Dementia Caregivers' Perspectives on Disaster Preparedness: Barriers, Resources, and Recommendations.

Abstract

Disaster preparedness is an urgent concern, particularly for caregivers of persons with dementia. Developing and executing plans for oneself and another person who needs care can be difficult when the care recipient is cognitively impaired. We sought to better understand caregivers' disaster preparedness for the purpose of generating guidance for future interventions to increase caregiver resilience. We conducted a qualitative descriptive study of caregiver disaster experiences and perceptions of their preparedness. Fifty-two participants from diverse backgrounds participated in a focus group or interview. Deductive thematic data analysis was utilized to identify themes. Stress process models guided the interpretation of our findings. Analyses of caregivers' experiences and observations revealed that disaster preparedness was challenging for caregivers, though also perceived to be an important responsibility. We identified 3 main themes: (a) barriers to preparing for a disaster as a caregiver for a person living with dementia, (b) why it is important for a caregiver to develop a disaster plan, and (c) how to facilitate preparedness for caregivers of persons living with dementia. This study highlighted the difficulties of preparing for a disaster while caring for a person with dementia. Applying stress process models to our results provided strong evidence that interventions could be developed to bolster caregivers' resources to cope with stressors associated with disaster preparedness. A key issue for public officials is the question of whether disaster shelters are appropriate for persons with dementia.