Initial development of the writing to heal app: A structured writing series for caregivers of spouses living with Alzheimer's disease and related dementias

Abstract

Background: Caregiving for a spouse living with Alzheimer's disease and related dementias (ADRD) is incredibly stressful, which puts caregivers at risk for developing health problems themselves. Objective: To develop an intervention that supports caregivers and helps mitigate the stress associated with caregiving. Methods: In Part I, we used qualitative methods (e.g., data collected via focus groups with people caring for a spouse living with ADRD) to identify opportunities for targeted treatment and potential barriers to a cognitive-based online expressive writing (EW) intervention tailored to spousal caregivers. In Part IIa, we conducted a second wave of focus groups, throughout which we iteratively adapted a mobile app-based writing intervention for stress and grief among spousal caregivers, while continuously monitoring caregivers’ perceived acceptability and feasibility of each proposed feature. Finally, to prepare for app development, we conducted preliminary usability testing (Part IIb), during which caregivers interacted with a prototype of the future app to complete a number of proposed task flows. Results: Caregivers reported having dynamic needs and requested an intervention that was efficient, mobile, and readily accessible. Further, people caregiving for a spouse living with ADRD have specific motivations for writing (e.g., needing an outlet to release their emotions) as well as unique barriers to the intervention (e.g., lack of time, security concerns). Conclusions: A mobile-based writing intervention catering to the specific needs of these individuals may be a helpful coping resource for caregivers.