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.

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.

Cultural Adaptation of the Reducing Disability in Alzheimer's Disease (RDAD) Protocol for an Intervention to Reduce Behavioral and Psychological Symptoms of Dementia in Thailand.

BACKGROUND: The Reducing Disability in Alzheimer's Disease (RDAD) program is an evidence-based intervention found to be feasible for implementation in community settings in the United States, and effective in reducing depression, one of the major behavioral and psychological symptoms of dementia (BPSD). OBJECTIVE: The goal of the study is to culturally adapt the RDAD for persons with dementia living in community settings of Thailand. METHODS: Key adaptation steps included: 1) assess the community, 2) understand/select the intervention, 3) consult with experts/stakeholders, 4) decide what needs to be adapted, 5) adapt the original program, 6) train staff, and 7) pilot test the adapted materials. RESULTS: Modifications to the original RDAD protocol included changes in number of sessions, mode of delivery, and the specific pleasant activities targeted. The pilot test demonstrated the feasibility and acceptance of the adapted RDAD intervention protocol. Implementers were able to comprehend and implement the core components of the intervention, while family members demonstrated ability to follow instructions, gain knowledge about dementia, and improve skills for setting up realistic goals. CONCLUSION: Following the key adaptation steps outlined above, we were able to successfully modify the RDAD for the Thai cultural context, maintaining core components of the original protocol. Program implementers demonstrated their ability to supervise family caregivers and help them gain the knowledge and skills needed to provide care for older adults with dementia. Findings from the pilot studies were incorporated into final training and intervention protocols currently being implemented and evaluated in a randomized implementation trial in Thailand.

Validity of Instrumented 360° Turn Test in Older Adults with Cognitive Impairment.

AIMS: To examine concurrent and construct validity of inertial sensor 360°turn measures in relation with motion capture and mobility assessments in cognitively impaired older adults. METHODS: Data was collected in 31 participants, mean age 85.2 (SD 5.2), during clockwise (CW) and counter clockwise (CCW) 360° turns using (1) APDM body-worn inertial sensors and (2) Qualisys 8-camera laboratory-based motion capture. RESULTS: Absolute agreement between inertial sensor and motion capture measures was excellent for turn duration and turn peak velocity (ICC = 0.96-0.98). Strong to moderate correlations were present between inertial sensor turn measures and performance on the Timed Up and Go, Short Physical Performance Battery and 90-s Balance Test. ROC curve analysis of CCW 360° turn duration and turn peak velocity distinguished higher risk versus lower risk for mobility disability. CONCLUSIONS: Inertial sensor 360° turn measures demonstrated concurrent and construct validity in relation to motion capture and mobility assessments.

Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study.

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. OBJECTIVE: The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. METHODS: Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. RESULTS: The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers' limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. CONCLUSIONS: Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.

Effectiveness of "Reducing Disability in Alzheimer's Disease" Among Dyads With Moderate Dementia.

Replications of evidence-based dementia care receiver-caregiver dyad interventions in the community are scarce. We aimed to assess the effectiveness of the Kansas City implementation of Reducing Disability in Alzheimer's Disease (RDAD) among a convenience sample of dyads with moderate dementia, which addressed needs identified by nine participating community agencies. We hypothesized that dyads' mental health and physical activity outcomes would improve from baseline to end-of-treatment. The final analytic sample included 66 dyads. Outcomes improved (p < .01) from pre- to post-intervention: behavioral symptom severity (range 0-36) decreased from 11.3 to 8.6, physical activity increased from 125.0 to 190.0 min/week, caregiver unmet needs (range 0-34) decreased from 10.6 to 5.6, caregiver behavioral symptom distress (0-60) decreased from 15.5 to 10.4, and caregiver strain (0-26) decreased from 11.1 to 9.7. This adapted implementation of RDAD leads to clinically meaningful improvements and might inform scaling-up.

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

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

Translating an Evidence-based Multicomponent Intervention for Older Adults With Dementia and Caregivers.

BACKGROUND AND OBJECTIVES: Effective community-based programs to maintain health and well-being of adults with dementia are needed. This article describes the translation, implementation, and effectiveness of a multicomponent exercise plus behavioral/psychosocial intervention (Reducing Disability in Alzheimer's Disease-NorthWest [RDAD-NW]) conducted by staff in regional Area Agencies on Aging (AAAs). RESEARCH DESIGN AND METHODS: Staggered multiple baseline design was used; 10 AAAs, 20 case managers, and 255 community-residing persons with dementia (PWDs), and family caregivers were enrolled. RDAD-NW was conducted in-home over 6 weeks with aerobic/endurance, strength, and balance/flexibility exercises, dementia education, training to increase pleasant events, and activator-behavior-consequence problem-solving approach. Outcomes included case manager treatment fidelity, and caregiver/PWD physical activity, restricted activity days, physical functioning, quality of life, and affect. RESULTS: RDAD-NW was successfully translated and implemented by AAA agency staff through their usual service provision mechanisms. Staff responded positively and delivered the program with a high degree of fidelity. Caregiver/PWD dyads also responded favorably engaging in both exercise and behavioral/psychosocial portions of the program. A total of 207 dyads (81%) completed the intervention and 140 (55%) completed the 13-month follow-up. PWD physical activity increased significantly pre- to posttreatment (p < .001, ES = .54), and 13 months (p < .01, ES = .21). Quality of life of PWD increased significantly pre- to posttreatment (p < .001, ES = .29); caregiver depression improved pre- to posttreatment (p = .01, ES = -.18). DISCUSSION AND IMPLICATIONS: RDAD-NW was successfully translated and implemented by AAA case managers and resulted in increased physical activity and improved behavioral and emotional outcomes of caregiver/PWDs. Results support continued dissemination and implementation of RDAD-NW. CLINICAL TRIALS REGISTRATION: NCT01708304.

