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Background:As many as 70% of intensive care unit (ICU) survivors suffer from long-term physical, cognitive, and psychological impairments known as post-intensive care syndrome (PICS). We describe how the first ICU survivor clinic in the United States, the Critical Care Recovery Center (CCRC), was designed to address PICS using the principles of Agile Implementation (AI).Methods:The CCRC was designed using an eight-step process known as the AI Science Playbook. Patients who required mechanical ventilation or were delirious ≥48 hours during their ICU stay were enrolled in the CCRC. One hundred twenty subjects who completed baseline HABC-M CG assessments and had demographics collected were included in the analysis to identify baseline characteristics that correlated with higher HABC-M CG scores. A subset of patients and caregivers also participated in focus group interviews to describe their perceptions of PICS.Results:Quantitative analyses showed that the cognitive impairment was a major concern of caregivers. Focus group data also confirmed that caregivers of ICU survivors (n = 8) were more likely to perceive cognitive and mental health symptoms than ICU survivors (n = 10). Caregivers also described a need for ongoing psychoeducation about PICS, particularly cognitive and mental health symptoms, and for ongoing support from other caregivers with similar experiences.Conclusions:Our study demonstrated how the AI Science Playbook was used to build the first ICU survivor clinic in the United States. Caregivers of ICU survivors continue to struggle with PICS, particularly cognitive impairment, months to years after discharge. Future studies will need to examine whether the CCRC model of care can be adapted to other complex patient populations seen by health-care professionals.

COVID-19 pandemic has deeply affected the care that older adults with Alzheimer´s Disease(AD) and related disorders received in Argentina. Even though circulation for familycaregivers of subjects with dementia was one of the few exceptions allowed by thegovernment (Ministerio de la Nación, 2020), we observed that most family members decidedto stop visiting their relatives from fear of spreading the disease.COVID-19 epidemic is causing a radical change in the model of dementia care. Before thispandemic, engaging in social activities, performing cognitive and physical activities, andhaving a productive daily routine has been the mainstay therapy. (Austrom, M. G. et al.,2018). To relief caregiver stress, literature has shown that multicomponent strategies suchas avoiding isolation, attending family and group support meetings, sharing the burden ofcare with other family members were useful (Hughes, T.B. et al., 2014). Now, in times ofCOVID-19, we recommend the most strict social isolation, especially for older patients withdementia and other comorbidities who have the highest risk for severe COVID-19 diseaseand mortality. ( Emami et al., 2020).Previous quarantines in human history had a negative psychological impact on outcomessuch as anger, depression, and loneliness in the general population. (Brooks et al., 2020)but the effects on the wellbeing and standard care of subjects with dementia living in thecommunity is not well studied. The objective of our research was to study to what extendmandatory social isolation affected the stress and burden of care of family members caringfor subjects with dementia after the initial four weeks of quarantine and to study therelationship between the severity of the dementia, measured with the Clinical DementiaRating (CDR) (Hughes, C. et al. 1982) and the impact of the negative effects of quarantinein our setting. Fil: Cohen, Gabriela. Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia; Argentina Fil: Russo, María Julieta. Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia; Argentina Fil: Campos, Jorge A. Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia; Argentina Fil: Allegri, Ricardo Francisco. Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina

ContextMusic therapy is frequently provided to patients at the end of life, and studies have shown a benefit in relief of symptoms and a positive impact on quality of life (QoL), but little is known regarding the effect of music therapy (MT) on caregivers. Caregivers are at risk for anxiety, emotional distress and experience anticipatory grief as the patient nears death. Caregivers are present with patients and may also benefit from MT.ObjectiveTo assess the impact of MT on caregivers for hospice patients and determine the feasibility of research in this population.MethodsTwenty caregivers of patients hospitalized for general inpatient hospice care were enrolled. MT was provided by a board-certified music therapist, and sessions included pre-MT assessment, 20-45 minutes of MT, and post-MT assessment. Caregiver stress was measured with the Pearlin Role Overload Measure (ROM), QoL was measured with the Linear Analogue Self-Assessment (LASA), and depression and anxiety were measured with the Patient Health Questionnaire for Depression and Anxiety (PHQ-4). These three measures were taken pre-MT, post-MT and 6 months post-MT. Caregivers were also asked to complete a Music Therapy Program Survey post-MT.ResultsThe MT intervention was completed for 15/20 caregivers (75%). Of those who did not complete MT, 2 withdrew prior, 1 was not available, 1 patient passed during the MT session, and 1 patient died prior to MT. 14 caregivers completed pre-MT and post-MT assessments, and 9 caregivers completed assessments at all 3 timepoints. The MT Program Survey (post-MT assessment, n=14) showed 100% of caregivers were very satisfied with MT and would recommend to others, 78% found MT effective for stress relief, 69% for relaxation, 71% for spiritual support, 86% for emotional support, and 71% for feeling of wellness.ConclusionResearch on MT is feasible for acute hospice care caregivers with a majority of caregivers consenting to research and about half completing surveys pre-MT, post-MT, and 6-months post-MT (9/20). Future larger studies should be conducted to better assess the impact of MT on caregivers.

