Clinical findings, functional abilities and caregiver distress in the early stage of dementia with Lewy bodies (DLB) and Alzheimer's disease (AD)

Few studies have compared neuropsychiatric disorders and functional abilities in the early stage of DLB and AD and their influence on caregiver distress. The aim of this study is to assess neuropsychiatric disorders, functional abilities and caregiver distress in DLB and in AD subjects. Sixteen subjects affected by probable DLB and 12 subjects affected by probable AD were enrolled. All subjects underwent a wide neuropsychological examination. Caregiver's distress was also assessed. Subjects affected by DLB performed better in long-term memory tests, whereas AD subjects performed better in attentive and executive function tests. The Neuropsychiatric Inventory (NPI) total score was significantly higher in DLB subjects than in AD subjects. Furthermore, DLB subjects scored worse than AD subjects in both Activities of Daily Living scale (ADL) and Instrumental Activities of Daily Living scale (IADL) scales. Overall caregiver distress was higher in DLB than in AD subjects. High distress was observed in DLB caregivers alone and was caused by delusion, hallucinations, anxiety and apathy. DLB subjects have a different neuropsychological profile, more psychiatric symptoms and more serious functional deficits than AD subjects in the early cognitive decline, furthermore DLB caregivers are more stressed than AD caregivers.     

Correlates of depression and burden for informal caregivers of patients in a geriatrics referral clinic

Caregiver burden has been associated with patient dementia. In this study we tested the hypothesis that caregiver burden and depression are related to patient cognitive impairment. We analyzed records of 127 elderly male patients from a Veterans hospital geriatrics referral clinic. The patients and their informal caregivers had been referred to the clinic because the complexity and multiplicity of their problems were beyond the treatment capability of other clinics. There was a high prevalence of dementia (73%) and depression (69%) in these patients according to Diagnostic and Statistical Manual (DSM-III) criteria. Quantitative measures of patient dementia and dependency in activities of daily living were not statistically associated with measures of caregiver depression or burden. In contrast, measures of patient depression were significantly correlated with measures of caregiver depression and burden. We hypothesize that caregivers of chronically ill, elderly men cope better with physical and cognitive incapacity than with affective symptoms. Because caregiver support is the most important factor in maintaining a disabled elder in the community, we suggest evaluating patients and caregivers for depression as part of standard practice in geriatric clinical settings.     

Family caregiver burden caused by behavioral and psychological symptoms of dementia: measurement with a new original scale

AIM: The purpose of this study was to measure the caregiver burden caused by behavioral and psychological symptoms of dementia (CBBD) using an originally developed scale and to estimate the CBBD scores in a large sample of family caregivers of elderly people. METHODS: The subjects were 1,818 users of the public Long-term Care Insurance, randomly stratified and sampled in Higashi-osaka city, Osaka prefecture. Data were collected through mailed, anonymous self-report questionnaires. The survey was conducted in October 2003. We created a 10-item CBBD scale based on previous studies on caregivers of dementia. The CBBD scale was applied to all caregivers regardless of dementia symptoms, and we also collected the following information: demographic data of the care-recipients and caregivers, the level of cognitive disorders of the care-recipient and the overall subjective caregiver burden. RESULTS: All items of the CBBD scale were selected at higher percentages by caregivers of care-recipients with cognitive disorders than caregivers of care-recipients without cognitive disorders. In particular, the relative risk and odds ratio of caregivers of care-recipients with cognitive disorder was higher in items such as 'the caregiver feels fear and anxiety about the care-recipient's unpredictable behavior', 'the care-recipient doesn't understand what the caregiver says', 'the caregiver feels irritated with incomprehensible care-recipient's behavior' which pose psychological stress or pressure on caregivers. On the other hand, the relative risk and odds ratio of the overall subjective caregiver burden was lower than that of any item of the CBBD scale. Furthermore, all CBBD items were related to symptoms of dementia (aroused/paranoid behavior, memory disorder, cognitive dysfunction, pica behavior). CONCLUSION: The CBBD scale had sensitivity for the care-recipient's cognitive disorder. In addition, it can detect more precisely the caregiver burden such as psychological stress or pressure due to the care-recipient's cognitive disorders, and it is also useful to assess the needs of caregivers who care for elderly family members with dementia.     

