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What Matters to Chinese and Korean American Dementia Caregivers: Navigating Cultural Influences in Dementia Care from Caregivers' Perspectives

Wang, Jing; Leong, I Tek; Johnson, Min Kyoung; Pei, Yaolin; Lee, Kyung Hee; Mittelman, Mary S; Epstein, Cynthia; Cho, Soyeon; Wu, Bei
BACKGROUND/UNASSIGNED:Chinese and Korean Americans are among the fastest-growing minority groups in the US but face disparities in income and limited English proficiency, leading to health inequities in Alzheimer's disease and related dementias (ADRD) care. OBJECTIVE/UNASSIGNED:This study aims to understand cultural influences in ADRD care from the perspectives of Chinese and Korean American caregivers to inform culturally sensitive support for caregivers in Asian immigrant populations. METHODS/UNASSIGNED:We conducted a study that was part of a broader project aimed at informing the cultural adaptation of the NYU Caregiver Intervention-Enhanced Support (NYUCI-ES) program specifically for Chinese and Korean American caregivers managing multiple chronic conditions. In our interviews with 14 Chinese American and 11 Korean American caregivers, we focused on how their roles as primary caregivers were influenced by cultural and family expectations, the impact of caregiving on their personal and emotional well-being, and the specific barriers they face in accessing healthcare for themselves and their relatives with dementia. RESULTS/UNASSIGNED:Cultural beliefs and values significantly influenced the perceptions and utilization of support systems among Chinese and Korean American caregivers. Family stigma and adherence to cultural norms impacted their caregiving experiences. The study also highlighted the added burden during the pandemic and the potential benefits of telehealth and information technology in ADRD care. CONCLUSIONS/UNASSIGNED:Developing culturally tailored, person-centered programs is crucial to meeting the unique needs of Chinese and Korean American caregivers. This research contributes to understanding and supporting this vulnerable population, promoting healthcare equity for ADRD patients and caregivers.
PMID: 38427483
ISSN: 1875-8908
CID: 5644292

Examining the Rationale for Studying Psychedelic-Assisted Psychotherapy for the Treatment of Caregiver Distress

Gold, Noah D; Podrebarac, Samantha K; White, Lindsay A; Marini, Christina; Simon, Naomi M; Mittelman, Mary S; Ross, Stephen; Bogenschutz, Michael P; Petridis, Petros D
ISSN: 2831-4425
CID: 5525822

Telehealth Support for Dementia Caregivers During the COVID-19 Pandemic: Lessons Learned From the NYU Family Support Program

O'Connor, Maureen K; Nicholson, Roscoe; Epstein, Cynthia; Donley, Tiffany; Salant, Rebecca; Nguyen, Andrew H; Shirk, Steven; Stevenson, Elizabeth; Mittelman, Mary S
OBJECTIVES/OBJECTIVE:In response to the needs of dementia caregivers during the COVID-19 pandemic, the NYU Langone Alzheimer's Disease and Related Disorders Family Support Program (FSP) quickly transitioned to providing most services online. To understand how dementia caregivers experienced FSP services after the switch to video telehealth, we conducted qualitative interviews of spouse or partner dementia caregivers. PARTICIPANTS/METHODS:Ten participants were recruited from a convenience sample of dementia spouse or partner caregivers who used one or more online FSP services offered during the pandemic. DESIGN/METHODS:Caregivers engaged in semi-structured interviews held via videoconference between May and June 2020. Qualitative analysis of interviews was conducted according to the principles of framework analysis. RESULTS:Caregivers reported high satisfaction with the FSP pre-pandemic and continued to feel supported when services were provided online. They transitioned to video telehealth services with little difficulty. CONCLUSIONS:While video telehealth is frequently cited as beneficial for those in rural communities, socioeconomically disadvantaged groups, or homebound individuals, our findings suggest that video telehealth is also advantageous for dementia caregivers, given their unique barriers, including lack of time due to caregiving responsibilities, lack of respite care for the person with dementia, and the additional burdens of travel time to access in-person services.
PMID: 36167652
ISSN: 1545-7214
CID: 5334222

Applying Participatory Design Mixed-Methods Approaches to Refine Twitter-Based Social Support Interventions for African Americans and Hispanic Family Caregivers of Persons with Dementia

