Mary Sherman Mittelman

Background: The aging and caregiving population is becoming increasingly diverse in the United States, leading to a growing need for culturally adapted interventions to address the unique needs of underrepresented groups, such as Asian Americans. However, interventions targeting Asian Americans and exploring cultural adaptation strategies remain limited in dementia caregiving research. Objective: This study aimed to describe the cultural adaptation process of an evidence-based intervention for Chinese and Korean American dementia caregivers, called the New York University Caregiver Intervention–Enhanced Support. Methods: We conducted a deductive content analysis and categorized our adaptation strategies into 5 elements: content, context, relationship fidelity and core elements, engagement, and cultural competence. Timing and types of responses to each adaptation strategy were also observed. Two authors conducted the initial analysis, and additional team members finalized the synthesis through discussion. The Template for Intervention Description and Replication (TIDieR) checklist was used to guide the methodological rigor. Results: Twenty-four major adaptations were identified and categorized. For content, we translated materials, used culturally relevant terms, incorporated ethnic-specific surveys and resources, created social media support groups on platforms widely used by the targeted population, and extended the time allocated to complete the 6 counseling sessions. Context adaptation included expanding the range of individuals eligible for family counseling sessions to include fictive kin, using online and social media apps for communication, cultural matching and training of staff, and partnerships with relevant community organizations. Relationship fidelity and core elements involved consulting with community experts, conducting focus group interviews with caregivers, having regular meetings with the developer of the original intervention and an experienced New York University Caregiver Intervention–Enhanced Support clinician as well as experts in Chinese and Korean culture, and continuing regular counseling supervision. To enhance engagement, we provided clear explanations of the study procedure, which emphasized the benefits in participants’ native languages and matched participants with social workers who shared the same cultural backgrounds. We also used a step-by-step contact approach and prolonged communication, explained staff roles to build rapport, and offered participant compensation. Finally, cultural competence was reflected in tailoring counseling techniques with respect for cultural beliefs, the use of euphemistic language for taboo subjects, and culturally appropriate refreshments to show respect and build interpersonal relationships. Conclusions: We systematically adjusted a counseling-based intervention, an approach less familiar among Asian Americans, to fit the cultural characteristics of the target population. A contribution of this study is using an integrated, theory-driven approach that combines 2 cultural adaptation frameworks while also capturing real-time adaptations informed by external feedback and self-reflection. This work provides a practical model for adapting evidence-based interventions to serve Chinese and Korean American dementia caregivers and may inform future adaptations for other East Asian populations.

INTRODUCTION: Affiliate stigma may cause depressive symptoms among Asian American dementia caregivers, yet few studies have examined the underlying mechanisms or cross‐ethnic differences. METHODS: We analyzed data from 338 older dementia caregivers (176 Chinese Americans, 162 Korean Americans; mean age 68.8 years) who completed measures of affiliate stigma, social isolation, loneliness, and depressive symptoms. RESULTS: Higher stigma was associated with more severe depressive symptoms ( p < 0.001). Mediation analyses suggest this effect is partly explained by increased social isolation (12.8% mediated) and, especially, greater loneliness (44.4% mediated) among highly stigmatized caregivers. The stigma–depression relationship was stronger for Korean than for Chinese American caregivers ( p for interaction < 0.01). DISCUSSION: These findings identify affiliate stigma as an important risk factor for dementia caregivers’ depressive symptoms, operating through both objective and emotional forms of social disconnection. Culturally sensitive efforts to reduce caregivers’ stigma and social disconnection may improve mental health outcomes in Asian American communities.

Background: Family caregivers of home‐based people with ADRD took part in a 6‐week psychoeducational music‐based intervention, facilitated by a board‐certified music therapist. Caregivers identified care recipients’ strengths and needs related to symptoms of ADRD. In the following weeks, caregivers learned how to incorporate music‐based activities during their care. This included caregiver singing, adding background music to bath/shower routines, creating personalized playlists, the use of music for sundowning, etc. A concurrent, mixed methods approach was employed. The Short Zarit Burden Interview (12 item) was completed at baseline and follow‐up. During week 6, in small groups ranging from 2 – 6 persons, family caregivers (n = 20) rewrote the lyrics of Stand by Me, using a fill‐in‐the‐blank template.Method: A content analysis of rewritten lyrics revealed a focus on themes. A paired samples t‐test was performed to determine changes in burden. To merge the lyrics and burden scores, a joint display analysis was performed. A box plot of mild to high burden was created to demonstrate how the post‐test scores were distributed across levels of burden accompanied by a descriptive display of the most dominant lyrics that reflected each level.Result: Following the music‐based intervention, a paired samples t‐test found that caregiver burden reduced significantly from baseline (from M = 20.73 ± 6.72 to M = 16.1 ± 4.89; p = .000) indicating that caregiver participation in the 6‐week workshop contributed to perceived reduced burden. Post‐tests and box plot showed most caregivers (80%) scored with mild to moderate burden following the study. The results from content analysis of the lyrics described caregivers’ desire to persevere without fear, issues of falling or failing (a replica of the progression of ADRD) but indicate a desire to stay with the person for whom they are caring.Conclusion: Burden decreased following participation in the psychoeducational, music‐based intervention. Nevertheless, caregivers cope with a range of emotions related to caring for a person with ADRD, revealing the facilitation of music‐based interventions at home is a useful tool for caregivers but also a need for continuous support. The study is ongoing.

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

Objectives: Alzheimer’s disease (AD) affects not only the person with the illness, but family caregivers as well. The NYU Caregiver Intervention (NYUCI), a psychosocial intervention which has demonstrated both short and long-term benefits for caregivers, has been used widely in the United States and in Australia and England. The Israeli study was a hybrid between a community implementation study and a randomized controlled trial (RCT) of the NYUCI in a non-English speaking country. Method: A sample of 100 spouse caregivers participated in trial comparing the NYUCI provided by ten Israeli clinicians (enhanced care), to support group participation (usual care). The major outcome of interest was caregiver depressive symptoms, measured with the Geriatric Depression Scale. A linear random effects regression model controlling for factors associated with depressive symptoms was used to plot the longitudinal trajectories of depressive symptoms over the two-year study period and compare outcomes for the enhanced care and control groups. Results: One hundred spouse caregivers enrolled, of whom 81 provided data at baseline and at one or more post intervention assessments. The Israeli adaptation of the NYUCI was effective in reducing depressive symptoms reported by caregivers compared to their counterparts in the control group, b= −1.29 [95%CI (−2.43, −0.15)], p= .0265. Conclusion: While implementing a randomized controlled trial of an intervention developed and tested in traditional research settings using community providers in Israel, posed unique challenges, the study demonstrated benefits to caregivers. As a result, 30 municipalities in Israel are currently implementing an ongoing adaptation of the NYUCI.

Background: Families do not fully disengage from care responsibilities following relatives’ admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative’s RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives’ transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting.Methods: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members’ primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by “embedding” qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation.Discussion: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions.Trial registration: ClinicalTrials.gov(NCT02915939, prospectively registered).

We applied artificial intelligence techniques to build correlate models that predict general poor health in a national sample of caregivers with mild cognitive impairment (MCI). Our application of deep learning identified age, duration of caregiving, amount of alcohol intake, weight, myocardial infarction (MI) and frequency of MCI symptoms for Blacks and Hispanics whereas frequency of MCI symptoms, income, weight, coronary heart disease (CHD), age, and use of e-cigarette for the others as the strongest correlates of poor health among 81 variables entered. The application of artificial intelligence efficiently provided intervention strategies for Black and Hispanic caregivers with MCI.