and some care aides’ stigmatic beliefs about providing dementia care. We identified nuances in the following aspects: utilization of home health aides’ help, attitudes towards diagnosis and education, approaches to selfcare, preferences for engagement settings, trust-building, and family involvement. For instance, Korean services providers highlighted Korean caregivers’ strong preference for home health aides of the same gender as PWD and having individual rather than group session to learn about dementia. What we found from services providers largely echoed our findings from family caregivers but also provided unique insights from their work experiences. These findings will inform cultural adaptation of the content of the NYUCI to improve its applicability to Chinese and Korean American caregivers.

INITIAL EFFICACY OF THE SAVVY CAREGIVER PROGRAM IN KOREAN AMERICAN DEMENTIA CAREGIVERS

Abstract Dementia caregivers in ethnic minority communities have often been excluded from access to caregiver interventions and their benefits because of linguistic and cultural barriers. In pursuit of equal treatments for all, it is imperative to make evidence-based interventions available and accessible to ethnic minority dementia caregivers, and linguistic and cultural adaptation is indispensable for reaching out to them. In the present study, we adapted the Savvy Caregiver Program for Korean American dementia caregivers and tested its initial efficacy for reducing depressive symptoms. This pilot intervention was delivered to 13 Korean American dementia caregivers by two Savvy-certified Korean-speaking trainers. Over the 6-week period of program implementation, there was no attrition (session completion rate = 98%). All participants’ depressive symptoms were reduced at completion of the program, and the level of reduction was statistically significant, with a large effect size (t = 8.64, p &amp;lt; .001, Cohen’s d = .89). Although patterns of change did vary among participants, the score difference between post-intervention and 6-month follow-up was not statistically significant (t = .74, p = .47). The program played a significant role in reducing depressive symptoms in this pilot sample of Korean American dementia caregivers, and this benefit was sustained at the 6-month follow-up. Along with the program’s notably high retention rate, its efficacy suggests strong unmet needs for psychoeducational programs among Korean American dementia caregivers. The study offers promise for sharing the therapeutic benefit of the Savvy program with linguistic minorities when delivered in a linguistically, culturally appropriate manner.

DIFFERENCES IN CAREGIVING BURDEN ACROSS THE INTERSECTIONALITY OF RACE AND GENDER

Abstract Caregivers may be at different risks of various types of burdens by virtue of their gender and racial/ethnic status. This study explored the differences in caregiving burdens among caregivers to people with dementia across the intersectionality of race and gender. Using Round 5 (conducted in 2015) and Round 7 (conducted in 2017) of the National Study of Caregiving and National Health and Aging Trends Study data, the study examined differences in caregiver burdens across and within different gender and racial/ethnic groups, within the realms of financial, emotional, and physical burdens. The sample consisted of 1,206 caregivers who provided services to Medicare beneficiaries. Logistic regressions were performed to assess the three types of burdens each subgroup was experiencing. Results indicated that within the intersectionality framework, compared to White female caregivers, Black male caregivers were 3.3 times (95% confidence interval [CI] 1.77-6.22) more likely to experience financial burden, and Black female caregivers were 54% (95% CI 0.28-0.76) less likely to experience physical burden. Surprisingly, compared to White female caregivers, all the other groups were 37% (95% CI 0.41-0.95) to 71% (95% CI 0.15-0.56) less likely to have emotional burden. The findings highlighted that Black male caregivers are experiencing financial burden and White female caregivers are experiencing emotional burden disproportionately. To develop effective interventions and programs for dementia caregivers, a special focus should be put on monitoring the differences in the types of burdens that the above-mentioned population subgroups experience.

THE EFFECTIVENESS OF A CASE MANAGEMENT PROGRAM FOR FAMILY CAREGIVERS OF PERSONS WITH MCI OR EARLY STAGE DEMENTIA

Abstract This study examined the effectiveness of a case management program for family caregivers of persons with mild cognitive impairment, early to mild dementia. Using a quasi-experimental study design, we recruited family caregiver and care recipient dyads from memory clinics in Taiwan. We randomly assigned the dyads into experimental groups (n= 38 dyads) or control groups (n= 33 dyads). The experimental group participants received case manager services over a four-month period, while those in the control group received general health education. Data were collected at three time points: baseline, the 4th and 6th months for both groups. The results of the generalized estimating equation revealed that in the fourth month, the experimental group exhibited a declined depression (β = −3.74, p &amp;lt; .001) and increased use of social resources (β = 1.014, p = .045). In the sixth month, the depression of caregivers declined further (β = −3.186, p = .002), whereas their use of social resources showed no significant difference. This study illuminates the feasibility and efficacy of using a case management model to support caregivers encountered in memory clinics. Findings are promising to suggest the need to call for more education and supports available at clinics to prepare and assist caregivers who have a relative of at the early stage of cognitive impairment or dementia.