The Effects of Declining Functional Abilities in Dementia Patients and Increases in Psychological Distress on Caregiver Burden Over a One-Year Period

The degree to which changes in caregiver burden over a one-year period can be predicted by functioning of dementia patients and caregiver psychological stress was examined. The Direct Assessment of Functional Status (DAFS) was administered to 44 patients and the Caregiver Burden Inventory and the Brief Symptom Inventory were administered to their next-of-kin caregivers. All patients and caregivers were assessed at baseline and again in approximately one year with the same measures. Hierarchical regression revealed that baseline patient functioning predicted overall changes in caregiver burden, but that increases in psychological symptoms of caregivers such as depression, anxiety, and hostility were the best predictors for specific types of increased caregiver burden, such as social, developmental, or physical burden. These results suggest that interventions should target reduction of particular psychological symptoms in order to reduce caregiver burden over time.     

Anxiety of Alzheimer's disease: prevalence, and comorbidity.

BACKGROUND: Anxiety may be associated with psychiatric morbidity, disability, increased health care utilization, and mortality in Alzheimer's disease (AD) patients as it is in the general adult population. However, the phenomenology of anxiety symptoms in AD and its relationship to dementia progression, comorbid depression, and the presence of other problematic behaviors have not yet been examined. METHOD: Data on anxiety symptoms and their coexistence with other factors were obtained in 523 community-dwelling AD patients through interviews with their caregivers and direct physical examination. The prevalence of anxiety symptoms and their association to patient depression, other behavioral problems, gender, and age was investigated. RESULTS: Anxiety symptoms were common, occurring in 70% of subjects. Anxiety symptoms were significantly correlated with ADL impairment and other behavioral disturbances, including wandering, sexual misconduct, hallucinations, verbal threats, and physical abuse. Comorbidity of anxiety-depression was also prevalent: 54% of the sample had both anxiety and depression symptoms. ADL impairment and problem behaviors were significantly associated with comorbidity; however, the latter association was explained entirely by the presence of anxiety. CONCLUSION: Anxiety symptoms were common and significantly related to ADL and additional neuropsychiatric problems in this sample. These results indicate the need for additional research into the phenomenology of anxiety and comorbid anxiety-depression in AD and for the development and investigation of effective assessment and treatment of anxiety in AD clinical practice.     

Effects of an exercise intervention for older heart failure patients on caregiver burden and emotional distress.

BACKGROUND: The impact of exercise programmes for heart failure on those close to the patient is largely unknown. We examined the effect of a hospital and home-based exercise intervention on burden, anxiety and depression of informal caregivers. DESIGN: The study was a randomized, controlled trial. Heart failure patients were randomized to a seated 12-week hospital-based exercise programme. Caregiver measures were gathered at baseline, 3 months later and 6 months following baseline. METHODS: Sixty caregivers (mean age 63.4 years, 65% female) of heart failure patients (n = 82, mean age 80.5 years, 44% female) participating in a trial of an exercise intervention were recruited. Caregiver burden, anxiety and depression were assessed. RESULTS: There were no differences in caregiver burden, depression or anxiety between the two groups of caregivers at baseline (caregiver burden, patient control 33.1 versus patient exercise 34.1; anxiety 4.1 versus 5.5; depression 2.8 versus 3.8). At 3 months there were no differences between caregivers in the two groups on outcomes. At 6-month follow-up caregivers of heart failure patients in the exercise group had burden scores that were significantly worse than the control group. There were no differences between the carers of exercise and control groups in anxiety and depression. Levels of anxiety and depression in the entire carer sample were marginally higher than reference values in a healthy non-clinical sample. CONCLUSION: The present exercise interventions for frail older patients did not benefit caregivers and was associated with an increase in caregiver burden. We suggest that future exercise interventions for heart failure patients should actively incorporate informal caregivers into research designs.     

