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Sleep in Persons With Frontotemporal Dementia and Their Family Caregivers

Merrilees, Jennifer; Hubbard, Erin; Mastick, Judy; Miller, Bruce L.; Dowling, Glenna A.

doi: 10.1097/NNR.0000000000000024
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Background: Dementia is associated with disruptions in sleep and sleep quality for patients and their family caregivers. Little is known about the impact of frontotemporal dementia (FTD) on sleep.

Objective: The purpose of this study was to characterize sleep in patients with FTD and their family caregivers.

Methods: Twenty-two patient–caregiver dyads were enrolled: Thirteen behavioral variant FTD (bvFTD) and nine semantic dementia (SD). Sleep and sleep quality data were collected for 2 weeks using diaries and Actiwatches.

Results: Patients with bvFTD and SD spent more time in bed at night compared to their caregivers. Nighttime behaviors were reported more frequently by caregivers for the bvFTD patients and strongly correlated with caregiver distress. Actigraphy data showed normal sleep efficiency and timing of the nighttime sleep period for both patients and their caregivers. Caregivers of patients with bvFTD reported poorer sleep quality compared to the SD caregivers. A greater number of bvFTD caregivers compared to SD reported negative aspects of sleep quality for themselves and used sleep medications more frequently.

Conclusion: The clinical manifestations of bvFTD appear to be associated with different and more distressing impacts on the caregiver sleep quality than SD.

Jennifer Merrilees, PhD, RN, is Clinical Nurse Specialist and Associate Clinical Professor, Memory and Aging Center, University of California, San Francisco.

Erin Hubbard, MA, is Research Associate; and Judy Mastick, RN, MN, is Project Director, Department of Physiology Nursing, University of California, San Francisco.

Bruce L. Miller, MD, is Professor and Director, Memory and Aging Center, University of California, San Francisco.

Glenna A. Dowling, PhD, RN, FAAN, is Professor, Department of Physiological Nursing, University of California, San Francisco.

Accepted for publication November 30, 2013.

The authors acknowledge support for this article was provided by the Integra Foundation Neuroscience Nursing Foundation Research Grant Program, NIH 5 PO1 AGO19724, and the John A. Hartford Center of Geriatric Excellence.

The authors have no conflicts of interest to report.

Corresponding author: Jennifer Merrilees, PhD, RN, Memory and Aging Center, University of California, San Francisco, 675 Nelson Rising Lane, Suite 190, San Francisco, CA 94158-1207 (e-mail:

© 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins.