Dementia Caregivers Research Articles

DEMENTIA INTERVENTION STAFF AND CAREGIVER PERSPECTIVES ON THE DELIVERY OF ADS PLUS

Abstract Interventions targeting persons living with dementia (PLWDs) provide an optimal touchpoint in the service delivery continuum for addressing the growing unmet needs of unpaid/family dementia caregivers. Services such as Adult Day Services (ADS) that generally target PLWDs can be enhanced by embedding an intervention that specifically targets informal caregivers. In a trial evaluating the ADS Plus intervention, open-ended feedback from ADS intervention staff and participants provided insights to improve the administrative, programmatic, and user experience of ADS Plus. Drawing on individual qualitative interviews (n=24), we conducted a thematic analysis revealing insights into the critical implementation factors supporting the effective delivery of ADS Plus. Identified themes included: 1) the relational, or person-centered, nature of the ADS Plus program, 2) the role of learning throughout implementation, 3) the influence of administrative structure on program delivery, and 4) contributors to the acceptability of ADS Plus. Our findings suggest that caregivers draw on multiple supports but that individually tailored supports for dementia care management must address the emotional needs of caregivers through relational intervention models. The effective delivery of ADS Plus was facilitated by perceived intervention benefits to caregivers, robust yet reasonable training for intervention staff, and the opportunity for adaptability in program delivery.

HEALTH INFORMATION–SEEKING BEHAVIORS, CONFIDENCE, AND CHALLENGES AMONG FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA

Abstract Family caregivers play a significant role in providing care for their loved ones with dementia, including communication with healthcare providers (HCP), treatment decision-making, and care coordination. These tasks require family caregivers’ ability to seek, manage, and interpret health information they have found or received during and outside clinical encounters. This study examined which sources family caregivers use for seeking dementia care information, how trustworthy and reliable they find these sources, and information seeking confidence and challenges. A survey designed to understand family caregivers’ information seeking was completed by 36 participants who provided at least 10 hours of dementia care weekly (mean age 63.4; 83% female). About 80% reported using the Internet to look for dementia information, and less than 20% used a smartphone app to exchange their loved one’s medical information with HCP through a protected portal. While family caregivers entrusted HCP, pharmacists, and dementia-related organizations as sources of dementia information, they were skeptical of radio and TV as sources of credible information. Other information sources were identified, including Alzheimer’s Association, support groups, books/documentaries, and research journals. Approximately 50% reported concerns about the quality of dementia-related information; 45% experienced difficulties accessing the information they needed; 44% sensed frustration while searching for dementia-related information; and 40% had difficulty understanding the information found. There should be efforts to develop strategies that help dementia caregivers better identify credible information sources to increase confidence and reduce the stress and burden of acquiring reliable information necessary to care for their loved ones.

IT’S OVERWHELMING FOR EVERYBODY: EXPERIENCES OF DEMENTIA CAREGIVERS WHO AREN’T CLOSE FAMILY

Abstract One in three people with Alzheimer’s or other dementias lives alone, without a spouse/partner or nearby children (i.e., is aging solo). Friends, neighbors, and extended family often assist with tasks that preserve independence, but most dementia caregiving literature, and theory, to date focuses on spousal or parent/child dyads for whom reciprocity, indebtedness and self-interest are common motivators. This study seeks to address this knowledge gap. Design: Semi-structured interviews with caregivers of adults with cognitive impairment or dementia who were not the caregivers’ spouses or parents. Hybrid inductive/deductive thematic analysis incorporating social exchange and stress-coping theories. Results: We interviewed 11 caregivers (100% female; age 54-85, mean 71; 91% white, 9% black; 27% friend; 27% church congregant; 27% sibling or in-law; 18% neighbor). Caregivers described altruism, empathy, and, in cases of extended family, duty as motivators to provide care for acquaintances with dementia. Caregivers who themselves lacked close family identified with their care recipient’s vulnerability and the possibility of needing similar care someday. Non-family caregivers described feeling unprepared and unqualified to make legal, financial, and guardianship decisions and looked to care recipients’ distant family, health care providers, and religious leaders to guide decisions that require balancing care recipients’ safety and autonomy, such as moving to a nursing home. Conclusion: Dementia caregiving outside spouse or parent/child dyads can produce practical and emotional challenges for caregivers who are not immediate family. These caregivers may benefit from guidance about practical and ethical decisions in the absence of immediate family decision makers.

