Considerable Caregiver Research Articles

Autism, Stigma, and South Asian Immigrant Families in Canada.

Considerable empirical evidence suggests early recognition of autism and access to support result in long-term positive outcomes for children and youth on the spectrum and their families. However, children of racialized families are often diagnosed at later ages, are more likely to be misdiagnosed, and experience many barriers to service access. There is also a paucity of research exploring the experiences of parents from specific immigrant groups caring for their children on the spectrum in Canada, many of whom identify as members of racialized communities. As such, the main aim of the study was to examine how South Asian immigrant parents in Canada are experiencing available care programs and support. Another aim was to examine their perceptions of social stigma associated with autism. We conducted an inductive thematic analysis of qualitative data from nine interviews with South Asian parents living in Ontario, Canada. Findings confirmed barriers to an autism diagnosis and to service access. Additionally, parents reported pronounced autism stigma, which enacted impediments to timely diagnosis, service access, and health-promoting behaviors. Findings also revealed that parents experience considerable caregiver stress and psychological distress. The generated evidence is anticipated to inform equitable policy, programming, and practices that better support the needs of children on the spectrum and their immigrant families.

Living with a child with MSUD: Psychosocial issues of Filipino parents with a child with maple syrup urine disease

PurposeMaple syrup urine disease (MSUD) is a common inborn error of metabolism diagnosed in the Philippines. A family may experience stress, anxiety, sorrow, or feelings of helplessness when a child is diagnosed to have a genetic disorder, which can lead to chronic care and disability. This study aims to explore the psychosocial issues experienced by Filipino parents with children having MSUD. MethodsThis is a descriptive and qualitative study. One-to-one interviews using a semi-structured set of questions were done between the months of November 2015 to March 2016. A total of 12 parents were interviewed. Thematic analysis was used. ResultsThe diagnosis of MSUD in a child is, indeed, a stressful event for the family. Parents experienced fear, confusion, and hurt, among other emotions. Having a child with MSUD had a negative impact on their families, especially in terms of financial burden, dietary restriction, and marital conflicts leading to separation. However, some parents reported positive effects, such as increased confidence in one’s abilities to care for the affected child and closer relationships among family members. ConclusionA diagnosis of MSUD on the child places considerable caregiver burden on the parents. Findings have important implications for genetic counselors.

Parental Psychosocial Distress in Pediatric Sickle Cell Disease and Chronic Pain.

Pediatric sickle cell disease (SCD) management can result in considerable caregiver distress. Parents of youth with chronic SCD pain may face the additional challenge of managing children's chronic pain and chronic illness. This study examined associations between parent psychological distress and child functioning and the moderating role of chronic pain among youth with SCD. Youth presenting to pediatric outpatient comprehensive SCD clinics and their primary caregivers completed a battery of questionnaires. Parents reported on parenting stress, parent mental and physical health, and family functioning. Children completed measures of pain characteristics, depressive symptoms, catastrophic thinking, functional disability, and quality of life. Patients (N = 73, Mage = 14.2 years, 57% female) and their caregivers (Mage = 41.1 years, 88% mothers, 88% Black) participated. Worse parent functioning was associated with worse child pain, functioning, quality of life, and depressive symptoms. Beyond the effects of SCD, chronic SCD pain magnified the negative associations between parenting stress frequency and child quality of life, parent physical health and child quality of life, and parent depressive symptoms and child depressive symptoms. Chronic pain may exacerbate the relations between parent and child functioning beyond the effects of SCD alone. The management of both SCD and chronic pain may present additional challenges for parents that limit their psychosocial functioning. Family-focused interventions to support parents and youth with chronic SCD pain are warranted to optimize health outcomes.

Assessment of the Psychological Burden Among Family Caregivers of People Living with Alzheimer's Disease Using the Zarit Burden Interview.

