Sleep disturbances in caregivers of persons with dementia: contributing factors and treatment implications

Estimates suggest that there are more than 10 million adult caregivers of persons with dementia, two-thirds of who experience some form of sleep disturbance during the course of their caregiving career. Health care professionals are in the best position to detect and address this significant public health problem. Three major contributors to caregiver sleep disturbance are discussed in this paper: (1) the presence of caregiver disrupted sleep routines; (2) caregiver burden and depression; and, (3) the caregiver's physical health status. Successful treatment of a caregiver's sleep disturbance requires careful consideration of each of these contributors. We review and analyze the scientific literature concerning the multiple complex factors associated with the development and maintenance of sleep disturbances in caregivers. We provide a clinical vignette that illustrates the interplay of these contributing factors, and close by providing recommendations for clinicians and researchers treating and investigating the development and maintenance of sleep problems in family caregivers.     

A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia

BACKGROUND: Caregiving for people with dementia has consistently been linked with psychological problems, usually in terms of caregiver burden, general psychological distress and depressive symptomatology, while morbidity due to anxiety has been relatively neglected in this group. METHODS: We conducted a systematic review of the literature, searching electronic databases, reference lists, relevant systematic reviews and contacting experts in the field. We used Centre for Evidence Based Medicine (CEBM) criteria for inclusion and rating the validity of all studies that reported (1) the prevalence, predictors and covariates of anxiety disorders or anxiety caseness, and (2) covariates and predictors of the level of anxiety symptoms. RESULTS: Thirty-three studies met our inclusion criteria. Clinically, significant anxiety affects about a quarter of caregivers for people with dementia and was more common than in matched controls. Such caregivers have higher anxiety levels than controls, and that confrontative and escape avoidance coping, caregiver burden and poorer caregiver physical health are factors associated with higher anxiety levels from cross-sectional studies. CONCLUSIONS: Coping style may be more associated with anxiety than depression while other covariates (burden and poor physical health) are similar to those for caregiver depression. We found no conclusive evidence about factors associated with anxiety disorders or predicting anxiety from longitudinal studies. Neither care recipient cognition nor ADL impairment; nor caregiver age nor duration of caring are associated with caregiver anxiety levels. Good quality cohort studies are needed to determine whether these factors also predict anxiety disorders.     

Caregiver attribution and resentment in dementia care

The caregivers of 37 patients with a dementing illness completed rating scales regarding the frequency and severity of their care recipient's general behavioral disturbance and manipulative behaviors, as well as their own resentment and depression. Caregivers were randomized to a four-week psychoeducational group intervention or control group to investigate the effect of dementia caregiving education on the caregiving experience. Findings indicated that, while care recipient behavioral disturbance was correlated with caregiver resentment and depression, the primary relationship was between behaviors perceived by the caregiver as manipulative or willful and caregiver resentment and depression. We found no significant differences in caregiver attribution, resentment, or depression between the caregivers who participated in the group session and those in the control group. The study supports the existence of resentment among dementia caregivers, and an important relationship between caregiving outcomes and attributions made by caregivers regarding their care recipients' actions. These results are discussed in relation to existing research on caregiver distress and intervention.     

Sleep disturbances in spousal caregivers of individuals with Alzheimer's disease

BACKGROUND: Although sleep problems are commonly reported among dementia caregivers, the nature and frequency of caregiver sleep disruptions, and their relationship to health status, has received little empirical attention to date. METHODS: The current study investigated the sleep situations of a sample of 60 spousal caregivers currently residing with a Alzheimer disease care recipient, including the frequency of nocturnal disruptions by the care recipient, and the reasons for these disruptions. In addition, exploratory correlations were computed between caregiver sleep variables and health outcomes. RESULTS: Some 63% of spousal caregivers reported sleep disruptions due to the nocturnal behavior of the recipients of their care. Poorer caregiver sleep quality was associated with higher frequency of nocturnal disruptions by the care recipient, the care recipient needing to use the bathroom, and wandering, higher caregiver depressive symptoms, and higher levels of caregiver role burden. The frequency of nocturnal disruptions was associated with poorer mental health status and a greater number of depressive symptoms. CONCLUSIONS: Results suggest that nocturnal disruptions by the care recipient may have adverse health consequences for spousal caregivers, and that further study of the determinants of caregiver sleep quality and health outcomes are warranted.     

