Preliminary translation of 'Reducing Disability in Alzheimer's Disease' among individuals with intellectual disabilities and caregiver dyads.

BACKGROUND: The Reducing Disability in Alzheimer's Disease in Kansas City (RDAD-KC) intervention has been shown to improve the health of individuals with dementia and caregiver dyads. This manuscript reports the results of implementing the RDAD among individuals with intellectual disabilities and caregiver dyads. METHODS: Nine community agencies deployed the 12-week intervention. We assessed changes in individuals with intellectual disabilities' behavioural symptom related severity and physical activity, and caregivers' behavioural symptom-related distress, unmet needs, and caregiver strain. RESULTS: Forty-four dyads enrolled, and 23 (~60 years, 48% female) completed ≥75% of the intervention. We observed decreases in behavioural symptom related severity (p = .07) and increases in physical activity (p = .20) among individuals with intellectual disabilities. We also observed decreases in behavioural symptom related distress (p = .14), unmet needs (p = .50), and caregiver strain (p = .50) among caregivers. CONCLUSIONS: The RDAD-KC intervention showed promising, although statistically non-significant, benefits among individuals with intellectual disabilities and their caregivers.

Table Correction: Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention.

[This corrects the article DOI: 10.2196/13599.].

Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention.

BACKGROUND: Families living with Alzheimer disease and related dementias have more access to support thanks to the development of effective telehealth-based programs. However, as technological science grows, so does the risk that these technology-based interventions will diverge from foundational protocols, diluting their efficacy. Strategies that ensure programs are delivered as intended, with fidelity to guiding protocols, are needed across the intervention spectrum-from development to wide-scale implementation. Few papers address fidelity in their technology-based work. Here, we present our translated telehealth intervention, Tele-STAR, with our fidelity findings. OBJECTIVE: This study aimed to assess the preliminary efficacy of Tele-STAR on reducing family caregiver burden and depression. Across the implementation phases, we assessed the fidelity of a caregiver education intervention, STAR-C, as it was translated into a telehealth option (Tele-STAR). METHODS: A total of 13 family caregivers consented to participate in an 8-week, videoconference-based intervention (Tele-STAR). Tele-STAR efficacy in reducing the affective burden of caregiving was assessed using pre- and postintervention paired t tests. Content experts assessed program fidelity by reviewing and rating Tele-STAR materials for adherence to the original STAR-C protocol. These experts assessed treatment fidelity by viewing videos of the intervention and rating adherence on a checklist. RESULTS: Tele-STAR reduced caregiver burden and retained good program and treatment fidelity to STAR-C. CONCLUSIONS: We found Tele-STAR reduced caregiver burden and had good fidelity to the original protocol. Assessing fidelity is a complex process that requires incorporation of these procedures early in the research process. The technology used in this study facilitated the accrual of informative data about the fidelity of our translated intervention, Tele-STAR.

Training Area Agencies on Aging Case Managers to Improve Physical Function, Mood, and Behavior in Persons With Dementia and Caregivers: Examples from the RDAD-Northwest Study.

The Reducing Disability in Alzheimer's Disease (RDAD) program has been shown to be an effective tool for teaching caregivers strategies to improve mood, behavior, and physical function in persons with dementia. This paper describes how RDAD has been translated and implemented for use by Area Agencies on Aging (AAA) case managers across Washington and Oregon. Modifications to the original RDAD program as part of its community translation included decreasing the number of in-person sessions while preserving all educational content; involving caregivers in exercise activities for themselves as well as acting as exercise coaches for care-receivers; and enrolling persons with cognitive impairment due to mixed etiologies. This paper describes these changes and their rationale, the challenges faced by community agencies recruiting for and delivering evidence-based programs, and illustrates the actual RDAD implementation process through several brief case examples. Case examples also illustrate how RDAD-Northwest can be useful with care-receivers with a range of cognitive impairment severity, family caregiving situations, and levels of mood and behavioral challenges.

Managing Challenging Behaviors of Dementia in Veterans: Identifying and Changing Activators and Consequences Using STAR-VA.

