Psychological well-being over time among informal caregivers caring for persons with dementia living at home

Objectives: To investigate informal caregivers’ psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors.

Method: A cohort study at baseline and 3 months’ follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed.

Results: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers’ increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers’ psychological well-being.

Conclusion: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers’ psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers’ psychological well-being, and provide proper care and treatment for caregivers and PwDs.     

Sexual satisfaction and body image: a cross-sectional study among Norwegian young adults

Objective: To study the relationship between age, gender, body mass index (BMI), body image, and perceived intimacy with partner and sexual satisfaction in young Norwegian adults.

Methods: A questionnaire survey was completed online by 27.2% (n = 568) of a representative national web sample of 2,090 persons aged 18–29 years.

Results: Women were more dissatisfied with their body than men and BMI increased with age. A negative body image correlated with BMI, particularly among women. There was no gender difference in reported sexual satisfaction and perceived intimacy with partner. The most important direct path leading to increased sexual satisfaction was from perceived intimacy with partner, followed by body image and age. By influencing body image, BMI, and gender influenced sexual satisfaction indirectly. Being male increased the likelihood of having a positive body image, which in turn increased the likelihood of reporting being sexually satisfied. Additionally, a lower BMI increased the likelihood of being satisfied with one's body, which in turn increased sexual satisfaction.

Conclusion: Body image is clearly related to sexual satisfaction, particularly in women. However, body image is not associated with the perception of intimacy with one's partner, which is the most important factor for feeling sexually satisfied.     

Caregiver depression is associated with a low sense of coherence and health-related quality of life

Objectives: The main objective is to examine the sense of coherence (SOC) of spouse caregivers. The aim was further investigate the association of SOC, health-related quality of life (HRQoL), depressive symptoms, distress and how severity of Alzheimer's disease (AD) affects SOC.

Method: 17O patient–spouse caregiver dyads in which the patient has recently diagnosed mild AD. Caregivers completed SOC scale (SOC-29), HRQoL (15D), Beck depression and general health questionnaire scale. The assessment of AD-related symptoms was made using mini mental state examination, clinical dementia rating, neuropsychiatric inventory and functional performance using activities of daily living (ADCS-ADL) scale.

Results: Male caregivers’ SOC was significantly higher than female caregivers. The main predictor for low SOC was depression, with 37% of spousal caregivers reporting depressive symptoms. Women reported more depressive symptoms and distress. Caregivers’ HRQoL was as high as 0.8714, and a significant correlation was found between SOC and depression, r = ?0.632 and distress r = ?0.579. Furthermore, significant correlations were found between HRQoL and depression (r = ?0.572) and distress (r = ?0.568). The main predictors for high HRQoL were female gender and low distress.

Conclusion: Spouse caregivers with low SOC seem to be a vulnerable group of caregivers. The many negative effects of perceived health accumulate in these caregivers during the very early phases of the caregiving process. Vulnerable caregivers need to be recognized at the time of AD diagnosis so that they can receive psychological support and counselling in addition to prevent morbidity in these caregivers.     

Burden on caregivers of older patients with bipolar disorder

Objectives: Available data suggest high burden on caregivers of patientswith bipolar disorder (BD), yet the well-being of patients with BD increasingly depends on family members, partners and close friends. Aspatients with BD get older, the need for informal care may shift. We aimed to describe the caregivers of older adults with BD (OABD) and explore what patients' and caregivers' characteristics are associated with caregiver burden.

Method: Forty-seven caregivers of OABD were questioned about their perceived burden and depressive symptoms. Linear regression analyses were performed to examine the influence of various patients' and caregivers' characteristics on caregiver burden or depression.

Results: More than half of all caregivers experienced some degree of burden,and 6.4% reported depressive symptoms. The number of psychiatric admissions and social functioning were the only patients' characteristics associated with higher burden. Caregiver burden was significantly associated with caregiver's other obligations. None of the patient or caregiver characteristics was significantly associated with depression in caregivers of OABD.

Conclusion: In OABD, even with few residual symptoms, more than half of all caregivers experience substantial burden. Future studies are needed to confirm if improving social functioning and preventing psychiatric hospitalizations decrease the burden on the caregivers of OABD.     

The stroke caregiving trajectory in relation to caregiver depressive symptoms,burden, and intervention outcomes

Background: Caregiver depression and burden have a detrimental effect on stroke survivors’ rehabilitation and are contributors to stroke survivors’ hospital readmission and institutionalization. The stroke caregiving trajectory is unique compared to other illnesses, and the effect of length of caregiving on stroke caregiver outcomes is poorly understood. Interventions can improve caregiver outcomes, but the optimal timing of these interventions is unclear.

