A family psychoeducation group program for chinese people with schizophrenia in Hong Kong

OBJECTIVES: This study tested the effectiveness of a family psychoeducation group program over a 12-month period for families of Chinese patients in Hong Kong with schizophrenia. The psychoeducation program is a needs-based group intervention that addresses the perceptions, knowledge, and skills of families in caring for relatives with schizophrenia. METHODS: A controlled trial was conducted with 84 family members. Patient and family variables were measured at recruitment and at one week and 12 months after completion of the intervention. RESULTS: Multivariate analyses of variance showed that participants in the psychoeducation group reported greater improvements in families' and patients' functioning, families' burden of care, and the number and length of patients' rehospitalizations over the 12-month follow-up period, compared with the standard care group. CONCLUSIONS: These findings support the effectiveness of the family psychoeducation group program in improving the psychosocial health and functioning of Chinese patients with schizophrenia and their families.     

Supporting family dementia caregivers: testing the efficacy of dementia care management on multifaceted caregivers’ burden

ABSTRACT

Objectives: Current research suggests that dementia care management (DCM) can decrease burden and associated health impairments of caregivers. The objective of this secondary analysis is to investigate the impact of DCM on multifaceted caregivers’ burden dimensions by differentiating between objective and subjective burden.

Methods: A sample of n = 317 dyads of caregivers and community-dwelling people with dementia (PwD) participated in a general practitioner-based, cluster-randomized intervention trial (Identifier:NCT01401582) with two arms and comprehensive data assessment at baseline and 12-month follow-up. Data provided by the caregiver included an inventory with 88 items in 20 different dimensions.

Results: Caregivers in the intervention ‘DCM’ group showed decreased caregiver burden, especially in caregivers’ objective burden due to caring (i.e. emotional support), caregivers’ subjective burden due to behavior change (i.e. cognition, aggression and resistance, depression, late symptoms) and caregivers’ subjective burden due to perceived conflicts between needs and responsibilities to care (i.e. financial losses) compared to caregivers in the control ‘care as usual’ group, which showed significant increased caregiver burden after 12 months.

Conclusion: Our findings support evidence for the effectiveness of DCM to lower family dementia caregivers' burden in multifaceted dimensions.     

Predictors of long-term institutionalization in patients with Alzheimer's disease: role of caregiver burden]

BACKGROUND AND PURPOSE: The decision of long-term institutionalization of patients with Alzheimer's disease (AD) is based on multiple patients' and caregivers' characteristics. It is very important to find out factors associated with institutionalization for the timely institutionalization, i.e. for the prevention of premature institutionalization. Among those factors, caregiver burden is reportedly one of the most important factors in Europe and North America. However, no studies have been carried out in Japan. In order to address this issue, we studied outcome of patients with AD. SUBJECTS AND METHODS: Subjects were 211 patients who fulfilled the criteria of the National Institute of Neurological Disease and Stroke/Alzheimer's Disease and Related Disorders Association for probable AD. Diagnosis of AD was made through extensive examinations including MRI and PET/SPECT of the brain. The patients included 149 women and 62 men; the mean age was 73.1 +/- 8.0 (SD) years. The Japanese version of Zarit Caregiver Burden Interview (ZBI), which is a validated tool for assessment of the burden of caregivers for dementia patients, was used to evaluate caregivers' burden through the interview of a principal caregiver by trained nurses. Cognitive, functional, and neuropsychiatric impairments were assessed with standardized instruments of the Mini-Mental State Examination (MMSE), Hyogo Activities of Daily Living Scale (HADLS), Neuropsychiatric Inventory (NPI), respectively. We annually sent a questionnaire to the caregivers to collect information on the patients' status. It included questions whether and when they died or were institutionalized and whether they had used formal social supports such as home care, day care, and respite care services. MAIN OUTCOME MEASURE: Time to death or institutionalization. RESULTS: One-hundred and fifty subjects were followed for at least one year and 51 of them met either end point. The Cox proportional hazard model demonstrated that the baseline caregiver burden was a significant predictor of the end point even after controlling possible confounders. Among these, the use of day care and home care services during the course were significant protective factors. The baseline cognitive and functional disturbances but not neuropsychiatric manifestations were significantly associated with the end point. CONCLUSIONS: The caregiver burden is a significant predictor for the death or institutionalization of the patients with AD. The caregiver education which decrease the caregiver burden and prompt the usage of the social care services are necessary to protect premature institutionalization.     

