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Taking the Burden out of Sleep in Persons with Dementia and Their Caregivers

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Taking the Burden out of Sleep in Persons with Dementia and Their Caregivers Continuing Education Article Earn .1 AOTA CEU (one contact hour and 1.25 NBCOT PDU). See page CE-7 for details. Earn .1 AOTA CEU (one contact hour and 1.25 NBCOT PDU). See page CE-7 for details. Taking the Burden Out of Sleep in Persons With Dementia and Their Caregivers Kimberly Lloyd, OTD, OTR/L 4. Describe how occupational therapy can intervene to improve Rocky Mountain University of Health Professions, Provo, UT the occupation of sleep with persons with dementia and their Associate Professor, Idaho State University, Pocatello, ID caregivers Ellen Hudgins, OTD, OTR/L, ITOT INTRODUCTION Rocky Mountain University of Health Professions, Provo, UT Quality of life for persons with dementia (PWD) and their care- givers depends partly on sleep quality. Sleep is a core occupa- Kristin Biggins, OTD, OTR/L, CHT, CLT, PYT tion as defined in the Occupational Therapy Practice Framework: Rocky Mountain University of Health Professions, Provo, UT Domain and Process, 3rd Edition (Framework; American Occupa- tional Therapy Association [AOTA], 2014, 2017a). The Centers This article was developed in collaboration with AOTA’s Productive Aging for Disease Control and Prevention (2018) reported that 31.6% Special Interest Special Interest Section. of adults in the United States do not get a sufficient amount of sleep. PWD have more difficulty with sleep quality than their ABSTRACT age-matched peers (Peter-Derex et al., 2015). The Alzheimer’s Decreased sleep quality of persons with dementia (PWD) is Association in the United States reported that the prevalence of common, affecting not only the person diagnosed but also the dementia and Alzheimer’s disease (AD) is placing a burden on caregivers, and it can contribute to placement of these individ- the government and health care system as well as individuals and uals in assisted living facilities. Sleep seems to be a forgotten their caregivers. This population has more home health visits occupation, yet it is a core occupation essential to the health and skilled nursing home stays per year than others without the and well-being of all populations. Conservative or non-pharma- disease (Alzheimer’s Association, 2019). Sleep difficulties in PWD cological interventions (NPIs) are often overlooked as viable are the primary reason for early institutionalization (Gibson et solutions, and sleep in PWD is typically treated with tranquiliz- al., 2014). ing drugs. Yet pharmacological treatments can increase confu- This article aims to inform occupational therapy practitioners sion and increase the risk of falls. The intent of this article is about the effect sleep disturbances have on PWD and their care- to provide a summary of NPIs available for PWD and provide givers, and provides current evidence supporting NPIs. It is also occupational therapy practitioners with additional treatment intended to inform occupational therapy practice regarding the options for this population. current research supporting NPIs for sleep and how they may be incorporated into occupational therapy treatment planning for LEARNING OBJECTIVES community-dwelling PWD and their caregivers. After reading this article, you should be able to: AOTA’s (2017b) Vision 2025 states that occupational therapy 1. Articulate the importance of addressing sleep in persons with services should be evidence based and cost effective. Occupational dementia and their caregivers therapy practitioners can address the sleep issues of this population 2. Identify the effect of sleep quality disruptions in not only the using current evidence on NPIs. Evidence-based treatment for person with dementia but also their caregivers sleep disturbances may improve quality of life and increase the time 3. Discuss current evidence regarding non-pharmacological spent aging in place for those with dementia. Aging at home (i.e., interventions for sleep in persons with dementia and their delaying institutionalization) is not only preferred but also more caregivers cost effective for payment sources (Alzheimer’s Association, 2019). Median nursing home costs for PWD in 2019 ranged from $89,000 ARTICLE CODE CEA0320 | MARCH 2020 CE-1CE-1 CE Article, exam, and certificate are also available ONLINE. Continuing Education Article Register at http://www.aota.org/cea or Earn .1 AOTA CEU (one contact hour and 1.25 NBCOT PDU). See page CE-7 for details. call toll-free 877-404-AOTA (2682). to $100,000; mean assisted living costs were $48,000; and home Epidemiological studies have found that up to 45% of PWD care and adult day cares ranged from $72 to $132 per day, similar have sleep disturbances (Peter-Derex et al., 2015). Symptoms to the cost for assisted living facilities. of