Treating Sleep Problems in Dementia Caregivers Based on Parent-Child Interventions

Abstract

Background: Interventions developed for improving sleep in parents of young children or in developmentally delayed children might also prove effective for persons with dementia and their caregivers. Methods: We selectively reviewed the literature for interventions effective in improving sleep in parents of young children or in developmentally delayed children. Results: Graduated extinction and adult fading have been minimally explored in dementia populations. They are fairly brief and could be administered during primary care or dementia clinic visits. Combination strategies such as extinction and sleep-enhancing medication are very effective and may be applicable for persons with dementia and their caregivers. Physical capabilities and degree of cognitive decline of patients with dementia must be considered, and medical staff and caregivers should adjust behavioral strategies to maximize the use of patients' intact cognitive abilities. Conclusions: Interventions for divergent populations prone to similar problems as those of patients with dementia might be effective and advance existing research.

Introduction

Sleep plays an important role in human health and well-being across the life span. Disordered sleep has been linked to cellular inflammation, weakened immunity, depression, alcoholism, cardiovascular disease, obesity, and all-cause mortality.^1,2 Caregivers of persons with chronic illness are at particular risk of disrupted sleep and health problems. ³ Dementia is one of the most common diseases among persons of advanced age, with as many as one third to one half of the persons 85 years and older likely to have or develop Alzheimer’s disease (AD) and related dementias.^4,5

Effective interventions have been developed for improving sleep in parents of young children or children who are developmentally delayed and in caregivers of persons with dementia. There may be overlap between populations in the reasons for sleep disturbance, such as fear, unfamiliarity, daytime napping, temperature sensitivity, noise, or nightmares. There are also reasons why persons with dementia have particular difficulty with sleep disturbance, such as chronic pain, nocturia, medication side-effects, depression, or restless leg syndrome, among others.^6,7 However, to date, there has been little comparison of the literature from these divergent populations.

Impact of Sleep Problems in Young Children

Many adults are familiar with a caregiver role in which they were frequently distressed and sleep deprived: early parenthood. Identifying signs, consequences of and treatments for chronic sleep disturbance among young children and their parents could inform treatment of patients with dementia and caregivers.

Between 20% and 35% of normally developing children and between 40% and 70% of children with developmental delays have sleep disturbances. ⁸ The most common problems are nighttime and/or early morning awakenings and “settling difficulties” or difficulty falling asleep; but poor sleep hygiene, circadian rhythm problems, including reversal of sleep-wake cycle, and sleep disorders such as sleep-disrupted breathing or periodic limb movement disorder^8–10 may also occur.

Impact on Children

Sleep disturbances are associated with a range of daytime cognitive and behavioral issues among children with and without developmental delay. Children whose sleep problems lead to chronic sleep deprivation show cognitive impairments, such as difficulty concentrating and learning, and may perform more poorly in school than children without chronic sleep deprivation. ⁸ Other impairments may include behavior problems, deficits in attention, anxiety, irritability, hyperactivity, and depressive symptoms. ⁸ In addition, conduct disorder—characterized by a range of disruptive behavioral problems—is 2 to 3 times more likely in children with symptoms of sleep disorders, such as sleep-disordered breathing and periodic limb movement. ⁹

Impact on Parents

Sleep problems among children are reflected in their parents' sleep and well-being. Approximately 50% of parents are woken up by their children at least once per week, and the average incident involves the parent’s being awake for around 30 minutes. ¹¹ Also, child daytime sleepiness—a common sign of sleep disturbance—is a significant predictor of mother and father daytime sleepiness. ¹² Child sleep disturbance is strongly associated with the symptoms of depression and anxiety among mothers, ¹³ and caregivers of patients with dementia are affected in similar ways. In addition, similar to the bidirectional relationship seen in patients with dementia and caregivers, the impact of child sleep problems on parents may have detrimental effects on child development and mental health. ¹³

Impact of Sleep Problems in Dementia

Impact on Patients With Dementia

Sleep problems are a constant challenge for many patients with dementia and their caregivers. They are one of the most common neurobehavioral symptoms, with as many as 45% of individuals with dementia reporting at least 1 sleep problem. ¹⁴ Some of these problems include nighttime awakenings; early morning awakenings; excessive daytime sleepiness; sleep disorders, such as sleep-disordered breathing; and, less commonly, diurnal reversal of sleep-wake cycle, with most sleep occurring during the day. ⁶ Sundowning, a symptom in AD and related dementias in which behavioral disturbances occur during the late afternoon and evening secondary to circadian rhythm shifts, may also be implicated in sleep disturbance among patients. ¹⁵