Psychological distress among latino family caregivers of adults with schizophrenia: the roles of burden and stigma

OBJECTIVE: Little research has focused on the mental health of Latino caregivers with a relative with schizophrenia, despite data showing that up to three-quarters of Latino persons with schizophrenia live with their families. This study examined the relation between caregivers' mental health and perceived burden and stigma and characteristics of the patient and caregiver. METHODS: Interviews were conducted in the language of preference (Spanish or English) in Wisconsin, California, and Texas with 85 Latinos caring for an adult with schizophrenia. Measures included the Center for Epidemiologic Studies-Depression Scale, the Zarit Burden Scale, and the Greenley Stigma Scale. RESULTS: General population studies of Mexican Americans have found that between 12% and 18% meet the cutoff for being at risk of depression; however, 40% of the sample met this criterion. Younger caregiver age, lower levels of caregivers' education, and higher levels of the patients' mental illness symptoms were predictive of higher levels of caregivers' depressive symptoms. Caregivers' perceived burden mediated the relation between patients' psychiatric symptoms and caregivers' depression. Caregivers' perceived stigma was significantly related to caregivers' depressive symptoms, even when the analyses statistically adjusted for psychiatric symptoms and demographic variables. CONCLUSIONS: The high rates of depressive symptoms among Latino families caring for a relative with schizophrenia suggest that interventions should include attention to the mental health and recovery of family caregivers in addition to the patient's recovery. Younger Latino caregivers and those with lower levels of education are particularly at risk of depression.     

Determinants of quality of life in Alzheimer's disease: perspective of patients, informal caregivers, and professional caregivers

Background: Alzheimer's disease (AD) is a chronic medical condition with symptoms that compromise patients' quality of life (QoL). The identification of the factor predicting QoL in AD is essential to develop more effective interventions. Recent research suggests that these factors could be different for the distinct informants. This study explores the QoL predictors considering three different sources of information: patients, caregivers, and healthcare staff. Methods: In this cross-sectional study, a sample of 102 patients, their primary caregivers, and 15 members of the healthcare staff evaluated patients' QoL (QoL-AD Scale). Patients' and caregivers' demographic and clinical data (cognitive function, neuropsychiatric symptoms, depression, and caregivers' burden) were considered as QoL predictors. Results: In multivariate-adjusted linear regression analyses, we observed that patients' ratings were mainly affected by their mood whereas caregivers' ratings were also negatively influenced by patients' irritability and burden. According to staff ratings, both psychotic symptoms and neuroleptics were associated with lower QoL. Conclusions: Our findings suggest that depression is the main variable related to patients' QoL and that more careful management of neuropsychiatric disorders is necessary. Both proxies' ratings are not equivalent to patients' reports in terms of predictors but they are complementary. Thus, a thorough QoL assessment should consider separately the perspective of the different informants.     

Ethical and practical challenges raised by an adult day program's caregiver satisfaction survey

A consumer satisfaction survey was completed by 21 caregivers to persons with dementia, who participated in Silver Club, a person-centered Adult Day Service program. Two themes emerged: caregivers expressed high program satisfaction based on joint benefits to members and caregivers, and they desired more information about the nature of the members' daily participation. These findings raised two important issues for program staff. First, Adult Day Service programs are often referred to and marketed as providing caregiver respite. This approach does not acknowledge caregivers' interest in programs that meet the needs of their loved ones, and may lead to reluctance to use programs that only stress the value of respite. Second, caregivers' desires for detailed feedback about members' program participation raise ethical and practical challenges within person-centered models of care. Collecting feedback from both participants and their caregivers can help monitor and improve services provided by person-centered Adult Day Service programs.     

