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.

Development and evaluation of a sleep education program for older adults with dementia living in adult family homes.

OBJECTIVES: To investigate the feasibility of implementing a Sleep Education Program (SEP) for improving sleep in adult family home (AFH) residents with dementia, and the relative efficacy of SEP compared with usual care control in a pilot randomized controlled trial. PARTICIPANTS: Thirty-seven AFH staff-caregivers and 47 residents with comorbid dementia and sleep disturbances. INTERVENTION: SEP consisted of four training sessions with staff-caregivers to develop and implement individualized resident behavioral sleep plans. MEASUREMENTS: Treatment fidelity to the SEP was assessed following the National Institutes of Health (NIH) Behavior Change Consortium model utilizing trainer observations and staff-caregiver reports. Resident sleep was assessed by wrist actigraphy at baseline, 1-month posttreatment, and 6-month follow-up. Caregiver reports of resident daytime sleepiness, depression, and disruptive behaviors were also collected. RESULTS: Each key area of treatment fidelity (SEP delivery, receipt, enactment) was identified, measured, and yielded significant outcomes. Staff-caregivers learned how to identify sleep scheduling, daily activity, and environmental factors that could contribute to nocturnal disturbances and developed and implemented strategies for modifying these factors. SEP decreased the frequency and disturbance level of target resident nocturnal behaviors and improved actigraphically measured sleep percent and total sleep time over the 6-month follow-up period compared with the control condition. CONCLUSION: Results suggest behavioral interventions to improve sleep are feasible to implement in adult family homes and merit further investigation as a promising intervention for use with AFH residents with dementia.

Systematic review of the effectiveness of non-pharmacological interventions to improve quality of life of people with dementia.

BACKGROUND: People with dementia report lower quality of life, but we know little about what interventions might improve it. METHODS: We systematically reviewed 20 randomized controlled trials reporting the effectiveness of non-pharmacological interventions in improving quality of life or well-being of people with dementia meeting predetermined criteria. We rated study validity with a checklist. We contacted authors for additional data. We calculated standardized mean differences (SMD) and, for studies reporting similar interventions, pooled standardized effect sizes (SES). RESULTS: Pooled analyses found that family carer coping strategy-based interventions (four studies, which did not individually achieve significance; n = 420; SES 0.24 (range 0.03-0.45)) and combined patient activity and family carer coping interventions (two studies, not individually significant; n = 191; SES 0.84 (range 0.54-1.14)) might improve quality of life. In one high-quality study, a care management system improved quality of life of people with dementia living at home. Group Cognitive Stimulation Therapy (GCST) improved quality of life of people with dementia in care homes. CONCLUSION: Preliminary evidence indicated that coping strategy-based family carer therapy with or without a patient activity intervention improved quality of life of people with dementia living at home. GCST was the only effective intervention in a higher quality trial for those in care homes, but we did not find such evidence in the community. Few studies explored whether effects continued after the intervention stopped. Future research should explore the longer-term impact of interventions on, and devise strategies to increase, life quality of people with dementia living in care homes or at home without a family carer.

Reactions of assisted living staff to behavioral and psychological symptoms of dementia.

This study investigates the experiences of unlicensed staff providing care for older adults with behavioral and psychological symptoms of dementia (BPSD). The purpose of this study was to describe the types and frequency of BPSD reported by unlicensed caregivers and to describe reactions and training of the caregivers who provide care to residents with BPSD. Data were derived from 87 staff-resident dyads in twelve assisted living facilities (ALFs). Types and frequency of BPSD and staff reaction to BPSD were collected using standardized measures. Demographic data included amount of staff training related to caring for someone with BPSD. Dementia related behaviors and psychological symptoms were prevalent in the ALF residents, with memory related symptoms being the most frequently reported. Symptoms of depression in the ALF residents were less frequent yet accounted for the highest level of staff reaction. Limited training related to caring for residents with cognitive impairment was reported by staff. Developing ALF staff skills in identifying and managing depression in older adults with dementia may serve a dual purpose of improving quality of life for residents and for ALF staff.

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.

Response to psychosocial treatment in poststroke depression is associated with serotonin transporter polymorphisms.

BACKGROUND AND PURPOSE: The Living Well With Stroke study has demonstrated effectiveness of a brief psychosocial treatment in reducing depressive symptoms after stroke. The purpose of this analysis was to determine whether key variables associated with prevalence of poststroke depression also predicted treatment response. METHODS: Response to a brief psychosocial/behavioral intervention for poststroke depression was measured with the Hamilton Rating Scale for Depression. Analysis of covariance models tested for interaction of potential predictor variables with treatment group on percent change in Hamilton Rating Scale for Depression from pre- to post-treatment as an outcome. RESULTS: Initial depression severity, hemispheric location, level of social support, age, gender, and antidepressant adherence did not interact with the treatment with respect to percent change in Hamilton Rating Scale for Depression when considered 1 at a time. Participants who carried 1 or 2 s-alleles at the 5-HTTLPR serotonin transporterpolymorphism or 1 or 2 9- or 12-repeats of the STin2 VNTR polymorphism had significantly better response to psychosocial treatment than those with no s-alleles or no 9- or 12-repeats. CONCLUSIONS: Opposite to the effects of antidepressant drug treatment with selective serotonin reuptake inhibitors, the Living Well With Stroke psychotherapy intervention was most effective in 5-HTTLPR s-allele carriers and STin2VNTR 9- or 12-repeat carriers. CLINICAL TRIAL REGISTRATION: URL: www.clinicaltrials.gov/ct/show/NCT00194454?order_1. Unique identifier: NCT00194454.