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.

Exploring Path Models of Disablement in Residential Care and Assisted Living Residents.

This study examined the relationships between individual and environmental factors and physical activity, and between physical activity and functional limitations and disability in residential care/assisted living (RC/AL) residents. Participants completed questionnaires and physical performance tests, and wore the Fitbit Motion Tracker® to capture physical activity. Model fit was analyzed using two-level path models with residents nested within RC/AL settings. Model parameters were estimated using the MPlus robust maximum likelihood method. A multilevel model with good fit (root mean square error of approximation = 0.07, comparative fit index [CFI] = 0.91) showed that persons with greater exercise self-efficacy were more physically active, and persons who were more physically active had better physical function and less disability. Setting-level factors did not significantly correlate with physical activity or disability. Although environmental factors may influence physical activity behavior, only individual factors were associated with physical activity in this sample of RC/AL residents.

Concurrent Validity of Postural Sway Measures in Older Adults with Cognitive Impairment.

AIMS: To examine concurrent validity of inertial sensor (APDM ISway) versus force plate center of pressure (COP) measures of postural sway in cognitively impaired older adults. METHODS: Participants, mean age 85.6 (SD 4.8), were tested in 4 static standing conditions: (1) eyes open/normal base, (2) eyes open/narrow base, (3) eyes closed/normal base, and (4) eyes closed/narrow base. ISway and COP measures were collected. RESULTS: Strong correlations between ISway trunk sway smoothness [ISway JERK, (m 2 /s 5 )] and COP path length (r = 0.67-0.85) and COP mean velocity (r = 0.77-0.87); also ISway total sway acceleration path length/trail duration [ISway PATH, (m2/s2)] and COP path length (r = 0.77-0.87) and COP mean velocity (r = 0.77-0.91). Increased sway was detected in narrow versus normal base and eyes closed versus open conditions (P = .001). CONCLUSIONS: APDM ISway demonstrated concurrent validity to force-plate COP and changes in postural sway were detected between conditions.

Limbic and Basal Ganglia Neuroanatomical Correlates of Gait and Executive Function: Older Adults With Mild Cognitive Impairment and Intact Cognition.

OBJECTIVE: This study aimed to examine differences in spatiotemporal gait parameters between older adults with amnestic mild cognitive impairment and normal cognition and to examine limbic and basal ganglia neural correlates of gait and executive function in older adults without dementia. DESIGN: This was a cross-sectional study of 46 community-dwelling older adults, ages 70-95 yrs, with amnestic mild cognitive impairment (n = 23) and normal cognition (n = 23). Structural magnetic resonance imaging was used to attain volumetric measures of limbic and basal ganglia structures. Quantitative motion analysis was used to measure spatiotemporal parameters of gait. The Trail Making Test was used to assess executive function. RESULTS: During fast-paced walking, older adults with amnestic mild cognitive impairment demonstrated significantly slower gait speed and shorter stride length compared with older adults with normal cognition. Stride length was positively correlated with hippocampal, anterior cingulate, and nucleus accumbens volumes (P < 0.05). Executive function was positively correlated with hippocampal, anterior cingulate, and posterior cingulate volumes (P < 0.05). CONCLUSIONS: Compared with older adults with normal cognition, those with amnestic mild cognitive impairment demonstrated slower gait speed and shorter stride length, during fast-paced walking, and lower executive function. Hippocampal and anterior cingulate volumes demonstrated moderate positive correlation with both gait and executive function, after adjusting for age. TO CLAIM CME CREDITS: Complete the self-assessment activity and evaluation online at http://www.physiatry.org/JournalCME CME OBJECTIVES: Upon completion of this article, the reader should be able to: (1) discuss gait performance and cognitive function in older adults with amnestic mild cognitive impairment versus normal cognition, (2) discuss neurocorrelates of gait and executive function in older adults without dementia, and (3) recognize the importance of assessing gait speed and cognitive function in the clinical management of older adults at risk for dementia. LEVEL: Advanced ACCREDITATION: The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.The Association of Academic Physiatrists designates this Journal-based CME activity for a maximum of 0.5 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

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.

Randomized trial of telephone versus in-person delivery of a brief psychosocial intervention in post-stroke depression.

