Katherine A. Marx

Translating Evidence-Based Dementia Caregiving Interventions into Practice: State-of-the-Science and Next Steps

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.

Assessing neuropsychiatric symptoms in people with dementia: A systematic review of measures

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.

Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial

Among over 5million 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 6months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3months 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 6months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS.

WeCareAdvisor™: The Development of a Caregiver-focused, Web-based Program to Assess and Manage Behavioral and Psychological Symptoms of Dementia

Background/Objectives: Behavioral and psychological symptoms of dementia (BPSD) are nearly universal in dementia and associated with multiple negative outcomes. Current real-world management is largely pharmacologic, despite poor risk/benefit. The WeCareAdvisor was designed to enable family caregivers to assess, manage, and track BPSD using nonpharmacologic strategies. Design: In-depth qualitative data were collected from family caregivers of people with dementia to inform: (1) style of approach and “look and feel” of the tool, and (2) the types of psychoeducation most needed by caregivers. Results: We conducted 4 focus groups and a technology survey (n=26) as well as additional individual semistructured interviews (n=12) with family caregivers. Main themes of the qualitative work included: (1) need to minimize difficulty and training time; (2) importance of “one-stop shopping” for information; and (3) necessity for information to be tailored to the caregiver and person with dementia. This information was then combined with effective existing evidence-based behavioral strategies to create a web-based tailored caregiver-support tool. Conclusions: The WeCareAdvisor was designed with input on functionality and content by end-users, family caregivers. The randomized controlled trial of WeCareAdvisor will test whether the tool improves outcomes including caregiver upset and burden and frequency and severity of BPSD.

Feasibility of the Tailored Activity Program for Hospitalized (TAP-H) Patients With Behavioral Symptoms

PURPOSE OF THE STUDY To evaluate feasibility of implementing the Tailored Activity Program for Hospitals (TAP-H) to improve engagement in patients with dementia admitted for behavioral disturbances. DESIGN AND METHODS TAP-H involves up to 11 in-hospital sessions to develop activities tailored to patient interests and capabilities and train staff/families in their use. Interventionists (occupational therapists) recorded session lengths, patient engagement (N = 20), and staff (N = 4) readiness to use activities. Family interviews (N = 20) identified patient behaviors at admission and satisfaction with TAP-H 1 month postdischarge. A time series design with multiple behavioral observations (63 videotaped sessions) compared affective, verbal, and nonverbal behavioral responses in a standardized activity (baseline) to treatment sessions. RESULTS Average number of treatment sessions per patient was 8.00 (SD = 2.71, range 3-13). Average time spent per session was 38.18min (SD = 10.01, range 19.09-57.50). Interventionists observed high patient engagement across treatment sessions. Observational data revealed increases in pleasure and positive gestures and decreases in anxiety/anger, negative verbalizations, and negative nonverbal behaviors from baseline to intervention sessions. Staff improved in readiness and families expressed high program satisfaction with 59.4% of activities used at home. IMPLICATIONS 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.

A randomized trial of a web-based platform to help families manage dementia-related behavioral symptoms: The WeCareAdvisor™

Dementia-related behavioral symptoms are challenging clinical features occurring across etiologies and disease progression. They are associated with increased healthcare utilization, nursing home placement, family upset and burden. Families typically manage behavioral symptoms without requisite knowledge, skills and guidance. We designed WeCareAdvisor™ as an easy-to-use, evidence-informed web-based platform. It provides families knowledge about dementia, daily tips, and a systematic approach to describe behaviors, investigate modifiable contributors, create treatment plans (WeCareAdvisor™ Prescription) consisting of management tips tailored to symptom presentation, and evaluate effectiveness. WeCareAdvisor™ is being tested in a randomized trial to assess acceptability, usability and immediate impact on caregiver confidence managing and upset with behavioral symptoms, and secondarily, frequency of behavioral occurrences. Fifty-seven caregivers will be enrolled from communities and medical clinics at two sites (University of Michigan; Johns Hopkins University). Families reporting behavioral symptoms in a telephone screen are consented and interviewed at home. Following the interview, an envelope is opened by interviewers to reveal group assignment (immediate vs one-month delayed treatment group). Those receiving WeCareAdvisor™ immediately are provided an iPad and instruction in its use; those in the delayed treatment group are informed of next study steps. All caregivers are reassessed at home one month from baseline. The delayed treatment group then receives iPad instructions and are re-interviewed one month thereafter. During treatment phase, participants receive 3 weekly check-in calls to encourage tool use and troubleshoot. Key outcomes include number of times using WeCareAdvisor™ and for which behaviors, self-efficacy and upset managing behavioral symptoms, and frequency of behavioral occurrences. Clinical trial registration #: NCT02420535.

TESTING A WEB-BASED APPLICATION TO HELP INFORMAL CAREGIVERS MANAGE BEHAVIORS IN PERSONS WITH DEMENTIA: WECAREADVISORTM

learning opportunity. A total of 4 workshops have been conducted in various community settings. Results: Evaluation survey results from 36 participants from different community agencies indicated a high level of satisfaction with the workshop content. Feedback also indicated that the workshop helped in building awareness about thinking about dementia and their caregiving role in a different way and learning about different strategies that focussed on joyful and humorous experiences. Agencies have increased their requests for the Social Worker to deliver this workshop for their clients emphasizing the need for further research on the impact of the workshop on caregiver outcomes and the need for exploring strategies for living well with dementia and building resilience. Conclusions: Increasing role demands and stressors impact caregiving and take a toll on caregiver health. This program focuses on the positive and protective factors of caregiving including: joy, laughter and humor. The emphasis is on building protective factors and increasing resiliency and better coping in spite of all the stressors in the caregiving journey. This program aims to enhance the knowledge of participants with newer strategies to deal with the caregiving roles and demands. [1] Schulz, R., &Martire, L.M. (2004). Family Caregiving of Persons With Dementia: Prevalence, Health Effects, and Support Strategies [Abstract]. The American Journal of Geriatric Psychiatry,12(3), 240-249.