iCare Stress Management e-Training for Dementia Family Caregivers

DESCRIPTION (provided by applicant): The consequences of Alzheimer's Disease (AD) and related dementia are devastating not only for dementia patients, but also for family caregivers (estimated at 8.9 million), who are considered the hidden patients, and are at high risk for depressive symptoms and syndromes related to the stress and difficulties of dementia caregiving. Efficient, low-cost and accessible interventions are needed to cope with dementia caregiving, particularly stress management. The goals of our Fast Track Phase I/Phase II project are: (1) to enhance the quality of life and reduce the caregiving stress of dementia family caregivers with a new psychotherapy intervention (iCare eTraining); and (2) to develop the iCare stress management eTraining in low-cost and accessible methods (DVD and Internet) for deployment to millions of families who need it. The novel iCare incorporates: (a) integration of content from our caregiving studies with different ethnic groups; (b) adaptation of our psychotherapy curriculum, based on Cognitive Behavioral Therapy (CBT), for video and Internet modalities; and (c) creative use of DVD, online video, and web technology. The result is an innovative psychotherapy intervention to treat dementia caregiver stress with more effective and powerful features: engaging methods (DVD and online video); tools to encourage supportive interactions with professionals and other caregivers; enhanced communication; methods to gather and distribute collective knowledge on coping with caregiving; and other supportive tools. Related clinical advantages are: encourage training participation, enable user interaction, and promote better assimilation of concepts; which should enhance caregivers' skills to deal with demanding tasks of caregiving (ultimately leading to alleviate stress and improve quality of life). The basis for the iCare curriculum was developed in many evidence-based procedures by Dr. Gallagher-Thompson, Dr. Thompson, and associates, resulting in a successful Coping with Caregiving class series (CWC), evaluated in several randomized clinical trials, e.g. a component of NIH-funded multi-site national research project Resources for Enhancing Alzheimer's Caregiver Health (REACH; Belle et al., 2006; Schulz et al., 2003), which demonstrated that CWC trainings reduced stress for caregivers from diverse communities. The psychotherapy aspect of iCare refers to psychological techniques designed to encourage insight into problems for personal growth and behavior modification (oriented by eTraining), rather than treatment by therapist (not feasible for broad deployment due to costs). The pedagogical format of iCare is a combination of DVD/online video training and use of supplemental materials that build skills and stimulate practice. In collaboration with the Alzheimer's Association, Family Caregiver Alliance, and other organizations, we will develop and evaluate iCare (targeting general caregiver population), with an expert Advisory Board (for scientific review) and family caregivers (for consumer input). We will assess the iCare effectiveness in improving the well-being and decreasing the stress of caregivers with a randomized clinical trial (Phase II). PUBLIC HEALTH RELEVANCE: A growing number of dementia family caregivers (estimated at 8.9 million; Family Caregiver Alliance, 2007) 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 (Pinquart and Sorensen, 2007; Schulz et al., 2000; Hooker et. al., 2000; Ory et al., 1999; Schulz and Beach, 1999; Schulz et. al, 1995; Gallagher et al., 1989). The annual national costs of caring for Alzheimer's are estimated at 148 billion in medical costs, living costs, and lost productivity; and family caregivers provide 8.5 billion hours of care annually, valued at almost 83 billion dollars (Alzheimer's Association, 2007), saving American taxpayers considerable money (e.g. even more than a decade ago, caring for Alzheimer's patients at home rather than in nursing home facilities was estimated to save American taxpayers 33.3 billion per year; Ernst and Hay, 1994). The expected outcomes of the iCare project are the following: (1) provide empirically validated effective training to manage the stress and cope better with dementia caregiving in a cost-effective and accessible manner; (2) promote the well-being of a growing number of dementia family caregivers who experience several negative symptoms; and (3) decrease the stress and burden of care for family caregivers of patients with dementia; in addition, we expect the following potential indirect outcomes (not measured by this study): (a) delay institutionalization of AD patients (as family members are expected to bear the duties of caring for a longer period of time as a result of decreased burden and reduced stress); (b) decrease caregiver medication use and associated side effects (as less depression problems and better mood of caregivers are expected by the regular application of the iCare concepts); and (c) lower the economic cost associated with AD, by decreasing, as noted above, caregiver burden, delaying institutionalization, reducing medication use, and promoting the general well-being of caregivers.