Missing link: a qualitative analysis of community-based organisations' contributions to partnered collaborative care to treat late-life depression.

OBJECTIVE: Extending collaborative care, a model integrating mental health services into primary care, to include community-based organisations (CBOs) may improve older patient health outcomes by increasing access to care and addressing patients' social needs; however, little is known about how CBOs contribute to such partnered depression care. We explored how six primary care clinic and CBO partnerships came together to provide late-life depression care through the Care Partners funded in 2014. DESIGN: 43 key informant interviews and 15 focus groups were conducted with care managers, administrators and primary care providers partnering to provide late-life depression care. Data were coded and analysed iteratively using qualitative thematic analysis. SETTING: Six primary care clinic-CBO sites across California. PARTICIPANTS: Care managers, administrators and primary care providers participated in this study. RESULTS: Three unique contributions of CBOs to depression care in these clinic-CBO partnerships were identified: (1) CBOs added new services that focus on social needs and enhanced depression care; (2) CBOs strengthened core aspects of collaborative care for depression; (3) CBOs provided new avenues for building connections and trust with underserved patients. CONCLUSIONS: CBOs, when partnered with clinics, enhanced both medical and social aspects of depression treatment for older adults. CBOs are well positioned to assist primary care clinics in treating the complex health needs of older adults by providing new and strengthening existing aspects of partnered depression care while building patient trust among culturally diverse populations.

Caregivers of People With Mild Cognitive Impairment and Dementia: Characterizing Social and Psychological Outcomes.

OBJECTIVE: Little is known about caregiving across the spectrum of cognitive impairment [mild cognitive impairment (MCI) to dementia] and how early life and sociocultural factors affect caregiver health. In this study, we characterized differences between caregivers of those with MCI versus those with dementia. METHODS: A total of 158 caregivers were enrolled in this cross-sectional study, most of whom were dementia caregivers (65%). Caregivers completed questionnaires on depressive symptoms, self-rated health (SRH), perceived burden and stress, as well as psychosocial and demographic measures. RESULTS: Caregivers of those with MCI reported fewer depressive symptoms and lower stress and burden compared with dementia caregivers. In adjusted analyses caregivers with greater stress reported more depressive symptoms. For SRH, at lower stress levels, having a sibling die before age 18 (ie, early life adversity) was associated with poorer SRH; at higher stress levels, having early life adversity was associated with better SRH. At lower burden levels, more live births were associated with worse SRH; at higher burden levels, more live births were associated with better SRH. CONCLUSIONS: Early life factors are relevant for caregivers of those with cognitive impairment and targeted prevention and early intervention may be helpful in alleviating caregiver burden and stress.

Mapping racial and ethnic healthcare disparities for persons living with dementia: A scoping review.

INTRODUCTION: We set out to map evidence of disparities in Alzheimer's disease and Alzheimer's disease related dementias healthcare, including issues of access, quality, and outcomes for racial/ethnic minoritized persons living with dementia (PLWD) and family caregivers. METHODS: We conducted a scoping review of the literature published from 2000 to 2022 in PubMed, PsycINFO, and CINAHL. The inclusion criteria were: (1) focused on PLWD and/or family caregivers, (2) examined disparities or differences in healthcare, (3) were conducted in the United States, (4) compared two or more racial/ethnic groups, and (5) reported quantitative or qualitative findings. RESULTS: Key findings include accumulating evidence that minoritized populations are less likely to receive an accurate and timely diagnosis, be prescribed anti-dementia medications, and use hospice care, and more likely to have a higher risk of hospitalization and receive more aggressive life-sustaining treatment at the end-of-life. DISCUSSION: Future studies need to examine underlying processes and develop interventions to reduce disparities while also being more broadly inclusive of diverse populations.

Preparing for pragmatic trials in dementia care: Health equity considerations for nonpharmacological interventions.