In China, family caregivers play a major role in caring for people living with Alzheimer's disease (PLWAD), but little is known about the burden this creates. This study aimed to investigate the burden among family caregivers of PLWAD and the factors influenced it. Family caregivers of PLWAD were recruited from a hospital in China from January 2018 to July 2018. All data were collected online using the Chinese version of the Zarit Burden Interview (ZBI), and the participants' sociodemographic and caregiving details were obtained. T-tests and Kruskal-Wallis H (K) tests were used to compare ZBI scores between groups. Factors related to the caregiver psychological burden were analyzed using multiple linear regression analysis. A total of 300 participants were assessed, of which 213 (71.00%) were female. More than half of the caregivers were the patient's daughter (51.0%, n = 153). The average ZBI score of the caregivers was 43.05 (13.42). The level of burden was influenced by age, the relationship of the caregiver to the patient, the severity of AD, the caregiver's retirement status, the income level of the caregiver, and the caring time. Regression analysis showed that retired caregivers were more likely to have higher levels of burden and that burden increased with AD severity. Most family caregivers of PLWAD have a considerable caregiver psychological burden. The findings increase the understanding of factors that influence family caregiver burden, and pave the way for potential interventions, such as social support and caregiver empowerment, to reduce their burden.

Factors related to the burden of family caregivers of elderly patients with spinal Tumours in Northwest China

BackgroundFamily caregivers of elderly patients with spinal tumours experience considerable pain and burden during the care process. This study aims to investigate the factors associated with caregiver burden in family caregivers of elderly patients with spinal tumours.MethodsA total of 220 elderly patients with spinal tumours (age ≥ 65 years) hospitalized at the spine centre of our hospital from January 2015 to December 2017 and their family caregivers were recruited for this cross-sectional study. All participants completed a sociodemographic questionnaire. Caregiver burden, social support and self-efficacy were assessed by the Chinese version of the Zarit Burden Interview (ZBI), the Social Support Rating Scale (SSRS) and the General Self-Efficacy Scale (GSE), respectively. The factors related to caregiver burden were analysed by multivariate analysis. P < 0.05 was considered statistically significant.ResultsThe 216 elderly patients with spinal tumours were 71.59 ± 8.49 years old, and their caregivers were 70.46 ± 9.13 years old. A total of 170 patients were cared for by their spouses, who accounted for 78.7% of all caregivers. The ZBI score for the family caregivers was 35.5 ± 7.5, and most caregivers (84.5%) reported a moderate or heavy burden. The factors related to caregiver burden included patient paralysis, the primary cancer site, chemotherapy and/or radiation, cognitive dysfunction, functional status, monthly income, pain score, caregivers’ SSRS score, and GSE score.ConclusionsMost family caregivers of elderly patients with spinal tumours have a considerable caregiver burden. Interventions based on social support and self-efficacy can help reduce caregiver burden.

Frequency and severity of depression in primary caregivers of psychotic patients.

Objectives: The study aimed at determining the frequency and severity of depression in primary caregivers of psychotic patients. Study Design: Cross sectional study. Setting: Out-patient as well as in-patient setting of Department of Psychiatry, Military Hospital Rawalpindi. Period: Six months, from 20th April 2017 to 19th October 2017. Material and Methods: Purposive, non-probable sampling technique was used. A total of 246 caregivers of the same number of psychotic patients were studied after consent, using the General Health Questionnaire 28 (GHQ-28) and Beck’s Depression Inventory (BDI). The mean total BDI scores were calculated and correlated with the socio-demographic variables. Results: The mean total GHQ-28 score of 246 caregivers was 7.32 (cut off score is &gt;7) which indicate definite psychopathology among them. Out of 246 caregivers, 175 (71.1%) showed scores greater than 7 (GHQ positive) while 71 (28.9%) showed scores less than 7 (GHQ negative). The mean total BDI score of 175 caregivers (who were GHQ positive) was 17.83 (cut off score for depression is &gt;9). Out of 175 GHQ positive caregivers, 72 (41.14%) showed subclinical or no depression, 49 (28%) showed mild depression, 40 (22.86%) showed moderate depression and 14 (8%) showed severe depression on BDI. The results show that there is considerable caregiver burden in relatives of psychotic patients. Conclusion: Caregivers of psychotic patients suffer clinical depression with obvious negative outcomes for the patient. Younger age group, female gender and illiteracy typically carry a greater risk of experiencing higher burden in terms of depression.