Sleep plays an important role in the level of functioning in persons with dementia, with sleep disturbance linked to cognitive, functional, and behavioral disturbance. ¹⁶ As a result, alleviating sleep problems among AD patients is considered a priority in disease management.^6,17

Impact on Caregivers of Patients With Dementia

Sleep disturbance also affects caregivers of persons with dementia. As many as two thirds of dementia caregivers report sleep problems, and for many caregiver-patient dyads sleep problems can have a bidirectional effect. ¹⁸ Caregiver sleep disturbance may be triggered by a variety of factors and stressors, including issues associated with age, such as expected changes in natural sleep patterns or comorbid medical problems. ¹⁹ In addition, the caregiving role, caregivers' perceptions of their relationship with the patient, and caregivers' cognitive and behavioral responses to patients' sleep disturbances may influence perceptions of sleep quality. ¹⁹ Thus, regardless of objective sleep quality, caregivers often feel their sleep is disturbed and of low quality.

Sleep problems can be very stressful for caregivers. Disturbed caregiver sleep has been associated with adverse effects on immune function, stress hormones, cardiovascular health, and mortality. ¹⁹ Presence of one or more difficult patient behaviors and higher caregiver burden have both been linked to increased likelihood of patient institutionalization, ²⁰ and patient and caregiver sleep quality is consistently associated with caregiver burden. ¹⁹ Institutionalization of persons with dementia often leads to patients' poorer quality of life and increased morbidity and mortality, and caregivers who report sleep disturbances are more likely to place patients in nursing homes. ²¹

Current Interventions for Patients With Dementia and Their Caregivers

Interventions for Caregivers

Few studies focusing on caregivers have exclusively examined improving sleep or used sleep as an outcome measure. ¹⁹ In one study of caregivers of patients with dementia, ²² participants were instructed in a small-group format on sleep hygiene, stimulus control, sleep compression, and relaxation techniques. They were also educated about the impact dementia can have on patients and family and about behavioral methods for reducing disruptions from the patient in their care. The brief behavioral intervention led to improvements in caregiver sleep that were sustained at 3-month follow-up. A second study targeted sleep disturbance among caregivers of patients with cancer. ²³ The sample resembled caregivers of patients with dementia (ie, women, spouses, or adult children); and the intervention involved similar techniques, with the substitution of cognitive therapy for sleep compression (a behavioral intervention that involves restricting time in bed to a small amount per night to improve quality of sleep, then gradually increasing the amount of time in bed). Intervention caregivers reported improvements in sleep quality and depressive symptomatology.

Interventions for Patients

Treatments for persons with dementia have generally provided caregiver education about sleep hygiene and behavioral techniques for improving patient’s sleep patterns. Many of these interventions include recommended strategies for alleviating sundowning, which is distinct from sleep disruption but, when present, often implicated. ¹⁵ The Nighttime Insomnia Treatment and Education for Alzheimer’s Disease program (NITE-AD) ²⁴ instructed caregivers in sleep-hygiene strategies, such as increasing light exposure during the day; limiting natural and artificial lights, liquids and caffeine in the evenings; and limiting daytime naps. Caregivers were also educated about scheduled awakenings, proposed to reduce spontaneous awakenings, and daily exercise. Other supplementary sleep-hygiene strategies include relaxation skills and cognitive-behavioral therapy. ²⁵ The REACH program, ²⁶ aimed at improving caregiver well-being and patient functioning, provided education to caregivers about dementia and behavioral and environment-adjustment strategies for improving activities of daily living. This program, however, did not specifically target sleep and did not include sleep quantity or quality as an outcome measure.

Applying Parent-Child Sleep Interventions to Patients With Dementia and Their Caregivers

The focus in parent-child sleep interventions has been improving child sleep patterns. Lessons might be learned from the differing approaches seen in treating sleep problems among young and/or developmentally delayed children and their parents to inform the development of novel interventions to treat sleep problems in persons with dementia and their caregivers.

