The Psychological Impact of COVID-19 Pandemic and Lockdown on Caregivers of People With Dementia

BackgroundCaregivers of people with dementia (pwD) are at risk of depression, anxiety, and burden. COVID-19 pandemic and government-imposed lockdown as a preventive measure might increase psychological symptoms in caregivers. The authors performed a study to measure the change of psychological symptoms during quarantine or self-isolation for COVID-19 in a sample of Italian caregivers of pwD, and to investigate if the resilience is associated with psychological changes in the sample.MethodsEighty-four caregivers of pwD completed an online survey including questionnaires assessing depressive symptomatology and anxiety before and during the lockdown, caregiver burden and levels of resilience.ResultsThe multivariate analysis of variance revealed an effect of time (before and during the lockdown) in the whole group on depression scores; a significant interaction between time and resilience was found on anxiety scores, revealing that caregivers with high resilience showed a more significant increase of anxiety levels during lockdown than caregivers with low resilience. Moreover, the regression analysis revealed that caregiver burden was associated negatively with resilience scores, and positively with higher functional dependence.ConclusionCOVID-19 pandemic and the lockdown produced psychological consequences in caregivers of pwD, with an increase of levels of depression. Moreover, high resilience had a negative effect on anxiety levels and no effect on depressive symptomatology during the lockdown; moreover, it was associated with lower levels of caregiver burden. All caregivers, even those with high resilience levels, should be addressed to psychological interventions to reduce levels of depression, anxiety and caregiver burden.     

Coping strategies, anxiety and depression in caregivers of people with Alzheimer's disease

OBJECTIVES: There have been few longitudinal studies investigating the impact of coping on psychological morbidity in caregivers of people with dementia. Findings have been inconsistent and little attention has been paid to anxiety in caregivers. We explored the hypothesis that the relationship between caregiver burden and anxiety and depression is mediated by coping style. METHODS: As part of the LASER-AD study, 93 (73.8%) people with Alzheimer's disease and their family caregivers recruited at baseline were re-interviewed 1 year later. Sampling aimed to ensure that the participants were representative of people living in the UK with Alzheimer's disease in terms of dementia severity, gender and care setting. We used the Hospital Anxiety and Depression Scale, the Zarit Burden scale and the Brief COPE to measure coping strategies. RESULTS: Using fewer emotion-focused strategies and more problem-focused strategies (but not dysfunctional strategies) mediated the relationship between caregiver burden and anxiety a year later, after controlling for potential confounders, in a well-fitting structural equation model (chi(2) = 0.93, df = 3, p = 0.82; NFI = 1.0, RFI = 0.97, IFI = 1.0, TLI = 1.1, RMSEA = 0.0). Using fewer emotion focused strategies also predicted higher psychological morbidity in general. The hypothesised relationship was not proved for depression. CONCLUSIONS: Using emotion-focussed coping strategies in response to caregiver burden seemed to protect caregivers from developing higher anxiety levels a year later; however using problem-focussed strategies did not. Our results suggest that a psychological intervention package to emphasise emotion-focused coping may be a rational approach to reduce anxiety in dementia caregivers. Studies are needed to test such interventions. Copyright (c) 2008 John Wiley & Sons, Ltd.     

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.     

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.     

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.     

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.     

Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community

BACKGROUND: Despite many studies about the association between caregiver burden and behavioral and psychological symptoms of dementia (BPSD), there have been no population-based studies to evaluate caregiver burden associated with each BPSD. OBJECTIVE: To evaluate caregiver burden associated with the individual BPSD in elderly people living in the community. METHODS: The subjects were 67 participants with dementia living with their caregivers (diagnosed in the third Nakayama study): 51 Alzheimer's disease, 5 vascular dementia and 11 other. The Neuropsychiatric Inventory (NPI) and NPI Caregiver Distress Scale (NPI-D) were used to assess subjects' BPSD and related caregiver distress, respectively. RESULTS: In the subjects exhibiting BPSD, aberrant motor behavior had the highest mean NPI score, and depression/dysphoria had the lowest. Agitation/aggression had the highest mean NPI-D score, and euphoria/elation had the lowest. Delusion, agitation/aggression, apathy/indifference, irritability/lability and aberrant motor behavior showed a correlation between the NPI and NPI-D scores. CONCLUSION: The burden associated with BPSD is different for each symptom and does not always depend on frequency and severity of BPSD. These findings suggest that some symptoms, such as agitation/aggression and irritability/lability, may affect the caregivers significantly, although their frequency and severity are low.     