A home-delivered intervention for depressed, cognitively impaired, disabled elders.

OBJECTIVE: Problem Adaptation Therapy (PATH) is a new home-delivered intervention designed to reduce depression and disability in depressed, cognitively impaired, disabled elders. A new intervention is needed in this population as antidepressant treatment is effective in only a minority of these patients. METHODS: PATH focuses on the patient's ecosystem, which includes the patient, the caregiver, and the home environment, to address the needs of depressed, cognitively impaired, disabled elders. It builds on the therapeutic framework of Problem Solving Therapy (PST), which has been efficacious in decreasing depression and disability in cognitively intact depressed elders. To address the needs of depressed elders with advanced cognitive impairment, PATH incorporates environmental adaptations and invites caregiver participation. RESULTS: To illustrate the administration of PATH, two case studies with varying degrees of cognitive impairment and caregiver participation are presented. Both patients were administered 12 weeks of PATH at their home. At the end of treatment their depression and disability was significantly reduced. CONCLUSIONS: PATH is a new home-delivered intervention for depressed elders with cognitive impairment and disability focusing on reducing depression and disability by employing environmental adaptations and inviting caregiver participation. This intervention may provide a treatment alternative for a population with limited success of antidepressant treatment.

Spanish Revised Memory and Behavior Problems Checklist Scale (SpRMBPC): trans-cultural adaptation and validation of the RMBPC questionnaire.

BACKGROUND: The use of standardized scales is critical for monitoring the interventions within and between different populations, but the current Spanish tools are dispersed in several scales. A simple tool for simultaneously and exhaustively evaluating patient's symptoms and caregiver's distress in Spanish-speaking groups is needed. METHODS: RMBPC was translated into Spanish by cross-cultural adaptation. Comprehensibility and easiness of SpRMBPC were evaluated with 92 patient-caregiver dyads. Reliability, stability and scale structure were evaluated by Cronbach's α, test-retest and factor analysis respectively. Concurrent and discriminant validity were assessed by correlation with validated tools for measuring stage of dementia; memory, disruptive behaviors and depression symptoms of the patients; and anxiety, depression and burden of the caregivers (CDR, MMSE, NPIq, NPI disruption, NPI depression, HADS-A; HADS-D and Zarit Burden Interview respectively). RESULTS: Almost all caregivers completed the questionnaire (97% completeness; 7.5% missing data). Both the frequency of Patient's Symptoms and Caregiver Reaction scores and subscores displayed high stability and reliability. All of these scores correlated positively with their respective validated tools as predicted, except with MMSE. The patients' subscores for Disruptive Behaviors and Memory Impairment displayed their highest correlation with the disruptive symptoms and level of dementia validated tools. CONCLUSIONS: SpRMBPC is a validated tool for assessing the dementia stage and the psychiatric morbidity of patients and caregivers. The Frequency Disruption and Memory subscales assess specifically patient's disruptive symptoms and dementia stages. These tools can be applied to analyze the burden of the patient's disease and the caregiver's distress in Spanish-speaking populations.

The involvement of multiple caregivers in cognitive-behavior therapy for anxiety in persons with dementia.

OBJECTIVES: Peaceful Mind, a cognitive-behavioral therapy for treating anxiety in persons with dementia, is a promising new treatment currently under investigation. This article reports results of our examination of a modification of the treatment protocol in two cases that included multiple caregivers in treating two persons with dementia. METHOD: Two case presentations of the benefits and challenges of including multiple caregivers in treatment are discussed. Treatment outcome data for these cases were collected as part of a larger investigation of Peaceful Mind. RESULTS: The involvement of multiple collaterals resulted in several benefits, including increased family communication, as well as increased opportunities for the practice of new skills. These cases have also presented unique challenges requiring alterations in therapy structure and attention to issues of family conflict. CONCLUSIONS: Including multiple collaterals in cognitive-behavioral therapy for treating anxiety in persons with dementia is feasible and may be beneficial in maximizing treatment gains and increasing the family's investment in therapy.

Relationship between system-level characteristics of assisted living facilities and the health and safety of unlicensed staff.

This study examined system-level characteristics of assisted living facilities and the association between these characteristics and the health and safety outcomes of unlicensed staff. Forty-two unlicensed direct care workers completed a survey related to system-level stressors and the individual stress responses of staff. Measurement tools included the Work Stressor Inventory (WSI), General Health Questionnaire (GHQ-12), and Maslach Burnout Inventory (MBI). High levels of emotional exhaustion, psychiatric distress, and work-related injuries were reported by unlicensed staff. Providing care to residents with dementia-related behaviors and supporting families were the most frequently reported work stressors. System-level factors were significantly associated with staff role competence, job commitment, and emotional exhaustion. These results support the need for continued exploration, development, and evaluation of strategies to reduce occupational stressors at multiple levels in assisted living facilities.

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.