Primary Care Education

One intervention shown to be effective for improving parents' sleep involved nurses trained in sleep management meeting with mothers during primary care well-child visits. Nurses educated parents and drew upon a variety of behavioral strategies to help them develop a sleep-improvement plan based on each family’s particular needs. ¹³ Behavioral strategies were generally extinction, when parents wait progressively longer periods of time to respond to children’s nighttime cries, and adult fading, when parents sit with their children for progressively shorter periods of time as they are trying to fall asleep. Mothers who received the intervention reported half as many sleep problems and fewer depressive symptoms at both short- and long-term (2-year) follow-up as mothers assigned to the usual care condition.

Another positive outcome seen in mothers who received specific sleep-management strategies was an improvement in perceived relationship between mother and child. ¹³ This could be particularly applicable for dementia caregivers, as caregiver burden and low life satisfaction have consistently been shown to be primary predictors of nursing-home placement.^20,27

Brief psychoeducational sessions delivered by primary care nurses could be arranged to take place at quarterly dementia clinic visits. Including education and targeted problem solving during normally scheduled clinic visits could minimize burden on caregivers and potentially prevent future, costly problems associated with sleep deprivation and caregiver burnout.

Behavior Management

Extinction

A primary method for treating sleep problems in children is the institution of gradually longer periods of time between nighttime crying and parental attention to the crying, known as extinction. Parents are taught that nighttime awakenings and settling are learned, modifiable behaviors that can be reduced or eliminated with behavioral interventions. ²⁸ Extinction is not a commonly used intervention for improving sleep in patients with dementia and caregivers and may be a worthwhile direction for future study.

A review by the American Academy of Sleep Medicine demonstrated that both unmodified and graduated extinction are teachable, highly effective treatment options, not linked to long-term psychological effects on the child or parent-child bond.^29,30 Unmodified extinction involves children “crying it out” and parents ignoring their cries unless they perceive the child to be in physical danger. Graduated extinction instructs parents to slowly increase the amount of time between their child’s crying and parental attendance to cries. Both methods are highly effective, though graduated extinction is often a less distressing option for parents. ²⁹ A recent meta-analysis showed strong effects for the influence of unmodified extinction (d = 1.29) and graduated extinction (d = 2.03) on children sleeping through the night at 3 weeks posttreatment. ²⁹

A common concern about extinction for reducing sleep disturbance is that children may develop anxiety that their caregivers will not respond to their needs. However, graduated-extinction interventions have not shown support for either short- or long-term detrimental effects. In fact, families who participated in extinction interventions reported improvements in sleep quality, as well as in child daytime behavior and family well-being.^31,32 Patient daytime behavior and family well-being are commonly cited concerns in families that include a dementia caregiver-patient dyad. Positive effects could be attributable to increased independence of the care recipient, decreased burden on the caregiver, or improved sleep quality for all. Regardless, assessing the applicability of extinction in dementia caregivers and patients could provide further strategies for improving daily functioning among affected families.

Adult fading

A second method for treating sleep problems in children involves parents sitting with children for progressively shorter periods of time as they fall asleep, known as adult fading. This strategy is more graduated than extinction in that it does not require parents to withhold responding to their children. Rather, parents are asked to slowly shorten the period of time they spend with children as they fall asleep. ¹³ Another interpretation of fading involves systematically reducing the extent to which parental attention around sleeping is reinforcing to the child. ³⁰ For instance, when a parent responds to a nighttime awakening, the parent might give the child a bottle filled with water rather than milk. Limiting parents' time spent with children at bedtime and reinforcement for nighttime awakenings have both been found to be effective at reducing sleep disturbance in children and parents.^13,30

Combination strategies

Certain studies show special promise for the applicability of child-parent strategies to dementia caregiver-patient dyads. Combining strategies, for instance, extinction combined with sleep-enhancing medication (trimeprazine), has been shown to trigger an even faster response in children’s sleep behavior than extinction alone. ³² Behavioral interventions, including extinction, positive bedtime routines, white-noise machines, scheduled nighttime toileting, and other strategies, may also be effective and reported as useful by parents with children who are developmentally delayed. ³³

Although developmentally delayed children and older adults with dementia are not the same, the fact that approaches such as extinction are effective in cognitively impaired children suggests that they may hold promise for applicability among dementia caregiver-patient dyads. Because persons with dementia often have comorbid physical ailments that affect sleep, a combined behavioral-pharmacological intervention may be more effective for this population. Sleep medications have received scant study in persons with dementia. Trazodone is commonly used ³⁴ ; and newer-generation, nonbenzodiazepine sedatives such as zolpidem, zaleplon, and eszopiclone may also be useful. ²⁵