Behavioral and psychological symptoms in dementia with Lewy-bodies (DLB): frequency and relationship with disease severity and motor impairment

Clinical criteria for DLB have been more and more accurate over time, and they had focused on psychotic symptoms for their high frequency. Recent literature suggests that behavioral and psychological symptoms of dementia (BPSD) are frequently associated with DLB, beyond the presence of psychosis. Notwithstanding, the occurrence of BPSD in DLB is under-investigated, and no data are available yet in the different stages. Aim of the present study was to evaluate BPSD pattern in the different stages of DLB, and characterize the relationship with both cognitive deficits and Parkinsonian signs. Ninety-two DLB patients were enrolled and were divided into mild (n=63, 68.5%) and moderate-severe (n=29, 31.5%) subgroups according to the severity of cognitive impairment. Considering the absence/presence of symptoms, anxiety was the most common BPSD (67.4%), followed by depression (61.9%), apathy (57.6%), agitation and sleep disorder (55.4%). Psychosis was present in half of the patients. These symptoms worsened over disease course and represented a core-feature of the disease. No association between BPSD severity and the degree of motor disability was found. These observations suggest that a careful and systematic evaluation of BPSD is mandatory for carefully characterizing disease-related features and for developing new therapeutic approaches. Knowledge of the specific weight of BPSD in DLB would contribute to improve the allocation of health resources for dementia and to a better management of the disease.     

阿尔茨海默病患者精神行为症状与照料者负担的相关性分析

目的分析阿尔茨海默病(AD)患者精神行为症状(BPS)的临床特点与照料者负担的关系。方法连续纳入江苏省苏北人民医院2015年11月~2017年11月确诊的AD患者43例及其照料者,采用简易智能状态检查量表(MMSE)、蒙特利尔认知评估量表(MoCA)和认知障碍简明评价量表(Cog-12)评估AD患者的认知功能;采用神经精神量表问卷(NPI-Q)评估AD患者BPS;采用照料者负担量表(CBI)评估照料者负担,并进行Pearson相关性分析。结果入选的AD患者MMSE总分(17.3±5.9)分,MoCA总分(13.1±6.4)分,Cog-12总分(24.3±10.6)分,NPI-Q评估患者BPS总严重程度为(2.51±2.26)分;照料者总苦恼程度为(3.23±3.07)分,AD患者照料者的CBI总分为(24.70±13.34)分。NPI-Q评估AD患者BPS严重程度和照料者苦恼程度总分与MMSE评分和MoCA及Cog-12总分不相关(P>0.05)。NPI-Q评估AD患者BPS严重程度总分与时间依赖负担、社交负担、情感负担、CBI总分呈正相关(r=0.439,0.330,0.319和0.386,P<0.05);NPI-Q评估BPS照料者苦恼程度总分与时间依赖负担和CBI总分呈正相关(r=0.417和0.306,P<0.05)。结论AD患者BPS增加照料者的时间依赖负担、社交负担及情感负担。     

Apathy in Alzheimer's disease

Apathy, or loss of motivation, is arguably the most common change in behavior in Alzheimer's disease (AD) but is underrecognized. Apathy represents a form of executive cognitive dysfunction. Patients with apathy suffer from decreased daily function and specific cognitive deficits and rely on families to provide more care, which results in increased stress for families. Apathy is one of the primary syndromes associated with frontal and subcortical pathology, and apathy in AD appears to have multiple neuroanatomical correlates that implicate components of frontal subcortical networks. Despite the profound effects of this common syndrome, only a few instruments have been designed to specifically assess apathy, and these instruments have not been directly compared. Assessment of apathy in AD requires clinicians to distinguish loss of motivation from loss of ability due to cognitive decline. Although apathy may be misdiagnosed as depression because of an overlap in symptoms, current research has shown apathy to be a discrete syndrome. Distinguishing apathy from depression has important treatment implications, because these disorders respond to different interventions. Further research is required to clarify the specific neuroanatomical and neuropsychological correlates of apathy and to determine how correct diagnosis and treatment of apathy may improve patient functioning and ease caregiver burden.     