Resilience in Carers of People With Young-Onset Alzheimer Disease.

Young-onset Alzheimer disease (YOAD) causes psychological and emotional difficulties for carers. However, even in the face of considerable caregiving demands and burden, some carers are resistant to stress, which may be a sign of resilience. This study investigated whether the clinical symptoms of the person with YOAD might be associated with resilience in their carers. A consecutive series of 43 persons with YOAD and their 43 family caregivers were assessed. The carers showed moderate to high level of resilience, low level of anxiety and depressive symptoms, and moderate level of burden. No relationship was found between resilience and sociodemographic characteristics of both carers and care recipient and with clinical characteristics of persons with YOAD. A linear regression analysis showed that resilience was inversely associated with carers' depressive symptoms. The findings suggest that resilience may mainly be related to carers' mental health.

Factors Associated with Caregiver Burden in Primary Caregivers of Patients with Adolescent Scoliosis: A Descriptive Cross-Sectional Study.

BackgroundPrimary caregivers for patients with scoliosis suffer from considerable distress and burden. However, a few studies have examined the factors related to burden of caregivers of patients with adolescent scoliosis, particularly in China. Therefore, the present study aimed to identify patient and caregiver characteristics associated with caregiver burden.Material/MethodsA cross-sectional study was conducted in a sample comprising 87 pairs of patients with adolescent scoliosis and their primary caregivers from July 2014 to October 2016 in Xi’an, China. Patients and their primary caregivers were administered a sociodemographic questionnaire. The caregiver burden, social support, and self-efficacy were assessed using the Chinese version of the Zarit Burden Interview (ZBI), Social Support Rating Scale (SSRS), and General Self-Efficacy Scale (GSE). A multivariate analysis was used to evaluate the factors associated with caregiver burden.ResultsMost primary caregivers observed in this study were female (65.5%), with mothers of the patients accounting for 58.6% of all the caregivers. The ZBI score of primary caregivers was 36.83±13.30, and most caregivers (88.5%) had moderate or severe burden. The factors associated with caregiver burden were Cobb angle of patients, SSRS scores, GSE scores, and monthly household income per capita of the caregiver (R2=0.556; P<0.001). The identified significant factors explained nearly 56% of the variance in the caregiver burden.ConclusionsThe data indicated that most primary caregivers for patients with scoliosis had a considerable caregiver burden, and intervention of social support and self-efficacy might be helpful in reducing caregiver burden.

Bringing Social Context Into the Conversation About Pediatric Long-term Ventilation.

Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child’s life, the added months to years could largely be spent in the hospital, a long-term care facility, or medical foster care, as well as at home. Clinicians who counsel families about initiating LTV must help them make value-based decisions that account for each child’s medical needs and the predicted experience with the technology. That experience depends substantially on how well the family can manage daily care at home: how well they can learn the necessary skills, dedicate the required time, and garner adequate support. Because the success of long-term technologies rests on home care provided by families, each family’s social context is relevant to the decision to initiate pediatric LTV. Social context (the physical, geographic, economic, and cultural circumstances in which children and their families live) will impact the child’s outcome; those children with medical complexity combined with adverse social factors have the poorest health among all children.1 A recent study showed that ∼2% of PICU patients across the United States received a tracheostomy and LTV; almost all of these children had chronic medical conditions.2 Substantial variability was noted in the postdischarge support systems provided to these medically complex patients and their families. Regional resources, such as home nursing, medical day care, and medical transportation, can reduce burdens for this population, but they receive inconsistent local, state, and federal support. Considerable caregiving demands for families managing home medical equipment are well described and can entail employment changes, geographic relocation, or disruption of family structure.3 Clinicians striving …