Background:Very few recent studies are available that compare caregiver burden, sleep quality, and stress in caregivers of different types of dementia. We aimed to investigate caregiver burden, sleep quality, and stress in caregivers of patients with frontotemporal lobar degeneration and dementia with Lewy bodies, as compared with caregivers of patients with Alzheimer's disease.Methods:This study was carried out from March 2011 to January 2014. In total, 492 dyads of patient and caregiver (frontotemporal lobar degeneration, n = 131; dementia with Lewy bodies, n = 36; Alzheimer's disease, n = 325) participated in this study. We compared patients with respect to the Neuropsychiatric Inventory and caregivers with respect to the Zarit Caregiver Burden Interview, Pittsburgh Sleep Quality Index, Patient Health Questionnaire-9, and Generalized Anxiety Disorder scale.Results:Frontotemporal lobar degeneration and dementia with Lewy bodies patients presented significantly more neuropsychiatric symptoms compared to Alzheimer's disease patients. Caregivers of frontotemporal lobar degeneration and dementia with Lewy bodies patients experienced significantly more burden compared to Alzheimer's disease caregivers. Furthermore, among caregivers of both frontotemporal lobar degeneration and dementia with Lewy bodies patients burden was predicted by the neuropsychiatric symptoms, PHQ-9 scores, and GAD-7 scores.Conclusions:The frequency and severity of behavioral disturbances in patient and caregiver stress accounted for the increased caregiver burden, which suggests that frontotemporal lobar degeneration and dementia with Lewy bodies caregivers should receive more support than is currently available.

Over the past two decades, caregiver stress has been the subject of scientific inquiry by investigators around the world representing a variety of disciplines. The knowledge base is extensive and growing, particularly as it relates to the phenomenology and correlates of caregiver stress. The six papers published here represent a snapshot of prevailing lines of inquiry and enhance our knowledge regarding: predictors of psychological distress for dementia family caregivers in Japan (Shikimoto et al., 2017) and for Indonesian and Burmese foreign domestic workers caring for frail older adults in Singapore (Ha et al., 2018); identification of a threshold number of behavioral symptoms in those with dementia associated with caregiver distress (Arthur et al., 2017); the influence of specific illness factors on caregiver stress, including comorbid diabetes in patients with Alzheimer's disease (Li et al., 2018) and a comparison of the effects of behavioral disturbances on caregiver burden across three types of dementia (Liu et al., 2017); and the application of data on caregiver stress to inform the development of a multi-component framework for preventing depression in caregivers of those with dementia (Ying et al., 2017).

Background:Caring for persons with dementia (PWD) can create “caregiver burden,” which is associated with negative outcomes for caregivers and PWD. The ZBI (Zarit Burden Interview) is a widely used unitary measure of caregiver burden. However, recent research has found caregiver burden to be multi-dimensional. The purpose of this study was to explore the factor structure of the ZBI within a sample of UK caregivers. A secondary aim was to identify variables that predicted burden dimensions found.Methods:A total of 110 unpaid community caregivers of PWD completed the ZBI. They also completed the EACQ (Experiential Avoidance in Caregiving Questionnaire), DEX (Dysexecutive Questionnaire), PACS (Positive Aspects of Caregiving Scale), and a demographic questionnaire. ZBI data were analyzed via exploratory factor analysis (principal axis factoring). Relationships between burden factors and other variables were studied using Pearson correlations and multiple regression.Results:Analysis identified three burden factors, namely direct impact of caregiving, uncertainty around the future, and frustration/embarrassment. A direct impact of caregiving and frustration/embarrassment has been found previously. Uncertainty over the future is a new factor, which was predicted by adult-child caregiver role, highlighting that spouses and adult children are likely to have different burden experiences. Additionally, uncertainty over the future and frustration/embarrassment were inversely predicted by PACS, suggesting that being mindful of positive aspects of caregiving may function as a protective factor for burden.Conclusions:This study found caregiver burden to be multi-dimensional and uncovered a novel factor in uncertainty over the future, which warrants further exploration. Burden factors were associated with a range of modifiable variables that could be targeted within health and social care interventions to improve outcomes for caregivers and PWD.