Inequities with regard to brain health, economic costs, and the evidence base for dementia care continue. Achieving health equity in dementia care requires rigorous efforts that ensure disproportionately affected populations participate fully in-and benefit from-clinical research. Embedding-proven interventions under real-world conditions and within existing healthcare systems have the potential to examine the effectiveness of an intervention, improve dementia care, and leverage the use of existing resources. Developing embedded pragmatic controlled trials (ePCT) research designs for nonpharmacological dementia care interventions involves a plethora of a priori assumptions and decisions. Although frameworks exist to determine whether interventions are "ready" for ePCT, there is no heuristic to assess health equity-readiness. We discuss health equity considerations, case examples, and research strategies across ePCT study domains of evidence, risk, and alignment. Future discussions regarding health equity considerations across other domains are needed.

Vietnam's Responses to Dementia - An Assessment of Service Delivery.

BACKGROUND: This study was conducted to assess Vietnam's dementia service delivery. METHODS: Using WHO methodology, website searches of key organisations focused on three aspects of Vietnam's healthcare system: (1) Health and social workforce; (2) Services, supports and treatment programs; and (3) Promotion of awareness and understanding. Data were analysed using content analysis. RESULTS: While key members of the healthcare workforce receive some education in dementia competencies during their training, the skill-mix of staff in the current workforce appears inadequate to address the complex needs of people with dementia. Although Vietnam's general healthcare system comprises a good variety of service types, there is a lack of dementia-specific services. Available diagnosis and treatment services are concentrated in the hospital system and are mainly located in metropolitan areas, impacting their accessibility. While both community-based and institutional long-term care is available, institutional care is not universally accessible and home-based care is mainly provided by family carers who don't have access to dementia care training. There is no active dementia prevention or public awareness campaign. CONCLUSIONS: To improve the ability of Vietnam's service delivery to meet the needs of people with dementia and their carers, the skill-mix of the healthcare workforce should be strengthened by ensuring that dementia core competencies are embedded within undergraduate and graduate education programs and making post-qualification dementia care training available. The capacity of existing community-level health and social services should be expanded to ensure that integrated, specialised and comprehensive health and social services are accessible to all people with dementia. Expanding access to institutional long-term care and making dementia education available to family and other informal carers could increase choice and improve quality of care. Finally, Vietnam could look to other countries in the region with regards to the development of a dementia prevention and public awareness campaign.

Asian Americans' and Pacific Islanders' preferences in recruitment strategies and messaging for participation in the CARE registry: A discrete choice experiment.

INTRODUCTION: This discrete choice experiment (DCE) identified Asian American and Pacific Islander (AAPI) adults' preferences for recruitment strategies/messaging to enroll in the Collaborative Approach for AAPI Research and Education (CARE) registry for dementia-related research. METHODS: DCE recruitment strategy/messaging options were developed in English, Chinese, Korean, and Vietnamese. AAPI participants 50 years and older selected (1) who, (2) what, and (3) how they would prefer hearing about CARE. Analyses utilized conditional logistic regression. RESULTS: Participants self-identified as Asian Indian, Chinese, Filipino, Japanese, Korean, Samoan, or Vietnamese (N = 356). Overall, they preferred learning about CARE from the healthcare community (vs. community champions and faith-based organizations), joining CARE to advance research (vs. personal experiences), and hearing about CARE through social media/instant messaging (vs. flyer or workshop/seminar). Preferences varied by age, ethnic identity, and survey completion language. DISCUSSION: DCE findings may inform tailoring recruitment strategies/messaging to engage diverse AAPI in an aging-focused research registry.

Inclusion of Vietnamese Americans: Opportunities to understand dementia disparities.

There is a dearth of research on cognitive aging and dementia in Asian Americans, particularly Vietnamese Americans, who are the fourth largest Asian subgroup in the United States. The National Institutes of Health is mandated to make certain that racially and ethnically diverse populations are included in clinical research. Despite the widespread recognition to ensure that research findings can be generalizable to all groups, there are no estimates of the prevalence or incidence of mild cognitive impairment and Alzheimer's disease and related dementias (ADRD) in Vietnamese Americans, nor do we understand ADRD risk and protective factors in this group. In this article, we posit that studying Vietnamese Americans contributes to a better understanding of ADRD in general and offers unique opportunities for elucidating life course and sociocultural factors that contribute to cognitive aging disparities. That is, the unique context of Vietnamese Americans may provide understanding in terms of within-group heterogeneity and key factors in ADRD and cognitive aging. Here, we provide a brief history of Vietnamese American immigration and describe the large but often ignored heterogeneity of Asian Americans in the United States, elucidate how early life adversity and stress might influence late-life cognitive aging, and provide a basis for the role of sociocultural and health factors in the study of Vietnamese cognitive aging disparities. Research with older Vietnamese Americans provides a unique and timely opportunity to more fully delineate the factors that contribute to ADRD disparities for all populations.