Caregiver burden in schizophrenia following paliperidone palmitate long acting injectables treatment: pooled analysis of two double-blind randomized phase three studies

The pooled analysis of two double-blind, randomized, multicenter, phase-3 studies evaluated predictors of improvement or worsening of schizophrenia-related caregiver burden following paliperidone palmitate long-acting injectables (1-monthly [PP1M] and 3-monthly [PP3M]) treatment. Caregivers were offered to complete the involvement evaluation questionnaire (involvement evaluation questionnaire; 31-item scale). Total, 1498 caregivers (intent-to-treat open-label analysis set, n = 1497; mean [SD] age: 51.5 [13.02] years, 27 countries) were included: 49% were parents and >50% caregivers spent >32 hours/week in caregiving. Majority of caregivers with considerable burden (n = 1405; mean [SD] baseline involvement evaluation questionnaire scores: 28.4 [15.07]) improved significantly from baseline to end-of-study (n = 756; mean [SD] change from open-label baseline to double-blind endpoint in long-acting injectable scores:−8.9 [14.73]); most improvements were seen in urging followed by worrying, tension, and supervision domains (mean [SD] change from open-label baseline to double-blind endpoint in involvement evaluation questionnaire scores, urging: −3.7 [6.45]; worrying:−2.6 [5.11]; tension:−2.3 [4.84]; supervision: −1.3 [3.69]). Improvements significantly correlated with relapse status, patient age, and age of diagnosis (p < 0.001) while long-acting injectable use at baseline, number, and duration of prior psychiatric hospitalizations (<24 months) had no significant correlation. Caregiver burden was significantly improved for patients on prior oral antipsychotics post-switching to long-acting injectable, with less impact on leisure days and hours spent in caregiving (p < 0.001). Family members of patients with schizophrenia experience considerable caregiver burden. Switching from oral antipsychotic to long-acting injectable can provide meaningful and significant improvement in caregiver burden.

Psychosis in Parkinson Disease: A Review of Etiology, Phenomenology, and Management.

Parkinson disease psychosis (PDP) is a common phenomenon in Parkinson disease (PD) patients treated with dopaminergic drugs, and is associated with high morbidity and mortality. It also correlates with depression and dementia, and can contribute to considerable caregiver stress and burnout. While symptoms can be relieved by decreasing doses or number of anti-PD medications, this may lead to an unacceptable worsening of motor function. When general medical or psychiatric conditions have been ruled out, and decreasing dopaminergic agents is not effective in treating psychosis, therapies include atypical antipsychotics, primarily clozapine and quetiapine. Of these, clozapine is effective but is associated with a poor side-effect profile and the necessity for frequent blood draws. Clinicians prefer quetiapine for its theoretically better safety profile, although there is no evidence for efficacy in treating psychosis. All atypical antipsychotics are associated with increased mortality in this patient population. Cholinesterase inhibitors can ameliorate psychosis symptoms. The serotonin 5-HT2A receptor inverse agonist pimavanserin was recently approved by the US FDA for the treatment of PDP and may prove to be a more targeted therapy without the downsides of atypical antipsychotics.

Care Received by Elderly US Stroke Survivors May Be Underestimated.

