Assessing Acceptability, Cost, and Efficacy of STELLA-Support Via Technology: Living and Learning With Advancing AD

Introduction and Specific Aims:

Family members who care for those with Alzheimer's disease and related dementias (ADRD) may find a sense of meaning, opportunity and power in their evolving role, but they may also find the experience burdensome, leading to depression, anxiety and grief. Caregiving can also have negative effects on health, including impairments in cardiovascular health, immune function, restorative sleep and cognitive function. As care demands build over the long duration of disease, the quality of life for the care dyad (the person with dementia, (PwD) and their care partner (CP)) is affected and the risk of placement for the PwD increases. Interventions that reduce the CP affective and physical burden, and delay PwD placement are available to support the 16 million ADRD CPs in the United States, but access to them is limited by a number of factors, including geographic distance, financial resources and stigma.

Internet-based videoconferencing technology (also known as "telehealth") is making education and support interventions more accessible for families living with ADRD. These interventions have had small to moderate effects on reducing CP burden and depression and good consumer acceptance. However, despite evidence that CPs prefer individualized interventions with real-time counselors, most telehealth interventions are group-based, automated and not tailored to stages of disease. Also, while the telehealth interventions target important aspects of the CP affective experience (burden, depression), few address sleep issues or the cognitive dysfunction that can result from caregiving. Further, limited information is available about the mechanisms of action of these technology-based interventions.

To address the need for personalized, real-time educational interventions for families caring for those in moderate to late-stage dementia, we designed Tele-STELLA (Support via TEchnology: Living and Learning with ADRD). Tele-STELLA uses videoconferencing to connect nurse consultants with CPs, in both one-to-one and then small group sessions. STELLA uses cognitive behavioral techniques to guide CPs in strategies to reduce the emotional, cognitive and physical effects of upsetting behavioral symptoms of dementia. Pilot testing of STELLA prototypes found that the intervention reduced burden. Focus groups revealed that CPs liked the one-to-one telehealth format, but did not like the abrupt cessation after completing the 8 weekly sessions. They asked for opportunities to connect with other caregivers to sustain support.

There are few known telehealth interventions that use combined one-to-one and group sessions. This novel study, co-developed with CPs, will provide feasibility and efficacy data and help understand the mechanisms of change for this intervention. Further, this study will be one of the first to use objective data from the ORCASTRAIT LL to learn about Tele-STELLA's mechanisms of behavior change.