Yoon, Sunmoo; Broadwell, Peter; Alcantara, Carmela; Davis, Nicole; Sun, Frederick F; de Planell Saguer, Maria D; Nho, Joo Young; Mittelman, Mary
We applied mixed-methods to refine our first version of the Twitter message library (English 400, translated into Spanish 400) for African Americans and Hispanic family caregivers for a person with dementia. We conducted a series of expert panels to collect quantitative and qualitative data using surveys and in-depth interviews. Using mixed methods to ensure unbiased results, the panelists first independently scored them (1 message/5 panelist) on a scale of 1 to 4 (1: lowest, 4: highest), followed by in-depth interviews and group discussions. Survey results showed that the average score was 3.47, indicating good to excellent (SD 0.35, ranges from 1.8 to 4). Quantitative surveys and qualitative interviews showed different results in emotional support messages.
PMID: 35773874
ISSN: 1879-8365
CID: 5278272

Application of Machine Learning Techniques to Examine Social Service Needs Among Hispanic Family Caregivers of Persons with Dementia

Yoon, Sunmoo; Mendes, Alexandra; Burgio, Louis; Mittelman, Mary; Dunner, Ilana; Levine, Jed A; Hoyos, Carolina; Tipiani, Dante; Ramirez, Mildred; Teresi, Jeanne A; Luchsinger, José A
We applied machine learning algorithms to examine the relationship between demographics and outcomes of the social work services used by Hispanic family caregivers of persons with dementia recruited for a clinical trial in New York City. The social work service needs were largely concentrated on instrumental support to gain access to the healthcare system rather than other concrete services (e.g., housing or food programs) or to address psychological needs among the caregivers with relatively higher income. A finding from the machine learning approach was that among those who receive medical-related social work services, frequent users (≥10 times) with high family friend support(>4) were more likely than frequent users without such support to have their issues resolved (Accuracy: 81.9%, AUC: 0.82, F-measure: 0.86 by J48). Even though half of the participants received social work services multiple times, the needs of the caregivers remained unmet unless they sought social work services frequently (more than ten times).
PMID: 35773922
ISSN: 1879-8365
CID: 5278282

Application of persuasive systems design principles to design a self-management application user interface for Hispanic informal dementia caregivers: user preferences and perceptions

Lucero, Robert J; Yoon, Sunmoo; Suero-Tejeda, Niurka; Arcia, Adriana; Iribarren, Sarah; Mittelman, Mary; Luchsinger, Jose; Bakken, Suzanne
OBJECTIVE:We designed an mHealth application (app) user interface (UI) prototype informed by participatory design sessions, persuasive systems design (PSD) principles, and Lorig and Holman's self-management behavior framework to support self-management activities of Hispanic informal dementia caregivers and assessed their perceptions and preferences regarding features and functions of the app. MATERIALS AND METHODS/METHODS:Our observational usability study design employed qualitative methods and forced choice preference assessments to identify: (1) the relationship between user preferences for UI features and functions and PSD principles and (2) user preferences for UI design features and functions and app functionality. We evaluated 16 pairs of mHealth app UI prototype designs. Eight paper-based paired designs were used to assess the relationship between PSD principles and caregiver preferences for UI features and functions to support self-management. An Apple iPad WIFI 32GB was used to display another 8 paired designs and assess caregiver preferences for UI functions to support the self-management process. RESULTS:Caregivers preferred an app UI with features and functions that incorporated a greater number of PSD principles and included an infographic to facilitate self-management. Moreover, caregivers preferred a design that did not depend on manual data entry, opting instead for functions such as drop-down list, drag-and-drop, and voice query to prioritize, choose, decide, and search when performing self-management activities. CONCLUSION/CONCLUSIONS:Our assessment approaches allowed us to discern which UI features, functions, and designs caregivers preferred. The targeted application of PSD principles in UI designs holds promise for supporting personalized problem identification, goal setting, decision-making, and action planning as strategies for improving caregiver self-management confidence.
PMID: 35178504
ISSN: 2574-2531
CID: 5386552

Analyzing Topics and Sentiments from Twitter to Gain Insights to Refine Interventions for Family Caregivers of Persons with Alzheimer's Disease and Related Dementias (ADRD) During COVID-19 Pandemic

Yoon, Sunmoo; Broadwell, Peter; Alcantara, Carmela; Davis, Nicole; Lee, Haeyoung; Bristol, Amanda; Tipiani, Dante; Nho, Joo Young; Mittelman, Mary
We randomly extracted Tweets mentioning dementia/Alzheimer's caregiving-related terms (n= 58,094) from Aug 23, 2019, to Sep 14, 2020, via an API. We applied a clustering algorithm and natural language processing (NLP) to publicly available English Tweets to detect topics and sentiment. We compared emotional valence scores of Tweets from before (through the end of 2019) and after the beginning of the COVID-19 pandemic (2020-). Prevalence of topics related to caregiver emotional distress (e.g., depression, helplessness, stigma, loneliness, elder abuse) and caregiver coping (e.g., resilience, love, reading books) increased, and topics related to late-stage dementia caregiving (e.g., nursing home placement, hospice, palliative care) decreased during the pandemic. The mean emotional valence score significantly decreased from 1.18 (SD 1.57; range -7.1 to 7.9) to 0.86 (SD 1.57; range -5.5 to 6.85) after the advent of COVID-19 (difference -0.32 CI: -0.35, -0.29). The application of topic modeling and sentiment analysis to streaming social media provides a foundation for research insights regarding mental health needs for family caregivers of a person with ADRD during COVID-19 pandemic.
PMID: 35062119
ISSN: 1879-8365
CID: 5131992

