Analysis of burden in caregivers of people with Alzheimer’s disease using self-report and supervision hours

Objectives

This study aimed to describe the baseline characteristics of informal carers of community-living Alzheimer’s disease (AD) patients by AD severity group and to identify factors associated with two measures of caregiver burden.

Design and setting

GERAS is a prospective observational study in France, Germany, and the UK, designed to assess costs and resource use associated with AD, for patients and their caregivers, stratified by disease severity.

Participants

1497 community-dwelling AD patients and their primary caregivers.

Measurements

Subjective caregiver burden assessed using the Zarit Burden Interview [ZBI] and time spent supervising patients (an objective measure of burden recorded using the Resource Utilization in Dementia instrument) during the month before the baseline visit were recorded. Separate multiple linear regression analyses using ZBI total score and caregiver supervision time as dependent variables were performed to identify patient and caregiver factors independently associated with caregiver burden.

Results

Increasing AD severity was associated with both subjective caregiver burden (ZBI total score) and overall caregiver time, which includes supervision time (both p<0.001, ANOVA). Better patient functioning (on instrumental activities of daily living) was independently associated with both a lower ZBI total score and less supervision time, whereas higher levels of caregiver distress due to patient behavior were associated with greater caregiver burden. Other factors independently associated with an increased ZBI total score included younger caregiver age, caregiver self-reported depression, caring for a male patient, and longer time since AD diagnosis. Caregivers living with the patient, being a male caregiver, patient living in a rural location, higher patient behavioral problem subdomain scores for apathy and psychosis, more patient emergency room visits, not receiving food delivery and receiving financial support for caregiving were all associated with greater caregiver supervision time.

Conclusion

Our results show that subjective caregiver burden and caregiver time are influenced by different factors, reinforcing the need to consider both aspects of caregiving when trying to minimize the burden of AD. However, interventions that minimize caregiver distress and improve patient functioning may impact on both subjective and objective burden.     

Relationship between Mastery and Caregiving Competence in Protecting against Burden,Anxiety and Depression among Caregivers of Frail Older Adults

Objective

Studies suggest the protective effect of mastery and caregiving competence against psychological stressors of caregiving in the context of dementia, although the interplay between the two with caregiver outcomes is not well understood. This study examines the independent and moderating impact of mastery and caregiving competence on burden, anxiety and depression among caregivers of older adults with frailty-related care needs.

Design, Setting and Participants

This is a cross-sectional study of 274 older adults-family caregiver dyads from a hospital in Singapore. Mean ages of the older adults and their caregivers were 85 and 59 years respectively.

Measurements

We performed hierarchical linear regression models to examine the independent influence of mastery and caregiving competence on caregiver burden, anxiety and depression. We also examined the interaction effect between mastery and caregiving competence for each outcome.

Results

Mastery and caregiving competence were independently negatively associated with caregiver burden, anxiety and depression. Mastery explained more variance than caregiving competence and had a stronger correlation with all outcomes. There was a statistically significant interaction between mastery and caregiving competence for depression (interaction term beta=.14, p<0.01), but not burden and anxiety. High levels of mastery are associated with less depression. particularly among caregivers with below-average levels of caregiving competence. Likewise, high levels of caregiving competence are associated with less depression. particularly among caregivers with below-average levels of mastery.

Conclusion

Our findings suggest potential benefits adressing targeted interventions for mastery and caregiving competence of caregivers to older adults as they independently influence caregiver outcomes and moderate each other’s effect on depression. Mastery-based interventions should be incorporated into current caregiver training which traditionally has focused on caregiver competence alone.

     

Emotional demands and the risks of depression among homecare workers in the USA

Purpose

Homecare workers’ diversity of emotional demands and their relation to mental health problems have not yet been fully explored. The purpose of this study is to investigate the types of emotional demands on homecare workers and the association of these demands with depression.

Method

Data were collected from two surveys of a random sample of 1,599 homecare workers (June 2003–September 2003 and December 2003–February 2004). Depression was assessed using a 20-item RCES-D screening scale.