Predictors of changes in caregiving burden in people with schizophrenia: a 3-year follow-up study in a community mental health service

OBJECTIVE: The aims of this study were to measure changes over 3-years in caregiving burden and emotional distress in relatives of people with schizophrenia and to identify factors predicting the levels of caregiving burden. METHOD: A cohort of 51 caregivers of patients with schizophrenia attending the South-Verona Community Mental Health Service was assessed over 3-years with the Involvement Evaluation Questionnaire, European Version. Predictors of caregiving burden included both caregivers' and patients' characteristics and patterns of carer-patient interaction. RESULTS: Baseline levels of family burden were high in worrying and urging domains. Fifty-one per cent of caregivers experienced significant emotional distress. Both overall burden and emotional distress improved. Higher patients' psychopathology, higher numbers of patient-rated needs, patients' lower global functioning and patients' poorer quality of life were found to be related to the severity of family burden. The only significant predictor of caregivers' burden at follow-up was the baseline level of caregivers' burden itself. CONCLUSION: A policy addressing the caring burden of informal caregivers beyond patients' symptoms reduction should be considered.     

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.     

Assessing the severity of dementia. Patient and caregiver

In dementia there is cognitive impairment, disability in daily life, and sometimes behavioral disturbance. These changes are a burden for the caregivers of patients with dementia. Few studies are available that examine all these aspects and their interrelationships in a single patient group. In our study we selected detailed methods for assessment of all these aspects. Interrelationships were studied in 30 mild to moderately impaired patients with dementia and their caregivers. Although the relations of cognitive deterioration to disability in daily life and of burden experienced by the caregiver to patient's condition were stronger than often reported, it was impossible to deduce the overall severity of dementia from one single aspect. Thus, for effective management of patients and caregivers, for evaluation of individual treatment or of clinical trials, attention should be paid to all the different aspects of patients' condition and caregivers' burden. Outcome measurements will then be more valid.     

Helping caregivers of persons with dementia: which interventions work and how large are their effects?

BACKGROUND: In recent years, many different forms of interventions for caregivers of people with dementia have been developed. However, their results have been, in part, inconclusive. METHODS: Meta-analysis was used to integrate the results of 127 intervention studies with dementia caregivers published or presented between 1982 and 2005. RESULTS: Interventions had, on average, significant but small effects on burden, depression, subjective well-being, ability/knowledge and symptoms of care recipient. Only multicomponent interventions reduced the risk for institutionalization. Psychoeducational interventions that require active participation of caregivers had the broadest effects. Effects of cognitive-behavioral therapy, support, counseling, daycare, training of care recipient, and multicomponent interventions were domain specific. The effect sizes varied by study characteristics, such as caregiver gender and year of publication. CONCLUSIONS: Because most interventions have domain-specific outcomes, clinicians must tailor interventions according to the specific needs of the individual caregivers. Although more recent interventions showed stronger effects, there is room for further improvements in interventions.     

Which level of care is preferred for end-stage dementia? Survey of Taiwanese caregivers

In Western countries, most family caregivers view some degree of palliative care as appropriate for severely demented care recipients. In Asian countries, caregivers' attitudes toward such an important issue have not been sufficiently investigated. Therefore, we surveyed Taiwanese caregivers' attitudes toward the terminal care of demented care recipients by questionnaire. In 115 (48 men, 67 women; mean age 73.7+/-9.5 years) caregivers who completed the questionnaire, most caregivers (61%) preferred highly aggressive care, whereas only 3% preferred solely palliative care at the end of the demented care recipients' life. Caregivers having a lower education level (< or = 12 vs > 12 years) or having care recipients of a younger age (< or =75 vs >75 years) exhibited a higher preference for cardiopulmonary resuscitation (CPR) (P = .020 and P = .010, respectively). Sixteen percent of caregivers accepted postmortem autopsy for their care recipients. Twenty-eight percent of caregivers of home-resident recipients anticipated institutionalization, especially those with care recipients having moderate to severe stages of dementia. Co-surrogate caregivers, including the spouse and the offspring, were the most common proxies (39%) for care recipients with end-stage dementia. By comparison with Western countries, the low acceptance rate of CPR refusal and nursing home placement by our caregivers might result from cultural differences.     