Assessment of behavioral and psychological symptoms of dementia by family caregivers

This study was designed to test the performance and related factors of a self-administered instrument in assessing behavioral and psychological symptoms of dementia (BPSD) by family caregivers. We recruited 173 patients with dementia and major caregivers from two neurological clinics. Information about clinical diagnosis, the Mini Mental State Examination (MMSE), the Clinical Dementia Rating (CDR), the Dementia Behavior Disturbance Inventory (DBDI), and global caregivers’ strain were collected from interview and chart review. We found that DBDI has acceptable construct validity and good internal consistency reliability. BPSD was more frequently found in patients with advanced dementia, poor cognitive function and highly correlated to caregivers’ strain. Multivariate analysis revealed that female patients and caregivers, advanced CDR stages, patient-caregiver relationship, types of dementia and MMSE score were related to the increase of frequency and disturbance index of DBDI. We concluded that BPSD could be evaluated by family caregivers using a self-administered instrument. Further study is indicated to clarify how caregiver characteristics affect the report of behavioral symptoms, and its clinical importance.     

Prevalence and outcomes of caregiving after prolonged (> or =48 hours) mechanical ventilation in the ICU

OBJECTIVES: (1) To estimate caregiver support required by patients 2 months after prolonged (at least 48 h) mechanical ventilation (MV) in an ICU; (2) to describe caregiver burden, caregiver depressive symptomatology, and caregiver limitations in activities; and (3) to investigate factors related to depressive symptoms at 2 months in caregivers. DESIGN: Prospective cohort study. STUDY PARTICIPANTS: Caregivers of 115 patients who received prolonged MV in an ICU. MEASUREMENTS: Sociodemographics, employment status, hours spent providing care, help from paid caregiving sources, caregiver burden, and caregiver depressive symptoms. RESULTS: The proportion of patients who survived at least 2 months and required caregiver support was 74.8%. The average age of caregivers was 52.9 years (SD, 14.2), 76.5% were women, and more than half were spouses (52.2%). Only 33 of the caregivers (28.7%) were working, and 30.3% had to reduce their time spent at work to provide care to the patient. The prevalence of risk of clinical depression (defined as Center for Epidemiological Studies depression scale [CES-D] score > or =16) among caregivers was 33.9%. The mean caregiver CES-D score was 13.2 (SD, 11; median, 10). Multiple linear regression analysis showed that higher CES-D score was associated with more hours per day helping with patients' activities of daily living and instrumental activities of daily living (p = 0.003). CONCLUSIONS: Two months after being placed on MV for at least 48 h, a high proportion of patients need caregiver support. Approximately 34% of caregivers are at risk of clinical depression. Many caregivers report lifestyle changes and burden when providing care for the patients.     

About the Editors: Biographies and Addresses

Informal caregivers, mainly family members, of persons with Parkinson's disease (PD) are usually burdened with quite different loads of stress. Over the past decade, there is no consistent outcome on the association between characteristics of caregivers and patients (as stress sources), and caregiver distress. This meta-analysis integrated findings from 10 studies on the correlates of caregiver distress in terms of depressive symptoms, burden, as well as stress induced by the caregiving role. The results showed that motor symptoms of patients with PD had the strongest relationship with caregiver distress. Increased motor symptoms and higher dependency in activities of daily living showed the highest effect sizes on caregiver distress (|r|?=?.42 –.43) than did patients' higher level of depression (r?=?.37), more advanced disease stage (r?=?.33), longer duration of disease (r?=?.31), as well as poorer cognitive functioning level (|r|= .28). Among the characteristics of caregivers, only intensity of caregiving was significantly related to higher caregiver distress (r?=?.46).     