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.     

Predictors of complicated grief among dementia caregivers: a prospective study of bereavement.

OBJECTIVE: Most family caregivers adapt well to the death of their care recipient relative; however, a sizable minority continues to experience postdeath psychiatric morbidity. The purpose of this study was to better understand why some caregivers manifest clinical levels of complicated grief postdeath. This is the first study to prospectively assess predictors of complicated grief among family caregivers of patients with dementia who experience the death of their care recipient. METHOD: The sample of bereaved caregivers is drawn from a larger study of 1,222 family caregivers providing in-home care to their relative with dementia. In-home assessments of caregivers and patients were carried out at baseline and six-month intervals for a total of 18 months. This article is based on the 217 caregivers who experienced the death of their care recipient in the course of the study. Three logistic regression models are tested to identify pre- and postbereavement predictors of complicated grief, including sociodemographic factors, characteristics of the caregiving experience, including participation in a caregiver intervention, other psychiatric morbidities, and medication use. RESULTS: Twenty percent of dementia caregivers evidenced complicated grief along with high levels of depressive symptomatology postdeath. Controlling for sociodemographic factors, caregivers who had high levels of preloss depressive symptoms and burden, reported positive features of the caregiving experience, and were caring for a more cognitively impaired patient were more likely to report clinical levels of complicated grief postloss. In addition, caregivers who were enrolled in a psychosocial caregiver intervention designed to reduce depression and burden reported lower levels of complicated grief. CONCLUSION: This study identifies predictors of complicated grief for which interventions could be developed to not only ease caregiver distress, but also serve as preventive interventions for bereavement. Reducing the burden of active caregiving, treating depression before the death of the loved one and providing supportive psychosocial and skills training caregiver interventions can prevent the emergence of postdeath psychiatric morbidity.     

Predictors of positive and negative appraisal among Cuban American caregivers of Alzheimer's disease patients

OBJECTIVE: This study investigated predictors of positive (satisfaction) and negative (burden) appraisal among Cuban American (CA) caregivers of Alzheimer's disease (AD) patients. DESIGN: Cross-sectional study of AD patients and their family caregivers. SETTING: A university-affiliated outpatient memory disorders clinic. SUBJECTS: A convenience sample of 40 CA family caregivers of patients diagnosed with probable or possible AD according to NINCDS-ADRDA diagnostic criteria. MEASURES: AD patients: Mini-Mental State Examination (MMSE), Blessed Dementia Scale (BDS) and the Behavioral Pathology in Alzheimer's Disease Rating Scale (BEHAVE-AD). Caregivers: Caregiving Burden Scale (CBS), Caregiving Satisfaction Scale (CSS), Perceived Emotional Support scale (PES) and the Short Form-36 Health Survey-General Health Index (GH). RESULTS: Appraised burden was predicted by increased patient behavioral pathology, female caregiver gender and lower levels of perceived emotional support. The association between older caregiver age and increased burden approached significance. Older caregiver age and higher levels of perceived social support were shown to predict appraised satisfaction. Post-hoc analyses also indicated that length of residence in the United States, a measure of acculturation, was not associated with positive or negative appraisal. CONCLUSION: Appraised burden and satisfaction represent important outcomes of dementia care that show relations with distinct factors among CA caregivers. It is clear that further research is warranted in order to ascertain the relationship of ethnicity or culture to the process and psychological consequences of dementia caregiving. Continued investigations into predictors of caregiving satisfaction are also recommended.     

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.     

Psychological Burden in Stroke Survivors and Caregivers Dyads at the Rehabilitation Center of Kinshasa (Democratic Republic of Congo): A Cross-Sectional Study

IntroductionStroke is a major cause of burden which can lead to anxiety and depressive disorders in stroke patients and their caregivers. This study aimed to assess the burden of depression and anxiety and covariates as well as its association with functional disability level among stroke survivors and caregivers dyads.MethodsThis cross-sectional study assessed for anxiety and depressive symptoms, and perceived burden among survivors of stroke and their caregivers in the rehabilitation center of Kinshasa; using the Hospital Anxiety and Depression Scale to identify participants with anxiety and depression; the Zarit Burden Inventory to assess the burden of depression and anxiety; and the modified Rankin scale used to assess functional outcome or level of disability.ResultsEight in ten caregivers of stroke survivors perceived the burden, which took more expression of depression than anxiety, whereas three in ten stroke survivors had a burden expressed by symptoms consistent with depressive and anxiety disorders. Being married increases the risk of perceiving the burden among stroke survivors. We found a positive association between high level of burden and depression and anxiety among caretakers of stroke survivors. Moreover, our findings did not reveal a statistical association between the burden and level of dependence evaluated based on the severity of disability.ConclusionsThe psychological burden is higher among caregivers than stroke survivors. Specialized programs targeted the psychological distress, its association with anxiety and depressive symptoms; and the functional disability level of stroke survivors should be integrated into the rehabilitation center of patients with disabled illnesses. Our findings warrant further studies to test the impact of reducing psychological burden on functional disability.     