Results

Homecare workers appeared to have a variety of emotional demands: unfair treatment, client’s family abuse, unmet care needs, client health, and emotional suppression. In general, homecare workers were more likely to be exposed to their client health and emotional suppression (mean scores = 1.46–3.07) than to be exposed to unmet care needs, unfair treatment, and client’s family abuse (mean scores = 1.02–1.38). After adjusting for potential confounders, four emotional-demand factors (excluding the client health factor) were significantly associated with a high risk of subthreshold depression at Wave 1. In particular, the factor “unmet care needs” was an essential predictor of 6-month subthreshold depression at Wave 2.

Conclusion

This study illustrated the diversity of emotional demands among homecare workers and their association with depression. Our mixed findings regarding the cross-sectional and longitudinal analyses suggested that further research should refine the measurement of emotional demands and their relationship with mental health among homecare workers.     

The role of sense of community belonging on unmet health care needs in Ontario,Canada: findings from the 2012 Canadian community health survey

Aim

This article examines the association between sense of community belonging and unmet health-care needs among individuals in Ontario, Canada, after adjusting for predisposing, enabling, and need factors associated with health-service use.

Subjects and methods

This study is based on data from Statistics Canada’s 2012 Canadian Community Health Survey. A sample of 21,257 individuals aged 12 and older was analyzed. Logistic regression was conducted to examine the association between sense of community belonging and unmet health-care needs.

Results

The study found that one in ten individuals reported having unmet health-care needs. Sense of community belonging had a significant independent effect on unmet health-care needs. Respondents with a weak sense of community belonging were 1.27 times more likely to report having unmet health-care needs. Respondents who were younger, were females, had a higher education, or were without a regular doctor were more likely to have unmet health-care needs. Other factors associated with unmet health-care needs included poor physical health, poor mental health, difficulties in carrying out instrumental activities of daily living, and chronic conditions.

Conclusion

The findings of this study emphasize the need to develop health-care policies and programs that appropriate and meet the needs of individuals with different health-related problems alongside the need to increase sense of community belonging.     

Poor self-rated health associated with an increased risk of subsequent development of lung cancer

Purpose

Self-rated health has shown to be a strong predictor of mortality and some major chronic diseases. The purpose of this study was to investigate whether poor self-rated health also was related to an increased risk of subsequent development of cancer.

Methods

Information on self-rated health, life-style factors, and other health-related risk factors was ascertained in a cohort of 25,532 persons participating in the Hordaland Health Study in 1997–1999. Information on development of cancer during 10 years of follow-up was obtained from the Norwegian Cancer Registry. The relationship between self-rated health and development of cancer was examined using Cox regression analysis adjusting for smoking and other life-style factors.

Results

Respondents reporting a poor health showed a non-significant increased risk of overall cancer. Sub-analysis of the four most common types of cancer showed a statistically significant association between self-rated health and lung cancer. The adjusted hazard ratio was 3.88 (95 % CI; 0.99, 15.8) for those rating their health as poor compared to very good (p for trend = 0.038). For the other types of cancer, we found a non-significant elevated risk associated with poor self-rated health.

Conclusion

Respondents who perceive their health as poor had an increased risk of developing lung cancer also after adjusting for smoking. This suggests that self-rated health reflects a broad range of factors important for development of this cancer type. Nevertheless, due to the explorative analysis of the specific cancer types, these findings need to be repeated before elaborate interpretations can be made.     

Do social relations explain health inequalities? Evidence from a longitudinal survey in a changing eastern German region

Objectives

This study explores the contribution of social relations to explain inequalities in self-rated health in a changing north-eastern German region. So far, there are only few studies that analysed the mediating effects of social relations in a longitudinal design.

Methods

We used data from the Study of Health in Pomerania (SHIP) consisting of 3,300 randomly selected men and women at baseline (2001), and at the 5-year follow-up (2006). Indicators of social inequality were education, equivalent household income and occupational status. Social relations were estimated by the Social Integration Index (SII) and the perceived instrumental and emotional support. Self-rated general health was assessed at both waves of data collection.

Results

Depending on the indicators used, social relations explain up to 35% of the inequalities in self-rated health. Changes in odds ratios are slightly more pronounced when education and income are used as inequality indicator and when adjusting for the SII.