Objectives: We sought to determine the relationship between: (1) length of caregiving and stroke caregiver depressive symptoms and burden, and (2) length of caregiving and amount of change in depressive symptoms and burden following the Resources and Education for Stroke Caregivers’ Understanding and Empowerment (RESCUE) intervention – an online and telephone problem-solving, education, and support intervention.

Methods: We analyzed retrospective data collected from 72 stroke caregivers who participated in the RESCUE intervention. Outcomes were caregiver depressive symptoms and burden. Data were analyzed using mixed-effects regression analysis.

Results: Baseline depressive symptoms and burden were both negatively related to length of caregiving (p < 0.05). We found significant improvement in caregiver depressive symptoms and burden following an intervention. The interaction between changes in outcomes and length of caregiving was not significant for either depressive symptoms (p = 0.26) or burden (p = 0.10).

Conclusions: This study contributes to the understanding of the relationship between length of caregiving and depression, burden, and intervention outcomes. Clinicians should recognize that the stroke caregiving trajectory can be nonlinear. Routine and repeated clinical assessment of caregiver well-being is needed, along with implementation of interventions when necessary, regardless of how much time has passed since the stroke.     

Predictors of caregiving burden: impact of subjective health,negative affect,and loneliness of octogenarians and centenarians

Objectives: This study aimed (1) to determine whether octogenarian and centenarian care recipients’ self-report on physical, social, and emotional status are different from caregivers’ reports, (2) to assess associations between octogenarian and centenarian care recipients’ poor physical, social, and emotional status and caregiver burden, and (3) to determine which report, the care recipients’ self-report or caregivers’ report, about the participants’ physical and emotional status predicted more accurately levels of caregiver burden.

Method: Self-ratings and caregiver informant ratings were obtained from 309 participants of the Georgia Centenarian Study. Care recipients’ health, negative affect, and loneliness were reported by both the caregivers and care recipients for the analyses. Differences between care recipients’ and caregivers’ reports were assessed by t-test. Blockwise multiple regression analysis was computed to assess predictors of caregiver burden.

Results: Caregivers’ reports on the three measures were significantly higher than self-reports. Caregivers’ negative affect and loneliness, not physical health, reported by caregivers predicted higher caregiver burden. Care recipients’ reports did not predict caregiver burden.

Conclusion: Caregivers perceived care recipients’ social and emotional status more negatively, and caregivers’ negative perceptions on care recipients’ well-being status were an important predictor of caregiver burden.     

Effects of marital closeness on the transition from caregiving to widowhood

Objective: To examine the effects of marital closeness on indicators of well-being (depressive symptoms, grief, and relief) as spouses transition from the role of caregiver to that of widowed person.

Methods: 118 spouses of persons with end stage renal disease were interviewed prior to and after the death of the patient. Spouses reported on marital closeness, multiple indicators of pre-death strain as reflected by subjective health, depressive symptoms, caregiving burden, and caregiving satisfaction, as well as post-loss feelings of grief, depression, and relief.

Results: Hierarchical regressions indicated that post-loss grief was predicted by gender (b = 0.32, p < 0.001), self-reported health (b = ?0.28, p < 0.01), marital closeness (0.22, p < 0.05), and pre-loss depressive symptoms (b = 0.19, p < 0.10). Caregiver burden (b = 0.28, p < 0.05) and marital closeness (b = ?0.41, p < 0.001) before the death, predicted relief from the caregiver role post-loss. Subjective health (b = ?0.21, p < 0.05) and pre-loss depressive symptoms (b = 0.47, p < 0.001) predicted change in depressive symptoms over time.

Conclusion: These data highlight differences in the experiences of grief, relief, and depressive symptoms and suggest that marital closeness plays a central role. Results are interpreted in terms of theory regarding marital quality. Implications for interventions to improve the lives of caregivers and newly widowed spouses are discussed.     

Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.     

Psychometric properties of the Valued Living Questionnaire Adapted to Dementia Caregiving

Objectives: Caring for a relative with dementia is associated with physical and emotional health problems in caregivers. There are no studies analysing the role of personal values in the caregiver stress process.

This study aims to analyse the psychometric properties of the Valued Living Questionnaire Adapted to Caregiving (VLQAC), and to explore the relationship between personal values and stressors, coping strategies and caregiver distress.

Method: A total of 253 individual interviews with caregivers of relatives with dementia were conducted, and the following variables were assessed: personal values, stressors, cognitive fusion, emotional acceptance, depression, anxiety, and satisfaction with life. An exploratory factor analysis and hierarchical regression analyses were carried out.

Results: Two factors were obtained, Commitment to Own Values and Commitment to Family Values which explain 43.42% of variance, with reliability coefficients (Cronbach's alpha) of .76 and .61, respectively. Personal values had a significant effect on emotional distress (depression and anxiety) and satisfaction with life, even when controlling for socio-demographic variables, stressors and coping strategies.

Conclusion: Results suggest that the personal values construct of dementia caregivers is two-dimensional. The personal values of the caregivers play an important role in accounting for distress and satisfaction with life in this population.     

A quasi-experimental design trial exploring the effect of a partnership intervention on family and staff well-being in long-term dementia care

Objectives: This study sought to explore the effect of the family involvement in care (FIC) intervention on family and staff well-being over a nine-month period in a long-term care (LTC) facility providing dementia care.

Method: A quasi-experimental design with randomised allocation of two LTC sites but not the participants was employed. Family caregivers (n?=?57) of residents with dementia and staff (n?=?59) from two LTC facilities in Queensland, Australia, were recruited. Participants were assessed once pre-intervention and three times post-intervention for knowledge, stress and satisfaction outcomes. Between-group and within-group effects were analysed using ANOVAs at <0.05 level of significance. Pre- and post-intervention interviews from a purposive sample of family caregivers were also conducted to enhance understanding of FIC benefits.

Results: Beneficial intervention effects associated with family caregivers’ knowledge of dementia were found (p?p?p?

Conclusion: Participation in the FIC intervention improved family caregiver knowledge. The major barrier to the success of the partnership intervention in achieving beneficial long-term psychosocial effects for family and staff caregivers was lack of resources and leadership required to support collaboration between family and staff, mainly due to environment and structural changes. This study contributes to our understanding of the importance of partnerships in promoting family involvement in dementia care.     

Worry about not having a caregiver and depressive symptoms among widowed older adults in China: the role of family support

Objectives: Using the stress-coping framework, this study examined whether worry about not having a caregiver in old age was associated with depressive symptoms among widowed Chinese older adults, including the moderating effects of self-perceived family support.

Method: Using a sample of 5331 widowed adults aged 60 years old or older from the 2006 National Sample Survey of the Aged Population in Urban/Rural China, we regressed measures of depressive symptoms on worry about not having a caregiver. We also tested moderation effects of family support.

Results: Individuals who were worried about not having a caregiver reported significantly higher levels of depressive symptoms. Feeling that their children are filial, having instrumental support from children, and having only daughters moderated the effects of worry about not having a caregiver on depressive symptoms.

Conclusion: Our findings indicate the detrimental effects of worry about not having a caregiver on the psychological well-being of widowed older adults. This study also highlights some forms of family support that may help reduce such negative effects of widowhood.     

Ethnicity,familism and willingness to care: Important influences on caregiver mood?

Objective: Few studies have to date examined the effects of ethnicity on caregiver motivations, coping responses and mood. This theoretically informed study uses the socio-cultural model of stress and coping to explore these relationships amongst a White-British and British South-Asian caregiver sample.

Method: A total of 235 primary family caregivers were recruited for a cross-sectional questionnaire survey; of which 162 were White-British and 73 were British South-Asian.

Results : British South-Asian caregivers differed from White-British caregivers on several variables within the stress-coping framework. British South-Asian caregivers were younger, had significantly higher levels of familism, used significantly more behavioural disengagement and religious coping and reported having significantly less support than White-British caregivers. White-British caregivers were more likely to make use of substances and humour as coping methods, and also in these caregivers, familism was significantly related to caregiver depression. Whilst levels of willingness to care did not differ between the two caregiver groups, opposing relationships were seen in the association between willingness to care and caregiver anxiety. Regression analyses found that self-blame explained a significant proportion of variance in South-Asian anxiety and depression, whereas depression amongst White-British caregivers was associated with high use of substances, low use of humour and low mean satisfaction with support.

Conclusion: These findings offer support to the socio-cultural model of stress and coping in that coping is associated with two outcomes (anxiety and depression), but motivational factors are also highlighted which have additional implications for the development of culturally specific interventions aimed at reducing caregiver distress.     