BUILDING THE COLLABORATIVE COMMUNITY-ACADEMIC TEAM, DESIGNING OBJECTIVES, AND GETTING FUNDED

Abstract Having attended the Former Dementia Caregiver Re-Entry Initiative since 2019, its benefits were readily apparent but two limitations were identified: 1) two facilitators (i.e., Wolfe and Fairbanks) cannot serve the millions of Bereaved Dementia Caregivers in the US alone and 2) members have primarily been non-Hispanic White. These realizations inspired efforts to bring the group to more Bereaved Dementia Caregivers. The present community-created model of helping Bereaved Dementia Caregivers deserved community-integrated leadership if that model was to be effectively adapted and disseminated. Our team’s ambition is to bring the group to racially and ethnically minoritized Bereaved Dementia Caregivers, broadly. However, we felt that we could most effectively do this in stages. Rather than trying to figure out how to make the model fit for all people, we homed in on African Americans, with whom we had many local ties. We also took a step back (at the behest of Ms. Frazier) to not only ask about how to adapt the model for a need we assumed existed, but also to explore the strengths of African American communities and ask if unmet needs existed. This model had the benefits of intellectual humility, respect for the persons we were working with, and strengthened the value of our funded research (i.e., even if we found there weren’t unmet needs, we would be able to learn of strengths that we might be able to share with other communities who do have unmet needs).

APPLYING TIME-VARYING EFFECT MODELING TO EXAMINE DAILY VARIATION IN SUICIDAL IDEATION AMONG DEMENTIA CAREGIVERS

Abstract Emerging evidence suggests that caregivers may experience high rates of suicidal ideation. However, relatively little is known about daily contextual factors, including day-to-day depression and anxiety-related symptoms, that increase the severity of suicidal ideation over time. The purpose of this study was to apply time-varying effect modeling (TVEM) to examine daily depression and anxiety symptoms leading up to an individual’s highest suicidal ideation score within a span of 14 days in a sample of community-dwelling ADRD caregivers. The intercept-only model revealed an increase in the mean scores of daily suicidal ideation four days leading up to an individual’s highest score. Additionally, there was a significant decrease four days after the highest suicidal ideation point. The relationship between depression and daily suicidal ideation was significant 1-day leading up to the highest suicidal ideation score. Similar relationships were observed with daily anxiety as a time-varying predictor in a separate model. The results from this study suggest that suicidal ideation can vary between days, with depression and anxiety influencing the intensity of the slope leading to and following an individual’s highest suicidal ideation score. Examining suicidal ideation trajectories over time and factors associated with varying severity can help inform targeted interventions to support dementia caregivers and mitigate the risk of severe psychological distress associated with dementia caregiving.

PSYCHOSOCIAL RESOURCES IN THE CONTEXT OF VULNERABILITY AMONG OLDER ADULTS: IMPLICATIONS FOR WELL-BEING

Abstract Social ties and mastery may buffer detrimental effects of stressful life circumstances and vulnerability as individuals age. The purpose of this symposium is to understand the role of psychosocial resources for multiple dimensions of well-being across several age-related contexts. Luong et al. examined social ties’ effects on moving into senior housing using a burst design, finding that social ties were less helpful in the beginning of the move but regained beneficial effects on well-being later. Kinkade and Fuller examined the role of social integration on the longitudinal effects of the widowhood transition for well-being, concluding that increased social integration had protective impacts on depression and functional health among widows compared to non-widows. Birditt et al. assessed the implications of positive activities and social interactions among dementia caregivers using ecological momentary assessments. Positive activities and positive interactions with care recipients were associated with lower levels of daily burden and greater positive affect especially among caregivers who reported high levels of burden. Ryan examined spouses’ psychosocial characteristics on partners’ well-being and whether they varied by cognitive status of the partner. She found that spouses’ positive support from children amidst other negative psychosocial experiences was protective for their partner’s life satisfaction. Sherman found that self-esteem for mid-life and older women was associated with higher mastery and lower constraints beliefs and that both were mediated by frequency of self-objectification. Together, these papers highlight the importance of psychosocial resources for well-being as individuals as they age and face new or on-going challenges.