Effect of the Meeting Centres Support Program on informal carers of people with dementia: results from a multi-centre study

Because of the complex nature of the problems that carers of persons with dementia encounter, several comprehensive support programs for carers were developed in the past decade. One such program is the Meeting Centres Support Program (MCSP) that integrates different types of support for persons with dementia and their carers, which have proved to be effective in practice and/or research. Within the framework of a study into the national implementation of the MCSP, it was investigated whether the positive effects found in carers that participated in the first Amsterdam Meeting Centres, were also achieved in other regions of The Netherlands. A pre-test-post-test control group design with matched groups was applied. In total, 94 carers in the MCSP in eight meeting centres and 34 carers of dementia patients who frequented regular psychogeriatric day care (PDC) in three nursing homes were included in the study. During the study period 23 carers of the MCSP group and 21 carers of the PDC group dropped out. At baseline and after seven months indicators of burden (psychological and psychosomatic symptoms, feelings of burden and time between start of support and institutionalization of the persons with dementia) were measured, as well as potential determinants of burden (sense of competence, coping strategies, experienced support, loneliness and the emotional impact of behaviour problems). Though on a group level no effect was found, either in psychological and psychosomatic symptoms or in the determinants of burden, a subgroup of carers who felt lonely (n=22) at baseline benefited significantly more from the MCSP than from PDC in terms of psychological and psychosomatic symptoms. A majority of MCSP carers (82.1%) experienced less burden and more professional support. After seven months significantly fewer persons with dementia in the MCSP (4%) were institutionalized as compared to the patients in PDC (29%). Patients in the MCSP participated for a longer period of time before institutionalization. Although the effect on sense of competence of carers that was found in the Amsterdam study was not found in this multi-centre study, the effect on burden and delayed institutionalization of the person with dementia were confirmed. The integrated MCSP also proved more effective than PDC in decreasing psychological and psychosomatic symptoms in lonely carers. Further dissemination of the MCSP is therefore recommended.     

Burden of caregivers of patients with bipolar affective disorders

Thirty-two problem-oriented interviews with caregivers of patients with bipolar affective disorders were analyzed using content analysis. The 722 statements of caregivers about their experiences of subjective burden because of the illness of their family members were summarized in 49 global statements and correlated by factor analysis to 10 types of burden. In particular, patients' noncompliance as well as the helplessness of the caregivers in interaction with the (changing) depressive and manic symptoms of the ill family members emerged as serious burdens on the caregivers. Whereas female caregivers suffered more from problems regarding quality of relationship with the patient, male caregivers experienced more constraints on their own autonomy, uncertainty concerning their judgment of patients' capacity, and uncertainty because of the changing symptoms of illness. The findings of this study highlight that an appreciation of caregivers' own consternation and information about how best to handle the (uncooperative) behavior of the patient should be taken into account in psychoeducational groups as well as in the daily work routine of professionals.     

Behavioral Disturbance in Dementia

Behavioral disturbances are frequently the most challenging manifestations of dementia and are exhibited in almost all people with dementia. Common behavioral disturbances can be grouped into four categories: mood disorders (e.g., depression, apathy, euphoria); sleep disorders (insomnia, hypersomnia, night-day reversal); psychotic symptoms (delusions and hallucinations); and agitation (e.g., pacing, wandering, sexual disinhibition, aggression). They are often persistent, greatly diminish quality of life of patients and their family caregivers, cause premature institutionalization, and pose a high economic burden on the patient, family, and society. Behavioral disturbances can be prevented and treated with a multifaceted approach that supports dignity and promotes comfort and quality of life of persons with dementia and their family members. Management involves prompt treatment of reversible factors and management of symptoms using primarily individualized nonpharmacological interventions. Pharmacological interventions need to be restricted to behavioral emergencies and for short-term treatment of behavioral disturbances that pose imminent danger to self or others.     