Psychosocial predictors of dementia caregiver desire to institutionalize: caregiver, care recipient, and family relationship factors

Several factors influence dementia caregiver desire to institutionalize; however, little is known about differences in caregivers who desire institutionalization versus those who do not. The current study compares predictors of desire to institutionalize in dementia caregivers. Seventy-two caregivers completed the Desire to Institutionalize Scale (DIS) and several psychosocial measures, including burden, dementia knowledge, self-efficacy, depression, health, care recipient daily functioning and memory/behavior problems, family functioning, and social support. Based on DIS responses, caregivers were divided into No DI versus DI groups. DI caregivers had significantly higher burden, greater dementia knowledge, more family dysfunction, and decreased social support compared with No DI caregivers. Findings emphasize the importance of caregiver and family relationship variables in DIS, suggesting potentially modifiable targets for caregiver interventions. Dementia knowledge was associated with higher DIS, suggesting that educational programs alone may not be helpful to delay institutionalization.     

Unique contribution of family functioning in caregivers of patients with mild to moderate dementia

The relationship between family functioning and dementia caregiving is complex. The present study examined the interrelationships between family functioning, caregiver burden, and patient characteristics. Participants were 72 live-in, family caregivers of patients with mild (n = 47) or moderate dementia (n = 25). Caregivers completed measures of burden, family functioning, depression, and anxiety. Ratings of patients' memory/behavior problems and patients' activities of daily living were also collected. Results indicated that higher levels of caregiver burden were significantly associated with increased caregiver depression and anxiety, greater frequency of memory and behavior problems in the dementia patient, worse activities of daily living, and poorer family functioning. Even after controlling for caregiver depression, caregiver anxiety, and frequency of memory/behavior problems in dementia patients, poorer family functioning continued to be associated with higher levels of caregiver burden. Caregivers with high levels of burden reported greater family dysfunction in communication and roles, regardless of their relationship to the patient (i.e., spouse or child). These findings suggest that including a family systems component in caregiver interventions may be beneficial in reducing burden in these very distressed individuals.     

Use of mental health and primary care services by caregivers of patients with bipolar disorder: a preliminary study

OBJECTIVES: Caring for a relative with schizophrenia or dementia has been associated with reports of caregiver burden, symptoms of anxiety, depression, poor self-rated health, and elevated health service use; however, comparable data for caregivers of relatives with bipolar disorder are lacking. This study reports preliminary data on the health, psychological distress and health service use of caregivers of patients with bipolar disorder. It additionally evaluates the relationship of the level of burden caregivers report experiencing to their use of health services, controlling for level of psychological distress and health status. METHODS: Subjects were primary caregivers of 264 patients with Research Diagnostic Criteria-diagnosed bipolar disorder and their bipolar relatives. Caregiver mental health and primary care service use were assessed retrospectively for the 7-month period prior to inpatient or outpatient admission of the bipolar patient. Caregiver depression, anxiety, medical conditions and patient symptomatology were assessed as well. RESULTS: Hierarchical logistic regression analysis demonstrated that caregiver burden significantly increased the likelihood of mental health service use (OR = 13.53, p < 0.001) even after controlling for caregiver psychological distress and medical conditions, while anxiety and depression level, but not burden, significantly increased the likelihood of primary care service use, controlling for other variables (OR = 1.72, p = 0.02). CONCLUSIONS: Burdens experienced by family caregivers appear to increase use of health services, and presumably cost, and may be reduced by psychosocial intervention.     

The problem with "problem behaviors": a systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient-caregiver dyad

ABSTRACT Background: Behavioral and psychological symptoms of dementia (BPSDs) are routinely cited as important predictors of caregiver burden and depression. Although BPSDs include a wide variety of patient behaviors, they are routinely grouped together as one construct to differentiate them from cognitive symptoms of dementia. Determining the specific BPSDs that result in increased depression and burden for caregivers may elucidate the stress process for caregivers and facilitate the development of effective interventions for caregivers. Methods: We conducted a systematic review of English-language articles published from 1990 to 2010 to determine whether there are known symptoms or symptom clusters which exert undue negative impact on caregiver depression and burden. Additionally, we review systems used for classifying BSPD symptom clusters and determine whether there have been any mechanisms studied by which individual BPSD symptoms negatively affect caregivers. Finally, we examine how the role of timing of symptoms has been examined within the literature. Results: Thirty-five original research articles examined the impact of an individual behavior symptom on caregiver burden or depression/depressive symptoms. The studies had no consistent system for categorizing symptoms. Although depression, aggression, and sleep disturbances were the most frequently identified patient symptoms to impact negatively on caregivers, a wide range of symptoms was associated with caregiver burden and depression. Conclusions: The evidence is not conclusive as to whether some symptoms are more important than others. The studies reviewed were largely exploratory relative to the differential impact of individual BPSDs and did not focus on testing causal mechanisms by which specific symptoms exert more impact on caregiver mental health than others. Future research may benefit from the re-conceptualization of BPSDs from the perspective of their impact on the caregiver to examine hypothesis-driven differences among BPSD symptom clusters.     

Caregiving burden and psychiatric morbidity in spouses of persons with mild cognitive impairment

BACKGROUND: While the deleterious psychosocial and mental health effects of dementia caregiving are firmly established, very little is known about the burdens or psychiatric outcomes of providing care to a spouse with less severe cognitive impairment, such as mild cognitive impairment (MCI). We characterized the nature and level of caregiver burden and psychiatric morbidity in spouses of persons diagnosed with MCI. METHODS: Interview assessments were completed on a cohort of 27 spouses of persons with a recent diagnosis of MCI. Patient medical records were reviewed to collect information regarding the MCI patient's medical history. RESULTS: Respondents endorsed elevated levels of both task-related responsibilities and subjective caregiver burden. Depression and anxiety symptom levels also showed some elevations. Measures of caregiver burden were significantly associated with depression and anxiety levels. In particular, even after controlling for demographic risk factors for distress, nursing task burden was correlated with elevated depressive symptoms, and greater lifestyle constraints were correlated with higher anxiety levels. CONCLUSIONS: Although caregiver burden and psychiatric morbidity levels were lower than those typically observed in family dementia caregiving samples, our findings suggest that MCI caregivers have already begun to experience distress in association with elevated caregiving burden. These individuals may be ideal targets for selective preventive interventions to maximize their psychological well-being as caregiving burdens related to their spouses' cognitive impairment increase.     

Premorbid relationship satisfaction and caregiver burden in dementia caregivers

Dementia caregiver appraisal of the quality of their current and premorbid relationship with the care recipient is associated with caregiving behaviors, caregiver mood, and the decision to end home care. This study examined the contribution of premorbid relationship satisfaction to caregiver burden in dementia caregivers. Live-in dementia caregivers (n = 72) completed several psychosocial measures. Caregiver responses were used to divide them into low premorbid relationship satisfaction group (low) versus high premorbid relationship satisfaction group (high). Results indicate that premorbid relationship satisfaction is negatively associated with caregiver burden and quality of family functioning. Caregivers with high satisfaction demonstrated significantly less burden and less reactivity to memory and behavior problems, and better problem solving skills and more effective communication compared with the low caregivers. Findings are independent of length of caregiving, disease severity, care recipient daily functioning, and relationship type. Relationship satisfaction may be an important contributor to caregiver burden.     

Gender differences in burden and depression among informal caregivers of demented elders in the community

BACKGROUND: Earlier studies have yielded inconsistent findings regarding gender differences with respect to burden and depression among informal community caregivers of dementia patients. OBJECTIVES: The aim of the study was to determine whether or not there were gender differences in the prevalence of burden and depression among informal caregivers of community-residing dementia patients. METHODS: Data from 259 female and 68 male caregivers who were part of the Canadian Study of Health and Aging were analyzed. Depressive symptoms were measured using the Center for Epidemiologic Studies--Depression Scale (CES-D). Burden was assessed using Zarit's Burden Interview. Associations between the outcome variables (depressive symtoms and burden) and the independent variable, gender, were examined using logistic regression. RESULTS: In multivariable analysis, female caregivers were found to have significantly higher odds than male caregivers of having a score of 33 or higher on Zarit's Burden Interview (OR=2.6; 95% CI 1.0, 6.7). The OR comparing women to men with respect to a high level of depressive symptoms (defined as a score of 16 or more on the CES-D) was not significant (OR=1.3; 95% CI 0.6, 2.9). Poor perceived caregivers health and more behavior disturbance in the patient were associated with significantly higher odds of high levels of caregiver burden and depression. CONCLUSIONS: Adequate assistance must be given to women caregivers to ensure that they are not strained beyond what is clinically healthy. In addition, interventions should target caregivers of behaviorally disturbed patients as well as caregivers who report poor physical health to reduce the negative psychological impact of caregiving.     

Assessing the impact of neuropsychiatric symptoms on distress in professional caregivers

Caregiver burden has been studied extensively in family caregivers of Alzheimer's patients. Behavioral disturbances have been widely reported to be a source of distress and burden for family caregivers. However, the study of the effects of behavioral disturbance on distress for professional caregivers in long-term care facilities has been relatively ignored. This study was conducted to evaluate the effects of neuropsychiatric symptoms among patients with dementia on distress in nursing home caregivers. One hundred and five professional caregiver interviews were done in order to assess distress related to the frequency and severity of neuropsychiatric symptoms in one 125-bed proprietary nursing home staffed according to industry standards. Twelve licensed vocational nurses (LVNs) and 12 certified nurses aids (CNAs) were interviewed regarding 69 nursing home residents using the Neuropsychiatric Inventory-Nursing Home Version (NPI-NH). Agitation and apathy were found to be the two most distressing behaviors for both the LVNs and CNAs, but while the level of distress for the LVNs approaches that reported by family members in other published research, the CNAs report very little overall distress. In summary, professional caregiver distress appears to be a significant problem in LVN caregivers in long-term care settings.     

Primary stressors and depressive symptoms in caregivers of dementia patients

Pearlin et al . (1990) propose a model for examining the wellbeing of caregivers of dementia patients. The present paper focuses on one part of this model, examining the relationship between primary stressors and mental health, particularly depression, in a cross-sectional sample of 91 caregivers of dementia patients. The primary stressors examined are: patient cognitive status, objective burden, subjective burden and generalized perceived stress. Linear and non-linear relationships between patient cognitive status and caregiver depression were considered. Some evidence was found for a non-linear relationship between patient cognitive status and caregiver depression, but only the interaction between subjective caregiving burden and generalized perceived stress was found to significantly predict caregiver depression when all variables were considered. Implications for including global as well as caregiver-specific measures of subjective burden in models of caregiver wellbeing are discussed.     

Emotional distress and quality of life in caregivers of patients awaiting lung transplant

OBJECTIVE: The aims of this study are to characterize the levels of emotional distress and quality of life among caregivers of lung transplant candidates and to examine the relation of coping styles and perceived caregiver burden to caregivers' self-reported emotional distress. METHODS: A consecutive series of primary caregivers of potential lung transplant candidates completed a battery of psychosocial measures, including the Beck Depression Inventory-II (BDI-II), State-Trait Anxiety Inventory, Medical Coping Modes Questionnaire (MCMQ), Scale for Caregiver Burden (SCB), and Medical Outcomes Survey, Short Form-36 (SF-36). RESULTS: Only 12 of the 82 caregivers (14.6%) who volunteered for the study reported clinically significant levels of depression (BDI-II > or =14), and only 2 caregivers (2.4%) reported clinically significant levels of anxiety (STAI > or =60). Passive coping strategies were associated with higher levels of emotional distress; specifically, resignation was associated with increased depression (r=.27, P<.04), while avoidance was associated with increased anxiety (r=.29, P<.04). In addition, caregivers who reported greater perceived caregiver burden experienced higher levels of depression (r=.45, P<.001) and anxiety (r=.43, P<.01). Moreover, the social functioning of caregivers of lung transplant patients was more than one standard deviation from a normative sample of the population (Cohen's d=1.16), indicating that caregivers of transplant patients experienced greater impairment in this area. DISCUSSION: Although most caregivers of transplant patients do not report significant impairment in functioning, assessing caregivers' coping strategies and caregiving burden may identify those caregivers who experience increased emotional distress.     

The impact of neuropsychiatric symptoms of dementia on distress in family and professional caregivers in Singapore

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) are a source of distress and burden for caregivers. This study attempts to determine the neuropsychiatric symptoms, demographic characteristics, and referral patterns of outpatients with dementia compared with patients admitted to the acute psychogeriatric wards of Woodbridge Hospital. We also assessed the impact of neuropsychiatric symptoms on distress in family and professional caregivers. METHOD: Eighty-five consecutive patients with a first-time diagnosis of dementia were recruited. They were assessed using the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D). The professional caregiver distress questions were rephrased to assess the "occupational disruptiveness" of behaviors in the nursing home version (NPI-NH). RESULTS: Neuropsychiatric symptoms were common and were positively correlated with caregiver distress. Family caregivers were significantly more distressed than professional caregivers over the delusion, agitation, depression and aberrant motor domains, although the severity of the behavioral disturbances reported was not higher in the sample. The median NPI scores for the agitation and disinhibition domains were significantly higher in the inpatient group, contrasting with a higher score for the depression domain among the outpatient group. CONCLUSIONS: This study highlights the prevalence of neuropsychiatric symptoms in dementia and illustrates the strong correlation between the severity of behavioral disturbances and caregiver distress.     

Parental caregivers of children with developmental disabilities mount a poor antibody response to pneumococcal vaccination

In older populations, caregiving for a spouse with dementia has been associated with a poor antibody response to vaccination. The present study examined whether younger caregivers, specifically the parents of children with developmental disabilities, would also show a diminished antibody response to vaccination. At baseline assessment, 30 parents of children with developmental disabilities and 29 parents of typically developing children completed standard measures of depression, perceived stress, social support, caregiver burden, and child problem behaviours. They also provided a blood sample and were then vaccinated with a pneumococcal polysaccharide vaccine. Further blood samples were taken at 1- and 6-month follow-ups. Caregivers mounted a poorer antibody response to vaccination than control parents at both follow-ups. This effect withstood adjustment for a number of possible confounders and appeared to be, at least in part, mediated by child problem behaviours. The negative impact of caregiving on antibody response to vaccination is not restricted to older spousal caregivers, but is also evident in younger parents caring for children with developmental disabilities. The behavioural characteristics of the care recipients may be a key consideration in whether or not immunity is compromised in this context.     