Background:To estimate the impact of comorbid diabetes on caregiver stress in Alzheimer's disease (AD) patients from the Impact of Cholinergic Treatment Use (ICTUS) study.Methods:Using the Data from the ICTUS study, diabetes mellitus (DM) was recorded at baseline and caregiver burden was assessed twice per year using the Zarit Burden Interview (ZBI) scale. The three-factorial model of ZBI (the effect on the social and personal life of caregivers, the psychological burden and the feelings of guilt) was adopted. Linear mixed models were used to examine the relation between DM and the scores of ZBI.Results:The present analyses were conducted on 1,264 AD subjects. A total of 156 patients (12.3%) had DM with taking antidiabetic medication and/or self-report of a history. At baseline, the caregivers of patients with or without DM had similar ZBI global scores and similar scores of three different factors of ZBI. Unadjusted and adjusted models both indicated that ZBI global score increased over a 24-month follow-up without significant effect of DM. Similarly, unadjusted model showed that DM was not determining any significant difference in the score of any factor. However, adjusted model indicated that in diabetic patients, the scores of the social and personal life of caregivers and the psychological burden increased more slowly than those in non-diabetic patients (p = 0.04 and 0.01, respectively).Conclusions:DM may affect the caregivers’ daily social and personal life and psychological burden in AD patients. It is necessary for further research.

Background:Caregiver efficacy for managing the behavioral and psychological symptoms of dementia (BPSD) is an important determinant of family caregiver stress and burden. This study aims to develop a measure of caregiver efficacy for responding to BPSD and to evaluate its psychometric properties.Methods:The Caregiver Efficacy Scale adds an item for caregiver confidence in managing BPSD to each domain of the Neuropsychiatric Inventory (NPI). The validity, internal consistency, and factor structure of the scale were evaluated in 245 family caregivers.Results:The results provide adequate support for the validity and reliability of the Caregiver Efficacy Scale. The internal consistency was found to be adequate (Cronbach's α = 0.79) and the scale demonstrated good concurrent, construct, and criterion validity. As expected, performance on the Caregiver Efficacy Scale was associated with all dimensions of the NPI, including BPSD frequency (r = 0.869, p < 0.01) and severity (r = 0.883, p < 0.01), and negative outcomes, including negative affect (r = 0.411, p < 0.01), depression (r = 0.362, p < 0.01), anxiety (r = 0.376, p < 0.01), and distress (r = 0.865, p < 0.01).Conclusions:The Caregiver Efficacy Scale might have clinical implications in facilitating the development of improved caregiver interventions for dealing with BPSD, allowing interventions to be tailored according to individual caregiver needs, and also in evaluating the effectiveness of interventions aimed at improving caregiver self-efficacy for managing BPSD.

Background: Caring for a relative with dementia has been associated with high levels of psychological morbidity in carers. Sense of coherence is an important resource of successful coping with caregiving. The purpose of the present study was to examine the relationship between stress associated with caregiving, sense of coherence, and self-reported depression and anxiety in family carers of people with dementia. We hypothesized that carers reporting high levels of anxiety and depression will report low levels of coherence, and that the relationship between caregiver stress and affective symptoms will be mediated by sense of coherence.Methods: A total of 170 carers of people with dementia took part in the present study. Family carers completed the Sense of Coherence Scale, the Relative Stress Scale, and the Hospital Anxiety and Depression Scale. A series of multiple linear regressions were conducted to examine the relationship between stress related to caregiving, caregiver anxiety and depression, and whether sense of coherence mediated this relationship.Results: Self-reported anxiety and depression were associated with low levels of sense of coherence. Sense of coherence mediated the relationship between burden and self-reported depressive effect and anxiety symptoms.Conclusions: Carers reporting high levels of anxiety and depression are more likely to report low levels of sense of coherence. The relationship between stress related to caregiving and depressive symptoms is mediated by carers’ self-reported sense of coherence. Future psychotherapeutic intervention studies in family carers of people with dementia may incorporate strategies that specifically target sense of coherence.

