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Dementia Caregivers’ Lived Experience of Sleep

Simpson, Cherie PhD, APRN, CNS-BC; Carter, Patricia PhD, CNS

doi: 10.1097/NUR.0b013e3182a87287
Feature Article

Purpose: Poor sleep quality leads to sleep deficiency, an unmet public health problem that is especially acute in caregivers. The purpose of this study was to investigate the dementia caregiver’s lived experience of sleep. The specific objectives were to (1) explore causes for poor sleep as identified by the caregiver, (2) gain knowledge about how the caregiver manages the sleep experience, and (3) gain an understanding of how caregivers perceive health promotion suggestions to improve sleep quality.

Methods: This was a qualitative study using a phenomenological framework. In 3 focus groups, data were collected from 15 informal/family member caregivers of a person with dementia (PWD).

Results: Three themes were identified in caregivers’ descriptions of disruptions to their sleep quality: sleep quality fluctuating with the status of the PWD, a need for vigilance to safeguard the PWD at night, and worry about current and future events, which caused rumination. Caregivers did not receive formal help from healthcare providers but did participate in activities that promote good sleep. Caregivers identified barriers to health promotion activities, including lack of time, decreased energy, and additional costs for providing care for the PWD.

Conclusion: This research provides exemplars of caregivers’ thoughts, preferences, values, and beliefs regarding their sleep experience in the context of caregiving. The caregiver’s perspective should be taken into consideration when clinical nurse specialists provide evidence-based care. Clinical implications are provided.

Author Affiliations: Assistant Professor (Dr Simpson) and Associate Professor (Dr Carter), School of Nursing, University of Texas at Austin.

This project was funded by the UT Competitive Summer Research Award.

The authors report no conflicts of interest.

Correspondence: Cherie Simpson, PhD, APRN, CNS-BC, School of Nursing, University of Texas at Austin, 1700 Red River, Austin, TX 78701 (

© 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins