Patterns of Disruptive Feeding Behaviors in Infants With Neonatal Abstinence Syndrome.

BACKGROUND: Severe irritability in infants with neonatal abstinence syndrome often impacts their ability to feed successfully, which challenges a mother's ability to demonstrate this most basic parenting skill. There is little empiric evidence to guide recommendations for practice in this population. PURPOSE: Describe the infant behaviors that disrupt feeding in infants with neonatal abstinence syndrome. METHODS: A mixed-method approach was used to describe digitally recorded infant feeding behaviors. Qualitative methodology was first used to identify categories of behaviors during the feeding. The categories were used as a coding scheme to identify the temporal sequence, duration, and frequency of behaviors observed during a feeding. RESULTS: The behavior categories that disrupted feeding were identified as fussing, resting, crying, and sleeping/sedated. Infants spent almost twice as much time in fussing as in feeding. The majority of the infants were fussing between 1 and 11 minutes during the feeding, and fussing disrupted feeding in every subject at least once. Feeding behavior occurred only 24% of the time, while fussing and crying occurred 51%. Fussing was the primary transitional behavior from one category to another. Infants who did not complete their feeding had nearly twice the mean number of fussing episodes as those who completed their feeding. IMPLICATIONS FOR PRACTICE: Fussing is a transitional state and appears to provide an opportunity to test interventions that help the mothers re-engage their infants in feeding. The frequency of the behavioral transitions provides a measure of irritability that has not been previously described in this population. IMPLICATIONS FOR RESEARCH: Additional study is needed to evaluate the impact and contributions of maternal behaviors and external variables on infant behavioral transition.

Nurse entrepreneurs, arise!: improving lives of older adults by bringing your ideas to market.

Many functions that nurses carry out require the use of various technologies, yet nurses are rarely involved in the development and/or testing of technology. The purpose of this article is to provide an introduction to the world of technology development to help nurses understand how to become involved in this endeavor. An illustration of a newly developed technology will be used to further clarify the steps.

Development and Initial Evaluation of Web-Based Cognitive Behavioral Therapy for Insomnia in Rural Family Caregivers of People With Dementia (NiteCAPP): Mixed Methods Study.

BACKGROUND: Informal caregivers of people with dementia frequently experience chronic insomnia, contributing to stress and poor health outcomes. Rural caregivers are particularly vulnerable but have limited access to cognitive behavioral therapy for insomnia (CBT-I), a recommended frontline treatment for chronic insomnia. Web-based delivery promises to improve insomnia, particularly for rural caregivers who have limited access to traditional in-person treatments. Our team translated an efficacious 4-session standard CBT-I content protocol into digital format to create NiteCAPP. OBJECTIVE: This study aimed to (1) adapt NiteCAPP for dementia caregivers to create NiteCAPP CARES, a tailored digital format with standard CBT-I content plus caregiver-focused modifications; (2) conduct usability testing and evaluate acceptability of NiteCAPP CARES' content and features; and (3) pilot-test the adapted intervention to evaluate feasibility and preliminary effects on sleep and related health outcomes. METHODS: We followed Medical Research Council recommendations for evaluating complex medical interventions to explore user needs and adapt and validate content using a stepwise approach: (1) a rural dementia caregiver (n=5) and primary care provider (n=5) advisory panel gave feedback that was used to adapt NiteCAPP; (2) caregiver (n=5) and primary care provider (n=7) focus groups reviewed the newly adapted NiteCAPP CARES and provided feedback that guided further adaptations; and (3) NiteCAPP CARES was pilot-tested in caregivers (n=5) for feasibility and to establish preliminary effects. Self-report usability measures were collected following intervention. Before and after treatment, 14 daily electronic sleep diaries and questionnaires were collected to evaluate arousal, health, mood, burden, subjective cognition, and interpersonal processes. RESULTS: The stepped approach provided user and expert feedback on satisfaction, usefulness, and content, resulting in a new digital CBT-I tailored for rural dementia caregivers: NiteCAPP CARES. The advisory panel recommended streamlining content, eliminating jargon, and including caregiver-focused content. Focus groups gave NiteCAPP CARES high usefulness ratings (mean score 4.4, SD 0.79, scored from 1=least to 5=most favorable; score range 4.2-4.8). Multiple features were evaluated positively, including the intervention's comprehensive and engaging information, caregiver focus, good layout, easy-to-access intervention material, and easy-to-understand sleep graphs. Suggestions for improvement included the provision of day and night viewing options, collapsible text, font size options, tabbed access to videos, and a glossary of terms. Pilot-test users rated usefulness (mean score 4.3, SD 0.83; range 4.1-4.5) and satisfaction (mean score 8.4, SD 1.41, scored from 1=least to 10=most satisfied; range 7.4-9.0) highly. Preliminary effects on caregiver sleep, arousal, health, mood, burden, cognition, and interpersonal processes (all P<.05) were promising. CONCLUSIONS: Adaptations made to standard digital CBT-I created a feasible, tailored digital intervention for rural dementia caregivers. Important next steps include further examination of feasibility and efficacy in a randomized controlled trial with an active control condition, a multisite effectiveness trial, and eventual broad dissemination. TRIAL REGISTRATION: ClinicalTrials.gov NCT04632628; https://clinicaltrials.gov/ct2/show/NCT04632628.

Nighttime activity in individuals with dementia: understanding the problem and identifying solutions.

Sleep disturbances may occur in more than 50% of individuals with dementia, and nighttime activity can lead to unsafe situations and serious consequences for both the person and his or her caregivers. Nighttime awakenings expose individuals with dementia to two major dangers: falls and unattended home exits. This article is a review of the current research on the causes of sleep disturbances and interventions for nighttime activity in individuals with dementia living at home.

Using Telehealth to Deliver Cognitive Behavioral Treatment of Insomnia to a Caregiver of a Person With Alzheimer's Disease.

Cognitive behavioral therapy for Insomnia (CBT-I) is the gold standard treatment for insomnia. There is limited access to qualified providers to deliver CBT-I; moreover, there are patient populations who struggle with access to insomnia care due to limited time and resources. This includes caregivers for persons with Alzheimer's disease, for whom sleep disturbance is a common concern. Utilizing telehealth to deliver CBT-I may be particularly important for vulnerable populations such as caregivers of persons with dementia, as it can offer an accessible, safe, and cost-effective treatment option that can be tailored to meet the needs of a specific population. This case study illustrates the successful implementation of a four-session CBT-I protocol through telehealth with a caregiver of a person with Alzheimer's disease. Given the success of this case and the conditions for psychological care the recent pandemic has created, continued research into the efficacy of sleep-related interventions through telehealth is warranted.

Impact of Web-Based Cognitive Behavioral Therapy for Insomnia on Stress, Health, Mood, Cognitive, Inflammatory, and Neurodegenerative Outcomes in Rural Dementia Caregivers: Protocol for the NiteCAPP CARES and NiteCAPP SHARES Randomized Controlled Trial.

BACKGROUND: Chronic insomnia affects up to 63% of family dementia caregivers. Research suggests that chronic insomnia prompts changes in central stress processing that have downstream negative effects on health and mood, as well as on cognitive, inflammatory, and neurodegenerative functioning. We hypothesize that cognitive behavioral therapy for insomnia (CBT-I) will reverse those downstream effects by improving insomnia and restoring healthy central stress processing. Rural caregivers are particularly vulnerable, but they have limited access to CBT-I; therefore, we developed an accessible digital version using community input (NiteCAPP CARES). OBJECTIVE: This trial will evaluate the acceptability, feasibility, and short-term and long-term effects of NiteCAPP CARES on the sleep and stress mechanisms underlying poor caregiver health and functioning. METHODS: Dyads (n=100) consisting of caregivers with chronic insomnia and their coresiding persons with dementia will be recruited from Columbia and surrounding areas in Missouri, United States. Participant dyads will be randomized to 4 weeks (plus 4 bimonthly booster sessions) of NiteCAPP CARES or a web-based sleep hygiene control (NiteCAPP SHARES). Participants will be assessed at baseline, after treatment, and 6- and 12-month follow-ups. The following assessments will be completed by caregivers: 1 week of actigraphy and daily diaries measuring sleep, Insomnia Severity Index, arousal (heart rate variability), inflammation (blood-derived biomarkers: interleukin-6 and C-reactive protein), neurodegeneration (blood-derived biomarkers: plasma amyloid beta [Aß40 and Aß42], total tau, and phosphorylated tau [p-tau181 and p-tau217]), cognition (Joggle battery, NIH Toolbox for Assessment of Neurological and Behavioral Function, and Cognitive Failures Questionnaire), stress and burden, health, and mood (depression and anxiety). Persons with dementia will complete 1 week of actigraphy at each time point. RESULTS: Recruitment procedures started in February 2022. All data are expected to be collected by 2026. Full trial results are planned to be published by 2027. Secondary analyses of baseline data will be subsequently published. CONCLUSIONS: This randomized controlled trial tests NiteCAPP CARES, a web-based CBT-I for rural caregivers. The knowledge obtained will address not only what outcomes improve but also how and why they improve and for how long, which will help us to modify NiteCAPP CARES to optimize treatment potency and support future pragmatic testing and dissemination. TRIAL REGISTRATION: ClinicalTrials.gov NCT04896775; https://clinicaltrials.gov/ct2/show/NCT04896775. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/37874.

Persons with dementia missing in the community: is it wandering or something unique?

BACKGROUND: At some point in the disease process many persons with dementia (PWD) will have a missing incident and be unable to safely return to their care setting. In previous research studies, researchers have begun to question whether this phenomenon should continue to be called wandering since the antecedents and characteristics of a missing incident are dissimilar to accepted definitions of wandering in dementia. The purpose of this study was to confirm previous findings regarding the antecedents and characteristics of missing incidents, understand the differences between those found dead and alive, and compare the characteristics of a missing incident to that of wandering. METHODS: A retrospective design was used to analyse 325 newspaper reports of PWD missing in the community. RESULTS: The primary antecedent to a missing incident, particularly in community-dwelling PWD, was becoming lost while conducting a normal and permitted activity alone in the community. The other common antecedent was a lapse in supervision with the expectation that the PWD would remain in a safe location but did not. Deaths most commonly occurred in unpopulated areas due to exposure and drowning. Those who died were found closer to the place last seen and took longer to find, but there were no significant differences in gender or age. The key characteristics of a missing incident were: unpredictable, non-repetitive, temporally appropriate but spatially-disordered, and while using multiple means of movement (walking, car, public transportation). Missing incidents occurred without the discernible pattern present in wandering such as lapping or pacing, repetitive and temporally-disordered. CONCLUSIONS: This research supports the mounting evidence that the concept of wandering, in its formal sense, and missing incidents are two distinct concepts. It will be important to further develop the concept of missing incidents by identifying the differences and similarities from wandering. This will allow a more targeted assessment and intervention strategy for each problem.

Sleep in dementia caregivers and the effect of a nighttime monitoring system.

PURPOSE: The purpose of this study was to determine if a nighttime home monitoring system, designed to track the movements of a care recipient with dementia, would relieve worry and improve sleep in caregivers of persons with dementia. DESIGN AND METHODS: In this controlled clinical trial, 49 dementia caregivers were followed for up to 1 year. Sleep was measured for 7-day intervals at nine points in time using actigraphy and a sleep diary. FINDINGS: Although the experimental caregivers generally reported that the system was "of great help" in relieving worry about nighttime activity, no significant group differences were found using multilevel modeling analyses. With regard to total sleep time, time awake after sleep onset, and sleep quality, multilevel models did not demonstrate any changes in sleep between groups, either averaged over time or for the interaction of group and time. CONCLUSIONS: Since previous analysis of our qualitative data suggested improvements in caregiver worry and sleep, problems other than night awakenings may be perpetuating the sleep problem. Future studies should include testing of multimodal sleep interventions. CLINICAL RELEVANCE: Caregivers have high amounts of unwanted wake time during the night and additional research is needed to identify effective interventions to improve their sleep.

Reducing dangerous nighttime events in persons with dementia by using a nighttime monitoring system.

BACKGROUND: Nighttime activity, a common occurrence in persons with dementia, increases the risk for injury and unattended home exits and impairs the sleep patterns of caregivers. Technology is needed that will alert caregivers of nighttime activity in persons with dementia to help prevent injuries and unattended exits. METHODS: As part of a product development grant, a controlled pilot study was conducted to test the effectiveness of a new night monitoring system designed for informal caregivers to use in the home. Data from 53 subjects were collected at nine points in time during a 12-month period regarding injuries and unattended home exits that occurred while the caregiver slept. Nighttime activity frequently resulted in nursing home placement. RESULTS: The night monitoring system proved a reliable adjunct to assist caregivers in managing nighttime activity. A total of nine events (injuries or unattended home exits) occurred during the study, with 6 events occurring in the control group. With intent-to-treat analysis, there was no difference between the groups. However, in a secondary analysis that was based on use of the intervention, experimental subjects were 85% less likely to sustain an event than control subjects. CONCLUSIONS: When nighttime activity occurred, it resulted in severe injuries sometimes associated with subsequent nursing home placement. The night monitoring system represents a new technology that caregivers can use to assist them in preventing nighttime injuries and unattended home exits in care recipients with dementia.

A research proposal testing a new model of ambulation activity among long-term care residents with dementia/cognitive impairment: the study protocol of a prospective longitudinal natural history study.

BACKGROUND: Excessive and patterned ambulation is associated with falls, urinary tract infections, co-occurring delirium and other acute events among long-term care residents with cognitive impairment/dementia. This study will test a predictive longitudinal data model that may lead to the preservation of function of this vulnerable population. METHODS/DESIGN: This is a single group, longitudinal study with natural observations. Data from a real-time locating system (RTLS) will be used to objectively and continuously measure ambulation activity for up to 2 years. These data will be combined with longitudinal acute event and functional status data to capture patterns of change in health status over time. Theory-driven multilevel models will be used to test the trajectories of falls and other acute conditions as a function of the ambulation activity and demographic, functional status, gait quality and balance ability including potential mediation and/or moderation effects. Data-driven machine learning algorithms will be applied to run screening of the high dimensional RTLS data together with other variables to discover new and robust predictors of acute events. DISCUSSION: The findings from this study will lead to the early identification of older adults at risk for falls and the onset of acute medical conditions and interventions for individualized care.

Sleep and affect in older adults: using multilevel modeling to examine daily associations.

The main objective of the present study was to examine daily associations (intraindividual variability or IIV) between sleep and affect in older adults. Greater understanding of these associations is important, because both sleep and affect represent modifiable behaviors that can have a major influence on older adults' health and well-being. We collected sleep diaries, actigraphy, and affect data concurrently for 14 days in 103 community-dwelling older adults. Multilevel modeling was used to assess the sleep-affect relationship at both the group (between-persons) and individual (within-person or IIV) levels. We hypothesized that nights characterized by better sleep would be associated with days characterized by higher positive affect and lower negative affect, and that the inverse would be true for poor sleep. Daily associations were found between affect and subjective sleep, only and were in the hypothesized direction. Specifically, nights with greater reported awake time or lower sleep quality ratings were associated with days characterized by less positive affect and more negative affect. Gender was not a significant main effect in the present study, despite previous research suggesting gender differences in the sleep-affect relationship. The fact that self-ratings of sleep emerged as the best predictors of affect may suggest that perceived sleep is a particularly important predictor. Finally, our results suggest exploration of affect as a potential intervention target in late-life insomnia is warranted.

Expanding participation in Alzheimer's association Safe Return by improving enrollment.

Every adult with a diagnosis of progressive dementia is at risk for wandering away or becoming lost. Those with dementia may not have the capacity to remember crucial contact information or recognize an unsafe situation, so enrollment in a program like Alzheimer's Association Safe Return is crucial. One facility-level enrollment plan at the James A. Haley Veterans Hospital in Florida has had a relatively high participation rate. A mailed survey was used to help evaluate that enrollment process and the results are described here. Of 262 respondents to the survey, 193 (74%) indicated the person with dementia enrolled in Safe Return. Potential enrollees need the following facilitators: perception of an unsafe situation, financial support and easy processing. Safe Return is not just focused on those who wander but is essential for all persons with dementia as these individuals can become lost in the course of normal daily activities.

Sleep hygiene practices in two community dwelling samples of older adults.

STUDY OBJECTIVES: Common sleep hygiene practices were examined in 2 community-based samples of older adults to determine which practices differentiated 4 sleep subgroups: noncomplainers without insomnia symptoms, complainers without insomnia symptoms, noncomplainers with insomnia symptoms, and complainers with insomnia symptoms. DESIGN: Two weeks of sleep diaries provided napping and bed/out-of-bed time variability data. A retrospective questionnaire provided data on caffeine, cigarette, and alcohol usage. Recruitment involved random digit dialing (Sample 1) and advertisements (Sample 2). SETTING: Memphis, TN area (Sample 1); Gainesville, FL area (Sample 2). PARTICIPANTS: 310 individuals 60-96 years (Sample 1); 103 individuals 60-89 years (Sample 2). INVENTIONS: N/A. MEASUREMENTS AND RESULTS: Older individuals with sleep complaints did not report engaging in poorer sleep hygiene practices than those without complaints with the exception of frequency of napping. For Sample 1 only, complainers reported napping on 1.5-2.0 more days per week than noncomplainers. Sleep subgroups in both samples did not differ for the other sleep hygiene practices studied. CONCLUSIONS: Overall, sleep hygiene behaviors did not differentiate the 4 sleep subgroups. The efficacy of sleep hygiene as a therapy for late life insomnia appears questionable in this context. Both complaining sleep subgroups napped more frequently than both noncomplaining subgroups in Sample 1. Additional research is needed to clarify the clinical implications of nap frequency as these results did not replicate in Sample 2, and the impact of napping on nighttime sleep remains unclear. Inconsistencies with previous research in younger samples support the need for more research specifically targeting older individuals' sleep patterns and behaviors.

Changes in Sleep Predict Changes in Affect in Older Caregivers of Individuals with Alzheimer's Dementia: A Multilevel Model Approach.

OBJECTIVES: Understanding predictors of older dementia caregivers' mood could provide insight into potential treatments which may delay institutionalization of their care recipient. Research with older noncaregivers has shown that nights characterized by better subjective sleep were associated with days characterized by higher positive and lower negative affect, and vice versa. Examining daily relationships is important, as sleep and affect are state-like behaviors that fluctuate within individuals, across time. This study was a preliminary examination of whether a sample with a greater proportion of older dementia caregivers exhibits similar daily sleep/affect associations. METHODS: Sleep diaries, actigraphy, and affect data were collected concurrently for 7 days in 55 community-dwelling, dementia caregivers (M = 62.80 years, SD = 12.21; 77.8% female). Sleep and affect were examined within- (day-to-day level) and between-persons (mean level). RESULTS: Findings for older noncaregivers were replicated for negative affect only. Specifically, nights characterized by better subjective sleep were characterized by lower negative affect, and vice versa. DISCUSSION: Examining older caregivers' daily sleep/affect association is important, because caregiving-related awakenings are unavoidable, often unpredictable, and can impact mood. Future research is needed to examine whether regularization in awakenings and/or negative affect represent important secondary, or even target, treatment outcomes for this vulnerable population.

Sleep complaints, subjective and objective sleep patterns, health, psychological adjustment, and daytime functioning in community-dwelling older adults.

We examined sleep complaints, subjective and objective sleep patterns, health, psychological adjustment, and daytime functioning in 103 community-dwelling older adults to identify factors associated with sleep complaints. We collected 2 weeks of sleep diaries and actigraphy. Only health distinguished complaining from noncomplaining sleepers. Noncomplaining good sleepers had poorer objective sleep quantity than complaining poor sleepers. Actigraphy distinguished noncomplaining good and complaining poor sleepers only. Subjective and objective sleep quantities were related for noncomplainers only; this relationship was stronger for women. Implications include a need for research exploring: 1. sleep complaints, sleep perceptions, and health; 2. interventions focusing on older individuals with insomnia secondary to/comorbid with poor health; 3. gender differences in subjective sleep estimates and in "single-shot" versus longitudinal sleep measures.

Depression in informal caregivers of persons with dementia.

BACKGROUND: Worldwide, there are more than 35 million individuals diagnosed with Alzheimer's disease. Many of these individuals are cared for at home by unpaid caregivers who often report high levels of depressive symptoms and depression. The majority of studies conducted to predict which caregivers are at risk for depression have examined non-modifiable risk factors. Therefore, it is important to discover modifiable factors that may be associated with risk for depression in caregivers. OBJECTIVES: The aims of this research were to identify a set of factors that are modifiable and known to be associated with high levels of depression/depressive symptomology (D/DS) in other populations and to determine whether these factors are predictive of D/DS after controlling for non-modifiable, demographic, and clinical factors. DESIGN: Secondary data analysis. METHODS: Fifty-three participants provided direct care to a person with dementia with night-time activity. Inclusion criteria included not undergoing treatment for sleep disorders; living with the care recipient; and a Mini-Mental Status Exam score > 27. Baseline data collected by questionnaires, sleep diary and actigraphy. RESULTS: In multivariate analyses of the modifiable factors, only high levels of negative affect predicted higher levels of depressive symptomatology. When non-modifiable factors were included in the model, negative affect and high levels of perceived caregiver burden predicted 52.6% of the variance in depressive symptomology. In secondary analyses, wake after sleep onset misperception was associated with higher depression scores. CONCLUSIONS: While negative affect had a moderate effect on depressive symptoms, modifiable factors often associated with depressive symptoms in other studies were not associated with caregiver depression in this study. Possibly caregivers' overall poor sleep causes a floor effect and masks a potential relationship. IMPLICATIONS FOR PRACTICE: Both caregivers' affect and perceived burden are strongly related to depressive symptoms, so healthcare practitioners need to frequently assess both so as to provide timely interventions.

Characteristics of and Barriers to Functional Status Assessment in Assisted Living.

The most commonly used functional status (FS) instruments were examined to determine the validity, reliability, sensitivity, and specificity to change and feasibility in residents in an assisted living facility (ALF). Twenty-six ALF residents were assessed weekly for up to 8 months using six instruments. Group and single-subject analyses were used to examine associations between instruments and acute events. Two were problematic initially (Katz Index of Independence in Activities of Daily Living and hand grip) and were excluded early in the study. Of the remaining instruments, only the Barthel Index and Resident Assessment Instrument had acceptable psychometric profiles. However, these instruments were either not feasible in this environment or did not capture the full range of FS in this population. The current study's findings suggest that instruments commonly used to measure FS may be inadequate for this population and environment. These findings may be used to develop assessment methods for ALF residents that capture both the full range of FS in ALF settings as well as acute and long-term changes in functioning.

Persons with dementia who become lost in the community: a case study, current research, and recommendations.

Providing care for persons with dementia presents several serious challenges. Among these is the possibility that a person with dementia will become lost in the community and face the risk of injury or death. Caregivers often cite anxiety about this possibility as a reason for placing their loved ones in a professional-care setting. Our case study and review of research show that all persons with dementia are at risk, regardless of age, past behavior, and sex. Thus, health care providers have an important role to play in educating caregivers about this risk and assisting them in preventing or responding to such situations. In addition, health care providers should ensure that their respective professional-care facilities have appropriate measures in place to prevent and respond to these eventualities. Finally, health care providers can educate local law enforcement personnel about dementia in general and more specifically about research-based strategies for searching for persons with dementia who have become lost in the community.

A look at deaths occurring in persons with dementia lost in the community.

The purpose of this study was to examine cause of death in persons with dementia (PWDs) who have become lost in the community. The study was a retrospective review of 93 US newspaper articles describing PWDs being found dead in the community after leaving their caregiving situations unattended. Of these PWDs, 87 percent were found dead in natural, secluded, unpopulated areas, such as woods, fields, ditches, and bodies of water. They were generally found less than a mile from where they left, but often were not found for extended periods. Males and persons from community-based residential facilities appear to be at higher risk of dying after leaving unattended than females and those living at home.

Injuries sustained by community-dwelling individuals with dementia.

As the percentage of individuals with dementia continues to increase in the American population, it is particularly important to understand and prevent conditions that may have an impact on the course of the disease. In this study, injuries that occurred in the home with a subsequent in-patient admission were studied using a medical record review. Ninety-six percent of individuals were injured as a result of a fall. The falls resulted in fractures in 61% of the subjects. Interestingly, 35% were admitted after only sustaining soft tissue injuries. Most subjects (65%) were discharged to an institutional setting instead of returning home. Clearly, fall prevention should be addressed in-depth when caring for individuals with dementia in the home to prevent early institutionalization.