THE NIH STAGE MODEL AND STUDY EXAMPLES OF EARLY STAGES IN DEMENTIA CARE INTERVENTION DEVELOPMENT RESEARCH

Abstract The NIH’s Stage Model provides a common language to facilitate discussion of intervention development research. According to NIH Stage Model (2022), “an examination of the mechanisms of behavior change or the principles underlying an intervention is encouraged by the NIH Stage Model in every Stage of behavioral intervention development.” The five papers in this symposium focus on early-stage intervention development by refinement, adaptation and pilot testing (Stage 1) related to dementia and palliative care (PC) clinical trials. The first paper is a cluster trial of a PC education program for nurses (N=23) in 10 assisted living communities that tested the mechanism of staff self-efficacy in increases in advance care planning discussions with family members of residents living with dementia. The second paper is a clinical trial that tested the feasibility of Companion Robots in live-alone Korean-American older adults (N=30) to determine which features help improve health behaviors (e.g. medication adherence, daily exercises). The third paper is a single-site clinical trial pilot study developed with stakeholders which tested the feasibility of a palliative care community health worker support program for hospitalized minoritized persons living with dementia and their caregivers. The fourth paper adapts an evidence-based e-PainSupport intervention for use with dementia caregivers to report patient pain and administration of analgesics. The fifth paper is a protocol to test the feasibility and acceptability of a culturally sensitive caregiver peer support program (Pair2Care) in current (n=15) and trained former (n=15) African-American dementia caregivers. The discussant will highlight ways to improve clinical trial mechanisms.

COGNITIVE BEHAVIORAL AND VIRTUAL REALITY TREATMENTS FOR INSOMNIA (CBTI AND IVR): OFF-LABEL IMPACT ON COGNITION

Abstract Chronic insomnia (CI) is common in mid-to-late life and associated with hyperarousal and impaired cognition and mood. CBTi improves sleep and may also improve cognition, arousal and mood but evidence for these latter outcomes is limited. We examined these outcomes across 3 studies with different delivery platforms (telehealth, digital, VR), dosages (2 sessions, 4 sessions), and (primarily) mid-to-older CI populations (fibromyalgia, dementia caregivers). Study 1 compared 8-week CBTi vs sleep hygiene in women with fibromyalgia (n=43, Mage=44.45). Study 2 piloted 4-session web-based CBTi in caregivers (n=5, Mage=62.40). Study 3 piloted 4-session iVR (n=18, Mage=36.45). Participants completed 2-week daily diaries pre/post treatment (sleep onset latency-SOL; wake after sleep onset-WASO; total sleep time-TST) and Insomnia Severity Index-ISI. Other measures included: study 1(arousal/heart rate variability-RMSDNN), studies 1 and 3(Wisconsin Card Sort Test-WCST, Stroop), study 2(Cognitive Failures Questionnaire-CFQ, Beck Depression Inventory-BDI-II, Perceived Stress Scale). Group x time interactions (study 1) and within-group pre/post differences were examined. CBTi improved sleep across studies (ps<.05). Study 1 found and study 3 trended toward improved cognitive flexibility (WCST %perseverative errors-t(14)=2.65, p=.019 and t(10)=1.76, p=.055, respectively). Study 1 found improved attention and processing speed [Stroop reaction time(RT)-congruent trials-t(14)=2.59, p=.023], inhibition (Stroop RT-incongruent trials-t(14)=2.43, p=.031), and arousal [increased RMSDNN; F(1,41)=4.87, p=.03]. Study 2 found improved subjective cognition-CFQ (t(4)=2.44, p=.04), arousal-RMSDNN (t(4)=2.09, p=.05), and depression-BDI-II (t(4)=2.89, p=.02). CBTi improved sleep, cognition, arousal and mood in mid-to-older CI populations. Research using randomization, active controls, and follow-ups is needed to delineate temporality and explore sleep’s mechanistic contribution to cognition and other “off-label” outcomes.