"We are the sun for our community:" Partnering with community health workers/promotores to adapt, deliver and evaluate a home-based collaborative care model to improve equity in access to quality depression care for older U.S. Latino adults who are underserved.

Background: While depression is a leading cause of poor health, less than half of older adults receive adequate care. Inequities in both access and outcomes are even more pronounced for socially disadvantaged older adults. The collaborative care model (CCM) has potential to reduce this burden through community-based organizations (CBOs) who serve these populations. However, CCM has been understudied in diverse cultural and resource-constrained contexts. We evaluated the implementation and effectiveness of PEARLS, a home-based CCM adapted with and for community health workers/promotores (CHWs/Ps). Methods: We used an instrumental case study design. Our case definition is a community-academic partnership to build CHW/P capacity for evidence-based depression care for older U.S. Latino adults in the Inland Empire region of California (2017-2020). We aimed to understand adaptations to fit local context; acceptability, feasibility, and fidelity; clinical effectiveness; and contextual determinants of implementation success or failure. Data sources included quantitative and qualitative administrative and evaluation data from participants and providers. We used descriptive statistics and paired t-tests to characterize care delivery and evaluate effectiveness post-intervention, and deductive thematic analysis to answer other aims. Findings: This case study included 152 PEARLS participants and nine data sources (N = 67 documents). The CBO including their CHWs/Ps partnered with the external implementation team made adaptations to PEARLS content, context, and implementation strategies to support CHWs/Ps and older adults. PEARLS was acceptable, feasible and delivered with fidelity. Participants showed significant reductions in depression severity at 5 months (98% clinical response rate [mean (SD), 13.7 (3.9) drop in pre/post PHQ-9; p < 0.001] and received support for 2.6 social needs on average. PEARLS delivery was facilitated by its relative advantage, adaptability, and trialability; the team's collective efficacy, buy-in, alignment with organization mission, and ongoing reflection and evaluation during implementation. Delivery was challenged by weak partnerships with clinics for participant referral, engagement, reimbursement, and sustainability post-grant funding. Discussion: This case study used existing data to learn how home-based CCM was adapted by and for CHWs/Ps to reduce health inequities in late-life depression and depression care among older Latino immigrants. The CBOs and CHWs/Ps strong trust and rapport, addressing social and health needs alongside depression care, and regular internal and external coaching and consultation, appeared to drive successful implementation and effectiveness.

Simultaneously Developing Interventions for Low-/Middle-Income and High-Income Settings: Considerations and Opportunities.

Most older adults reside in low- and middle-income countries (LMICs) but most research dollars spent on interventions to improve the lives of older adults are awarded to researchers in high-income countries (HICs). One approach to improve the implementation of evidence-based innovations for older adults in LMICs is designing interventions that are relevant to LMICs and HICs simultaneously. We propose that researchers in HICs could partner with stakeholders in an LMIC throughout the intervention design process to better position their intervention for the implementation in that LMIC. We provide an example study from an adaptation of the Resources for Enhancing Caregiver Health II in Vietnam, which did not use this strategy but may have benefited from this strategy. We then turn to several considerations that are important for researchers to contemplate when incorporating this strategy. Finally, we explore incentives for creating interventions that are relevant to both HICs and LMICs for funders, intervention designers, and intervention receivers. Although this is not the only strategy to bring interventions to LMICs, it may represent another tool in researchers' toolboxes to help expedite the implementation of efficacious interventions in LMICs.

Best Practice Recommendations for Integrating Health Equity into Pragmatic Clinical Trials for Dementia Care.