Previous studies exploring stroke-related caregiving focused solely on informal caregiving and a relatively limited set of activities. We sought to determine whether, and at what cost, stroke survivors receive more care than matched controls using an expanded definition of caregiving and inclusion of paid caregivers. Data were drawn from the National Health and Aging Trends Study (NHATS), a nationally representative survey of Medicare beneficiaries. NHATS personnel conducted in-person interviews with respondents or proxies to determine the weekly hours of care received. We compared hours of assistance received between self-reported stroke survivors (n=892) and demography- and comorbidity-matched nonstroke controls (n=892). The annual cost of stroke caregiving was estimated using reported paid caregiving data and estimates of unpaid caregiving costs. Of community-dwelling elderly stroke survivors, 51.4% received help from a caregiver. Stroke survivors received an average of 10 hours of additional care per week compared with demography- and comorbidity-matched controls (22.3 hours versus 11.8 hours; P<0.01). We estimate that the average annual cost for caregiving for an elderly stroke survivor is ≈$11 300 or ≈$40 billion annually, for all elderly stroke survivors, of which $5000 per person, or $18.2 billion annually, is specific to stroke. Although stroke survivors are known to require considerable caregiving resources, our findings suggest that previous assessments may underestimate hours of care received and hence costs.

Caring for a child with Cerebral Palsy: The experience of Zimbabwean mothers.

BackgroundThe needs of caregivers of children with disability may not be recognized despite evidence to suggest that they experience increased strain because of their care-giving role. This strain may be exacerbated if they live in under-resourced areas.ObjectivesWe set out to establish the well-being of caregivers of children with Cerebral Palsy (CP) living in high-density areas of Harare, Zimbabwe. In addition, we wished to identify factors that might be predictive of caregivers’ well-being. Finally, we examined the psychometric properties of the Caregiver Strain Index (CSI) within the context of the study.MethodCaregivers of 46 children with CP were assessed twice, at baseline, and after three months, for perceived burden of care and health-related quality of life (HRQoL) using CSI and EQ-5D respectively. The psychometric properties of the CSI were assessed post hoc.ResultsThe caregivers reported considerable caregiver burden with half of the caregivers reporting CSI scores in the ‘clinical distress’ range. Many of the caregivers experienced some form of pain, depression and expressed that they were overwhelmed by the care-giving role. No variable was found to be associated with clinical distress. The CSI demonstrated good overall internal consistency (Cronbach's Alpha = 0.8), stability over time (Z = 0.87, p = 0.381) and was significantly and negatively correlated with the EQ-5D VAS (Spearman's rho = −0.33, p = 0.027), demonstrating concurrent validity.ConclusionCaregivers must be monitored routinely for their level of distress and there is an urgent need to provide them with support. The CSI is likely to be a valid measure of distress in this population.

Caregiving burden and health-promoting behaviors among the family caregivers of cancer patients

PurposeThe role of family caregivers in cancer care continues to expand, and it has been suggested that the caregiving influences health-promoting behaviors. The purpose was to describe the caregiving burden and health-promoting behaviors of the family caregivers of cancer patients and to determine the relationship between caregiving burden and health-promoting behaviors. MethodA cross-sectional descriptive study was conducted involving 227 family caregivers of adult cancer patients. Caregiving burden was measured using the Korean version of the Zarit Burden Interview (K-ZBI), and health-promoting behaviors were determined using structured questionnaires. ResultsConsiderable burden was experienced by the caregivers of cancer patients (K-ZBI score of 36.51 ± 12.54, mean ± SD). However, caregiving burden did not influence caregivers' physical activity, diet, smoking, alcohol consumption, or adherence to cancer screening tests. When the caregivers were compared to controls from the Korea National Health and Nutrition Examination Survey V utilizing adjusted proportions, caregivers were less likely to perform physical activities (16.0% vs. 29.1%, p < 0.001), but more likely to adhere to alcohol consumption recommendations (76.3% vs. 35.0%, p < 0.001) and receive cancer screening services for stomach (68.5% vs. 56.8%, p < 0.011), breast (81.4% vs. 58.8%, p < 0.001), and cervical cancer (75.3% vs. 55.0%, p < 0.001). ConclusionsThe caregivers of cancer patients reported considerable caregiving burden. However the burden was not associated with health-promoting behaviors. Physical inactivity among caregivers may require interventions to promote health of caregivers. Implications for practiceRelieving caregiving burden and improving caregivers' physical activities need to be considered as separate care issues in planning interventions for caregivers of cancer patients.

