Every 69 seconds someone in US develops Alzheimer's Disease (AD) and related dementia, affecting not only patients, but family caregivers (~15 million), largely untrained and neglected by the healthcare system, with high incidence of stress (60 percent) and depression (33 percent) due to difficulties of caregiving. A large underserved group is Hispanic, the largest minority (16 percent of US population) and the fastest growing ethnic group, facing several health disparities and barriers to care: higher incidence of Alzheimer's (e.g. 63 percent versus 30 percent for Caucasians age 85 years and over);greater depression in Hispanics (45 percent) than in other groups;limited medical insurance;language proficiency issues;lack of knowledge about dementia;greater need for help to deal with difficulties related to dementia, fewer culturally appropriate interventions, etc Besides materials in Spanish language, culturally appropriate interventions are also needed, because they are more effective, as racial/ethnic identity influences beliefs about dementia and family care giving role, affecting how families cope with dementia care giving and respond to interventions. Another major challenge for effective Hispanic interventions is the retention of participants and adherence to healthcare programs. We propose a new intervention called Webnovela (WN), a short online Telenovela in Spanish, specifically designed for Hispanic caregivers on how to cope with dementia care giving, reduce burden of care, decrease stress, and alleviate depression. A DVD with our Telenovela will also be created for non-Internet users. As Telenovela, a limited-run "television novel" drama, is one of the most popular television genres for Hispanics, a "Telenovela" intervention is likely to increase the subject retention and intervention adherence. A Webnovela also has a high potential, since Internet is very appealing to Hispanics, with a high number of online Hispanics (30 million in 2010), and growing two times faster than overall US online population. Research on Telenovela-based behavioral interventions is an unexplored field. WN is one of the first (if not the first one for dementia caregivers). The novel WN incorporates: (a) psychoeducation and Cognitive Behavioral Therapy (CBT), which are very effective behavioral interventions to reduce stress/depression;(b) translation and adaptation of evidence-based curriculums into a culturally sensitive short Telenovela for Hispanics;and (c) creative use of Telenovela medium to engage and motivate users to follow the intervention. Related clinical advantages are: encourage caregiver participation, enhance intervention adherence, and enable better assimilation of skills;which should enhance caregivers'skills to deal with demanding tasks of care giving, reduce burden of care, improve quality of life, decrease stress, and help to alleviate depression. In partnership with the Alzheimer's Association, expert Advisory Board and caregivers, we will develop and evaluate a prototype in Phase I. We will assess the effectiveness of the complete WN (with all modules) in improving well-being, decreasing stress, and alleviating depression with a randomized clinical trial in Phase II.
Besides affecting 15 million dementia family caregivers in US, who provide 17 billion hours of unpaid care and are at high risk for stress/depression related to the difficulties of dementia care giving (depression rate of 33 percent), Alzheimer's has also a growing impact on Hispanics, the largest minority (16 percent of US population) and the fastest growing ethnic group in US, which is of increasing importance, because the number of Hispanic AD patients is likely to grow at an alarming rate, as the elderly Hispanic population (age 65+) is projected to grow the fastest of all racial/ethnic groups, from about 3 million (2008) to 17 millio (2050). Hispanics also face several health disparities and barriers to care, such as higher incidence of Alzheimer's (e.g. 63 percent for Hispanics vs. 30 percent for Caucasians age 85+), greater depression (45 percent incidence rate among Hispanic caregivers), limited medical insurance, lower educational level, lower household income, higher poverty rate, language proficiency issues, lack of knowledge about dementia, higher need for help to deal with difficulties related to dementia, and lack of specific tools and culturally appropriate interventios to cope with care giving. After Phase II is completed, the expected outcomes of our project are the following: reduce Hispanic dementia caregiver stress/depression, 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.