Conclusions

Overall findings suggest that social relations are an important explanatory factor for health inequalities in a deprived German region.     

Factors associated with subjective quality of life in Korean patients with depressive disorders: the CRESCEND study

Purpose

A number of studies suggest that depression is associated with the significant disability and the poorer subjective quality of life (QOL). We aimed to assess subjective QOL in Korean patients with depression and explore the factors (sociodemographic characteristics and clinical features) associated with subjective QOL.

Methods

We obtained the data from 808 depressive patients who entered the Clinical Research Center for Depression (CRESCEND) study and evaluated the relationship between subjective QOL and personal sociodemographics, and various clinical features, including depressive severity, and subjective QOL. We assessed subjective QOL using the 26-item abbreviated version of the World Health Organization Quality of Life (WHOQOL-BREF) instrument.

Results

Decrements in patients?? physical health, psychological health, social relationships, and environment domains of subjective QOL were all strongly associated with the greater depressive symptom severity. After controlling for age and depressive symptom severity, the lower subjective QOL was independently related to being divorced or separated, the less monthly household income, and having no religious practices.

Conclusion

Our results suggest the importance of sociodemographic characteristics in addition to symptoms for the understanding of subjective QOL in depressed patients. The prospective studies to compare the different treatments?? effects on various subjective QOL domains are needed.     

Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial

Background

Partners of patients with heart failure provide both practical and emotional support. Many partners assume caregiving responsibilities without being aware of the burden related with this role.

Objective

Our work has established that a psycho-educational intervention has benefits at 3, but not at 12 months for patients with heart failure. Further we had not described the long-term effects in caregivers. This study aimed to determine the 24-months effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure and study factors associated with a change in caregiver burden.

Design

A randomized controlled study design, with a follow-up assessment after 24 months.

Setting and participants

Partners to patients with heart failure were recruited from two hospitals in the southeast of Sweden.

Intervention

A three session nurse-led psycho-educational program was tested and included psychosocial support to maintain the partners’ physical and mental functions, and perceived control. Several instrument were used to measure caregiver burden, perceived control, physical and mental health, depression and morbidity.

Results

One hundred fifty-five partners were included. There were no significant differences in any index of caregiver burden or morbidity among the partners in the intervention and control groups after 24 months. Overall, the mean total caregiver burden was found to be significantly increased compared to baseline (36 ± 12 vs 38 ± 14, p < 0.05). A younger partner, less comorbidity, higher levels of perceived control, better physical health and less symptoms of depression in patients, and better mental health in the partners were factors associated with absence of increased caregiver burden over time.

Discussion and conclusion

Our intervention did not significantly decrease caregiver burden or morbidity. Over time, several aspects of burden increased in both groups. To improve outcomes, individualized and targeted interventions might be beneficial.

Registered on ClinicalTrials.gov Identifier

NCT02398799.

     

Impact of depression on quality of life in people living with human T cell lymphotropic virus type 1 (HTLV-1) in Salvador, Brazil

Purpose

A previous study found the prevalence of depression in HTLV-1-infected patients to be approximately 30%, but few studies have attempted to correlate depression with quality of life (QOL) in these patients. The present study investigates the association between depression and QOL in people living with HTLV-1.

Methods

A clinical-epidemiological questionnaire, the Mini International Neuropsychiatric Interview and the WHOQOL-Bref were applied to 88 HTLV-1-infected patients (32 with TSP/HAM) at the HTLV Center of the Bahiana School of Medicine and Public Health, Salvador, Brazil.

Results

The prevalence of depression among people living with HTLV-1 was 34.1%. Depression was significantly associated with a poor QOL in the physical, psychological, social relationship and environment domains, when controlling for other variables, such as gender, age, time of knowledge of serological diagnosis and presence of tropical spastic paraparesis/HTLV-1associated myelopathy (TSP/HAM). Moreover, patients with TSP/HAM experienced a reduction in their QOL in the physical, psychological and environment domains.

Conclusion

Our results showed that depression negatively affects the quality of life of people living with HTLV-1, regardless of the presence of TSP/HAM. Since it is possible to improve a patient??s QOL by treating depression, psychological evaluations are strongly recommended as a measure to integrate the treatment protocols of HTLV-1 intervention programs.     

The impact of being the intermediate caring generation and intergenerational transfers on self-reported health of women in Ireland

Objectives

To investigate the associations with being the “sandwich generation” in older women in Ireland and its impact on self-reported health.

Methods

Analysis of 3,196 women from wave 1 of the Irish Longitudinal Study on Ageing (TILDA) was undertaken. Poisson regression was used to determine whether intergenerational transfers, were associated with self-rated physical health and depression, when controlling for other socio-demographic variables.

Results

Multivariate analysis found that women in the sandwich generation who financially supported their children had better self-rated physical health (poor/fair health relative to excellent; RR 0.84, 95 % CI 0.72–0.97). Conversely, the women who provided other care for their children showed evidence of poorer mental health (case-level depression, RR 1.35, 95 %CI 1.05–1.73). Providing financial support for parents was associated with case-level depression (RR 2.21, 95 %CI 1.26–3.86).

Conclusions

Supporting two generations was associated with both better self-rated health and poorer mental health, depending on the type and direction of the transfers. This generation of women have substantial caring responsibilities. Strategies to address the stresses associated with bi-directional intergenerational transfers are needed.     

Demographic and clinical characteristics associated with quality of life in patients with chronic obstructive pulmonary disease

Purpose

Despite an increasing interest in the relationships among multiple symptoms and quality of life (QOL), little known about the association between anxiety, depression, and pain and both disease-specific and generic QOL in patients with chronic obstructive pulmonary disease (COPD).

Methods

In a cross-sectional study of 100 COPD patients, disease-specific QOL was measured by St. George’s Respiratory Questionnaire and generic QOL by the QOL scale. Anxiety and depression were evaluated using the Hospital Anxiety and Depression Scale, and pain was assessed with a numeric rating scale.

Results

Of the 100 patients, 31 % reported clinically meaningful anxiety, 13 % depression, and 45 % reported the presence of pain. Younger patients (p = 0.02) and those with higher anxiety scores (p = 0.02) reported worse disease-specific QOL. Patients with lower physical function (p = 0.04) and those with higher depression scores (p < 0.001) reported worse generic QOL. Age, comorbidity, physical function, anxiety, depression, and pain explained 19.2 and 49.6 % of the variance in disease-specific and generic QOL scores, respectively.

Conclusions

Findings from this study suggest that the relationships between patient characteristics and common symptoms and QOL differ when disease-specific and generic measures of QOL are evaluated. Additional research is warranted to confirm these findings in COPD patients. Clinicians need to evaluate these common symptoms when planning and implementing symptoms management interventions to improve COPD patients’ QOL.     

Förderung der kindlichen Entwicklung durch Frühe Hilfen?

Background

A primary goal of early childhood interventions is to enhance child development through fostering parental competencies in socially disadvantaged mothers.

Method

The preliminary effects of the home visiting program “Pro Kind” were analyzed using a longitudinal randomized control group design. By the end of 2009, 755 high-risk primiparae had been enrolled. Self-rated maternal competencies as well as the cognitive development of the children assessed with the Bayley Scales of Infant Development (BSID)-II were analyzed.

Results

Interim analyses showed first positive treatment effects on self-rated maternal competen­cies as well as on cognitive development in children under 3 years old. However, higher self-ratings of maternal competencies did not explain the better cognitive development of the child.

Conclusion

“Pro Kind” as an early childhood intervention seems to contribute positively to children’s cognitive development in socially disadvantaged families. Clinical and research implications of biased maternal self-perceptions are discussed.     

Health-related quality of life in the aftermath of child maltreatment: follow-up study of a hospital sample

Objective

In the aftermath of child maltreatment or neglect, the health-related quality of life (HRQoL) in children is likely to be affected. However, research on quality of life in maltreated children is lacking. The aim of this study is to compare the HRQoL in a follow-up sample of children referred to an interdisciplinary hospital child protection team (CPT) to match controls and to explore correlates of HRQoL.

Method

Of the 319 in- and outpatient children referred to the CPT at the University Children’s Hospital Zurich between 2005 and 2006, an eligible sample of 180 children was contacted for a follow-up. HRQoL was assessed for 42 former patients using the self- and proxy-rated KIDSCREEN-27 for children above the age of 6 years and the TAPQOL parent report for children younger than 6 years. HRQoL-scores in the maltreatment group were compared with HRQoL in 39 matched controls.

Results

Self-reported HRQoL in maltreated children above the age of 6 years was significantly impaired compared to matched controls. The caregiver-rated HRQoL of maltreated children, however, was not affected. Low socioeconomic status and number of life events were associated with impaired self-reported HRQoL. Analyzed together with these factors, maltreatment lost its predictive power on HRQoL.

Conclusion

Maltreated children and adolescents suffer from impaired HRQoL even after the maltreatment has been disclosed and targeted by interventions. The impact of socioeconomic environment reinforces the importance of a multidisciplinary and systemic approach to maltreatment as applied by the CPT. Although the nature of discordance between child and caregiver report is not known, researchers and clinicians are strongly encouraged to assess the victim’s self-reported HRQoL independently of their proxies’ view.     

The impact of HIV status, HIV disease progression, and post-traumatic stress symptoms on the health-related quality of life of Rwandan women genocide survivors

Purpose

We examined whether established associations between HIV disease and HIV disease progression on worse health-related quality of life (HQOL) were applicable to women with severe trauma histories, in this case Rwandan women genocide survivors, the majority of whom were HIV-infected. Additionally, this study attempted to clarify whether post-traumatic stress symptoms were uniquely associated with HQOL or confounded with depression.

Methods

The Rwandan Women’s Interassociation Study and Assessment was a longitudinal prospective study of HIV-infected and uninfected women. At study entry, 922 women (705 HIV+ and 217 HIV?) completed measures of symptoms of post-traumatic stress and HQOL as well as other demographic, clinical, and behavioral characteristics.

Results

Even after controlling for potential confounders and mediators, HIV+ women, in particular those with the lowest CD4 counts, scored significantly worse on HQOL and overall quality of life (QOL) than did HIV? women. Even after controlling for depression and HIV disease progression, women with more post-traumatic stress symptoms scored worse on HQOL and overall QOL than women with fewer post-traumatic stress symptoms.

Conclusions

This study demonstrated that post-traumatic stress symptoms were independently associated with HQOL and overall QOL, independent of depression and other confounders or potential mediators. Future research should examine whether the long-term impact of treatment on physical and psychological symptoms of HIV and post-traumatic stress symptoms would generate improvement in HQOL.     

How to measure quality of life in shared-housing arrangements? A comparison of dementia-specific instruments

Purpose

The appropriateness of existing quality of life (QoL) instruments in small-scale, homelike care facilities for people with dementia is as yet unknown. This study evaluated the psychometric properties of three QoL instruments in German shared-housing arrangements (SHA).

Method

A cross-sectional study was conducted in 36 SHA in Berlin to evaluate the acceptability, internal consistency, and validity (construct, convergent, and discriminant) of three QoL instruments: Alzheimer’s Disease Related Quality of Life (ADRQL), Quality of Life–Alzheimer’s Diseases (QoL-AD), and measuring QUAlity of LIfe in DEMentia (QUALIDEM).

Results

A total of 104 residents (mean age 79.0 years, 73 % female) were included. All instruments showed good acceptability, with QUALIDEM the best. Adequate levels of internal consistency for the ADRQL and QoL-AD and most of the QUALIDEM domains were found. Validity of all the instruments measuring QoL was confirmed.

Conclusions

Study findings suggest that QUALIDEM is the preferred instrument to evaluate QoL of residents in SHA, especially due to the high acceptability. Further research is needed to develop and improve these existing measurements.     

Quality of life in panic disorder: looking beyond symptom remission

Purpose

Panic Disorder (PD) is a classic example of a disease where symptom remission may be achieved, yet patient quality of life (QOL) remains low, providing further support for the need to measure QOL as an additional outcome in patient care. The objectives of this review are to examine the substantial QOL impairments in PD and to determine whether modern treatments for PD, which have been proven to achieve symptom remission, have been shown to restore QOL.