One of the most challenging clinical issues for long-term care staff is the management of dementia-related behavioral symptoms. STAR-VA is an interdisciplinary intervention for managing challenging behaviors of Veterans with dementia in Community Living Centers (CLCs) within the U.S. Department of Veterans Affairs. The goals of the current article are to delineate categories of challenging behaviors found in CLCs, the context in which behaviors occurred, and the interventions used by CLC clinical teams when implementing STAR-VA. In 2013, 17 CLC teams completed STAR-VA training, enrolling 71 Veteran participants. Four independent raters identified common assessment and intervention themes for six behavior categories, coding activators, consequences, goal behaviors, and care plans for each category. Successful care plans included staff changes in communication approaches, incorporation of pleasant events into care, and individualized environmental modifications. Findings illustrate the range of interventions that CLC teams may apply as a result of systematic behavioral assessment informing an understanding of activators and consequences of dementia-related behaviors. [Journal of Gerontological Nursing, 43(2), 33-43.].

Statewide implementation of "reducing disability in Alzheimer's disease": impact on family caregiver outcomes.

There have been few replications of efficacious evidence-based programs for dementia caregivers offered in community settings. This study highlights the replication of the evidence-based Reducing Disability in Alzheimer's Disease program and explores the changes in outcomes for participating caregivers and whether those changes are related to level of program utilization. With data from 219 caregivers, regression results indicate that more exercise sessions are associated with a decrease in caregiver strain and more behavior management sessions are associated with a decrease in unmet needs after 3 months. Findings demonstrate how a multicomponent program can have positive benefits for family caregivers.

Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA).

Background: Sexual and gender minority (SGM) older adults and their care partners, compared to the general population, face unique vulnerabilities that exacerbate living with dementia, including elevated disparities in comorbidities, social isolation, and structural inequities, such as discrimination and lack of access to supports. Methods: This paper describes the virtual adaptation process of the first-ever randomized controlled clinical trial intervention, Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA), that was designed for SGM older adults living with dementia and their care partners and built upon the foundation of RDAD and NHAS. Results: The virtual adaptation of IDEA was guided by the goals of accessibility, quality, ease of delivery, sustainability, and cultural relevance. The implementation required the development of a HIPPA-compliant online virtual platform, coach and participant virtual training, and modification of necessary intervention elements and materials, as needed. Based on the preliminary findings, the participants and intervention coaches responded well to the virtual adaptation of IDEA. When comparing to in-person delivery, the virtual delivery decreased attrition among both intervention participants and coaches. Discussion: The virtual adaptation of the IDEA intervention resulted in preliminary, unexpected, yet potentially important benefits, including the ability to expand the reach of the intervention and decreased attrition. Virtual interventions are an emerging field for people living with dementia and their care partners and additional systematic research is needed to fully assess the benefits and limitations as well as to evaluate if specific subgroups are better served by differing delivery modalities.

Design and development of the first randomized controlled trial of an intervention (IDEA) for sexual and gender minority older adults living with dementia and care partners.

BACKGROUND: Heightened risks of cognitive impairment, disability, and barriers to care among sexual and gender minority (SGM) older adults are well documented. To date, culturally responsive evidence-based dementia interventions for this population do not exist. OBJECTIVE: This study describes the design of the first randomized controlled trial (RCT) testing a culturally responsive cognitive behavioral and empowerment intervention, Innovations in Dementia Empowerment and Action (IDEA), developed to address the unique needs of SGM older adults living with dementia and care partners. METHODS: IDEA is a culturally enhanced version of Reducing Disability in Alzheimer's Disease (RDAD), an efficacious, non-pharmaceutical intervention for people with dementia and care partners. We utilized a staggered multiple baseline design with the goal to enroll 150 dyads randomized into two arms of 75 dyads each, enhanced IDEA and standard RDAD. RESULTS: IDEA was adapted using findings from the longitudinal National Health, Aging, and Sexuality/Gender study, which identified modifiable factors for SGM older adults, including SGM-specific discrimination and stigma, health behaviors, and support networks. The adapted intervention employed the original RDAD strategies and enhanced them with culturally responsive empowerment practices designed to cultivate engagement, efficacy, and support mobilization. Outcomes include adherence to physical activity, reduction in perceived stress and stigma, and increased physical functioning, efficacy, social support, engagement, and resource use. CONCLUSION: IDEA addresses contemporary issues for underserved populations living with dementia and their care partners. Our findings will have important implications for marginalized communities by integrating and evaluating the importance of cultural responsiveness in dementia and caregiving interventions.