Caregiver burden assessed in dementia care networks in Germany: findings from the DemNet-D study baseline

Objectives: This paper aimed to describe the burden experienced by informal caregivers supporting a person with dementia (PwD) who lives at home and utilizes a dementia care network (DCN), to investigate the factors that are associated with caregiver burden, and to identify possible differences in caregiver burden among different types of DCNs.

Method: This study was part of a multi-center, interdisciplinary evaluation of DCNs in Germany (DemNet-D). Cross-sectional data were collected in face-to-face interviews with people with dementia (PwDs) and their caregivers, and 13 DCNs were represented. Standardized questionnaires were used to assess caregiver burden, challenging PwD behaviors, functional competence and caregiver health status. Based on qualitative data, four DCN governance types were used in a multivariate analysis of burden categories.

Results: There were 560 PwD-caregiver dyads enrolled in the study. Informal caregivers (n = 536) reported a low-to-moderate burden associated with PwD characteristics (instrumental activities of daily living, challenging behaviors) and caregiver characteristics (gender) as well as the relationship between the caregivers and PwDs. Women felt more burdened but also showed higher levels of personal development. No differences were observed among the different DCN governance types.

Conclusions: DCNs might contribute toward moderate to low caregiver burden. Indicators of positive caregiving aspects can be used by DCNs to advance support structures for informal caregivers drawing upon interventions already established for other community settings. Particular interest should be paid to female and spousal caregivers who might be in in need of greater and/or different kinds of support.     

Dispositional characteristics,relational well-being and perceived life satisfaction and empowerment of elders

Objectives: The broad purpose of this research is to identify the key modifiable variables most related to elders’ life satisfaction and empowerment in order to improve the efficacy of interventions projects. Our study aims to integrate the theoretical perspectives of personality and community psychology focusing both on dispositional characteristics and relational well-being of elders, investigating triads, composed by an elder, a paid caregiver and the most involved relative. This study explores the impact of (1) some socio-demographic characteristics of elders, (2) some modifiable dispositional variables of elders and (3) elders’ relational well-being on elders’ empowerment and life satisfaction.

Method: The study involved 429 people in 143 triads. Semi-structured interviews with elders, paid caregiver and close relatives were used to construct a new pilot measure of elders’ relational well-being. Life Satisfaction, Empowerment, Loneliness, Positivity, Humor and Emotions self-efficacy scales were also administered. Hierarchical multiple regressions were performed.

Results: Elders’ positivity, relational well-being of elders and living alone were significantly related to empowerment. Elders’ relational well-being and positivity significantly contributed to life satisfaction.

Discussion: Interventions to increase empowerment and life satisfaction should focus primarily on augmenting positivity and relational well-being integrating the theoretical premises of both personality and community psychology.     

Moderating effect of self-efficacy on the relation between behavior problems in persons with dementia and the distress they cause in caregivers

Introduction: Behavioral and psychological symptoms in dementia (BPSD) are the principal sources of stress in caregivers. The aim of the present work is to analyze the moderating effect of self-efficacy for managing BPSD on the distress these problems generate in family caregivers.

Method: The participants were 231 family caregivers of people with dementia. We assessed the frequency and caregiver distress associated with three dimensions of BPSD (depressive, disruptive and memory problems). In addition, we assessed the moderating effect of self-efficacy for dealing with BPSD in the relationship between the dementia patient's frequency of BPSD and caregiver distress through hierarchical regression analyses, one for each of the dimensions of BPSD.

Results: We found a moderating effect of self-efficacy on the relation between the frequency of BPSD and the distress in caregivers for the dimensions of depressive and disruptive behaviors. Caregivers having to deal with a high frequency of behavior problems but with high levels of self-efficacy presented significantly lower levels of distress associated with depressive and disruptive behavior problems compared to those caregivers with low levels of self-efficacy. No differences in the effects of self-efficacy were found for distress levels of caregivers who dealt with low frequency of BPSD. Also, we did not find a moderating effect of self-efficacy on the relation between the frequency of memory problems and caregivers’ distress.

Conclusions: The results suggest that self-efficacy for managing BPSD attenuates the relation between the frequency of behavior problems – both disruptive and depressive – and the distress they cause in caregivers.     

Assessing family caregiver skill in managing behavioral symptoms of Alzheimer's disease

Objectives: This measurement study operationalized family caregiver skill in managing behavioral symptoms associated with Alzheimer's disease (AD) by testing a Caregiver Assessment of Behavioral Skill-Self-Report (CAB-SR) measure.