Methods

We identified studies on QOL in PD from 1980 to 2010 by searching MEDLINE, PsycINFO, and PubMed databases.

Results

The literature reveals substantial QOL impairments in PD, often resulting in poor sense of health, frequent utilization of medical services, occupational deficiency, financial dependency, and marital strife. Modern therapies have been demonstrated to achieve symptom remission and improve QOL in PD; however, post-treatment QOL is still significantly lower than community averages.

Conclusions

QOL needs to be added as an essential outcome measure in patient care. Further research should be conducted to better understand the nature of comorbidities in PD as well as to determine whether additional interventions that have been studied in other psychiatric disorders, such as exercise, meditation, yoga, humor, massage, and nutritional supplements, can be utilized to improve QOL in PD to normal community levels.     

Condition-specific quality of life questionnaires for caregivers of children with pediatric conditions: a systematic review

Purpose

Childhood illness or disability can affect the quality of life (QoL) of the child’s primary caregiver. Our aim was to identify, describe the content and systematically review the psychometric properties of condition-specific QoL questionnaires for caregivers of children.

Methods

Medline, PsycInfo, Embase, CINAHL, and the Cochrane library databases were searched from 1 January 1990 to 30 June 2011. Articles related to the development and measurement of caregiver QoL were screened to identify condition-specific questionnaires. The characteristics of the questionnaires were extracted, and their psychometric properties were evaluated using the consensus-based standards for the selection of health measurement instruments checklist with 4-point scale.

Results

We identified 25 condition-specific caregiver QoL questionnaires covering 16 conditions. Conditions included atopic dermatitis, asthma, diabetes, oro-facial disorders, and two acute illnesses. Questionnaires were developed predominantly in high-income countries. Questionnaires had the highest quality rating for content validity, followed by hypothesis testing. Methodological quality was satisfactory for criterion validity; fair in reliability and responsiveness; and poor in internal consistency and structural validity.

Conclusions

The increasing number of questionnaires developed over time shows improved recognition of the importance of caregiver QoL. There is a paucity of QoL questionnaires for caregivers of otherwise healthy children suffering from physical injuries and acute conditions associated with significant caregiver burden. Cultural validation of existing and new questionnaires in lower-income countries is necessary. Data collected by condition-specific questionnaires can assist clinicians and health economists in estimating caregiver burden and the types of healthcare services caregivers require and may be useful for healthcare administrators to evaluate interventions.     

Exploring the individual patterns of spiritual well-being in people newly diagnosed with advanced cancer: a cluster analysis

Purpose

Research shows that spiritual well-being correlates positively with quality of life (QOL) for people with cancer, whereas contradictory findings are frequently reported with respect to the differentiated associations between dimensions of spiritual well-being, namely peace, meaning and faith, and QOL. This study aimed to examine individual patterns of spiritual well-being among patients newly diagnosed with advanced cancer.

Methods

Cluster analysis was based on the twelve items of the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale at Time 1. A combination of hierarchical and k-means (non-hierarchical) clustering methods was employed to jointly determine the number of clusters. Self-rated health, depressive symptoms, peace, meaning and faith, and overall QOL were compared at Time 1 and Time 2.

Results

Hierarchical and k-means clustering methods both suggested four clusters. Comparison of the four clusters supported statistically significant and clinically meaningful differences in QOL outcomes among clusters while revealing contrasting relations of faith with QOL. Cluster 1, Cluster 3, and Cluster 4 represented high, medium, and low levels of overall QOL, respectively, with correspondingly high, medium, and low levels of peace, meaning, and faith. Cluster 2 was distinguished from other clusters by its medium levels of overall QOL, peace, and meaning and low level of faith.

Conclusions

This study provides empirical support for individual difference in response to a newly diagnosed cancer and brings into focus conceptual and methodological challenges associated with the measure of spiritual well-being, which may partly contribute to the attenuated relation between faith and QOL.