Hispanic caregivers of adults with mental retardation: importance of family functioning

Our aim in this study was to validate a stress-process model for Hispanic caregivers of adults with mental retardation that incorporates family functioning. The model postulates that maladaptive adult behaviors are related to poorer family relationships and higher levels of family burden, which in turn is related to caregiver psychological distress and self-reported health. The 153 Hispanic caregivers were interviewed in their homes with structured interviews and self-report measures. We analyzed cross-sectional data using structural equation modeling. The hypothesized model provided an excellent fit to the data. Also, family relationships mediated the relationship between maladaptive adult behaviors and family burden, and higher levels of family burden were related to greater caregiver distress. Acculturation was negatively related to caregiver distress.     

Impact of frontal systems behavioral functioning in dementia on caregiver burden

Behavioral problems in the dementia patient are some of the strongest predictors of caregiver burden, though the impact of specific types of behavioral problems on burden is limited. This study investigated the contribution of frontal systems behavioral functioning (i.e., apathy, executive dysfunction, and disinhibition) on caregiver burden. Seventy-two family caregivers completed the Frontal Systems Behavior Scale and measures of mood, perceived burden, and patient ratings of functional impairment. Regression analyses indicated that frontal systems behavioral problems were predictive of caregiver burden after controlling for dementia severity and caregiver depression. Analyses of subscales revealed that executive dysfunction and disinhibition were predictors of caregiver burden. Results argue for including strategies for managing frontal systems behavioral problems, particularly executive dysfunction and disinhibition, in dementia caregiver interventions.     

Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study

BACKGROUND: Considerable suffering is experienced by carers of patients with dementia. Most existing studies do not consider the coexistence of subjective and objective aspects that cause, interacting to each other, this suffering. OBJECTIVES: In this study we: (1) define the high-risk group of caregivers on the bases of the scores obtained on the four scales evaluating burden, distress, depression and anxiety (BDDA) taken into account simultaneously and (2) evaluate risk factors related to the high level of BDDA. SUBJECTS AND METHODS: 419 elderly outpatients with dementia and their caregivers were enrolled. Patients were evaluated for their cognitive, neuropsychological and functional impairment and for comorbidity. Caregivers were evaluated with four scales for the assessment of burden, distress related to neuropsychological disturbances, depression and anxiety. Cluster analysis was used to identify the group with the High level of BDDA (HBDDA). RESULTS: By multiple logistic analysis, disability, specific behavioural disturbances of the patients as well as caregiver's age, type of relationship and living in the south of Italy were observed to be a major risk factor for HBDDA. CONCLUSION: The targeted use of scales specifically assessing BDDA of the caregiver and the identification of particular patient and caregiver characteristics are able to allow a precise and early definition of caregivers at high risk of burden and distress. This might be helpful in planning the correct social/clinical/rehabilitative approach.     

Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study.

OBJECTIVE: There are high rates of stress, distress, and psychological illness in family caregivers of people with dementia. Female caregivers and those caring for people with neuropsychiatric symptoms are particularly at risk. The authors report on the prevalence of anxiety and depression in a sample of family caregivers of people with Alzheimer disease (AD) and compare the characteristics of those who did or did not have those conditions. METHODS: A group of 153 people with AD and their caregivers were interviewed as part of a larger study of AD. RESULTS: In all, 23.5% of caregivers scored at or above caseness level for anxiety, and 10.5%, at levels for depression. Care-recipient (CR) activities of daily living (ADL) impairment, being a caregiver living with the CR, being a female caregiver, reporting a poorer quality of relationship with the CR, and caregivers reporting their health as being poor all predicted anxiety disorder. CR irritability, caregivers reporting poor health, and a poorer quality of relationship with the CR predicted depression. CONCLUSIONS: Clinicians should be aware of the high rates of anxiety as well as depressive symptoms in family caregivers of people with AD, especially in female caregivers. CRs and Caregivers' impaired physical health put them at risk for psychological morbidity and should be treated energetically. A poor-quality relationship between the caregiver and the CR predicts both caregiver depression and anxiety. Caregivers living with the CR are much more likely to be anxious than depressed.