JMIR Publications

ABSTRACT

Background:

Informal caregivers of persons with dementia frequently experience chronic insomnia which can contribute to stress and poor health outcomes. Rural caregivers are particularly vulnerable but have limited access to cognitive behavioral treatment for insomnia (CBT-I), a recommended frontline treatment for chronic insomnia. Internet-based delivery holds promise for improving insomnia, particularly for rural CGs who have limited access to traditional in-person treatments. Our team translated an efficacious 4 session standard CBT-I content protocol to digital format to create NiteCAPP.

Objective:

This study aimed to: 1) adapt NiteCAPP for dementia caregivers to create NiteCAPP CARES – a tailored digital format with standard CBT-I content plus caregiver focused modifications, 2) conduct usability testing and evaluate acceptability of NiteCAPP CARES’ content and features, 3) pilot the adapted intervention to evaluate feasibility and preliminary effects on sleep and related health outcomes.

Methods:

Medical Research Council recommendations for evaluating complex medical interventions were followed to explore user needs and adapt and validate content using a stepwise approach: 1) an advisory panel of rural dementia caregivers (n=5) and primary care providers (PCPs; n=5) gave feedback that was used to adapt NiteCAPP, 2) focus groups of caregivers (n=5) and PCPs (n=7) reviewed the newly adapted NiteCAPP CARES and provided feedback that guided further adaptations, 3) NiteCAPP CARES was then piloted in caregivers (n=5) to test feasibility and establish preliminary effects. Self-report measures of usability were collected following intervention. Fourteen daily electronic sleep diaries and questionnaires assessing arousal, health, mood, burden, subjective cognition, and interpersonal processes were collected before and after treatment.

Results:

The stepped approach provided important user and expert feedback on satisfaction, utility, and content that resulted in a new digital CBT-I tailored for rural dementia caregivers, NiteCAPP CARES. The advisory panel recommended streamlining NiteCAPPSM content, eliminating jargon, and including caregiver focused content. The focus groups gave the adapted NiteCAPP CARES platform high utility ratings [M=4.4 (1-least to 5-most favorable), SD=0.79, range=4.2-4.8]. Multiple features were evaluated positively, including the intervention’s comprehensive and engaging information, caregiver focus, good layout, easy-to-access intervention material, and easy-to-understand sleep graphs. Suggestions for improvement included provision of day and night viewing options, collapsible text, font size options, tabbed access to videos, and a glossary of terms. Pilot users rated utility (M=4.3, SD=0.83, range=4.1-4.5) and satisfaction [M=8.4 (1-least to 10-most satisfied, SD=1.41, range=7.4-9.0] high. Preliminary effects on caregiver sleep, arousal, health, mood, burden, cognition, and interpersonal processes (ps<.05) were promising.

Conclusions:

Adaptations were made to a standard digital CBT-I to create a feasible, tailored digital intervention for rural dementia caregivers. Important next steps include further examination of feasibility and efficacy in a randomized controlled trial with an active control condition followed by a multi-site effectiveness trial and eventual broad dissemination. Clinical Trial: ClinicalTrials.gov NCT04632628