ALASKA NATIVE DEMENTIA CAREGIVERS AND THE INCREASING NEED FOR CULTURALLY SAFE RESOURCES

Abstract With the rate of dementia increasing among Alaska Native people and the tribal health system ill-equipped to meet the challenges associated with dementia care, there is an urgent need to better understand cultural perspectives on dementia caregiving and what states and communities can do to support their caregivers. Despite the fact caring for others is a value and cultural practice for Indigenous communities, and caregivers tend to report fewer challenges and barriers related to care, they still experience barriers and challenges. Guided by Kleinman’s explanatory model of illness, a qualitative, the aim of this study was to gain insight on Alaska Native caregiver experiences in caring for someone living with dementia in communities across Alaska. 21 interviews with Alaska Native dementia caregivers in rural and urban communities were completed. Despite being innovative and resourceful in providing care, caregivers reported the high cost of care, inadequate training of health care providers, and the paucity of culturally safe caregiver training, education, and resources are especially concerning and need to be addressed in a timely fashion. Caregivers in this study recommended the development of basic educational materials to be aware of dementia, its stages, and the available supports, as well as caregiver support and respite services. The recommendations from this study focus on outreach and education for caregivers to improve their access to education, training, and support to reduce isolation, increase their dementia knowledge, expand their awareness of ancillary resources, and inform help-seeking decisions.

FAMILY CAREGIVERS’ REFLECTIONS ON FAMILY SUPPORT AND PREPAREDNESS FOR END-OF-LIFE CAREGIVING

Abstract Family caregivers often report not having the knowledge or skills to provide care needed at their care receiver’s end of life (EoL), leaving them vulnerable to emotional, psychological, physical, and financial stress. These stressors may be due to increasingly complex caregiving responsibilities, difficult medical decisions, and anticipatory grief. Studies have also found a higher incidence of adverse effects among dementia caregivers. Few studies have examined how family support is associated with preparedness for EoL caregiving. Thus, the purpose of this study was to explore family caregivers’ feelings of preparedness and family-member support for EoL caregiving, comparing responses between dementia care providers with all other caregivers. A sample of family caregivers were recruited to complete an online, self-report survey. Open-ended questions were included to explore caregivers’ feelings of preparedness and family support. Of all participants, 206 family caregivers responded to the open-ended questions. Nearly 40% (n=79) of these caregivers were providing care to a family member with Alzheimer’s disease or related dementia. Qualitative methods were used to analyze data, develop a coding scheme, and identify themes. Findings suggest that most family caregivers are providing care without adequate help, support, or communication from other family members. This lack of support seems to leave dementia caregivers feeling less prepared and more frustrated than other caregivers. Our findings highlight the importance of family communication about advance care planning and caregiving responsibilities to promote family caregiver preparedness and well-being, and effective care and quality of life for an individual at the end of their life.

THE QUALITY OF DAY SCALE AND THE LIVING WELL INVENTORY: TWO NEW MEASURES FOR INDIVIDUALS WITH DEMENTIA AND CAREGIVERS

Abstract Background Differences in adaptive strategies used by individuals living with dementia have the potential to impact wellbeing. Two new measures were developed using human-centered design to capture daily adaptive strategies and outcomes. The Living Well Inventory for Dementia (LWI-D) and the Quality of Day Scale (QODS) capture important aspects of wellbeing that illuminate options for care and support. Purpose: To provide results from the initial evaluation of the LWI-D and the QODS for face validity, content validity and user acceptability. Methods Acceptability and feasibility testing was conducted with a sample of 17 community-dwelling individuals with early stage dementia (MOCA scores 12-30). After measure optimization, a second pilot test was conducted with 30 dyads (persons living with dementia and family caregivers) in community and residential settings. Results Persons with dementia can use and accurately interpret the QODS, preferring a version with graphic icons. Of the 31 items on the development version of the LWI-D, 17 items were acceptable, meaningful, and easily answered. Additional items yielded meaningful qualitative responses but needed minor revision. Some participants disliked the Likert-type response format, and new administration guidelines were used for the second pilot. Additional outcomes include convergent validity between the LWI-D and the QODS with measures of positive affect-balance, quality of life and wellbeing. Conclusion The LWI-D and the QODS are rigorously developed promising measures that warrant further testing and may enhance the ability to a) identify strengths in living well with dementia and b) identify and test news interventions to bolster care and support.

