Purpose: To describe recruitment and retention of caregivers for patients with dementia to The Balance Study. This is a 3-year randomized controlled NIH-funded pilot study of a mindfulness-based stress reduction intervention compared to an active control caregiver education and social support program that
is collecting both psychological and physiological (biomarkers) outcome data and to discuss the challenges of recruiting this population.
Methods: The Balance Study is in its first year of active recruitment and is using a wide variety of methods to reach potential participants, including outreach efforts within a large health plan and community and social service organizations, print articles, paid advertising, and word of mouth. Significant
focus has also been given to study retention. The study has identified a number of challenges in reaching this population that have required innovative
efforts and outreach.
Results: To date, we have discussed the study with 140 people, screened 83 caregivers, 55 (66%) of whom were eligible for the study and consented 39 (71%) participants to the study. Of this group, 36 (92.3%) have completed or are in active study participation; 3 participants withdrew following consent (reasons for withdrawal included spouse entered a nursing home and dissatisfaction with random assignment to the control intervention). Challenges to recruitment efforts include venue for outreach, lack of identification as a "caregiver," cultural issues, time required for participation, respite care needs, commuting and availability related to intervention time.
Conclusion: The study to date has been successful in recruiting and retaining participants. We have developed a number of innovative outreach techniques to reach caregivers that have been successful, including outreach within a large health plan population, building an alliance of interested organizations, publishing articles related to the topic and study in community newspapers and professional organization publications, and direct outreach in a wide variety of settings. These methods result from the significant barriers identifi ed in reaching potential participants. Caregivers are a self-identified group who often don't identify with the descriptor "caregiver" and thus do not identify with a specific group or venue that can be used for outreach; cultural issues also influence how they see this role, their responsibilities, and their help-seeking behavior. Caregivers also tend to be heavily burdened by their caregiving duties and as result often do not seek help until they are overwhelmed by stress; they require help in addressing respite care issues; commuting requirements and time of day are critical to study participation. Significant focus has also been given to study retention, with regular contact during the intervention and follow-up phases resulting in a high rate of completion following consent. We anticipate results from the study will be available in spring 2009.