STAR Caregivers - Virtual Training and Follow-up

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ABSTRACT Alzheimer's Disease and related Dementias (ADRD) are debilitating conditions affecting more than 5 million Americans in 2014. It is projected that 8.4 million people with be diagnosed with ADRD over the next 15 years and health care costs attributable to ADRD are projected to be more than $1.2 trillion by 2050. Behavioral and Psychological Symptoms of Dementia (BPSD) are common and often involve aggressive behavior towards family caregivers (CG) in response to unmet needs, discomfort, or frustration. BPSD frequently lead to CG seeking medication to control patient symptoms. Antipsychotic use in persons with dementia (PWD) more than doubles mortality risk. The Choosing Wisely Guidelines from the American Psychiatric Association and American Geriatrics Society both recommend against prescribing antipsychotics as a first-line treatment for BPSD. Behavioral interventions such as STAR-Caregivers are efficacious first-line treatments for managing BPSD endorsed by the Administration on Aging. However, the programs have not been implemented widely – partly due to the intensity/cost of the programs and difficulty conducting outreach. No study has investigated CG willingness to reduce or discontinue antipsychotic use. We propose a Stage III clinical trial to ascertain the feasibility and acceptability of STAR Virtual Training and Follow-up (STAR- VTF) in which (a) training materials are delivered electronically and learning is self-directed, (b) caregivers have two in-home visits with a social worker and (c) where caregivers receive support from a social worker via secure messaging (email) within a web-based portal. We will compare outcomes in the STAR-VTF group to an attention control group (mailed material plus generic secure messages). Our specific aims are: (1) Assess the feasibility and acceptability of STAR-VTF to caregivers; (2) Assess the feasibility and acceptability of the program from the payer perspective; and (3) Test the hypotheses that (H1) caregiver participants in STAR-VTF will have lower levels of caregiver burden at 8 weeks and 6 months compared to an attention control group; and (H2) PWD participants in STAR-VTF will have lower rates of daily antipsychotic medication use at 6 months compared to attention control. We propose to recruit 100 CG-PWD dyads (50 in each arm). This will be the first study to test a low intensity, self-directed caregiver training program with secure message support from social workers. It will also be the first study to measure changes in antipsychotic medication use by PWD after CG training. The study is also innovative because it brings together leading experts in caregiver training, health information management, and care management. Third, this will be the first study to use automated data and natural language processing to identify potential caregivers in need of education/support at a time when antipsychotic medication use begins. Results of this study will inform a future multi-site trial in the Mental Health Research Network.