Individualized Coordination and Empowerment for Care Partners of Persons with Dementia (ICECaP): Study rationale and protocol

The majority of care for >10 million older adults with dementia (PWD) in the United States depends on at least on 11 million unpaid care partners (CPs). CPs are at greater risk of adverse physical, psychological, and cognitive health outcomes relative to non-caregiving peers. The goal of this paper is to establish the rationale, design, and protocol for a pilot randomized control trial to test the efficacy of the CP-focused intervention, ICECaP: Individualized Coordination and Empowerment for Care Partners of Persons with Dementia. ICECaP involves the assignment of a trained dementia care coordinator to a CP. The care coordinator maintains at least monthly contact with the CP with hybrid delivery (in-person, phone, e-mail, and video calls) and provides individualized support with care coordination for the CP navigating the PWD's care in a complex healthcare system, as well as supportive counseling, psychoeducation, and skills training for the CP. This trial will compare outcomes from baseline to 12-months among CPs who receive ICECaP versus routine care (controls). Outcomes include CP depression, burden, anxiety, and quality of life; CPs' reactions to the behavioral symptoms of dementia; and use of support services for the PWD. This trial will also assess mechanisms of intervention efficacy including changes in CP dementia knowledge, caregiving preparedness, self-efficacy, and optimism. Publication of this intervention protocol will benefit other dementia care teams seeking to support CPs and PWDs.

PREPARING FOR ADVANCING ILLNESS AND END OF LIFE WITH DEMENTIA

Abstract Dementia involves coping with advancing illness that involves cognitive and functional decline. Also decision-making capacity diminishes, which implies that preparing for a future and taking opportunities to exercise individual and relational autonomy is particularly relevant in the case of dementia. Engaging the person with dementia and family caregivers meaningfully in formal or informal advance care planning conversations may require addressing specific challenges. Health care providers often lack time or are reluctant to broach these conversations. Often conversations are delayed even in institutional long-term care settings as residents, their family caregivers and care providers may all view advance care planning as uncomfortable and difficult to initiate. Special support for health care providers to develop skills, confidence and taking initiative is needed. This symposium presents about new, large qualitative and quantitative studies with contributions from the UK and Canada, and international work. It addresses preparing for an uncertain future through advance care planning and decision making about future care and treatment which may include conversations about the end of life. We present and evaluate tools to support the process across settings.

CHOICE TO PROVIDE CARE AND KNOWLEDGE OF DEMENTIA SYMPTOMS: IMPACT ON CAREGIVERS’ EXPERIENCES

Abstract As the population ages, understanding the needs of people with dementia and their caregivers becomes increasingly crucial. Caregivers have various experiences related to the rewards and challenges of choosing to provide care. This project investigates how caregivers’ choice to provide care for someone with dementia and their knowledge of dementia symptoms influence their caregiving experiences. The study employed a secondary data analysis from the National Alliance for Caregiving and the American Association of Retired Persons. Caregiving experiences were gauged using a 5-point Likert scale ranging from ’completely negative’ to ’completely positive’. Statistical analyses were conducted using descriptive statistics, chi-square tests, and ordinal logistic regression adjusting for covariates such as dementia stage, caregiver relationship, mental health, and caregiving attitude. Relative risks and 95% confidence intervals were estimated for interpretation using Stata/SE 18.0 with an a-priori significance level of p< 0.05. The study involves 927 caregivers, predominantly women (66.13%) aged 50 – 74. Caregivers who chose to provide care and recognized dementia symptoms were significantly more likely to report positive experiences (ARR= 1.38, p=< 0.001; ARR= 2.27, p=0.03) respectively. Caregivers who felt fulfilled or optimistic had positive experiences (ARR= 1.92, p< 0.001; ARR= 2.21, p< 0.001). Contrastingly, caregivers dealing with emotional stress or caring for relatives with moderate dementia were more likely to have a negative experience (ARR= 2.80, p< 0.001; ARR= 1.39, p=0.006). These findings highlight the importance of developing tailored nursing interventions to support caregivers’ conscious decision to provide care and increase caregivers’ knowledge, potentially enhancing the quality of life for caregivers.

