Evidence Map of Non-Pharmacological Dementia Care Partner Interventions Implemented in the US: Gaps and Impact Opportunities.

There are 200+ tested interventions for care partners (family, friends, and fictive kin) of people living with dementia (PLWD). But these interventions do not systematically cover relevant settings. Nor do these interventions affect all relevant outcomes that matter to people and healthcare systems. We present an evidence map of settings and outcomes from translated interventions to identify gaps. Of 190 studies identified, 31 unique interventions were retained in the evidence map. Identified setting gaps included studies set solely in hospitals/medical centers or set in multiple settings. Identified outcome gaps included interventions that improved care partner beliefs about providing care, care partner negative coping strategies, PLWD resources (e.g., social support), and PLWD coping strategies. Armed with an understanding of present gaps, we call on researchers to fill the identified gaps to ensure systematic coverage of settings and evaluation of outcomes that matter to people and healthcare systems.

Embedding Caregiver Support Within Adult Day Services: Outcomes of a Multisite Trial.

BACKGROUND AND OBJECTIVES: Adult day services (ADS) provide quality-of-life benefits to people with dementia, but few provide systematic caregiver support. We report outcomes of a multisite, national trial testing a staff-delivered caregiver program, ADS Plus. RESEARCH DESIGN AND METHODS: Cluster-randomized trial involving 34 ADS: 18 sites provided ADS (controls) and 16 provided ADS and ADS Plus (intervention). Trained staff met with caregivers to provide dementia education, support/validation, referrals/linkages, and strategies for care challenges and self-care over 12 months. Main outcomes included depressive symptoms (Center for Epidemiological Studies Depression Scale [CES-D]) and well-being at 6 and 12 months, and client attendance over 12 months. RESULTS: Of 203 caregivers (Intervention = 102; Control = 101), 5.9% at 3 months, 12.8% at 6 months, and 22.7% at 12 months were lost to follow-up. Caregivers were predominantly female (80.3%), with 76.4% identifying as White/Caucasian, 14.8% Black/African American, and 12.3% Hispanic/Latino. Most (88.2%) had ≥college education and were 65.0 years old (SD = 13.46). For those with 6-month data, 40.4% control and 40.2% ADS Plus caregivers had depressed symptoms (≥16 CES-D) at baseline. By 6 months, 43.6% control versus 34.2% ADS Plus caregivers had ≥16 scores (odds ratio = 0.38, p = .072). By 12 months, after covariate adjustments, ADS Plus caregivers reported reduced total depression scores versus controls (p = .013) and lower depressed affect scores (p = .015). Of 18 sites providing 12-month client attendance data, 9 intervention sites reported 126.05 days attended versus 78.49 days for 9 control sites (p = .079). DISCUSSION AND IMPLICATIONS: Compared with ADS alone, by 12 months, ADS Plus improved caregiver mood and increased ADS utilization by 60.6%. Results support ADS staff delivering evidence-based caregiver support to enhance ADS benefits. CLINICAL TRIAL REGISTRATION: NCT02927821.

It's More Than Language: Cultural Adaptation of a Proven Dementia Care Intervention for Hispanic/Latino Caregivers.

Although Hispanic/Latino older adults are at disproportionate and increased risk for Alzheimer's disease and related dementias, few evidence-based supportive care interventions are specifically developed for or adapted for this population. Adapting a supportive care intervention requires more than Spanish language translation; it necessitates an understanding of cultural nuances and care preferences of Hispanic/Latino families and staff who implement the intervention. This article describes the cultural adaptation of the Adult Day Service Plus intervention for delivery by staff to Hispanic/Latino caregivers, which was guided by the cultural adaptation process model. Also, using the Framework for Reporting Adaptations and Modifications-Enhanced, we discuss (a) when modifications were made, (b) who determined the modifications needed, (c) what aspects of the intervention were modified, (d) the relationship to fidelity and how fidelity was maintained, and (e) reasons for modifications. Modifications to the delivery and content were changed to reflect the values and norms of both the Hispanic/Latino staff and the caregivers they serve. As supportive interventions for caregivers are developed and implemented into real-world settings, inclusion of cultural elements may enhance research participation among Hispanic/Latino provider sites, people living with dementia, and their caregivers. Cultural adaptation is an essential consideration when developing, adapting, and implementing previously tested evidence-based interventions. Cultural adaptation offers an important lens by which to identify contextual factors that influence successful adoption to assure equity in the reach of evidence-based programs.

