Dilemmas of Communicating about Alzheimer's Disease: Professional Caregivers, Social Support, and Illness Uncertainty

Abstract

Healthcare professionals and family members providing care for someone with Alzheimer's disease face significant communication challenges. This study investigated the types of social support perceived by the professional caregiver to be most helpful. Interviews conducted with 32 nurses and care assistants found that informational support was perceived as helpful in most situations in which a family member sought support from a nurse or care assistant to manage their uncertainty. Nurses and care assistants faced specific communicative dilemmas including providing information versus maintaining institutional policy, providing options versus telling the family what to do, and communicating reassuring information versus information that might be perceived as discouraging. To practically manage these dilemmas, nurses suggested communicating a common set of expectations among families and nursing staff and making caregiving visible.

Keywords:

• Alzheimer's Disease
• Professional Caregivers
• Social Support
• Illness
• Uncertainty Management
• Health Communication

Acknowledgments

The author thanks John Caughlin for his support and insightful comments throughout the writing process.

Additional information

Notes on contributors

Anne M. Stone

Anne M. Stone, PhD, is an assistant professor at Rollins College in the Department of Communication in Winter Park, FL, USA. This project was funded by the Ruth Anne Clark Student Scholar Award and a Graduate College Dissertation Travel Grant from the University of Illinois at Urbana-Champaign. Findings from this study were presented at the National Communication Association Conference (2012)