Method: A cross-sectional design was used. Caregivers had a family member with possible/probable AD, resided at home with the care recipient and provided the majority of care (N?=?82). The mail-administered assessment included the CAB-SR and other care recipient and caregiver measures.

Results: Preliminary CAB-SR reliability and validity were determined using reliability, factor analytic and correlational procedures.

Conclusion: This measure provides a preliminary assessment of caregiver skill in managing behavioral symptoms of AD and shows promise for use in research and clinical intervention settings.     

Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers

Background: Self-efficacy is the belief that one can perform a specific task or behaviour and is a modifiable attribute which has been shown to influence health behaviours. Few studies have examined the relationship between self-efficacy for dementia-related tasks and symptoms of burden and depression in caregivers.

Methods: Eighty four patient/caregiver dyads with Alzheimer's disease were recruited through a memory clinic. Patient function, cognition and neuropsychiatric symptoms were assessed together with caregiver burden, personality, depressive symptoms, coping strategies and self-efficacy for completing tasks related to dementia care.

Results: 33% (28) of caregivers reported significant depressive symptoms (CES-D?≥?10). In multivariate analyses, caregiver burden was predicted by self-efficacy for symptom management, neuroticism, patient function and neuropsychiatric symptoms while caregiver depression was predicted by self-efficacy for symptom management, caregiver educational level, neuroticism, emotion-focused coping, dysfunctional coping and patient function. In patients with moderate to severe impairment (MMSE?≤?20), self-efficacy for symptom management behaved as a mediator between patient neuropsychiatric symptoms and symptoms of burden and depression in caregivers.

Conclusions: Further longitudinal investigation is warranted to determine if self-efficacy might be usefully considered a target in future interventional studies to alleviate symptoms of burden and depression in Alzheimer's caregivers.     

Expressive social support buffers the impact of care-related work interruptions on caregivers’ depressive symptoms

Objective: To assess if expressive and instrumental social support from family and friends moderate the association of care-related work interruptions (e.g. leaving work for the older adult's doctor appointment) with depressive symptoms among working family caregivers of older adults.

Methods: Data were from the Singapore Survey on Informal Caregiving (SSIC). A subsample of 662 dyads, each comprising an older care-recipient [home-dwelling Singaporean aged 75 and older receiving human assistance for at least one activity of daily living (ADL)] and his/her working family caregiver, was analysed. Caregiver depressive symptoms were assessed using the Center for Epidemiologic Studies Depression scale. Care-related work interruptions were scaled through the Mokken scaling procedure. Expressive social support was assessed using a scale by Pearlin and co-workers. Instrumental social support was based on the hours of ADL help provided to the care-recipient by any family member or friend, on behalf of the primary caregiver. A linear regression model, with interaction terms, assessed expressive and instrumental social support as moderators of the association of care-related work interruptions with caregiver depressive symptoms.

Results: More care-related work interruptions were associated with more caregiver depressive symptoms. And, this association was moderated by expressive, but not instrumental, social support.

Conclusion: Our findings conform to previous qualitative work suggesting that caregivers’ mental health may not benefit from instrumental support, but from receiving expressive support instead. Initiatives for improving the care experience of working caregivers of older adults should focus on promoting expressive support from their friends and family.     

Effects of home, outside leisure, social, and peer activity on psychological health among Japanese family caregivers

Objective: Previous research has indicated that informal caregivers’ personal activities are disrupted by their caregiving role, leading to psychological stress and lower life satisfaction. However, the extent to which engagement in personal activities affects caregivers’ psychological health remains unclear. This study examines the relationship between different types and frequencies of activities and both positive and negative parameters of the psychological health of caregivers.

Methods: A mail survey was conducted with 727 family caregivers of older persons using adult day-care services in the Tokyo metropolitan area. Perceived caregiver burden, care satisfaction, life satisfaction, and depression were used as psychological health outcomes. Engagement in home, outside leisure, social, and peer activities, as well as caregiver and care-recipient characteristics and caregiving situations, were assessed using a multivariate regression analysis.

Results: Engagement in home activities was related to lower scores on burden and depression and greater care satisfaction after controlling for care needs and caregiver characteristics, and social and peer activities were associated with greater life satisfaction. More frequent engagement was also associated with better psychological health, but a moderate involvement in home activities was most strongly associated with better care satisfaction. The amount of outside leisure activity was not significantly related to any of the outcomes.

Conclusion: This study shows that activity type and frequency are associated with caregivers’ psychological health, extending previous findings and providing practical implications for the support of family caregivers through programs to improve their participation in specific types of activities.