Exploring Challenges and Strategies in Partnering With Community-Based Organizations to Advance Intervention Development and Implementation With Older Adults.

Minoritized older adults face multiple health inequities and disparities, but are less likely to benefit from evidence-based health care interventions. With the increasing diversity of the U.S. aging population, there is a great promise for gerontology researchers to partner with racial/ethnic minority organizations and underrepresented communities to develop and implement evidence-based health interventions. Community-Based Participatory Research and Implementation Science offer guidance and strategies for researchers to develop and sustain community partnerships. However, researchers partnering with community organizations continue to face challenges in these collaborations, study outcomes, and sustainability. This may be especially true for those junior in their career trajectory or new to community-engaged research. The purpose of this forum article is to detail critical challenges that can affect gerontology researcher-community partnerships and relationships from the perspective of researchers. Seven challenges (pre- or mid-intervention design, implementation, and postimplementation phases) described within the Equity-focused Implementation Research for health programs framework are identified and discussed. Potential solutions are also presented. Planning for potential obstacles of the researcher-community partnerships can inform innovative solutions that will facilitate successful partnerships, thereby promoting the advancement of collaborative research between academic institutions and community organizations to improve older adult health outcomes.

WeCareAdvisor, an Online Platform to Help Family Caregivers Manage Dementia-Related Behavioral Symptoms: an Efficacy Trial in the Time of COVID-19.

Dementia-related behavioral and psychology symptoms (BPSD) are undertreated and have negative consequences. However, families do not have access to disease information, tailored problem-solving  and effective management strategies, and with COVID-19, are more socially isolated and distressed. To address this dementia care gap, we describe a Phase III efficacy trial testing an online platform, WeCareAdvisor, and design modifications necessitated by COVID-19. WeCareAdvisor provides caregivers with disease information, daily tips, and a systematic approach for describing behaviors, investigating underlying causes, creating tailored strategies, and evaluating their effectiveness (DICE). The trial will enroll 326 caregivers nationwide, randomly assign them to immediately receive WeCareAdvisor (treatment), or a 3-month waitlist (control) and evaluate short (1- and 3-month) and long-term (6-month) outcomes for caregiver distress with and confidence managing BPSD, and BPSD occurrences. We will also evaluate utilization patterns with different prompting conditions: high-intensity (telephone and email reminders), low-intensity (email reminders), or no reminders to use WeCareAdvisor. COVID-19 necessitated design modifications resulting in greater inclusivity of caregivers from diverse races, ethnicities, and geographic areas. Key modifications include shifting from in-home, in-person interviewing to telephone; adjusting tool functionality from operating on a grant-funded iPad to caregivers' personal internet-capable devices; and expanding recruitment from one metropolitan area to nationwide. Study modifications necessitated by COVID-19 facilitate national outreach, easier tool adoption, and enable more diverse caregivers to participate. This study addresses a critical dementia care need, and design modifications may shorten timeline from efficacy testing to commercialization.

Using Geographic Information Systems (GIS) for Targeted National Recruitment of Community-Dwelling Caregivers Managing Dementia-Related Behavioral and Psychological Symptoms: A Recruitment Approach for a Randomized Clinical Trial.

Over 16 million caregivers of people living with dementia require support in a range of issues, including self-care, disease education, and guidance for how to manage behavioral and psychological symptoms of dementia (BPSD). Non-pharmacological interventions are needed to address these areas, and online applications have been shown to be safe and effective. To ensure the efficacy of such interventions, racially, ethnically, geographically, and socioeconomically diverse participants must be recruited to increase the generalizability of study outcomes. This protocol paper describes a recruitment plan using Geographic Information Systems (GIS) to reach a representative sample of caregivers across the United States for a national Phase III clinical study. Using publicly available census data from the American Community Survey (ACS), combined with location data for local aging resources such as Area Agencies on Aging (AAA), recruitment will be derived from data analysis conducted in ESRI ArcGIS v10.7.1. Datasets including age, gender, income, and education will be assessed nationally at the county and census tract spatial scale in a nine-step process to develop recruitment priority areas containing high concentrations of eligible participants living in the community. Overall, the current protocol will demonstrate the value of GIS in tailoring targeted outreach strategies to recruit community-dwelling populations through local resource institutions. This novel approach may have far-reaching implications in future recruitment initiatives and help to secure racially/ethnically diverse samples.