Longitudinal study on the relationship between symptomatology of dementia and levels of subjective burden and depression among family caregivers in memory clinic patients

The objective was to evaluate the course and severity of dementia-related symptoms and their relationship to caregivers' subjective burden and depression over time. Forty-five patients with dementia and their caregivers were followed over a period of 2 years. Patients' cognition, function, and behavioral/psychological symptoms were assessed by the Mini Mental State Examination, Syndrome Kurz Test, Geriatric Depression Screening scale, Instrumental Activities of Daily Living Scale, Physical Self Maintenance Scale, Behavioral Abnormalities in Alzheimer's Disease Rating Scale, and Nurses Observation Scale for Geriatric Patients. Caregivers' depression and subjective burden were evaluated by the Geriatric Depression Screening scale or Beck Depression Inventory and the Caregiver Burden Interview. Global dementia severity, functional impairment, and behavioral disturbances increased significantly over the 2-year observation period. Caregivers' burden remained stable, and severe depression decreased over time. There were significant associations between burden and dementia-related symptoms. For deficits in activities of daily living as well as behavioral disturbances, these associations became stronger over time. It was concluded that stage of dementia, functional deficits, and behavioral disturbances are important factors when evaluating the relationship between patients' symptoms and caregivers' well-being.     

Gender of demented patients and specific family relationship of caregiver to patients influence mental fatigue and burdens on relatives as caregivers.

OBJECTIVES: To survey the burden and psychological problems of family caregivers of demented people. DESIGN: All scores were compared according to gender of the demented patients and which family members were the caregivers. SETTING: Outpatients clinic at the university hospital and the day service system for the elderly. PATIENTS: Sixty-two demented patients living at home and family members acting as caregivers. MEASURES: Cognitive function, activities of daily living (ADL) and behaviour of demented patients were rated using the Hasegawa scale, the ADL scale and the dementia behaviour disturbance (DBD) scale. Caregiver's burden and mental fatigue were rated using a burden scale and a general health questionnaire (GHQ). RESULTS: Caregiver burden correlated negatively with the Hasegawa score and positively with the GHQ and DBD scores. Caregiver burden, GHQ and DBD for male patients were significantly higher than for females. Little difference was evident for caregiver burden scale or patient DBD between spouses and offspring as caregiver, but the GHQ score for spouses was significantly worse than that for offspring. CONCLUSIONS: The difficulty of caregivers in supporting the daily life of demented family members correlated with patients' cognitive impairment, abnormal behaviour and ADL status, and caregivers' difficulty resulted in mental fatigue. Caregivers' relative isolation from friends, attributable to their caregiving responsibility, did not correlate with the demented person's cognitive impairment or ADL status.     

Recurrent depressive symptomatology and physical health: a 10-year study of informal caregivers of persons with dementia.

OBJECTIVE: To examine the degree to which recurrent depressive symptomatology predicts the decline in the health status of a randomly derived national sample of caregivers of persons with dementia. METHOD: Individuals with dementia and their caregivers were recruited from each Canadian province as part of a national epidemiologic study of dementia prevalence and the health and welfare of care providers. Both patients and caregivers were assessed at 3 points over a 10-year period. Cohabiting family members who shared the same residence as care recipients were selected for the current study (n = 96 pairs). We computed a repeated measures analysis of variance to compare the health of caregivers who were consistently asymptomatic for depression, of those symptomatic at 1 of 3 points of measurement, and of those symptomatic at 2 of 3 points. RESULTS: As hypothesized, caregivers presenting with elevated depressive symptomatology at multiple points of measurement reported poorer and worsening physical health over time. CONCLUSIONS: The results of this study support the assertion that depressive symptomatology significantly predicts the decline in health status of caregivers of persons with dementia. Concerted effort to treat depression in this population is warranted to forestall this trajectory of decline and premature patient institutionalization.     