Caring for a loved one with Alzheimer's disease: views from the population about hiring a health care advocate.

Alzheimer's disease (AD) is associated with considerable caregiver and social burden. It is important to examine ways to minimize the negative effects of AD. Health care advocates (HCAs) may be one means of limiting the aversive effects of AD. Participants completed a short survey that assessed their perceptions of the impact of comorbid AD on health status and their likelihood of hiring an HCA to assist in managing it. A mediational model was proposed: cognitive status (AD vs cognitively healthy) was the independent variable, perception of severity was the mediator, and the probability of hiring an HCA was the dependent variable. The results indicated that the relationship between cognitive status and probability of hiring an HCA was fully mediated by perceptions of severity. This study demonstrated that participants appreciated the impact of AD on health status, and this translated into a greater probability of hiring an HCA.

Factors associated with strain in informal caregivers of stroke patients

Stroke is one of the most prevalent causes of adult disability and handicap. Informal caregivers play an important role in poststroke care. However, informal caregivers may experience strain, which threatens the recovery of stroke subjects. This study aimed to describe changes in strain experienced by informal caregivers from 3 to 6 months after the stroke, and identify the predicting factors. We recruited pairs of inpatients with ischemic stroke and informal caregivers from a tertiary referral hospital and interviewed them at 3 and 6 months after the stroke. Caregiver strain was evaluated using the Caregiver Strain Index (CSI), with a CSI ≥ 7 indicating considerable caregiver strain. Various factors associated with caregiver strain were analyzed using generalized estimating equations. Eighty-nine stroke patients and caregivers completed the study. Considerable strain was reported in 46% and 43% of the caregivers at the 3rd and 6th month, respectively. Patient factors such as severe disabilities (Barthel Index ≤ 60), poor cognition (Mini-Mental State Examination ≤ 23), depression (Beck Depression Inventory [BDI] ≥ 10), and recurrent stroke were predictors for caregiver strain. Caregiver factors, such as changed employment status, help from formal caregivers, and depression (BDI ≥ 10) were also associated with considerable caregiver strain. Nearly 50% of caregivers experienced considerable strain. Interventions aimed at reducing the caregivers' strain should focus on enhancing the functional and emotional status of stroke subjects, prevention of recurrent stroke, and efficient management of depression symptoms in caregivers.

Spouse caregivers of kidney transplant patients: quality of life and psychosocial outcomes

Most kidney transplant programs require patients to identify a primary caregiver who can assist them throughout the transplant process. Little is known about the quality of life, caregiving strain, and psychosocial functioning of these caregivers. To characterize the psychosocial functioning of spouse/partner caregivers. Cross-sectional survey administered to spouse/partner caregivers of patients before (n=33) and after (n=46) kidney transplantation at a transplant center in New England. Quality of life, life satisfaction, caregiving strain and benefit, mood, and social intimacy. Relative to normative samples and published data involving other transplant caregivers, caregivers of kidney transplant patients had favorable quality of life, life satisfaction, psychological, and social intimacy outcomes. Life satisfaction scores were significantly lower for caregivers before than after kidney transplantation, but otherwise the 2 cohorts did not differ significantly from each other. Most caregivers both before and after kidney transplantation reported clinically high levels of caregiving strain, as well as several caregiving benefits. Our data are consistent with results of other studies in showing that spouses experience considerable caregiving strain both before and after transplantation. However, caregivers of kidney transplant patients overall have good quality of life, life satisfaction, mood, and social intimacy. More prospective research is necessary to characterize better how these outcomes change over time throughout the transplant process.