The use of community advisory boards in pragmatic clinical trials: The case of the adult day services plus project.

Community advisory boards (CABs) have become increasingly common and important in translational research in health care including studies focusing on home and community-based services. CABs are composed of stakeholders who share interest in research projects and typically include patients/clients, practitioners, community members, policymakers, and researchers. CABs advise researchers on issues ranging from research design and recruitment to implementation and dissemination. In this article, the researchers detail their experiences with the CAB for a pragmatic clinical trail of Adult Day Services (ADS) Plus, an education and support intervention for family caregivers of older adults with dementia using adult day services. Lessons learned, guidelines, and best practices are then presented for developing and working with a CAB in healthcare research.

Dissemination and Implementation of Evidence-Based Dementia Care Using Embedded Pragmatic Trials.

There are many nonpharmacologic interventions tested in randomized clinical trials that demonstrate significant benefits for people living with Alzheimer's disease (AD) and AD-related dementia, their care partners, or professional care providers. Nevertheless, with few exceptions, proven interventions have not been translated for delivery in real-world settings, such as home care, primary care, hospitals, community-based services, adult day services, assisted living, nursing homes, or other healthcare systems (HCSs). Using embedded pragmatic clinical trial (ePCT) methods is one approach that can facilitate dissemination and implementation (D&I) of dementia care interventions. The science of D&I can inform the integration of evidence-based dementia care in HCSs by offering theoretical frameworks that capture field complexities and guiding evaluation of implementation processes. Also, D&I science can suggest evidence-based strategies for implementing dementia care in HCSs. Although D&I considerations can inform each stage of dementia care intervention development, it is particularly critical when designing ePCTs. This article examines fundamental considerations for implementing dementia-specific interventions in HCSs and how best to prepare for successful dissemination upstream in the context of ePCTs, thereby illustrating the critical role of the D&I Core of the National Institute on Aging Imbedded Pragmatic Alzheimer's Disease and AD-Related Dementias Clinical Trials Collaboratory. The scientific premise of the D&I Core is that having the "end" in mind, upfront in the design and testing of dementia care programs, can lead to decision-making that optimizes the ultimate goal of wide-scale D&I of evidence-based dementia care programs in HCSs. J Am Geriatr Soc 68:S28-S36, 2020.

Student Reflections on Interprofessional Education: Moving from Concepts to Collaboration.

PURPOSE: We analyzed student reflection essays to evaluate the impact of an interprofessional education (IPE) curriculum on what students value and personally learn from their participation. METHODS: After completing a 2-year IPE curriculum in the Health Mentors Program (HMP), while partnered with a mentor with chronic disease(s), 264 students from six health professions submitted personal reflection papers, using the Rolfe Reflection-in-Action model. A sample of 60 essays was analyzed using conventional content analysis guided by grounded theory. RESULTS: Qualitative analysis revealed 15 themes and 14 subthemes in the essays. The themes and subthemes were organized into four main categories: program, mentor, team, and self. Most students viewed the HMP curricular design positively. In particular, they cited the team-based home visit as a critical piece in changing their perceptions of the impact of chronic disease on their health mentor. Mentors' positive attitude and approach toward life also had a profound impact on students. Approximately half of the students identified positive team dynamics as a key component for optimal patient care and better health outcomes, noting improved understanding of team members' professional roles and responsibilities after working together in this longitudinal IPE program. The "self" category had the highest frequency count, with students describing positive changes in self-assessed knowledge, skills, and attitudes. CONCLUSIONS: Our findings suggest that reflective writing is an effective exercise through which students can explore their attitudes toward IPE and team-based care of individuals with chronic diseases. After participation in this IPE curriculum, students identified having an improved understanding of collaborative practice goals, indicative of meeting an IPE core competency, and described a new understanding of patient-centeredness.