Dr. Greenblum is Postdoctoral Scholar, Hughes Endowed Chair in Science, and Dr. Rowe is Professor and Lewis and Leona Hughes Endowed Chair, University of South Florida College of Nursing, and Affiliate Investigator and Director, International Consortium of Wandering and Missing Incidents in Dementia, James A. Haley Veterans Hospital Administration, Tampa, Florida.
Dr. Greenblum has disclosed no potential conflicts of interest, financial or otherwise. Dr. Rowe has disclosed that the intellectual property rights to the night home monitoring system mentioned in this article (p. 3) belong to the University of Florida, and the small business of which she is a partner (Caregiver Watch, LLC) will license the right to develop this intellectual property.
Address correspondence to Catherine A. Greenblum, PhD, FNP-BC, Postdoctoral Scholar, Hughes Endowed Chair in Science, University of South Florida College of Nursing, 12901 Bruce B. Downs Boulevard, MDC22, Tampa, FL 33612; e-mail: email@example.com.
The Alzheimer’s Association (2011) estimates that 5.4 million Americans are currently living with Alzheimer’s disease, the most common form of dementia, and over the coming decades, a projected 10 million more individuals will be diagnosed. Nighttime activity is common in individuals with dementia, and sleep disturbances can lead to unsafe situations and serious consequences (Spring, Rowe, & Kelly, 2009). The purpose of this article is to review the current research on the causes of and interventions for nighttime activity in individuals with dementia living at home.
Sleep Disturbances in Individuals With Dementia
Dementia, caused by conditions such as Alzheimer’s disease, contributes to degradation of sleep patterns (Bliwise, 1993), with discernible changes in electroencephalogram patterns and a decrease in slow wave and rapid eye movement sleep (Bliwise, 2004; Trachtenberg, Singer, & Kaye, 2005). Likely disease-related damage to critical brain areas that control sleep, such as the suprachiasmatic nucleus, causes alterations in sleep patterns (Weldemichael & Grossberg, 2010). In individuals with dementia, these changes affect the regulation of normal 24-hour sleep patterns. Sleep and wake cycles become disordered over the entire day, with more awakenings at night and increased daytime sleepiness and napping. Sleep disturbances in individuals with dementia living in the home are problematic when these result in independent night awakenings, as the sleeping caregiver is unable to provide the supervision an individual with dementia typically needs. Consequently, it is important to assess both the characteristics of the night sleep problems as well as the potential for dangerous consequences.
Assessment of sleep problems and potential consequences begins with a thorough history, and the caregiver may be the most reliable source for obtaining information on worrisome sleep abnormalities, such as nighttime awakenings with bed exits and early-morning awakening. Assessment of daytime activity and sleep patterns is necessary, as excessive daytime napping may contribute to poor nighttime sleep. A sleep diary of at least 7 days, recording time to bed, approximate time to sleep onset, nighttime awakenings, and wake time, will help quantify sleep disruptions. Attention to medications taken by the individual with dementia may lead to identification of potential contributors to sleep disruption. An assessment of medical history and comorbid health disorders may also pinpoint conditions exacerbating sleep problems (Rose & Lorenz, 2010), and a physical assessment may identify treatable causes of sleep difficulties.
Nighttime Activity in the Home Environment
When studied in the home setting, up to 50% of individuals with dementia have sleep changes that result in disruptions in the normal sleep-wake cycle (McCurry, Gibbons, Logsdon, Vitiello, & Teri, 2005). These disruptions include earlier morning risings and more out-of-bed events during the night and are particularly worrisome, as the caregiver is often asleep at these times. These awakenings expose individuals with dementia to two major dangers—falls when arising unsupervised in a darkened environment and unattended home exits—and significantly increase the demand on the caregiver to ensure a safe environment. Individuals with dementia living in a home environment have been found to have a high rate of injury, with several studies reporting falls as the most common cause of injury in this population (Oleske, Wilson, Bernard, Evans, & Terman, 1995; Rowe & Fehrenbach, 2004). While most falls occurred during normal waking hours, approximately 40% occurred at night. The most common site for night falls was the bedroom (40.5%), followed by the bathroom (15.9%) and kitchen (14.5%) (Rowe & Fehrenbach, 2004). Typically, falls were a result of loss of balance, including the individual with dementia falling out of bed and falling into objects, and likely occurred when up alone at night. Sequelae of falls ranged from minor skin abrasions to major injuries including hip and skull fractures and death. Falls that required an emergency department visit resulted in discharge to an institutional placement in 65% to 76% of cases, regardless of injury severity, with skin injuries as likely as major injuries to lead to placement (Rowe & Fehrenbach, 2004).
Unattended night exits are a substantial cause of individuals with dementia becoming lost in the community. Typically, these individuals mistakenly walk out of the home while the caregiver is sleeping and are unable to negotiate a return home. In a study of cases requiring law enforcement to assist in finding the individual with dementia, 9% of those who went missing (n = 23) did so while the caregiver was sleeping, and half of the individuals in these cases were found dead (Rowe et al., 2011). For individuals with dementia who needed help returning home, the risk of institutional placement was five times greater than for those without an incident (McShane et al., 1998). Although the incidents were not separated by time of day, the increased risk of placement translated to 77% of those with an incident being admitted to long-term placement, while only 31% of those without an incident were institutionalized.
The unpredictable nature of nighttime awakening and activity adds to caregiver worry and sleep disruption, with secondary consequences of fatigue and negative mood changes, such as irritability and depression (Spring et al., 2009). The need to consider and undertake institutional placement is also very stressful for caregivers (Liken, 2001).