Context: Minoritized populations experience higher rates of dementia and worse health outcomes than non-Hispanic white people, but they are vastly underrepresented in pragmatic clinical trials embedded in health care systems (ePCTs). Little guidance is available to consider health equity-relevant issues in ePCTs. Objective: This report describes the development, structure, and content of a guidance document developed by the National Institute on Aging Imbedded Pragmatic AD/ADRD Clinical Trials (IMPACT) Collaboratory to help investigators systematically assess the integration of health equity into all aspects of ePCT design. Design: Led by a task force of IMPACT investigators, a literature review of existing frameworks for health equity considerations in clinical trials was conducted. Next, priority health equity-relevant recommendations in the domains of ePCT design were solicited from Collaboratory experts. The 50 submitted recommendations were reduced to 36 nonoverlapping best practices and categorized into 6 domains, as follows: Getting Started, Community Stakeholder Engagement, Design and Analysis, Intervention Design and Implementation, Health Care System and Participant Selection, and Selecting Outcomes. Each domain had 6 best practice recommendations consisting of a succinctly worded main sentence, with 1 to 2 explanatory sentences. The content was finalized through an iterative process of editing and revision. Conclusions: Although specifically focused on ePCTs involving dementia care, the best practices are applicable to any ePCT and can be useful to advance health equity in traditional clinical trials. This guidance document provides a first step toward promoting holistic, structured integration of health equity into the design and conduct of ePCTs as a matter of good science.

Equitability of Depression Screening After Implementation of General Adult Screening in Primary Care.

Importance: Depression is a debilitating and costly medical condition that is often undertreated. Men, racial and ethnic minority individuals, older adults, and those with language barriers are at increased risk for undertreatment of depression. Disparities in screening may contribute to undertreatment. Objective: To examine depression screening rates among populations at risk for undertreatment of depression during and after rollout of general screening. Design, Setting, and Participants: This cohort study from September 1, 2017, to December 31, 2019, of electronic health record data from 52 944 adult patients at 6 University of California, San Francisco, primary care facilities assessed depression screening rates after implementation of a general screening policy. Patients were excluded if they had a baseline diagnosis of depression, bipolar disorder, schizophrenia, schizoaffective disorder, or dementia. Exposures: Screening year, including rollout (September 1, 2017, to December 31, 2017) and each subsequent calendar year (January 1 to December 31, 2018, and January 1 to December 31, 2019). Main Outcomes and Measures: Rates of depression screening performed by medical assistants using the Patient Health Questionnaire-2. Data collected included age, sex, race and ethnicity, and language preference (English vs non-English); to compare English and non-English language preference groups and also assess depression screening by race and ethnicity within the English-speaking group, a single language-race-ethnicity variable with non-English language preference and English language preference categories was created. In multivariable analyses, the likelihood of being screened was evaluated using annual logistic regression models for 2018 and 2019, examining sex, age, language-race-ethnicity, and comorbidities, with adjustment for primary care site. Results: There were 52 944 unique, eligible patients with 1 or more visits in one of the 6 primary care practices during the entire study period (59% female; mean [SD] age, 48.9 [17.6] years; 178 [0.3%] American Indian/Alaska Native, 13 241 [25.0%] English-speaking Asian, 3588 [6.8%] English-speaking Black/African American, 4744 [9.0%] English-speaking Latino/Latina/Latinx, 760 [1.4%] Pacific Islander, 22 689 [42.9%] English-speaking White, 4857 [9.0%] English-speaking other [including individuals who indicated race and ethnicity as other and individuals for whom race and ethnicity data were missing or unknown], and 2887 [5.5%] with language barriers [non-English language preference]). Depression screening increased from 40.5% at rollout (2017) to 88.8% (2019). In 2018, the likelihood of being screened decreased with increasing age (adusted odds ratio [aOR], 0.89 [95% CI, 0.82-0.98] for ages 45-54 and aOR, 0.75 [95% CI, 0.65-0.85] for ages 75 and older compared with ages 18-30); and, except for Spanish-speaking patients, patients with limited English proficiency were less likely to be screened for depression than English-speaking White patients (Chinese language preference: aOR, 0.59 [95% CI, 0.51-0.67]; other non-English language preference: aOR, 0.55 [95% CI, 0.47-0.64]). By 2019, depression screening had increased dramatically for all at-risk groups, and for most, disparities had disappeared; the odds of screening were only still significantly lower for men compared with women (aOR, 0.87 [95% CI, 0.81 to 0.93]). Conclusions and Relevance: In this cohort study in a large academic health system, full implementation of depression screening was associated with a substantial increase in screening rates among groups at risk for undertreatment of depression. In addition, depression screening disparities narrowed over time for most groups, suggesting that routine depression screening in primary care may reduce screening disparities and improve recognition and appropriate treatment of depression for all patients.

Moving beyond referrals to strengthen late-life depression care: a qualitative examination of primary care clinic and community-based organization partnerships.

BACKGROUND: National guidelines have called for greater integration of primary care and behavioral health services, with more recent attention to social care and community-based services. Under growing resource constraints healthcare organizations have tended to rely on referrals to external entities to address social care needs. Traditional referral models, however, may not be equipped to provide for the complex needs of older adults with depression. The Care Partners Project was designed to strengthen late-life depression care through integrated partnerships between primary care clinics and community-based organizations. We sought to understand how these integrated partnerships, with shared tasks and accountability across organizations, changed the nature of depression care for older adults. METHODS: We conducted 65 in-depth, semi-structured interviews and six focus groups with service providers involved in the project, including care managers, primary care providers, and psychiatric consultants, and applied inductive and deductive qualitative thematic analysis to develop themes around participants' experiences with the partnered initiative. RESULTS: We found the partnerships established by the Care Partners Project reshaped late-life depression care in two ways: (1) bidirectional communication across organizations facilitated greater recognition among providers of intersecting medical and social needs associated with late-life depression; and (2) depression care became more coordinated and effective as care teams established or strengthened relationships across organizations. CONCLUSIONS: These findings highlight the ways cross-organizational health and social care partnerships that move beyond traditional referrals can strengthen late-life depression care and enhance organizational capacities.

Impact of dementia: Health disparities, population trends, care interventions, and economic costs.

INTRODUCTION: The dementia experience is not a monolithic phenomenon-and while core elements of dementia are considered universal-people living with dementia experience the disorder differently. Understanding the patterning of Alzheimer's disease and related dementias (ADRD) in the population with regards to incidence, risk factors, impacts on dementia care, and economic costs associated with ADRD can provide clues to target risk and protective factors for all populations as well as addressing health disparities. METHODS: We discuss information presented at the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, Theme 1: Impact of Dementia. In this article, we describe select population trends, care interventions, and economic impacts, health disparities and implications for future research from the perspective of our diverse panel comprised of academic stakeholders, and persons living with dementia, and care partners. RESULTS: Dementia incidence is decreasing yet the advances in population health are uneven. Studies examining the educational, geographic and race/ethnic distribution of ADRD have identified clear disparities. Disparities in health and healthcare may be amplified by significant gaps in the evidence base for pharmacological and non-pharmacological interventions. The economic costs for persons living with dementia and the value of family care partners' time are high, and may persist into future generations. CONCLUSIONS: Significant research gaps remain. Ensuring that ADRD healthcare services and long-term care services and supports are accessible, affordable, and effective for all segments of our population is essential for health equity. Policy-level interventions are in short supply to redress broad unmet needs and systemic sources of disparities. Whole of society challenges demand research producing whole of society solutions. The urgency, complexity, and scale merit a "whole of government" approach involving collaboration across numerous federal agencies.

Community-Engaged Research with Vietnamese Americans to Pilot-Test a Dementia Caregiver Intervention.

Caring for a family member with Alzheimer's disease (AD) or a related dementia is stressful, and this may especially be the case for racial/ethnic minority caregivers. This study examined the feasibility and acceptability of a pilot intervention for Vietnamese American dementia caregivers. A secondary, exploratory aim was to examine post-intervention effects on AD knowledge and psychosocial outcomes. Of the 87 individuals contacted, 32 met inclusion criteria. Of this number, 14 enrolled in the study with 11 caregivers completing the intervention, and 10 of the 11 completing 3-month follow-up data. Caregivers provided positive feedback on the intervention and had higher scores on AD knowledge and self-efficacy in seeking support services post-intervention, with the effect on self-efficacy maintained at 3-month follow-up. Recruitment for the intervention was difficult; however, once caregivers came to the first session, they were engaged and found the classes informative. Recommendations for a future intervention are discussed.

