Over the past 3 decades, more than 200 dementia caregiver interventions have been tested in randomized clinical trials and found to be efficacious. Few programs have been translated for delivery in various service contexts, and they remain inaccessible to the 15+ million dementia family caregivers in the United States. This article examines translational efforts and offers a vision for more rapid advancement in this area. We summarize the evidence for caregiver interventions, review published translational efforts, and recommend future directions to bridge the research-practice fissure in this area. We suggest that as caregiver interventions are tested external to service contexts, a translational phase is required. Yet, this is hampered by evidentiary gaps, lack of theory to understand implementation challenges, insufficient funding and unsupportive payment structures for sustaining programs. We propose ways to advance translational activities and future research with practical applications.

BackgroundBehavioral and psychological symptoms of dementia (BPSD) are universal and associated with multiple negative outcomes. This pilot randomized controlled trial (RCT) evaluated the effect of using the WeCareAdvisor, an innovative web-based tool developed to enable family caregivers to assess, manage, and track BPSD.MethodsThis RCT enrolled 57 dementia family caregivers from community and clinical settings in Ann Arbor, Michigan and Baltimore, Maryland. Participants were randomly assigned to immediate use of the WeCareAdvisor tool (WCA, n = 27) or a Waitlist control group (n = 30) that received the tool after a one-month waiting period. Outcomes for the caregiver and the person they were caring for were assessed at baseline (T0) and one-month followup for both the WCA (T1) and Waitlist control (T2) groups.ResultsCaregiver mean age was 65.9 ± 14.0 years old. About half (49%) were spouses. Baseline characteristics were comparable between groups except for mean caregiver confidence which was higher in the control group (WCA 35.0 ± 10.0 vs. Waitlist control 39.7 ± 6.9, p = 0.04). There were no significant differences between the WCA and control groups in characteristics of the person with dementia. After their one-month of tool use (T1), WCA caregivers showed significant within group improvement in caregiver distress (− 6.08 ± 6.31 points, t = − 4.82, p < 0.0001) and behavioral frequency (− 3.60 ± 5.05, t = − 3.56, p = 0.002), severity (− 3.24 ± 3.87, t = − 4.19, p = 0.0003) and total behavioral score (− 6.80 ± 10.73, t = − 3.17, p = 004). In the same timeframe, Waitlist control caregivers showed a significant decrease in confidence (− 6.40 ± 10.30, t = − 3.40, p = 0.002). The WCA group showed greater improvement in distress compared to the Waitlist group (T0-T1; t = − 2.49, p = 0.02), which remained significant after adjusting for site and baseline distress. There were no significant between-group differences in caregiver confidence or other secondary outcomes. After their one month of tool use (T2), the Waitlist group also showed significant improvement in caregiver distress (− 3.72 ± 7.53, t = − 2.66, p = 0.013), stress (− 0.41 ± 1.02, t = − 2.19, p = 0.037), confidence (4.38 ± 5.17, t = 4.56, p < 0.0001), burden (− 2.76 ± 7.26, t = − 2.05, p = 0.05), negative communication (− 1.48 ± 2.96, t = − 2.70, p = 0.012) and behavioral frequency (− 1.86 ± 4.58, t = − 2.19, p = 0.037); distress remained significant after adjustment.ConclusionsIn this pilot RCT, WCA use resulted in a significant decrease in caregiver distress. Future research will identify whether longer use of WCA can impact other caregiver and behavioral outcomes.Trial registrationClinicaltrials.gov identifier NCT02420535 (Date of registry: 4/20/2015, prior to the start of the clinical trial).

TAP-H represents a unique collaborative care model that integrates facility-based staff in the behavioral treatment of patients with dementia and results in improved affect and reduced negative behaviors. TAP-H can be incorporated into routine hospital care and payment mechanisms. Future efforts should evaluate its effectiveness in reducing inappropriate pharmacologic use and strategies to enhance continued activity use by staff during hospitalization and families following discharge.

Among over 5 million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, , identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6 months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3 months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6 months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS.

Background Neuropsychiatric symptoms (NPS) occur in people with dementia throughout disease course and across etiologies. NPS are associated with significant morbidities and hastened disease processes. Nevertheless, people with dementia are not systematically assessed for NPS in clinical settings. We review existing NPS measures for clinical and/or research purposes, and identify measurement gaps. Methods We conducted a computerized search of peer-reviewed published studies of measures (January 1, 1980–December 1, 2013) using multiple search terms. Measures selected for review were in English, had adequate psychometric properties, and were developed for or used with people with dementia. Papers describing measures were evaluated by three coders along seven characteristics: behavioral domains, number of items, method of administration, response categories, targeted population, setting, and psychometric properties. Results Overall, 2,233 papers were identified through search terms, and 36 papers from manual searches of references. From 2,269 papers, 85 measures were identified of which 45 (52.9%) had adequate psychometric properties and were developed or used with dementia populations. Of these, 16 (35.6%) were general measures that included a wide range of behaviors; 29 (64.4%) targeted specific behaviors (e.g. agitation). Measures differed widely as to behaviors assessed and measurement properties. Conclusions A robust set of diverse measures exists for assessing NPS in different settings. No measures identify risk factors for behaviors or enable an evaluation of the context in which behaviors occur. To improve clinical efforts, research is needed to evaluate concordance of behavioral ratings between formal and informal caregivers, and to develop and test measures that can identify known risks for behaviors and the circumstances under which behaviors occur.