Background: Although research has highlighted the importance of including cultural factors in the analysis of caregiver stress, little is known about the effects of motives for caregiving on the stress and coping process. This study is aimed at analyzing the dimensional structure of the Cultural Justifications for Caregiving Scale – Revised (CJCS-R), and the effects of motives for caregiving on stressors, caregiver resources and outcome variables.Methods: Dementia caregivers (N = 166) were interviewed and the following variables were assessed: motives for caregiving (CJCS-R), stressors (frequency of behavioral problems), resources (rumination, cognitive reappraisal), and outcomes (depression, anxiety and anger).Results: A bidimensional structure was obtained for the CJCS-R, and the two factors were labeled Intrinsic and Extrinsic motives for caregiving. Participants were divided into four groups corresponding to four motivation profiles: HIHE = High Intrinsic Motives + High Extrinsic motives; LILE = Low Intrinsic Motives + Low Extrinsic Motives; HILE = High Intrinsic Motives + Low Extrinsic Motives; and LIHE = Low Intrinsic Motives + High Extrinsic Motives. No differences between groups were found in frequency of behavioral problems. Caregivers in the LIHE group had significantly worse consequences on caregiver resources and outcome variables compared to the other groups.Conclusions: The results support the usefulness of considering motives for caregiving as a multidimensional construct. Analyzing caregivers' motivation profiles may constitute a useful strategy for identifying caregivers at risk. Caregivers scoring simultaneously low on intrinsic motives and high on extrinsic motives may be at particular risk for negative caregiving outcomes.

Background: Anxiety in persons with dementia has received little attention despite its severe consequences. In this observational cross-sectional study, we investigated the frequency of anxiety and associations between anxiety and socio-demographic and clinical variables in an outpatient sample with first-time diagnosed mild dementia.Methods: The study sample (n = 169) comprised participants recruited from clinics in geriatric medicine and old age psychiatry for a longitudinal dementia study. Symptoms of anxiety were rated by a caregiver on the Neuropsychiatric Inventory (NPI) and by the patient on the anxiety tension item on the Montgomery and Åsberg Depression Rating Scale. Measures of caregiver stress, dementia-related impairment (Clinical Dementia Rating (CDR) scale), and cognitive functioning were also included.Results: According to caregiver reports, 19.5% had clinically significant anxiety and an additional 22.5% had subclinical anxiety. Half of the patients reported experiencing anxiety from time to time. Patients with Lewy-body dementia reported anxiety more often compared to patients with Alzheimer's disease. Anxiety was associated with depression, higher caregiver stress, and more dementia-related impairment, but not with cognitive test performance. Caregiver stress and higher CDR score increased the odds for anxiety significantly, even when controlling for depression.Conclusion: Anxiety is common in patients with mild dementia, and seems to be associated not so much with cognitive test performance than with caregiver distress and the patient's ability to function in daily life. Anxiety should be taken into account when assessing dementia, as well as screened for when examining patients with known dementia.

Background: Clinicians and researchers working with dementia caregivers typically assess caregiver stress in a clinic or research center, but caregivers’ stress is rooted at home where they provide care. This study aimed to compare ratings of stress-related measures obtained in research settings and in the home using ecological momentary assessment (EMA).Methods: EMA of 18 caregivers (mean age 66.4 years ±7.8; 89% females) and 23 non-caregivers (mean age 66.4 years ±7.9; 87% females) was implemented using a personal digital assistant. Subjects rated their perceived stress, fatigue, coping with current situation, mindfulness, and situational demand once in the research center and again at 3–4 semi-random points during a day at home. The data from several assessments conducted at home were averaged for statistical analyses and compared with the data collected in the research center.Results: The testing environment had a differential effect on caregivers and non-caregivers for the ratings of perceived stress (p < 0.01) and situational demand (p = 0.01). When tested in the research center, ratings for all measures were similar between groups, but when tested at home, caregivers rated their perceived stress as higher than non-caregivers (p = 0.02). Overall, caregivers reported higher perceived stress at home than in the research center (p = 0.02), and non-caregivers reported greater situational demand in the research center than at home (p < 0.01).Conclusions: The assessment method and environment affect stress-related outcomes. Evaluating participants in their natural environment provides a more sensitive measure of stress-related outcomes. EMA provides a convenient way to gather data when evaluating dementia caregivers.