Contraindications and Tailoring Behavioral Routines

Generalizability of sleep-disturbance strategies from parent-child interventions to dementia caregiver-patient interventions may be mediated by patients' physical capabilities and degree of cognitive decline. First, medical staff and caregivers may need to consider how the patients' physical capabilities could impact the use of behavioral strategies to improve sleep. A patient with dementia could, for example, wake up confused and in a panic if his or her caregiver does not respond to calls. If patients are physically capable of getting out of bed alone and potentially causing harm to themselves or others, caregivers may need to make adjustments to the home environment to prevent, for example, wandering (with locks or alarmed doors), accidental medication overdose (limiting access to medications), or access to stoves and heating agents (disabling stoves or ovens). ³⁵

Second, these techniques may be realistically considered among persons in the early stages of dementia but may be too challenging for persons with advanced dementia. Most research on learning and cognitive rehabilitation has assessed those with relatively mild impairment or those in the early stages of dementia, ³⁶ and it is therefore unclear how notable an effect intervention may elicit. However, cognitive training that draws upon implicit rather than explicit memory may be effective, even among persons at relatively advanced stages of dementia. ³⁶ Moving from using traditional intervention strategies such as Reality Orientation Therapy or Validation Therapy, which have been shown to be beneficial but do not necessarily bring significant change in cognitive capacity, to using implicit memory—which remains fairly intact even as dementia advances—to teach skills may be a more fruitful venture. Furthermore, skills training for persons with dementia and their caregivers has been shown to be effective, potentially even more so than interventions designed to target more distal outcomes, ³⁷ which would support disseminating these skills to patient-caregiver dyads. At the late stages of dementia, caregivers may consider recruiting a secondary caregiver who could tend to the patient on some nights to allow the primary caregiver a full night of rest.

Third, medical staff and caregivers may need to adjust behavioral strategies for use with patients to maximize the use of cognitive abilities that may be more intact than others. For instance, explicit memory is highly affected by dementia but implicit memory remains relatively intact.^36,38 Thus, asking a patient with dementia to spontaneously recall the steps to undertake during a nighttime awakening would likely be less successful than if the patient had practiced cued retrieval. If a parent were to introduce graduated extinction to reduce sleep disturbance, she or he might spend 1 week responding to the child within 5 minutes, then spend the next week responding within 7 minutes, and so on until the child learns to self-soothe and go back to sleep without parental attention. This routine would likely need to be modified to incorporate extra time for patient learning, such as by simplifying the behavioral routine as much as possible. For instance, along with the typical extinction techniques, a caregiver might teach the patient simply to reach for his or her nightstand or open his or her eyes when waking up during the night. On the nightstand or even the ceiling above the patient’s bed, he or she might find a card detailing exactly what to do to self-soothe and go back to sleep. Strategies could be altered to maximize available cognitive resources, such as replacing the note card with a recording the patient could play if he or she is visually impaired.

Conclusions

Alzheimer’s disease and related dementias are among the most prevalent diseases among persons of advanced age ⁴ and are associated with chronically disrupted sleep among both patients and their caregivers. Drawing upon data from divergent populations prone to similar problems can be informative for advancing research and effective interventions. It is worthwhile to consider the generalizability of interventions aimed at improving disrupted sleep among young or developmentally delayed children and their parents to dementia patient-caregiver dyads.

Children with and without developmental delay and older adults with dementia are different in many ways, however, and may be affected by different contributors to sleep disruption. Common contributors to disrupted sleep in children include bedtime refusal or stalling, nighttime fears, and behavioral reinforcement (ie child who cannot fall asleep without mom or dad present). ³⁹ Sleep problems in persons with dementia, however, may be caused or exacerbated by physiological changes in the brain and neurochemicals that are inherent in dementia, which can lead to sundowning, primary sleep disorders, medical and psychiatric comorbidities, or medication side-effects. ²⁵

However, these bodies of literature overlap in a number of areas. A number of common factors can be seen among both populations, such as poor sleep hygiene, insufficient daytime activity, and negative bedtime routines, as well as common outcomes, such as daytime behavioral problems, decreased cognitive function, and family distress.^25,39

Negative consequences of sleep disruption among both parents and caregivers include higher likelihood of relationship dissatisfaction, perceived caregiver burden, daytime sleepiness, depression, and nursing-home placement (dementia caregivers only). Essential to improving sleep among parent-child and caregiver-patient dyads are sleep hygiene, stimulus control, daily physical activity, sleep compression, and scheduled awakenings. Behavioral intervention among severely developmentally delayed children and adults has been shown to be effective in improving sleep problems. These individuals have significant barriers to learning, possibly even more so than some persons with dementia, and interventions shown to be effective for them should be tested in patients with dementia.

