One in 10 older Americans has Alzheimer's Disease (AD) or related dementia (age 65+), placing a substantial burden of caregiving on family caregivers (15+ million), the hidden patients at high risk for stress (60%) and depressive symptoms (33%) related to the difficulties of dementia caregiving. A caregiver group, greatly impacted by dementia, is Hispanic, the largest minority (16% of US population), largely neglected by the healthcare system with many health disparities and barriers: higher incidence of Alzheimer?s (e.g. 63% versus 30% for Caucasians age 85 years and over); greater depressive symptoms in Hispanics (45%) 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, etc. As efficient, low-cost, culturally tailored, and accessible interventions are needed to cope with dementia caregiving, we propose a new intervention, called ?Self-Compassion Coping for dementia caregivers? (SCC), to be implemented in the Caring Compassion App (CCA), specifically designed for Hispanic caregivers on how to cope with dementia caregiving, reduce burden of care, decrease stress, and alleviate depressive symptoms. There many predictors of stress related to caregiving, including the sense of competence, guilt, available resources, and skills on how to deal with caregiving challenges. Although some studies have shown that self- compassion and other interventions can improve caregiver well-being, there is a lack of evidence-based products that can be easily deployed in a cost-effective manner to support Hispanic dementia caregivers. CCA will feature self-compassion practices to ease caregiving stress, in addition to techniques, skills, and practical tips on caregiving coping in a self-contained, easy-to-use, low-cost, and convenient mobile app. Research on Mobile App-based self-compassion interventions for caregiving is an unexplored field. CCA is one of the first (if not the first one for dementia caregivers). The novel CCA incorporates: (a) Self-Compassion; (b) psychoeducation and effective skill-based caregiving coping training to reduce stress/depressive symptoms; (c) implementation of the curriculum into a culturally sensitive Mobile App for Hispanics; and (c) convenient use of a Mobile App to engage users to follow the intervention. Related clinical advantages are: encourage caregiver participation, facilitate intervention, and enable better assimilation of skills; which should enhance caregivers? skills to deal with demanding tasks of caregiving, reduce burden of care, improve quality of life, decrease stress, and help to alleviate depressive symptoms. In partnership with the Alzheimer?s Association, expert Advisory Board and caregivers, we will develop the SCC curriculum in Phase I. Focus groups involving caregivers will inform the project and explore caregiver attitudes towards self-compassion, mobile app usage, and proposed curriculum. In addition, a prototype will be developed and tested with dementia caregivers to establish the feasibility of the approach in Phase I.
Depression and stress affect a large population of 15+ million family caregivers of individuals with Alzheimer?s Disease and related dementia in US, impacting the Hispanic American community greatly, which is both the largest minority (16% of the US population) and the fastest growing ethnic group, with an expected elderly (age 65+) population increase from 3 million (2008) to 17 million (2050). Dementia poses unique challenges to the Hispanic community, with much higher rates of Alzheimer?s disease (63% vs 30% for Caucasians age 85+) and higher depression (45% of Hispanic caregivers vs 33% of all caregivers), in addition to several barriers to care, such as lower levels of medical insurance, household income, English language proficiency, and education; which intensify Hispanic caregiver needs for dementia programs and help on how to deal with difficulties related to dementia, specifically tools and culturally appropriate interventions on coping with caregiving. The expected outcomes following our project?s completion (Phase II) are linked to decreasing the caregiving burden for Hispanic dementia caregivers, with reduced stress/depressive symptoms; in addition, we also foresee indirect outcomes (not measured by this study) to improve caregiver quality of life, extend the time dementia patients can remain under family care and residence, reduce caregiver medication use, and thus decrease nationwide healthcare costs.