Applying Social Network Analysis to Compare Dementia Caregiving Networks on Twitter in Hispanic and Black Communities

Yoon, Sunmoo; Alcantara, Carmela; Davis, Nicole; Broadwell, Peter; Lee, Haeyoung; Bristol, Amanda; Tipiani, Dante; Nho, Joo Young; Mittelman, Mary
We applied social network analysis (SNA) on Tweets to compare Hispanic and Black dementia caregiving networks. We randomly extracted Tweets mentioning dementia caregiving and related terms from corpora collected daily via the Twitter API from September 1 to December 31, 2019 (initial corpus: n = 2,742,539 Tweets, random sample n = 549,380 English Tweets, n= 185,684 Spanish Tweets). After removing bot-generated Tweets, we first applied a lexicon-based demographic inference algorithm to automatically identify Tweets likely authored by Black and Hispanic individuals using Python (n = 114,511 English, n = 1,185 Spanish). Then, using ORA, we computed network measures at macro, meso, and micro levels and applied the Louvain clustering algorithm to detect groups within each Hispanic and Black caregiving network. Both networks contained a similar proportion of dyads and triads (Hispanic 88.2%, Black 88.9%), while the Black caregiving network included a slightly larger proportion of isolates (Hispanic 0.8%, Black 4.0%). This study provides useful baseline information on the composition of existing large groups and small groups. In addition, this work provides useful guidance for future recruitment strategies and the design of social support interventions regarding emotional needs for Hispanic and Black dementia caregivers.
PMID: 35062135
ISSN: 1879-8365
CID: 5132002

Longitudinal study: understanding the lived experience of couples across the trajectory of dementia

Mittelman, Mary S; O'Connor, Maureen K; Donley, Tiffany; Epstein-Smith, Cynthia; Nguyen, Andrew; Nicholson, Roscoe; Salant, Rebecca; Shirk, Steven D; Stevenson, Elizabeth
BACKGROUND:The longitudinal study, "Couples Lived Experiences," focuses on whether and how relationship characteristics of older couples change with the cognitive decline of one member of the couple, and how these changes affect each individual's emotional and physical health outcomes. Until now, most psychosocial research in dementia has focused either on the person with dementia (PWD) or the caregiver separately. The previous literature examining relationship characteristics and their role in outcomes for the caregiver and PWD is scant and suffers from methodological issues that limit the understanding of which relationship characteristics most influence outcomes for caregivers and care-receivers and what other factors may mitigate or exacerbate their effects. METHODS:We will enroll 300 dyads and collect information via online interviews of each member of the couple, every 6 months for 3 years. Relationship characteristics will be measured with a set of short, well-validated, and reliable self-report measures, plus the newly developed "Partnership Approach Questionnaire." Outcomes include global quality of life, subjective physical health, mental health (depression and anxiety), and status change (transitions in levels of care; i.e., placement in a nursing home). Longitudinal data will be used to investigate how relationship characteristics are affected by cognitive, functional, and behavioral changes, and the impact of these changes on health outcomes. Qualitative data will also be collected to enrich the interpretation of results of quantitative analyses. DISCUSSION:Psychosocial interventions have demonstrated effectiveness in promoting the wellbeing of PWD and their caregivers. The knowledge gained from this study can lead to the development or enhancement of targeted interventions for older couples that consider the impact of cognitive and functional decline on the relationship between members of a couple and thereby improve their wellbeing. TRIAL REGISTRATION:This study has been registered with Identifier is: NCT04863495 .
PMID: 34654375
ISSN: 1471-2318
CID: 5039562

Evaluating the use of music-assisted caregiving interventions by certified nursing assistants caring for nursing home residents with HIV-associated neurocognitive disorders and depressive symptoms: A mixed-methods study

Ray, Kendra; Kaimal, Girija; Dassa, Ayelet; Slaughter-Acey, Jaime; Mittelman, Mary
In recent years, HIV-associated neurocognitive disorders (H
ISSN: 1943-863x
CID: 5137602