Treatment Options and Prevention Strategies
Because of the significant consequences to both the individual with dementia and caregiver, it is critical to ensure a treatment plan is devised. Sleep problems are difficult to treat; however, a number of strategies that may improve sleep patterns and safety in individuals with dementia are available. Standard sleep hygiene measures are a recommended first step in improving sleep in individuals with dementia. Sleep hygiene measures include a regular sleep-wake schedule; limited evening liquid intake; avoidance of heavy meals at bedtime; maintenance of a comfortable bedroom temperature with adequate ventilation and minimized light and noise; limited consumption of alcohol and stimulant agents, such as caffeine; increased activity during the day; and reduced daytime napping (Rose & Lorenz, 2010). Treatment of comorbid psychiatric and chronic health conditions affecting sleep also should be considered to improve sleep (Doghramji, 2006).
Light therapy has been studied in an attempt to better regulate the day-night cycle in individuals with dementia and improve nocturnal sleep. Published results on the efficacy of bright-light therapy are mixed, but indicate it may be of modest benefit in improving sleep and circadian rhythms in individuals with dementia (Bliwise, 2004; Fontana Gasio et al., 2003; McCurry et al., 2011; Sloane et al., 2007). The potential for improvement is tempered, however, by the difficulty in delivery of sustained treatment in the home environment to individuals with dementia.
Alternative interventions to improve sleep quality in individuals with dementia include increased daytime activity. Physical exercise and adult day programs have been demonstrated to improve quantity and quality of nighttime sleep (Bliwise, 2004; McCurry et al., 2011). Cognitive and memory decline and other behaviors seen in dementia may affect the ability to initiate and participate in activities. Scheduled physical and social activity such as light stretching exercises, walking, dancing, and structured social interaction has been found to improve nighttime sleep (Femia, Zarit, Parris Stephens, & Greene, 2007; McCurry et al., 2011; Naylor et al., 2000).
Medications have often been used for sleep in dementia patients with agitation. Sedative medication and off-label use of medications such as antidepressant and antipsychotic agents are widely prescribed to increase nocturnal sleep in individuals with dementia, although the risk of troublesome side effects is greater in older adults than in younger cognitively intact adults (McCurry, Logsdon, Vitiello, & Teri, 2004; Vigen et al., 2011; Zint et al., 2010).
Evidence-Based Interventions to Reduce Dangerous Nighttime Events
A nighttime home monitoring system that includes a bed occupancy sensor, motion sensors placed throughout the home, and door-opening sensors on exit doors has been found to reduce nighttime injuries and exits. Information from these sensors is filtered through caregiver-determined algorithms, and notifications are provided to the caregiver on a wireless information panel (Rowe, Lane, & Phipps, 2007). These alerts allow the caregiver to provide targeted, direct supervision during the night. In a controlled trial of the device over 1 year, an 86% reduction of nighttime events (injuries and unattended exits) occurred when caregivers used the system at night (Rowe et al., 2009). Additionally, 4 of 27 individuals with dementia in the control group had a nursing home placement as a direct result of the nighttime event, while none of the 26 individuals in the experimental group had such a placement. Caregivers were highly satisfied with the technology and indicated it improved the quality of their sleep as well as their overall well-being (Spring et al., 2009). This product is being marketed by CaregiverWatch, LLC, and the second author (M.A.R.) has a financial interest in this company.
A number of other products have been used to assist caregivers in securing the home or assisting in providing surveillance. Devices that assist in securing the home include door-locking mechanisms that are novel to the individual with dementia, bars or latches that prevent doors or windows from opening, or objects to make doors more difficult to open, such as those used to child-proof a home. A device that can be used to detect motion and alert a caregiver remotely in the home is sold as a driveway alert device. The motion sensor can be placed where the caregiver wants to detect motion (i.e., when the individual with dementia leaves a chair or a room). When the sensor detects movement, a wireless fob the caregiver carries will beep. This allows the caregiver to be in a different area of the home but be alerted in the case of worrisome activity of the individual with dementia. Intercom monitor systems, typically used to monitor an infant, can be used in a similar manner. However, these can provide false security, as the individual with dementia can leave the bed or area of the home without making enough noise to alert a caregiver who is sleeping or distracted in another area of the home. Small alarms are available that are activated when a door is opened; however, these make noise at the site of the door and can be jarring to the individual with dementia. Bed occupancy sensors currently on the market are primarily designed for the hospital environment. These are made of plastic materials not impervious to incontinence, can be uncomfortable, and require frequent replacement. Additionally, these units cover only a small portion of the sleeping surface, which can result in false alarms.
Night respite care is an important intervention designed to provide a period of rest and relief from the nighttime caregiving role (Bliwise, 1993; Lee, Morgan, & Lindesay, 2007). Respite care allows the caregiver a true break from caregiving, allowing for personal time and the potential for undisturbed sleep. Nighttime demands of individuals with dementia are difficult for caregivers. Stress from nighttime activity and the potential for injury to an individual with dementia compound the caregiver’s distress from broken sleep. While most published studies examine daytime respite care, one study reported that when family members specifically provide night respite, a lower risk for nursing home placement is noted (Gaugler et al., 2000).
Caring for an individual with dementia in a home setting poses unique challenges. Sleep disruption with nighttime activity exposes the individual to a substantial risk for injury from falls or harm from unattended home exits, places substantial stress and burden on the caregiver, and is a strong predictor for institutional placement. A thorough assessment of sleep patterns with a complete history and physical examination may help identify modifiable conditions contributing to poor sleep. A number of treatment options are available for nighttime sleep disruption, including sleep hygiene measures, pharmaceutical sleep aids, light therapy, and increased daytime activity. A nighttime home monitoring system, door-locking mechanisms, motion sensors, door alarms, and night respite care have been demonstrated to be effective in reducing dangerous nighttime events.
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