Falls of the elderly are associated with burden of caregivers in the community

BACKGROUND: Little attention has been paid to the impact on caregivers who provide care to a family member who has falls. The purpose of the current study was to determine whether falls of care recipients are associated with caregivers' burden. METHODS: A cross-sectional study of 1874 community-dwelling care recipients and 1478 caregivers was conducted. We examined the characteristics of care recipients and caregivers, including demographic characteristics, depressive mood as assessed by the Geriatric Depression Scale (GDS-15), the basic activities of daily living (bADL), fall history in the past 6 months, and physician-diagnosed chronic diseases to determine whether there was an association with caregivers' burden as assessed by the Zarit Burden Interview (ZBI). RESULTS: A total of 567 care recipients (30.3%) had a history of falls in the past 6 months. The mean ZBI score of caregivers with falls was significantly higher than that of caregivers without falls. There were negative correlations between the ZBI score and recipient bADL score and positive correlations between the ZBI score and GDS-15 scores of the recipient and caregiver, the level of severity of dementia, and the Charlson comorbidity index. Male recipient, fall history, behavioral disturbance, and dementia had significantly higher ZBI scores than those of controls. The stepwise multiple regression analyses found that the GDS-15 score of caregivers and recipients, level of severity of dementia, bADL score, and fall history were independently associated with the ZBI score. CONCLUSION: Among the community-dwelling frail elderly, falls are associated with caregiver burden even when controlling for various possible confounding factors.     

What causes problems in Alzheimer's disease: attributions by caregivers. A qualitative study

OBJECTIVE: To gain insight into caregivers' understanding of the causes of behaviours they find problematic in people with Alzheimer's disease in order to inform the development of educational strategies. METHODS: A qualitative, semi-structured interview was used. Participants were 205 caregivers for a person with Alzheimer's disease, all of whom were aware of the diagnosis and who had been recruited as part of a larger longitudinal study. Participants were from inner-city and suburban London/semi-rural Essex. The main outcome measures were caregivers' understanding of: the cause of problematic behaviour; the ability of the person with dementia to control this behaviour; the prognosis of the illness. RESULTS: Most carers attribute the cognitive, behavioural and psychological symptoms of dementia to causes other than dementia; many believe that the person with dementia has control over their behaviour and substantial numbers believe the person with dementia will return to normal. CONCLUSIONS: This study suggests that providing facts about the illness to caregivers is not enough, as caregivers may not understand that the symptoms they observe are related to the diagnosis. Education by clinicians should focus on the understanding of caregivers and in particular explore the caregivers' attributions of the symptoms which are present in the person for whom they care.     

Impact of multiple-family groups for outpatients with schizophrenia on caregivers' distress and resources

OBJECTIVE: The objective of this study was to evaluate the effects of multiple-family group treatment on distress and psychosocial resources among family caregivers of persons with schizophrenia. METHODS: A total of 97 consumers with schizophrenia or another psychotic disorder and their caregivers were randomly assigned to receive multiple-family group treatment (N=53) or standard psychiatric outpatient care (N=44). Reliable and valid measures were used to assess caregivers' distress, caregivers' resources, and consumers' clinical status. RESULTS: After consumers' clinical status and baseline rates of caregivers' distress and caregivers' resources were controlled for, the caregivers of consumers who received multiple-family group treatment experienced greater reductions in distress but no increases in resources compared with caregivers of consumers who received standard psychiatric care. CONCLUSIONS: Multiple-family group treatment reduced caregivers' distress but did not increase caregivers' resources relative to standard psychiatric care.