One method of intervention commonly recommended and taught to parents of young children or children with developmental delay is graduated extinction. This technique of slowly increasing the amount of time between their children’s cries and their attention to cries, as it is commonly used, has been demonstrated as a highly effective intervention among young children and children with developmental delay.^29,33 These interventions have been associated with improved child daytime behavior and reduced likelihood of sleep problems, depressive symptoms, and relationship problems among parents. ¹³

It is unclear how generalizable these findings may be to dementia caregivers and patients. Persons with dementia and their caregivers are more likely to have a variety of additional health concerns that contribute to sleep disruption. In addition, interventions specific to caregivers' sleep disruptions would be an important contribution to this literature. Caring for a person with dementia may be particularly daunting, as stress and psychological morbidity are higher among caregivers of patients with AD and related dementias than among caregivers of nondemented persons who are chronically ill. ⁴⁰ In addition, even after patients have been placed in nursing homes or died, caregivers often continue to have sleep problems, ⁴¹ suggesting there may be unique stressors that persist even in the patients' absence. Sleep interventions targeting caregivers should involve modules for targeting factors likely to disrupt caregiver sleep, such as increased risk of depression, somatization, and negative situational appraisal, as well as length of time spent as a caregiver, managing potential primary medical or sleep disorders, among other concerns.^19,40

The first step for determining whether and to what extent sleep interventions for parents and children would be effective for caregivers and patients with dementia might be to conduct a small pilot study. The initial pilot could be modeled after McCurry and colleagues' ²² small-group format intervention in which extinction combined with sleep hygiene might be tested with or without comparison to a control condition. The intervention would be limited to improvement in caregiver and patient sleep; be a psychoeducational, small-group format; teach behavior modification and sleep skills to caregivers and patients; and engage in problem solving to optimize behavior modification. Ideally, the group sessions would be led by someone trained in behavioral modification and intervention, take place weekly, and occur on the same days as clinic visits to reduce caregiver and patient burden. Sessions would revolve around spaced retrieval as a learning strategy and caregiver behavioral responses to patient sleep difficulties, with specific session goals including homework review (ie, practicing cued retrieval on focus of previous week’s session), problem-solving difficulties implementing the intervention components, and teaching caregivers and patients 2 to 3 skills to improve sleep and respond to sleep problems.

If the initial pilot showed promise, a second pilot study could be modeled after Hiscock and colleagues' ¹³ primary care intervention, in which patients and caregivers would be instructed in using extinction in conjunction with sleep hygiene. The primary-care pilot study would again be focused on educating caregiver and patient about sleep skills and ways to modify reinforcement patterns that may maintain sleep problems. In a primary care setting, it may or may not be practical to spend time on cued retrieval as a method for teaching patients and would likely focus on caregiver modification of patient behavior.

If successful, a behavioral intervention that is predicated upon patients with dementia learning to manage themselves independently could elicit positive effects beyond improved sleep. Most persons with dementia were previously self-sufficient, with careers and important roles in their families and communities. Some patients may feel depressed or ashamed that they are no longer able to govern their daily lives. ⁴² Graduated extinction would require patients to, over time, learn how to self-soothe during the night and get to sleep without assistance from their caregivers. Second, it is possible that effective sleep interventions for persons and caregivers with dementia could improve daytime behavior and functioning of patients and reduce burden on caregivers. These improvements could, in turn, lead to delays in time to institutionalization.^20,21 Nursing home placement has been linked to increased patient morbidity and mortality, and even after placement caregivers often continue to have disrupted sleep. ⁴¹ Potentially increased time to institutionalization through a fairly simple intervention might be a worthwhile area of future study. In addition, implicit memory and cued retrieval remain relatively intact throughout much of the disease process for many patients with dementia. ³⁶ Introducing a behavior-modification technique such as extinction, which promotes independence, however minor, could help persons with dementia feel a momentary sense of pride at achieving a goal without help from others.