JMIR Publications

ABSTRACT

Background:

Caregivers of patients with dementia often want to support aging at home, but as neuropsychiatric symptoms (NPS) become more severe, caregiver challenges increase, often resulting in negative outcomes for both the caregiver and care recipient, or institutionalization of the care recipient. Project CARE is a manualized in-person group intervention for dementia caregivers designed to reduce caregiver burden by teaching skills to manage NPS in patients with dementia in the home environment. Interventions that occur in-person, however, can be difficult for caregivers to attend due to competing demands for their time. Telehealth-based interventions are possible alternatives that reduce barriers to attendance.

Objective:

The primary objective of this pilot study was to evaluate the feasibility and acceptability of offering the CARE intervention via a telehealth format (TeleCARE). The secondary objective was to explore quantitative outcome trends and effect sizes for preliminary benefits of TeleCARE for patients with dementia and their caregivers.

Methods:

Caregivers were recruited from VA Medical Centers and veteran community centers. Rates of recruitment, attendance, and completion were used to assess the feasibility of TeleCARE. We also collected data on technology use and telehealth-based adaptations. To measure acceptability, participants rated satisfaction with the intervention immediately post-intervention. Questionnaires were administered at baseline, immediately post-intervention, and 3-months post-intervention. Primary outcomes for exploratory analysis included NPS presence, severity, and caregiver NPS-related distress. Secondary outcomes included caregiver depression, anxiety, stress, self-efficacy, positive aspects of caregiving, and meaning and purpose in life. Cohen’s d effect sizes were used to compare changes in outcome variables pre- and post- intervention.

Results:

Of the 109 caregivers that were contacted to recruit for this study, 24 caregivers (22%) enrolled in TeleCARE, and 20 caregivers (83%; predominantly female spouses) completed the study. 10 participants attended all 7 sessions, and all participants attended at least 5 sessions. Feedback from participants in the first group (TeleCARE-test group, n=3) was used to modify the intervention to improve program execution when offered via telehealth, including adding procedures to improve safety, encourage rapport building, address etiquette, and ensure privacy. The final version of TeleCARE included 7 weekly synchronous video sessions. Participants provided good satisfaction ratings suggesting adequate intervention acceptability. We found that most participants (65%) required technological support, and that technological support was needed throughout the intervention.

Conclusions:

For this pilot feasibility study, we successfully recruited dementia caregivers and engaged them in TeleCARE. The majority of caregivers who completed the program attended all sessions, and satisfaction with the intervention was good. Overall, TeleCARE was deemed feasible and acceptable. Importantly, intervention adaptations and technology support were needed to implement TeleCARE successfully. The current findings suggest that offering interventions via telehealth requires modifications and technological support for older caregiver engagement but is a feasible and acceptable means of offering services.