Spouse Caregivers of Kidney Transplant Patients: Quality of Life and Psychosocial Outcomes

Most kidney transplant programs require patients to identify a primary caregiver who can assist them throughout the transplant process. Little is known about the quality of life, caregiving strain, and psychosocial functioning of these caregivers. To characterize the psychosocial functioning of spouse/partner caregivers. Cross-sectional survey administered to spouse/partner caregivers of patients before (n=33) and after (n=46) kidney transplantation at a transplant center in New England. Quality of life, life satisfaction, caregiving strain and benefit, mood, and social intimacy. Relative to normative samples and published data involving other transplant caregivers, caregivers of kidney transplant patients had favorable quality of life, life satisfaction, psychological, and social intimacy outcomes. Life satisfaction scores were significantly lower for caregivers before than after kidney transplantation, but otherwise the 2 cohorts did not differ significantly from each other. Most caregivers both before and after kidney transplantation reported clinically high levels of caregiving strain, as well as several caregiving benefits. Our data are consistent with results of other studies in showing that spouses experience considerable caregiving strain both before and after transplantation. However, caregivers of kidney transplant patients overall have good quality of life, life satisfaction, mood, and social intimacy. More prospective research is necessary to characterize better how these outcomes change over time throughout the transplant process.

ACNP White Paper: Update on Use of Antipsychotic Drugs in Elderly Persons with Dementia

In elderly persons, antipsychotic drugs are clinically prescribed off-label for a number of disorders outside of their Food and Drug Administration (FDA)-approved indications (schizophrenia and bipolar disorder). The largest number of antipsychotic prescriptions in older adults is for behavioral disturbances associated with dementia. In April 2005, the FDA, based on a meta-analysis of 17 double-blind randomized placebo-controlled trials among elderly people with dementia, determined that atypical antipsychotics were associated with a significantly (1.6-1.7 times) greater mortality risk compared with placebo, and asked that drug manufacturers add a 'black box' warning to prescribing information for these drugs. Most deaths were due to either cardiac or infectious causes, the two most common immediate causes of death in dementia in general. Clinicians, patients, and caregivers are left with unclear choices of treatment for dementia patients with psychosis and/or severe agitation. Not only are psychosis and agitation common in persons with dementia but they also frequently cause considerable caregiver distress and hasten institutionalization of patients. At the same time, there is a paucity of evidence-based treatment alternatives to antipsychotics for this population. Thus, there is insufficient evidence to suggest that psychotropics other than antipsychotics represent an overall effective and safe, let alone better, treatment choice for psychosis or agitation in dementia; currently no such treatment has been approved by the FDA for these symptoms. Similarly, the data on the efficacy of specific psychosocial treatments in patients with dementia are limited and inconclusive. The goal of this White Paper is to review relevant issues and make clinical and research recommendations regarding the treatment of elderly dementia patients with psychosis and/or agitation. The role of shared decision making and caution in using pharmacotherapy for these patients is stressed.

Stress among the family caregivers of liver transplant recipients

Family members of liver transplant patients continue caregiving activities for a lengthy period after transplantation. To assess the effect of stress-related factors on psychological distress and perceived health of family caregivers of liver transplant recipients. Twenty-four caregivers of liver transplant recipients treated at a liver unit serving the northern part of Israel. Pearlin's caregiving stress questionnaire was administered to assess the subscales of patients' symptoms as perceived by caregivers, caregiving activities, perceived overload, relational deprivation, personal gain, and social support; also, a depression questionnaire and a perceived caregivers' health questionnaire were administered to participants. Caregivers experienced considerable caregiving overload. Women reported performing more caregiving activities, higher perceived overload, and higher level of depression than men. Increasing passage of time since transplantation, higher perceived overload, higher sense of relational deprivation, and lower sense of personal gain were significantly associated with higher level of depression and worse perceived health. Perceived support and level of depression were not significantly associated with perceived health. Caregiving stress endures after transplantation. Professional intervention is needed to improve caregivers' quality of life and, consequently, that of transplant recipients as well.