UTILIZING TECHNOLOGY AND INTEGRATED SERVICES TO SUPPORT FAMILY CAREGIVERS IN RURAL COMMUNITIES

Abstract CRIS Healthy Aging is a non-profit organization in East Central Illinois that serves older adults who are often lower-income and/or living in a rural community. CRIS’ mission is to keep older adults safe, healthy, and independent in their own homes for as long as possible. CRIS’ Memory Care Program (MCP) expanded upon the evidence-based STAR-Caregivers (STAR-C) program. In addition to administering traditional STAR-C training, CRIS provides caregiving dyads with more integrated services, including (1) implementation of technology like the Amazon Alexa Echo Show devices and OneClick video conferencing for older adults, (2) peer support and education opportunities including Memory Café, Stress-Busting Program for Family Caregivers, and the NCOA Aging Mastery Program, as well as (3) providing financial assistance, respite, and additional aging services. In the past 4 years, the CRIS MCP, funded by a federal ADPI grant through ACL, has served approximately 200 caregiving dyads, and collected pre- and post-treatment survey data from a cohort of 52. Those served consistently reported that the STAR-C program was extremely helpful for them. Most importantly, caregivers reported significant decreases in behavior frequency (t=14.75, p&amp;lt;0.01) and severity of personal stress response (t-21.51, p&amp;lt;0.01). Compared to baseline, caregivers also reported feeling less resentful (p=0.005), less socially isolated (p&amp;gt;0.05, however qualitative data supports downward trend), and saw improvements to quality of life (t=-1.77, p&amp;lt;0.042). Ongoing barriers to service in these rural and low-income communities include a global pandemic, misinformation, fear of the unknown, family unwillingness to participate, and financial concerns.

CHALLENGES OF E-INTERVENTION RESEARCH: LESSONS FROM THE ISUPPORT FOR DEMENTIA-PT FEASIBILITY STUDIES

Abstract E-interventions have become popular in delivering healthcare services, offering benefits such as increased accessibility and scalability. However, they also present ethical, technological, and research-related challenges. This poster aims to identify challenges of e-intervention research by analyzing feasibility studies of “iSupport for Dementia-PT”, an online training and support program for informal dementia caregivers (IDC) culturally adapted to Portugal from the original version by the Word Health Organization. A mixed-methods study collected data on user satisfaction and requirements for the program’s contents and interface through focus groups and usability test sessions with IDC (N=17) and health/social support professionals (N=13). A subsequent pilot study followed a mixed-methods experimental parallel between-group design with two arms (iSupport, N=21 and e-book, N=21). Ethical challenges unearthed by both studies included data privacy, e-consent reliability, equity in accessing e-health interventions, and e-health literacy. Challenging methodological decisions for an RCT protocol included defining criteria for a per protocol analysis in the context of a self-help e-intervention, timing for post-test or follow-up assessments, managing attrition, and the implications of resorting to online outcome measurements. The feasibility studies suggest that iSupport for Dementia-PT is a promising resource to support informal dementia caregivers. However, innovation is required in e-intervention research as replicating conventional procedures and methods have shown to be inadequate. Guidelines are needed on how to address the ethical, technological, and research-related challenges in e-intervention research.

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.