Family caregivers of people with dementia

Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer''s Associations, and psychosocial interventions where indicated.     

Predictors of burden and depression among nursing home family caregivers

This study identified predictors of caregiver burden and depression among family caregivers to nursing home residents. Pearlin's stress process model was used as a theoretical framework. Structured interviews were conducted with 103 family caregivers to nursing home residents. Multiple regression analysis was used to determine the relationship of contextual variables (caregiver age, income, health), caregiving stressors (resident's memory and behaviour problems, caregiving tasks, satisfaction with nursing home), and social support with caregiver burden and depression. All three domains of predictor variables were significantly related to caregiver burden. Only contextual factors and social support predicted depression. Depression levels were elevated in this sample, with the mean falling above the cutoff for clinical depression. Family members of nursing home residents are at risk for caregiver burden and depression and each outcome has unique predictors in this population. Understanding factors associated with greater burden and depression can guide nursing home staff and mental health professionals in working with family members. Older family members, those in poor physical health or with low incomes are at highest risk, particularly for depression; while families of more impaired residents are at higher risk for burden. Social support is an important factor in alleviating burden and promoting positive mental health.     

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.     

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.     

A multinational review of recent trends and reports in dementia caregiver burden

This systematic review of the literature focuses on the influence of ethnic, cultural, and geographic factors on the caregivers of patients with dementia. In particular, we explore the impact of cultural expectations on five important questions: 1) Do the characteristics of dementia affect caregiver burden? 2) Do characteristics of the caregiver independently predict burden? 3) Does the caregiver affect patient outcomes? 4) Does support or intervention for caregiver result in reduced caregiver burden or improved patient outcomes? 5) Finally, do patient interventions result in reduced caregiver burden or improved patient outcomes? Our findings suggest that noncognitive, behavioral disturbances of patients with dementia result in increased caregiver burden and that female caregivers bear a particularly heavy burden across cultures, particularly in Asian societies. Caregiver burden influences time to medical presentation of patients with dementia, patient condition at presentation, and patient institutionalization. Moreover, interventions designed to reduce caregiver burden have been largely, although not universally, unsuccessful. Pharmacological treatments for symptoms of dementia were found to be beneficial in reducing caregiver burden. The consistency of findings across studies, geographic regions, cultural differences, and heathcare delivery systems is striking. Yet, there are critical differences in cultural expectations and social resources. Future interventions to reduce caregiver burden must consider these differences, identify patients and caregivers at greatest risk, and develop targeted programs that combine aspects of a number of interventional strategies.     

What explains differences between dementia patients' and their caregivers' ratings of patients' quality of life?

OBJECTIVE: The authors assessed the magnitude of discrepancy between patients' and caregivers' ratings of the patients' quality of life and sought to determine whether the discrepancies are associated with patient characteristics, caregiver characteristics, or the type of relationship between the patient and caregiver. METHODS: A sample of 91 patients with mild-to-moderately severe dementia and their primary family caregiver rated five domains of the patients' subjective quality of life. RESULTS: Agreement between patients and caregivers was low. Caregivers rated patients' quality of life lower than patients rated their own in all five domains. Discrepancies between patients' and caregivers' ratings were not associated with the patients' cognitive performance, level of functioning, nor caregivers' reports of aggressive, attention-seeking, or sexually inappropriate behaviors, nor whether the caregiver lived with or was married to the patient. However, discrepancies were associated with level of caregiver burden and the patients' report of depressive symptoms. Patients with depression reported low quality of life, which matched caregivers' low rating of patients' quality of life. Caregivers who reported higher levels of burden rated patients' quality of life lower than did patients in all five domains of quality of life. CONCLUSIONS: Discrepancies between dementia patients' and their caregivers' ratings of the patients' quality of life are associated with increased levels of caregiver burden, rather than lower levels of patients' functioning. The results of this study support the direct assessment of mild-to-moderate dementia patients about their subjective quality of life.