In 2014, approximately 5.2 million Americans are living with Alzheimer's disease (AD). With the aging of our society, the US percentage of persons age 65 and older with AD is expected to grow 40% to 7.1 million by 2025. Larger increases are expected in Arizona (67.7%) and Nevada (73%), the two states targeted in the proposed project, with only Alaska estimated to have a greater increase. Estimates expand substantially when combining AD with other related dementias (ADRD). The majority of people in the US with ADRD are non- Hispanic whites (NHW); however, within racial/ethnic group, Hispanics/Latinos and African Americans are more likely to be living with ADRD. A recent systematic review and meta-analysis of ethnic/racial differences in dementia treatment, care, and research found consistent evidence that minority groups, particularly Hispanics/ Latinos, accessed dementia diagnostic services later than their NHW counterparts. The 2013 National Plan to Address Alzheimer's Disease states that identifying AD in its early stages creates advantages for early-stage people (EPs) and their care partners (CPs): for example, EPs can participate fully in legal, financial, and care decision-making; and social support can be mobilized for current and future concerns. Still, the point of diagnosis can start a cascading stress process that can negatively impact EP and CP health and emotional well-being, reinforcing the CDC's recognition of family caregiving as a national public health priority. While an emphasis on early detection and treatment in science and healthcare is growing, there is not corresponding emphasis on psychosocial interventions to address the well-being of early-stage dyads. Research to date has key limitations, including few RCTs, a focus on well-educated NHWs, limited treatment fidelity protocols, small sample sizes, and little impact on both EPs and CPs. This project addresses key limitations of previous studies by conducting an RCT with EPIC (Early-stage Partners in Care), an early-stage, group dyadic intervention, already offered in a pilot in diverse Arizona communities through community-based organizations that yielded positive EP and CP outcomes related to health and well-being. The proposed RCT, EPIC II, will expand EPIC across two states with an even more diverse sample and include maintenance of gains assessments. EPIC is an interdisciplinary collaboration of well-established community partners, a promotora network, and nationally recognized experts in AD caregiving and caregiving intervention research, implementation, and translation. Its innovation lies in a unique combination of skills training and care planning that helps EPs articulate their care values and preferences and become active decision makers with their CPs to achieve positive outcomes. EPIC builds upon a) the success of the EPIC I pilot, b) work with early-stage dyads showing EPs can respond validly and reliably about their care values and care preferences, c) intervention components in successful clinical trials (e.g., REACH, REACH II) with diverse groups of later-stage AD caregivers, and d) its group-based focus.
This study translates into diverse communities an intervention to help alleviate stress in persons with early stage dementia and their care partners. It helps early stage individuals voice their care values and preferences for future care options and helps their care partners use this information to make future care choices. These strategies are combined with communication, stress management, and other behavior change strategies to help participants improve their quality of life and maintain their independence.