THE CONFIDENCE FINANCIAL WELL-BEING INTERVENTION FOR LATINO FAMILY CAREGIVERS: PILOT STUDY RESULTS

Abstract Family caregivers to people living with dementia encounter an average of $10,697 per year in out-of-pocket caregiving costs that exert long-term material and psychological consequences. Latino caregivers encounter higher out-of-pocket caregiving costs relative to their income than non-Latino caregivers. There is an unmet need for programs to alleviate financial hardship among caregivers, particularly those culturally tailored to Latino caregivers. The Confidently Navigating Financial Decisions and Enhancing Financial Wellbeing in Dementia Caregiving (CONFIDENCE) program draws on successful intervention approaches identified within nursing and gerontological research to manage out-of-pocket caregiving costs and prevent financial hardship among caregivers to persons living with dementia. Between May 2022 and February 2023, CONFIDENCE was delivered to six cohorts of Latino caregivers at an academic-service center. This symposium will discuss preliminary pilot study results. Donna Benton, PhD, will describe how the intervention was developed with a community advisory council to ensure a culturally-tailored program. Kylie Meyer, PhD, will share the preliminary efficacy of the intervention based on interim analyses of outcomes, including caregiver resourcefulness and financial strain. Alexander Gonzales, BSG, will describe challenges related to recruitment and retention, and considers registration and fidelity data to understand possible causes of low attendance. Lastly, Susanna Mage, PhD(c), MA, will present the findings from the preliminary evaluation of the program to examine the acceptability, including participant satisfaction surveys and one-on-one interviews. Initial success of the pilot phase suggests opportunities for future efficacy testing. If efficacious, CONFIDENCE could help alleviate financial hardship experienced by family caregivers to persons living with dementia.

ADVANCED CARE PLANNING: LEVERAGING PARTNERSHIPS TO IMPROVE STATE-WIDE DISSEMINATION

Abstract Rowan-Virtua School of Osteopathic Medicine, The New Jersey Institute for Successful Aging (NJISA), in collaboration with the New Jersey Division of Aging Services (DoAS) and Respecting Choices, implemented a state-wide project training workforce professionals in Advanced Care Planning (ACP) conversations with older adults. The concept: proactively leverage the long-term care management relationships in community-based, high-touch programs. NJISA identified Respecting Choices, an evidenced-based program approved by the Administration for Community Living. Respecting Choices offers standardized certification for ACP facilitators and instructors, paving a pathway for workforce sustainability. To achieve state-wide penetration, NJISA partnered with NJ DoAS to target staff and professionals serving the state aging network. NJ DoAS provided access to county-level case managers serving the Jersey Assistance for Community Caregiving (JACC) program, Program of All-Inclusive Care for the Elderly (PACE) nurses and social workers, and NJ DoAS staff. Also included in training efforts were staff from select senior affordable housing sites. With funding support through the New Jersey Health Foundation, NJISA and Respecting Choices offered virtual, live training course for certification of First Steps ACP facilitators and instructors and Design and Implementation for state aging networks, and ACP Instructors. NJ DoAS modified the electronic documentation system utilized by JACC staff to capture on-going ACP conversations and outcomes. Despite barriers and mid-course corrections, training totals include (30) certified ACP Facilitators, (3) leaders for Design and Implementation, and (5) certified ACP Instructors. Response to curriculum was positive; participants indicating greater confidence navigating ACP conversations. Future plans to continue dissemination have been discussed.

EMERGING TECHNOLOGY-BASED INTERVENTIONS TO SUPPORT FAMILY CAREGIVERS

Abstract There are 53 million family caregivers in the U.S., most of whom experience difficulty coordinating care, health and mental health decline, social isolation, and loneliness. Furthermore, accessing community support services remains challenging. This gap in access can create a significant threat to caregivers’ wellbeing and quality of life. The need to develop innovative interventions to support family caregivers is urgent. This symposium will describe the potential of leveraging emerging technology-based interventions to support family caregivers. Speaker one will outline considerations for design and development of social engagement interventions for caregivers delivered via video-conferencing platforms. Speaker two will describe the development and initial testing of a touchscreen mobile application that supports communication between people living with dementia and their caregivers to promote person-centered care. Speaker three will describe the human-centered design of a digital health solution to improve symptom management in advanced cancer care for older adults, emphasizing specific strategies to incorporate evidence-based principles of digital inclusivity. Speaker four will present findings from a proof of concept study examining the acceptability of a virtual respite program for caregivers of individuals with dementia. Speaker five will explore the potential for crowdsourced mapping technologies to support caregivers of people living with dementia. The discussant will tie together themes, offer recommendations for future intervention research with family caregivers, and discuss implications of emerging technologies on practice, policy, and research.