Background: Older adults with dementia commonly exhibit agitated behavior that puts them at risk of injury and institutionalization and is associated with caregiver stress. A range of theoretical approaches has produced numerous interventions to manage these behavior problems. This paper critically reviews the empirical literature on behavioral interventions to reduce agitation in older adults with dementia.Method: A literature search yielded 23 articles that met inclusion criteria. These articles described interventions that targeted wandering, disruptive vocalization, physical aggression, other agitated behaviors and a combination of these behaviors. Studies are summarized individually and then evaluated.Results: Behavioral interventions targeting agitated behavior exhibited by older adults with dementia show considerable promise. A number of methodological issues must be addressed to advance this research area. Problem areas include inconsistent use of functional assessment techniques, failure to report quantitative findings and inadequate demonstrations of experimental control.Conclusions: The reviewed studies collectively provide evidence that warrants optimism regarding the application of behavioral principles to the management of agitation among older adults with dementia. Although the results of some studies were mixed and several studies revealed methodological shortcomings, many of them offered innovations that can be used in future, more rigorously designed, intervention studies.

Background: Identification of caregiver risk factors associated with psychological elder abuse is crucial for preventing and managing such abuse. The aim of this study was to test the most effective model for explaining caregiver factors contributing to caregiver psychological abuse behavior. We hypothesized that caregiver hours worked each day, years of education, age, geriatric care-giving training, gerontological care knowledge, social resources, and self-reported work stress are factors contributing to psychological abuse behavior of caregivers.Methods: A cross-sectional study design was used. The sample included a total of 183 caregivers recruited from seven long-term care facilities in southern areas of Taiwan. Instruments included the Caregiver Psychological Elder Abuse Behavior (CPEAB) scale, the Work Stressors Inventory Chinese version (WSI-C), the Personal Resources Questionnaire (PRQ-2000), and Knowledge of Gerontological Nursing Scale (KGNS). The structural equation modeling (SEM) procedure was used to analyze the data.Results: All the model-fit indexes (χ2 = 87.84, df = 70, p = 0.073; CMIN/DF = 1.26; GFI = 0.94, AGFI =0.91, TLI = 0.96, RMSEA = 0.037) of the final model exceeded their respective common acceptance levels except for the normed fit index (NFI) value (0.88). The study results suggest that caregivers who work fewer hours, received fewer years of education, lack social resources, and had more work stress showed higher levels of psychological abuse behavior in caring for the elderly (p = 0.000–0.037).Conclusions: These findings should be incorporated into practice by intervening to reduce caregiver stress and reduce elder abuse behaviors. To help reduce elder psychological abuse, caregivers would benefit from stress management and social resource interventions provided by employers or government programs.

This intervention study compares the effectiveness of two approaches on caregiving stress reduction. Caregivers' psychobiological symptom experience and coping were profiled over time by identifying the types of stress-related symptoms most frequently experienced. Following pretesting (and selected matching procedures) using family functioning, coping, stress and mental status instruments, random assignment of caregivers was made to one of four groups: educative/didactic, psychotherapeutic/support, placebo, or control. Patients were tested at the end of eight weekly 2-hour sessions and again at 1-, 3-, 6-, and 12-month intervals after treatment. Although both the educative and psychotherapeutic groups were effective interventions for the reduction of strain, the psychotherapeutic/support group was the most effective over time, both at posttest and at the 3-month intervals. Neither group intervention was more effective than the control groups in reducing other types of stress, including anxiety, somatization, or depression. The psychobiological symptoms experienced by caregivers peaked at crisis periods in the caregiving trajectory, or when multiple demands were made of the caregiver during any one point in time.