Brief checklist for non‐cognitive symptoms of dementia

Objective: To describe the development and psychometric utility of the behavioural and psychological symptoms of dementia (BPSD) checklist, a brief caregiver‐rated measure of the frequency of non‐cognitive symptoms of dementia of any type. Methods: Participants were 290 primary caregivers of patients referred to the Memory Clinic. Caregivers rated patients’ BPSD, cognitive symptoms and functional status. Patients underwent standardised cognitive evaluations. Results: High internal consistency reliability and good criterion and construct validity of the 14‐item BPSD checklist were established. Discussion: The BPSD checklist is a comprehensive, yet brief, psychometrically sound measure that may prove useful in both research and clinical settings.     

Anosognosia and depression in patients with Alzheimer's dementia

Anosognosia refers to impaired awareness of patients to realize deficits related to a disorder and is a common symptom of dementia. Anosognosia has far-reaching consequences for diagnosis and treatment and is probably associated with unfavorable prognosis. This study examined the relationship between anosognosia and depression in patients with Alzheimer's dementia (AD). Assessment included interviews of patients and their caregivers. Depressive symptoms were evaluated with observer and self-rating instruments: the Geriatric Depression Scale (GDS), and the “mood” subscale of the Nurses Observation Scale for geriatric patients (NOSGER). Anosognosia was evaluated with the Anosognosia Questionnaire for Dementia (AQ-D). For the evaluation of behavioral and neuropsychological symptoms in dementia and the caregiver burden, the neuropsychiatric inventory (NPI) and the Cares of older People in Europe (COPE) Index were administered. A total of 47 patients were enrolled in the study at the department's geriatric psychiatry outpatient clinic. A considerable discrepancy was found between observer- and self-ratings of depressive symptoms. In 74.5% of the participants, caregiver ratings indicated secondary symptoms of depression as opposed to patient ratings. Thus, in AD, anosognosia may affect not only deficits in cognition and everyday functioning but also affective symptoms (“affective anosognosia”). Caregiver rating therefore is particularly important when assessing mood changes in AD patients.     

Neuropsychiatric assessment of Alzheimer's disease and related dementias.

Alzheimer's disease (AD) patients exhibit a variety of behavioral alterations including agitation, apathy, depression, anxiety, delusions, irritability and disinhibition. Most patients with AD exhibit neuropsychiatric symptoms, and behavioral changes become more frequent with advancing disease severity. The NPI is a valid and reliable means of assessing neuropsychiatric symptoms in patients with dementia. The NPI correlates with increasing disability in activities of daily living and increasing cognitive impairment. Physical illness contributes little to behavioral symptoms measured by the NPI. Reduced frontal lobe metabolism and perfusion have been identified in patients with apathy, agitation, psychosis and depression. Patients with elevated agitation scores on the NPI have a higher burden of frontal lobe neurofibrillary tangles than patients without agitation. The NPI is sensitive to behavioral improvements following treatment with cholinesterase inhibitors and psychotropic agents. Neuropsychiatric symptom profiles differ among dementia syndromes, and the NPI provides a means of assessing neuropsychiatric symptoms that may aid in differential diagnosis. Evaluation of neuropsychiatric symptoms is a critical aspect of dementia diagnosis and management.     

Cognitive functioning in spousal caregivers of dementia patients: findings from the prospective MAASBED study

BACKGROUND: Spousal caregivers are usually of the same age as the dementia patient and therefore at risk of age-related cognitive decline. Suboptimal cognitive functioning in caregivers may have profound implications. METHODS: Fifty-four spousal caregivers of dementia patients from the Memory Clinic of the Academic Hospital Maastricht and the Regional Institute for Community Mental Health Care in the Netherlands were compared with 108 non-caregiving controls. Data were collected on patient and caregiver characteristics and caregiver cognitive functioning. Repeated measures statistical analyses were carried out to investigate the relationship between caregiver cognitive functioning at baseline and patient behavioural problems and caregiver competence during 1 year of follow-up. RESULTS: Caregivers performed significantly worse on several cognitive domains compared with control subjects. Low performance on a verbal memory task was related to a decrease in caregiver subjective competence and an increase in patient hyperactivity. CONCLUSION: The results indicate that screening for cognitive impairment of spousal caregivers may be helpful, because suboptimal cognitive functioning may affect the ability to provide adequate care.     

