Every 66 seconds, someone in US develops Alzheimer?s Disease, a progressive irreversible neurodegenerative disease, causing distress not only to dementia patients, but also to caregivers (15+ million), who are the hidden patients with high incidence of stress (60%) and depression (30%+). Due to this significant problem, effective, low-cost, and accessible interventions are needed to help dementia caregivers to deal with the caring demands, heavy emotional toll, life changes, and overwhelming experiences. A promising delivery mechanism is the smartphone, because: a) adoption is very high and growing (e.g. during our Phase II in 2019, 84% to 95% of adults ages 18-64 are expected to own smartphones ? and according to CDC, most of dementia caregivers (77%) are younger than 65 years, which is a fairly large group); and b) 98% of Americans nationwide have access to mobile broadband (according to the White House). Therefore, we propose a unique intervention by integrating our Coping with Caregiving (CWC) curriculum, mindfulness (MBSR), self-paced approach, and mobile app delivery, which has not been created before, called Caring Light App (CLA) to enhance caregiver coping skills, reduce stress, and alleviate depression. Our project will have a high impact because: 1) the blending of CWC and mindfulness is expected to be very effective, based on our preliminary studies and other research results; 2) the proposed program is low-cost ($4.99/year per person); and 3) CLA intervention will be accessible to a large group of caregivers as a mobile app, allowing its broad dissemination to innumerous families struggling with Alzheimer?s and related dementia. CWC was developed in evidence-based procedures by Dr. Gallagher-Thompson and associates, evaluated in many randomized clinical trials (e.g. as a component of the NIH-funded national research project REACH, ?Resources for Enhancing Alzheimer?s Caregiver Health?), enhanced throughout the years, and successfully converted into effective self-paced passive programs, such as iCare and Webnovela. Mindfulness-based Stress Reduction (MBSR) was developed by Dr. Kabat-Zinn and adopted in many settings. It includes the practice of mindfulness, breathing, and meditation; and it was applied in innumerous programs to reduce stress, anxiety, depression, chronic pain, and other symptoms for several medical conditions. By integrating mindfulness practice with our proven CWC curriculum in a new mobile app, we will create a novel program for caregivers, blending training (coping skills, techniques to deal with dementia, practical tips on difficult behaviors, etc.) with stress reducing strategies (e.g. guided meditation, gentle stretches, and other mindfulness exercises), which is expected to be well accepted and easy to use by caregivers. In partnership with the Alzheimer?s Association, Stanford University, and caregivers, we will develop and evaluate a prototype in Phase I. We will assess the effectiveness of the complete CLA (with all modules) in improving well-being, and alleviating stress with a randomized clinical trial in Phase II.
As a growing number of dementia family caregivers (15.9 million; Alzheimer?s Association, 2016) are at high risk for depressive syndromes related to the stress and difficulties of caring for individuals with Alzheimer?s Disease (AD) and related dementia, we need interventions that are not only effective, but also accessible and cost-effective. The annual national costs of caring for Alzheimer?s are about $236 billion in health care, long-term care, and hospice, not including the value ($221 billion) that millions of families provide for caregiving (18 billion hours annually, Alzheimer's Association, 2016), nor the healthcare costs for treating caregivers with declining physical and mental health, due to the demands and chronic stress associated with dementia care. The expected outcomes of the Caring Light App (CLA) project are: (1) provide an effective intervention to manage stress and cope better with caregiving in a cost-effective and accessible manner; (2) promote the well- being of a growing number of caregivers; and (3) decrease the stress and burden of care for caregivers; in addition, we expect these 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 due to reduced stress); (b) decrease caregiver medication use and associated side effects (as less depression problems and better mood of caregivers are expected with CLA); 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.
