HEPBURN, KEN W
Testing Tele-Savvy, an On-line Psychoeducation Program for Informal Alzheimers Caregivers
Alzheimer's disease & other dementias
Acquired Cognitive Impairment... Aging... Alzheimer's Disease... Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD)... Behavioral and Social Science... Brain Disorders... Caregiving Research... Clinical Research... Clinical Research - Extramural... Clinical Trials and Supportive Activities... Dementia... Minority Health for IC Use... Neurodegenerative... Neurosciences... Translational Research
Abstract We seek to test the efficacy of an internet-delivered psychoeducation program for Alzheimers family caregivers, Tele-Savvy, by enrolling 216 caregivers in a randomized trial that uses an attention control wait-list design. The trial builds on established links across four NIA-supported Alzheimers Disease Research Centers to respond to PAR-15-348 (Research on Informal and Formal Caregiving for Alzheimer’s Disease). Community-based care of persons living with Alzheimers disease (PLWA) rests on family caregivers. Our reliance on this informal resource will only increase as the prevalence of these illnesses increases. Family members are expected to provide sustained and sophisticated care care that, were it not in the hands of laypersons, would require the skills of nurses, occupational therapists, social workers and other professionals. Typically, family members are not trained to undertake the caregiving role. Caregivers also pay a big price for the work they do and the sustained stress they bear. Their physical health and psychological well-being is jeopardized; their family and social worlds are often rent apart; even economically they become vulnerable. The work they perform bears directly on the well-being of the persons living with Alzheimers disease. Enhanced skills, knowledge, and caregiving mastery may be key mediators in this situation. Psychoeducational programs are among the most successful of caregiver interventions. However, for all caregivers rural, but also urban and suburban traveling to and arranging care for the PLWA during in- person programs pose major barriers to participation. The internet is increasingly used by middle age and older persons, the age of typical caregivers. Some psychoeducation programs are partially on line, they are not completely internet-delivered and none fully simulates the in-person programs on which they are based. Tele- Savvy (built on the evidence-based platform of the Savvy Caregiver Program) provides a virtual in-person psychoeducation program through simple-to-use distance means to small groups of caregivers (in their own homes). The program involves 7 weekly group videoconferences, interspersed with daily asynchronously available video lessons. Pilot results demonstrate Tele-Savvys preliminary efficacy for significantly reducing caregiver distress, enhancing caregiving mastery, and reducing distressing behaviors in PLWA. Participants evaluations attest to positive behavioral and affective outcomes and a sense of being connected with the other caregivers. The proposed study seeks to establish Tele-Savvys efficacy for (1) reducing caregiving distress, (2) promoting the quality of life of PLWA of Tele-Savvy caregivers, and (3) enhancing caregiver mastery and self-management behaviors as mediators of those outcomes; in an exploratory aim, it seeks also to examine the comparability of the programs efficacy across three racial/ethnic groups (African Americans, Caucasians, and Latino/Hispanics). Tele-Savvy offers a new and highly flexible way for a wide variety of sponsoring organizations to reach and maintain beneficial relationships with caregiving family members.
Public Health Relevance This project will demonstrate the efficacy of an internet-delivered training program for family caregivers of community-dwelling persons living with Alzheimers disease, seeking to protect and enhance the well-being of both. The Tele-Savvy program builds on a widely disseminated evidence-based program (Savvy Caregiver). The project is a collaboration among NIA-supported Alzheimers Disease Research Centers.