A SYSTEMATIC REVIEW OF EFFECTIVENESS OF TECHNOLOGY INTERVENTIONS FOR PEOPLE WITH DEMENTIA AND INFORMAL CAREGIVERS

Abstract Objectives Most people with dementia live at home and get care from informal caregivers. To support people with dementia and informal caregivers, a series of technology interventions have been introduced and implemented. The aim of this study was to evaluate effectiveness of recent technology interventions. Method: A systematic literature search was carried out in 14 online databases and Google Scholar, covering articles published during January 2005 and January 2020. Over three hundred articles were identified, of which 23 met the inclusion criteria and were included in the review. Meta-analyses for characteristics of included studies were conducted. Results Most studies demonstrated that technology interventions had various benefits for both people with dementia and their informal caregivers living in the community. For informal caregivers, these interventions tend to improve their psychological conditions and provide useful help when caring for people with dementia. For people with dementia, these interventions have potential to improve their performance and mental conditions, and keep them safe at home, which could delay institutionalization and save financial costs. Conclusion Technologies can be used independently by people with dementia, to help them in positive psychological condition, and to maintain their basic social interaction should be developed. Technology interventions should be developed and selected according to the progression of dementia. More assessment studies using randomized controlled trails should be conducted, so that we can evaluate extant technology interventions more rigorously.

EMBRACING CULTURE AND DESIGNING AN INTERGENERATIONAL TRAINING PROGRAM TO SUPPORT LATINE ELDERS

Abstract Although there have been efforts to promote health equity and increase representational diversity in research, there is a gap in our understanding on how to integrate cultural considerations into the intervention design process. Dementia caregiving interventions too frequently lack prioritization and integration of community-directed and culturally appropriate inputs during intervention planning. Consequently, intervention fit among racial and ethnic populations is sometimes culturally incongruent and intervention acceptability in community settings is weakened. We conducted a formative analysis drawing from research team member memos, document review, World Cafes with Latine community residents, and group interviews with Latine organizational staff to understand the intervention development process of an intergenerational dementia training program to support elders within the Latine community. The design process integrated iterative periods of listening through data gathering, informing by applying learned information to the developing program, and affirming through validation. Our analysis demonstrates the need for a broad range of skills and capacity to facilitate effective intervention design (language mastery among key research team members, program design skills, listening, relationship building).

PEER SUPPORT FOR CAREGIVERS OF AFRICAN AMERICANS LIVING WITH DEMENTIA: A PHASE 1 BEHAVIORAL INTERVENTION PROTOCOL

Abstract African American caregivers of older adults living with Alzheimer’s disease or a related dementia are at high risk for physical, spiritual, and psychosocial challenges. Peer mentorship, a relationship-centered person-to-person approach may reduce healthcare decision-making burden among African American caregivers through cultural tailoring by promoting oral traditions, personal contact, and storytelling. The purpose of this Stage 1 intervention study is to use a stakeholder-informed approach in further developing and pilot testing the co-created Peer Support for Caregivers of African Americans Living with Alzheimer’s Disease and Related Dementias (Pair2Care), a culturally sensitive caregiver peer support program. Pair2Care feasibility and acceptability will be evaluated in current (n=15) and trained former (n=15) African American Alzheimer’s and related dementia caregivers. Pair2Care will be deemed feasible and acceptable by evaluating eligibility criteria, recruitment and retention data, protocol adherence, satisfaction, and feedback on program appropriateness for broader dissemination. Preliminary intervention outcomes of caregiver anxiety, depression, quality-of-life, social support, self-efficacy for surrogate decision-making, and intent to use palliative care or hospice services will be assessed to evaluate intervention effectiveness. At 6 months as compared to baseline, current caregivers will report less anxiety and depression, improved quality-of-life, social support, and self-efficacy for surrogate decision-making, as well as intent to use palliative care or hospice services as part of healthcare and advance care planning decision- making. Pair2Care poses an innovative strategy with the potential to address advance care planning and healthcare decision-making, a significant health disparity problem and thereby promote health equity.