poor sleep quality among PWD include daytime irritabil- Caregivers are the primary determinant of when PDW are ity, decreased attention and motivation, and poor cognitive placed in a nursing or supervised facility (Gehrman et al., performance (Cipriani et al., 2015). Particularly in those with 2018). Occupational therapy practitioners often determine AD and other types of dementia, sleep disturbances have been when a PWD needs higher level of assistance and may assess the correlated with impaired memory, decreased ability for new need for long-term care. Moreover, the occupational therapist learning, hallucinations, and nighttime agitation (Peter-Derex et may assess caregiver burnout when treating such clients. With al., 2015). Gibson and colleagues (2014) reported that sleep dis- increased knowledge of the importance of sleep in PWD and turbances are the most difficult behavior associated with PWD, their caregivers and information on NPIs, occupational therapy and that sleep difficulties are the primary reason for deciding to practitioners can potentially help delay institutionalization and place a loved one in an institution or facility. These symptoms support aging in place. affect not only the PWD but also the caregiver and the relation- ship between the two. SLEEP AND OCCUPATIONAL THERAPY Sleep is a core occupation addressed by occupational therapy Caregiver Impact of Sleep Disturbances Among PWD professionals, as outlined in the Framework (AOTA, 2014). Sleep Symptoms in PWD progress in severity over time, and family is a restorative occupation that allows one to recover and move caregivers are the custodians navigating these challenging forward each day. Sleep is a complex phenomenon generated symptoms as well as the consequences of sleep disturbances. and modulated by the hypothalamus, brainstem, and thalamus Chiu and colleagues (2014) found through a cross-sectional (Cipriani et al., 2015). Occupational therapy is in an informed study of family caregivers of PWD that two thirds of 180 couples position to address sleep with clients. When looking at sleep, experienced some form of sleep disturbance themselves. The one must take into consideration the person’s roles, habits, authors suggest common symptoms for the caregivers include routines, disease, health, and wellness. Poor sleep quality is depression and fatigue. This cross-sectional study found a strong defined by the National Sleep Foundation (n.d.) as decreased positive correlation between caregivers’ distress and sleep dis- sleep latency (when falling asleep takes more than 30 minutes), turbance (r = 0.20-0.29, p<0.01). Sleep disturbance and distress waking more than one time during the night, and staying awake related to neuropsychiatric symptoms among PWD was exem- more than 20 minutes after a nighttime awakening. plified by hallucinations, agitation, depression, and anxiety. This Impaired sleep can directly affect daytime occupations, study was conducted in Taiwan, which may affect its generaliz- such as driving, social interactions, work, and leisure (Small- ability to other geographical areas (Chiu et al., 2014). field & Molitor, 2018). According to Tester and Foss (2018), Providing care for PWD can be difficult for family members occupational therapy practitioners often overlook sleep issues and health care professionals. Caring for PWD on a daily basis with clients, particularly those with neurological conditions. is already difficult; adding medical professionals’ recommen- Impaired sleep contributes to an increased need for medical ser- dations can further complicate the caregiver’s role and respon- vices, affects quality of life, and contributes to earlier morbidity sibilities. One reason for caregivers’ discontent is health care (Capezuti et al., 2018). People tend to seek over-the-counter workers prescribing interventions and additional tasks without remedies, alcohol, or other substances rather than seek medical considering the caregivers’ health, well-being, quality of life, and advice when experiencing sleep disturbances (Ho & Siu, 2018). sleep (Jurgens et al., 2012). Health care professionals as a matter of course should Dementia and Sleep address disruptions in sleep of PWD and their caregivers. Shim Dementia is a debilitating neurocognitive disorder that occurs and colleagues (2012) found through a qualitative study of 21 most frequently in older adults and diminishes a person’s ability spousal caregivers of PWD that the perception of the caregiving to function in everyday life (Cipriani et al., 2015). Sleep serves experience profoundly affected how caregivers received edu- as a restorative function and plays a critical role in cognitive cation. Caregiver perceptions of their experiences were either functioning. According to the National Sleep Foundation negative or positive based on three factors: (1) current relation- (n.d.),
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