The main cause of behavioral symptoms in patients with Alzheimer's disease (AD) is the deterioration of brain cells which causes an decline in the individual's ability to make sense of the world. Coping with such difficult behaviors is challenging for many caregivers, and it is associated with many distressful situations. Despite current knowledge of adverse effects of dementia on families, dementia caregivers remain the hidden patients with high incidence of stress (60%) and depression (30%). The physical and emotional impact of dementia caregiving is estimated to $9.7 billion in health care costs in the United States (2014). In separate studies, hospitalization and emergency department visits were more likely for dementia caregivers who helped care recipients who were depressed, had low functional status, or had behavioral disturbances. The stress of dementia caregiving is influenced by several factors, such as severity of dementia symptoms, how challenging distressful situations are perceived by caregivers, and available resources. Although information and programs about dementia are available to the public, an essential missing tool is how to deal with difficult behaviors of dementia patients in an effective manner, as they are very common and demanding. The goal of this Phase I project is to develop the Virtual Patient Behavioral Response (VPBR) training to improve skills on how to respond to dementia behavioral problems and enhance caregiver coping. We will implement this training in a mobile app (Caring Response App, CRA). The expected benefits include improved psychological health in caregivers and reduced stress related to behavioral disturbances of AD patients. Key innovations include: (1) integration of virtual patient techniques in a mobile app for dementia caregivers; (2) anonymous sharing of real responses and techniques used by caregivers in day-to-day situations; and (3) automated content update to users through an advanced crowdsourcing of caregiving knowledge (after being curated by project personnel) to promote best practices that caregivers found helpful. In partnership with the Alzheimers Association, Stanford University, and caregivers, we will determine the curriculum of the new program. Focus groups involving caregivers will inform the project and explore caregiver attitudes towards virtual patient training, mobile app usage, and sharing helpful tips on how to deal with difficult behaviors. A prototype will be developed and tested with dementia caregivers to establish the feasibility of the approach in Phase I. The results will guide the Phase II development of a novel intervention that integrates virtual patient behavioral response, aggregation of community shared experience, effective training on difficult dementia behaviors, and a mobile app to be deployed to millions of families struggling with Alzheimers. Commercial Opportunity: VPBR training will be available to dementia caregivers (~15 Million people in US) as a mobile app subscription. This model has been very successful with our current mobile apps in App Stores.
Public Health Relevance Statement: Public Health Relevance A growing number of dementia family caregivers (15 million in US) are at high risk for depressive symptoms and syndromes related to the stress and difficulties of caregiving for individuals with Alzheimer Disease (AD) and related dementia. Behavioral and psychological symptoms in dementia are the principal sources of stress in caregivers, which may lead to declines in overall caregiver's health and increased risk for developing chronic conditions; therefore, we propose a new training to prepare family caregivers, improve caregiver skills on how to respond to behavioral problems, and teach how to manage stressful and difficult behaviors of dementia patients. After Phase II is completed, the expected outcomes of our project are the following: reduce dementia caregiver stress, enhance quality of life, decrease burden of care, and increase coping skills; in addition, we expect the following potential indirect outcomes (not measured by this study): delay institutionalization of dementia patients, reduce caregiver medication, and thereby decrease economic costs.
Project Terms: Access to Information; Adopted; Adoption; Adult; Adverse effects; adverse outcome; Age; Alzheimer's Disease; American; Android; Attitude; base; Behavior; Behavioral; behavioral response; Behavioral Symptoms; brain cell; care burden; care recipients; Caregiver Burden; Caregivers; caregiving; Caring; case-based; Cellular Phone; Centers for Disease Control and Prevention (U.S.); Chronic; Clinical; Clinical Trials; Cognitive; Communities; Computer software; Computers; coping; Coping Skills; cost; crowdsourcing; Data; Dementia; Dementia caregivers; dementia caregiving; Depressed mood; depressive symptoms; Depressive Syndromes; Deterioration; Development; economic cost; Educational Curriculum; Educational process of instructing; Electronic Mail; Emergency department visit; Emotional; Emotions; Evaluation; experience; Family; Family Caregiver; Fatigue; Focus Groups; functional status; Goals; Government; Health; Health Care Costs; high risk; Hospitalization; Human Resources; improved; Incidence; Individual; innovation; Institutionalization; Internet; Intervention; Knowledge; Lead; Learning; Life; Measures; medical schools; Mental Depression; Mental Health; mobile application; Modeling; mortality; Motivation; novel; Outcome; Ownership; Patient Education; Patients; Perception; Personality; Pharmaceutical Preparations; Phase; Problem behavior; programs; prototype; psychological symptom; public health relevance; Quality of life; Reaction; Recruitment Activity; Reporting; Resources; response; Risk; rural underserved; Services; Severities; skills; Source; Stress; Symptoms; Techniques; Testing; Text; tool; Training; Translating; United States; Universities; Update; usability; virtual