Anosognosia and depression in patients with Alzheimer's dementia

Anosognosia refers to impaired awareness of patients to realize deficits related to a disorder and is a common symptom of dementia. Anosognosia has far-reaching consequences for diagnosis and treatment and is probably associated with unfavorable prognosis. This study examined the relationship between anosognosia and depression in patients with Alzheimer's dementia (AD). Assessment included interviews of patients and their caregivers. Depressive symptoms were evaluated with observer and self-rating instruments: the Geriatric Depression Scale (GDS), and the “mood” subscale of the Nurses Observation Scale for geriatric patients (NOSGER). Anosognosia was evaluated with the Anosognosia Questionnaire for Dementia (AQ-D). For the evaluation of behavioral and neuropsychological symptoms in dementia and the caregiver burden, the neuropsychiatric inventory (NPI) and the Cares of older People in Europe (COPE) Index were administered. A total of 47 patients were enrolled in the study at the department's geriatric psychiatry outpatient clinic. A considerable discrepancy was found between observer- and self-ratings of depressive symptoms. In 74.5% of the participants, caregiver ratings indicated secondary symptoms of depression as opposed to patient ratings. Thus, in AD, anosognosia may affect not only deficits in cognition and everyday functioning but also affective symptoms (“affective anosognosia”). Caregiver rating therefore is particularly important when assessing mood changes in AD patients.     

The relationship between caregivers' global ratings of Alzheimer's disease patients' quality of life, disease severity, and the caregiving experience

OBJECTIVES: To compare caregivers' ratings of Alzheimer's disease (AD) patients' global quality of life (QOL) using direct assessments and substituted judgments, and to identify qualities of the patients and their caregivers that are associated with these QOL assessments. DESIGN: Cross-sectional interviews. SETTING: A university-based Memory Disorders Clinic. PARTICIPANTS: Forty primary caregivers of AD patients. MEASUREMENTS: Direct scaling of overall quality of life (poor, fair, good, very good, or excellent) and measures of dementia severity, the caregiving experience, and patient and caregiver demographics. RESULTS: The majority of patients had mild (n = 20) or moderate (n = 11) AD. Caregivers' direct assessments of patient QOL were poor (5%, n = 2), fair (28%, n = 11), good (40%, n = 16), very good (20%, n = 8), and excellent (8%, n = 3). Twenty-one (52.5%) of the caregivers rated the patient's QOL the same as they thought the patient would; 12 (30.0%) rated the patient's QOL worse; and seven (17.5%) rated the patient's QOL better. Agreement between the two ratings was fair to moderate. Bivariate analyses showed that lower ratings of caregivers' direct assessments of patient QOL were associated with decreasing ratings of patient mental health and increasing dementia severity, caregiver burden, and caregiver depression. Multivariate models showed burden to be the significant predictor of caregivers' rating of patient QOL and the subscale measuring the caregivers' distress at controlling patient behavior had the strongest association with QOL. Lower ratings of substituted judgment assessments of patient QOL were associated with lower caregiver ratings of the patient's mental health. CONCLUSIONS: Nearly one-half of the caregivers of patients with predominantly mild to moderate AD assess a patient's QOL differently than they believe the patient would. Dementia severity and the caregiver's experiences of depression and burden negatively affect caregivers' assessments of QOL. These results provide a compelling reason why clinicians should take the time to screen for and address caregiver depression and burden and problematic patient behaviors.