Achieving Health Equity in Embedded Pragmatic Trials for People Living with Dementia and Their Family Caregivers.

Embedded pragmatic clinical trials (ePCTs) advance research on Alzheimer's disease/Alzheimer's disease and related dementias (AD/ADRD) in real-world contexts; however, health equity issues have not yet been fully considered, assessed, or integrated into ePCT designs. Health disparity populations may not be well represented in ePCTs without special efforts to identify and successfully recruit sites of care that serve larger numbers of these populations. The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's disease (AD) and AD-Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory's Health Equity Team will contribute to the overall mission of the collaboratory by developing and implementing strategies to address health equity in the conduct of ePCTs and ensure the collaboratory is a national resource for all Americans with dementia. As a first step toward meeting these goals, this article reviews what is currently known about the inclusion of health disparities populations of people living with dementia (PLWD) and their caregivers in ePCTs, highlights unique challenges related to health equity in the conduct of ePCTs, and suggests priority areas in the design and implementation of ePCTs to increase the awareness and avoidance of pitfalls that may perpetuate and magnify healthcare disparities. J Am Geriatr Soc 68:S8-S13, 2020.

Complexity in partnerships: A qualitative examination of collaborative depression care in primary care clinics and community-based organisations in California, United States.

Partnering across health clinics and community organisations, while worthwhile for improving health and well-being, is challenging and time consuming. Even partnerships that have essential elements for success in place face inevitable challenges. To better understand how cross-organisational partnerships work in practice, this paper examines collaborations between six primary care clinics and community-based organisations in the United States that were part of an initiative to address late-life depression using an enhanced collaborative care model (Archstone Foundation Care Partners Project). As part of an evaluation of the Care Partners Project, 54 key informant interviews and 10 focus groups were conducted from 2015 to 2017. Additionally, more than 80 project-related documents were reviewed. Qualitative thematic analysis was used to code the transcripts and identify prominent themes in the data. Examining clinic and community organisation partnerships in practice highlighted their inherent complexity. The partnerships were fluid and constantly evolving, shaped by a multiplicity of perspectives and values, and vulnerable to unpredictability. Care Partners sites negotiated the complexity of their partnerships drawing upon three main strategies: adaptation (allowing for flexibility and rapid change); integration (providing opportunities for multi-level partnerships within and across organisations) and cultivation (fostering a commitment to the partnership and its value). These strategies provided opportunities for Care Partners collaborators to work with the inherent complexity of partnering. Intentionally acknowledging and embracing such complexity rather than trying to reduce or avoid it, may allow clinic and community collaborators to strengthen and sustain their partnerships.

Costs of implementing and sustaining enhanced collaborative care programs involving community partners.

BACKGROUND: Collaborative care is an evidence-based program for treating depression in primary care. We sought to expand this model by recruiting clinics interested in incorporating community partners (i.e., community-based organizations (CBO) and/or family members) in the care team. Seven sites implemented evidence-based collaborative care programs with community partners while collecting information on costs of implementing and sustaining programs. METHODS: Sites retrospectively collected data on planning and implementation costs with technical assistance from study researchers. Sites also prospectively collected cost of care activities over a 1-month period once the program was implemented to determine resources needed to sustain programs. Personnel salary costs were adjusted, adding 30% for benefits and 30% for administrative overhead. RESULTS: The programs implemented varied considerably in staffing, involvement of care partners, and allocation of costs. Total planning and implementation costs varied from $39,280 to $60,575. The largest implementation cost category involved workflow development and ranged from $16,325 to $31,375 with the highest costs in this category attributed to the most successful implementation among clinic-CBO programs. Following implementation, cost per patient over the 1-month period ranged from $154 to $544. Ongoing strategic decision-making and administrative costs, which were included in cost of care, ranged from $284 to $2328 for the month. CONCLUSIONS: Sites implemented collaborative care through differing partnerships, staffing, and related costs. Costs to implement and sustain programs developed in partnership are often not collected but are crucial to understanding financial aspects of developing sustainable partnerships. Assessing such costs is feasible and can inform future partnership efforts.