BACKGROUND: A psychosocial behavioral intervention delivered in-person by advanced practice nurses has been shown effective in substantially reducing post-stroke depression (PSD). This follow-up trial compared the effectiveness of a shortened intervention delivered by either telephone or in-person to usual care. To our knowledge, this is the first of current behavioral therapy trials to expand the protocol in a new clinical sample. 100 people with Geriatric Depression Scores ≥ 11 were randomized within 4 months of stroke to usual care (N = 28), telephone intervention (N = 37), or in-person intervention (N = 35). Primary outcome was response [percent reduction in the Hamilton Depression Rating Scale (HDRS)] and remission (HDRS score < 10) at 8 weeks and 12 months post treatment. RESULTS: Intervention groups were combined for the primary analysis (pre-planned). The mean response in HDRS scores was 39% reduction for the combined intervention group (40% in-person; 38% telephone groups) versus 33% for the usual care group at 8 weeks (p = 0.3). Remission occurred in 37% in the combined intervention groups at 8 weeks versus 27% in the control group (p = 0.3) and 44% intervention versus 36% control at 12 months (p = 0.5). While favouring the intervention, these differences were not statistically significant. CONCLUSIONS: A brief psychosocial intervention for PSD delivered by telephone or in-person did not reduce depression significantly more than usual care. However, the comparable effectiveness of telephone and in-person follow-up for treatment of depression found is important given greater accessibility by telephone and mandated post-hospital follow-up for comprehensive stroke centers. Clinical Trial Registration URL: https://register.clinicaltrials.gov , unique identifier: NCT01133106, Registered 5/26/2010.

Research Priorities to Advance the Health and Health Care of Older Adults with Multiple Chronic Conditions.

OBJECTIVES: To prioritize research topics relevant to the care of the growing population of older adults with multiple chronic conditions (MCCs). DESIGN: Survey of experts in MCC practice, research, and policy. Topics were derived from white papers, funding announcements, or funded research projects relating to older adults with MCCs. SETTING: Survey conducted through the Health Care Systems Research Network (HCSRN) and Claude D. Pepper Older Americans Independence Centers (OAICs) Advancing Geriatrics Infrastructure and Network Growth Initiative, a joint endeavor of the HCSRN and OAICs. PARTICIPANTS: Individuals affiliated with the HCSRN or OAICs and national MCC experts, including individuals affiliated with funding agencies having MCC-related grant portfolios. MEASUREMENTS: A "top box" methodology was used, counting the number of respondents selecting the top response on a 5-point Likert scale and dividing by the total number of responses to calculate a top box percentage for each of 37 topics. RESULTS: The highest-ranked research topics relevant to the health and healthcare of older adults with MCCs were health-related quality of life in older adults with MCCs; development of assessment tools (to assess, e.g., symptom burden, quality of life, function); interactions between medications, disease processes, and health outcomes; disability; implementation of novel (and scalable) models of care; association between clusters of chronic conditions and clinical, financial, and social outcomes; role of caregivers; symptom burden; shared decision-making to enhance care planning; and tools to improve clinical decision-making. CONCLUSION: Study findings serve to inform the development of a comprehensive research agenda to address the challenges relating to the care of this "high-need, high-cost" population and the healthcare delivery systems responsible for serving it.

Adopting Evidence-Based Caregiver Training Programs in the Real World: Outcomes and Lessons Learned From the STAR-C Oregon Translation Study.

OBJECTIVES: This article describes the translation and evaluation of STAR-Community Consultants program (STAR-C), an evidence-based dementia caregiver training program, within the Oregon Department of Human Services. METHOD: Staff from two regional Area Agencies on Aging (AAAs) were trained to implement all aspects of STAR-C, including screening, recruitment of caregiver/care-receiver dyads, and treatment delivery. Mailed assessments of caregiver depression, burden, and care-receiver mood, behavior, and quality of life were collected at pre-treatment, post-treatment, and 6-month follow-up. RESULTS: One hundred fifty-one dyads entered the program; 96 completed the 8-week intervention. Significant positive post-treatment effects were obtained for caregiver depression, burden, and reactivity to behavior problems, and care-receiver depression and quality of life. At 6-month follow-up, improvements in caregiver reactivity and care-receiver depression were maintained. Caregivers reported high levels of satisfaction with the program. DISCUSSION: STAR-C was successfully and effectively implemented by participating AAAs. Recommendations for replication, including training, recruitment, and assessment procedures are provided.

Program Components and Outcomes of Individuals With Dementia: Results From the Replication of an Evidence-Based Program.

This study examines whether the delivery of three components, (a) exercise training, (b) behavior management skill building, and (c) dementia-related education, in an evidence-based program are differentially associated with changes in outcomes for individuals with dementia (IWDs) after 3 months. Data come from 508 IWDs participating in the community replication of the evidence-based "Reducing Disability in Alzheimer's Disease" program. Regression results indicate that after 3 months, more exercise sessions are associated with improvements in physical functioning, mobility, minutes exercising, and symptoms of depression; more dementia education sessions are related to fewer restricted activity days; and more behavior management sessions are related to more symptoms of depression. As resource-strapped agencies look to best serve participants, further analysis and consideration is needed to determine the ideal balance of program efficacy, feasibility, and resources, as well as program benefits for IWDs and caregivers.