MULTIMETHOD COMMUNITY-BASED DEMENTIA CARE EDUCATION TO EMPOWER CARE PARTNERS AND IMPROVE WELLNESS

Abstract Inspired by the Medicare Cognitive Assessment and Care Plan Services visit, we describe an Age-Friendly 4Ms curriculum developed to empower informal dementia-care-partners to understand dementia, develop skills to communicate and work with people living with dementia (PLWD), and plan for the future with dementia. Curriculum was developed by an interdisciplinary team and included the integration of evidence-based approaches to care, such as the Positive Approach® to Care model. Through 4 interactive workshops (Understanding Dementia-related Brain Changes, Understanding Behaviors as a Form of Communication, Resources for Dementia Caregivers, Planning for the Future with Dementia) we introduced and had care partners process and practice material to help them navigate everyday challenges faced by PLWD with the aim of assisting them to find opportunities to help improve quality of life with the disease for both themselves and their PLWD. We reached a total of 146 attendees in 3 rural and suburban communities in Central Pennsylvania. Fifty-nine (40.4%) people attended 1 session, 39 (26.7%) people attended 2 sessions, 22 (15.1%) people attended 3 sessions, and 26 (17.8%) people attended all 4 sessions. Across all four sessions, more than 80% of attendees reported knowledge and skill gains, and most attendees reported meeting session objectives. Final evaluation results suggest attendees wanted a way to stay informed, stay connected, and remain supported by the program.

UNTANGLING THE MODEL MINORITY STEREOTYPE: PROMOTING HEALTH EQUITY AMONG ASIAN AMERICAN OLDER ADULTS

Abstract The “model minority” stereotype portrays Asian Americans (AAs) as a monolithic group with common traits, e.g., high levels of education and income, and better health status. Five studies in this symposium used multiple data sources and provided rich information to untangling this stereotype. The first study highlighted racial/ethnic disparities in help-seeking behaviors among Americans with subjective cognitive decline, revealing that AAPIs exhibit the lowest likelihood of seeking help for cognitive problems. The second study examined the degree to which socioeconomic disparity contributes to functional impairment among older AAs relative to other racial/ethnic groups, revealing that AAs fare worst in the burden of functional impairment due to education disparity. The third paper explored the cultural adaptation of the NYUCI for Chinese and Korean dementia caregivers, showing that cultural beliefs have a profound effect on caregivers’ views of dementia and caregiving, their use of social and family support, and their understanding of self-care and counseling services. The fourth study assessed factors linked to depressive symptoms among older Southeast AAs, revealing that Vietnamese Americans have significantly more depressive symptoms than Indonesian and Filipino Americans. Resilience and age are negatively related to depressive symptoms, while greater family conflict and inability to speak English fluently are positively associated with depressive symptoms. The fifth study used a large longitudinal survey on older Chinese Americans and demonstrated that higher acculturation levels are associated with a more rapid decline in depression and a slower decline in activities of daily living but are not related to long-term cognitive changes.

CHARACTERIZING CAREGIVER NEGLECT IN OLDER PERSONS WITH DEMENTIA: OPERATIONAL DEFINITIONS AND RISK FACTORS

Abstract Neglect by caregivers, a combination of behaviors through acts of omission or commission, is one of the most widespread forms of elder mistreatment. Examining varying definitions and thresholds of caregiver neglect may yield insights to inform intervention development. Our data were drawn from 244 dyads of racially/ethnically diverse dementia caregivers (CG) and care-recipients (CR). Informed by prior research, we developed three definitional thresholds of caregiver neglect: (1) CR’s needs were unmet by CG (least restrictive); (2) CR’s needs were unmet by CG and there was no additional informal care (moderate restrictive); and (3) CR’s needs were unmet by CG and there was no additional informal or formal care (most restrictive). Variables selected for multivariate logistic regression models examining predictors of neglect were based on significance in bivariate analysis (p< 0.10). One-week prevalence of caregiver neglect varied according to the three thresholds (43% to 11%). Sociodemographic characteristics of neglect differed across thresholds in bivariate analyses. The caregiver being male (OR=4.1, 95%CI=1.68-10.53) and being African American (OR= 2.12, 95%CI=1.01-4.54) was significantly associated with greater risk of neglect but only in the model predicting the least restrictive neglect. In models predicting moderate and most restrictive neglect, greater CG social support was associated with lower risk of neglect (OR=0.95, 95%CI=0.90-0.99; OR=0.93, 95%CI=0.89-0.98; respectively). Our findings indicate that caregiver neglect was common in our sample and that social support may play a key role in alleviating risk of neglect. Our analysis demonstrates important nuances in predictors of neglect by operationalizing neglect as a multifactorial phenomenon.