Stress, social support, and symptoms of depression in spouses of the medically ill

This study investigated the level and frequency of depressive symptoms in spouses of dialysis patients, as a function of a) severity of patient disease, b) level of stress experienced by the spouse, and c) perception of support from the ill partner. The subjects were forty patients who had begun dialysis in the last year and their spouses. Measures of depression, impact on family, perceived social support, and disease severity were applied. Significant depressive symptoms were reported by 20 percent of spouses. Symptom severity was not correlated with age, sex, or occupation of the spouses, nor with level of depression or functional impairment of the dialysis patients. The amount of social support received from the ill partner accounted for 37 percent of the variance in spouse depression, while social and financial stressors reported by the spouse explained 13 percent of the variance in spouse symptoms. These findings suggest that depressive symptoms in spouses of dialysis patients are associated with the social and economic consequences of the illness for the family but even more so with the amount of perceived support from the patient. The determinants of this perceived support need further exploration.     

Changes in habits related to self-care in dementia: the nursing home versus adult day care

Little is known about the changes that occur for older persons with dementia in the practice of self-care routines. This study assesses the concordance of past and current self-care practices of day care and nursing home persons using spouse reports, the degree of spouse awareness of these changes, and spouse perception of how important self-care practices had been to their partner. Participants were spouses of 12 older persons with dementia in day care and spouses of 20 nursing home residents. Self-care routines were assessed using the Self-maintenance Habits and Preferences in Elderly (SHAPE) questionnaire. Day care attendees showed few changes in self-care routines compared to nursing home residents. Spouses of nursing home residents underestimate the changes in self-care that occur with nursing home admission. The importance of being aware of self-care changes lies in the value of maintaining continuity with the customary preferences and routines of the older person.     

Psychosocial symptoms in children of hemodialysis patients

Serious somatic illness in a parent represents a risk factor for psychosocial abnormalities in children. In a cross sectional study 24 families with a parent undergoing hemodialysis and at least one child living at home were examined. Patients, their spouses, children up from age 11 as well as the nephrologists in charge of the dialysis treatment were interrogated. In the parental perspective of a symptom checklist (CBCL), the children on average did not have higher scores for psychosocial abnormalities than a normative sample. In the self-reporting perspective (YSR), however, the adolescents averaged clinically abnormal scores. The discrepancy between the parental and the children's self-reporting scores were significant, which indicates an underestimation of children's psychological stress by both parents. Case analysis revealed a concentration of abnormalities within a quarter of the sample. This smaller subgroup showed clinically relevant scores in psychosocial abnormalities in the parental perspective, too. Younger children and children with additional life stressors had higher scores in psychosocial abnormalities. Futhermore, children's problems were correlated with depressive symptoms in one or both parents, which indicates an increased risk for children's psychological maladaptation in cases of depressive maladjustment to the illness in the ill parent or his spouse. It is concluded that children at special risk should be identified as early as possible. When problems are detected, counselling support should be offered to affected families.     

The comparison of burden between caregiving spouses of depressive and demented patients

BACKGROUND: The opportunities for a depressive or demented elderly patient to live at home are dependent on the availability of support. If the spouse is alive, her or his resources to care for the patient are an essential option. In this study we compared the burden of the spouses of depressive and demented elderly patients admitted to the University Psychogeriatric Clinic. METHODS: The Zarit Burden Interview was used when comparing the burden between the groups. Psychological distress was screened by the 12-item General Health Questionnaire. The care and support given by the spouse was assessed by Involvement Evaluation Questionnaire. The spouse's stress related to the health state of the patient was evaluated by the Pearlin Caregiving Stress Inventory. Twenty-two spouses living with a depressive patient and 43 with a demented patient were included in the study. RESULTS: The spouses of demented patients as a group were psychologically more stressed than the spouses of depressive patients. However, when demented patients were divided into two groups, in those admitted mainly for noncognitive symptoms related to dementia and in those admitted for memory assessment and diagnostic purposes, the burden of the spouses in the former group was higher than that of the group of depressive patients' spouses. No difference was found between the latter group of demented patient spouses and depressive patients' spouses. Both the patients and the spouses in the demented group were older than those in the depressive group. However, no correlation was found between stress of the spouse and her or his own age or the age of the patient either within the depressive or within the demented group. As expected, the function level of demented patients was lower than that of depressive patients. A correlation was found within both groups between low functional capacity of the patient and the stress of the spouse. In both groups the spouses who felt their own mental health to be poor were more likely to have high levels of burden. CONCLUSIONS: Among the general psychogeriatric patient groups, the caregiving spouses of demented patients with noncognitive psychiatric symptoms are the most burdened group. However, spouses of depressive patients are as much burdened as those of demented patients with mild to moderate memory impairment. More support is needed for every spouse group caring for psychogeriatric patients.     

Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early‐stage Parkinson's disease

Family care research has identified negative outcomes of providing care to a spouse with Parkinson's disease (PD), such as declining physical and mental health. Research has also identified protective variables that decrease negative outcomes such as high mutuality and rewards of meaning. It is important for clinicians to identify “at risk” family caregivers and provide earlier interventions. Despite the importance of age and developmental stage there is a paucity of research comparing young versus older spouse caregivers. This study compared the difference in negative aspects of strain and modulators of strain in young and older PD spouse caregivers. A series of hierarchical multiple regressions were used to examine the contribution of age on both positive and negative aspects of the care situation for 65 (37 young, 28 old) PD spouse caregivers. Negative variables included 3 dimensions of strain; strain from lack of personal resources, strain from worry, and global strain. Positive or protective variables included mutuality, preparedness, and rewards of meaning. Even in early stage disease before significant care is required, young spouses (40–55) were found to be at greater risk for negative consequences of the care situation reporting significantly more strain from lack of personal resources, and lower levels of mutuality and rewards of meaning than older (greater than 70) spouses. As expected, young spouses were more likely to be working, caring for children in the home, and in better physical health than older spouses. Clinicians are well‐situated to identify the unique needs of young spouses and intervene early in the caregiving trajectory. These findings provide ideas for targeted interventions. Future larger studies that compare young and older spouses should include later stage disease to more fully understand the developmental differences raised by the present findings. © 2010 Movement Disorder Society     

Activities enjoyed by patients with dementia together with their spouses and psychological morbidity in carers

Caring for a spouse with dementia is stressful and respite care is sometimes used to reduce this burden. Spouses may find some aspects of caring rewarding but the literature on positive aspects of caring is limited. To describe activities enjoyed by patients with dementia together with their spouses, and examine their relationship with psychological morbidity in carers. A convenience sample of 46 patients with mild to moderate dementia (91% with Alzheimer's disease, AD) and their spouses were interviewed at home. Spouses completed the Pleasant Events Schedule (PES-AD) to identify activities enjoyed by patients and spouses on their own and together. Psychological morbidity in spouses was assessed using the General Health Questionnaire (GHQ-12). Cognitive functions, and non-cognitive symptoms were also assessed in patients. Multiple regression analysis using age, Mini-Mental State Examination, Cornell Scale for Depression in Dementia, Revised Memory and Behaviour Problems (RMBP) checklist frequency, and PES-AD- together scores as independent variables found PES-AD-together and RMBP-frequency to be independent predictors of GHQ-12 scores in spouses, but the model could explain only 28% of variance. Facilitating activities that are enjoyed by both patients with dementia and spouses may be an alternative intervention strategy to reduce carer burden.     

Children of dialysis patients and selection of dialysis setting

The authors interviewed hemodialysis patients, their families, and medical staff and found that some patients preferred dialysis at a medical facility, which allowed them to appear more "normal" before their children. Patients with more social support involved their children in dialysis at home. The author suggests that social support is of primary importance to the outcome of home dialysis and should be considered by physicians in the assessment of patient's suitability for home dialysis.     

Is it contagious? Affect similarity among spouses

Theories of emotional contagion suggest that spouses mutually experience affective or emotional states. However, empirical support for this theory is limited. Using a dyadic approach, this study examines affect similarity of depressive symptoms between elders with vision impairment and their spouses. As part of an investigation on older couples dealing with disability, 123 elders dealing with a recent vision loss and their spouses were interviewed. Guided by a stress process model, predictors of spouse depressive symptoms were examined. Hierarchical regression analyses revealed that the spouse's race, health, care-giving appraisal, self-efficacy, conflict with other family members regarding their partner, and their partner's depressive symptoms significantly predicted spouse depression. Specifically, spouses who were white, in poorer health, experienced more care-giving burden, had more family conflict, and poorer self-efficacy, were more likely to be depressed. Entered in the final step, elder depression uniquely contributed to the prediction of spouse depression. This points to affect similarity among spouses, which suggests that when one spouse is depressed, the other spouse is likely to experience a similar depressive symptomatology.     

Incremental Health Care Expenditures of the Spouses of Older Adults With Alzheimer's Diseases and Related Dementias (ADRD)

ObjectivePrevious research has found that having a spouse with Alzheimer's disease and related dementias (ADRD) is associated with higher health care expenditures, however it is unclear if this difference remains after accounting for the demographics and health status of the non-ADRD spouse. This paper aims to estimate the adjusted incremental health care expenditures of having a spouse with ADRD.DesignCross-sectional study of publicly available survey data (2003–2017 Medical Expenditure Panel Survey).SettingRepresentative sample of U.S. households.ParticipantsCommunity-dwelling and married older adults (n = 28,356).MeasurementTwo-part models and recycled prediction techniques to estimate the incremental effects of having a spouse with ADRD on annual health care expenditures, while adjusting for demographics, socioeconomic characteristics, and health conditions.ResultsSpouses of older adults with ADRD were older, had worse perceived mental health, and had greater difficulties with activities of daily living, compared to older adults with cognitively normal spouses. Spouses of ADRD patients had significantly higher unadjusted total health care expenditures, however their adjusted incremental expenditure was not significantly greater. After controlling for demographics and health status, ADRD spouses had significantly higher home health care expenditures, but significantly lower outpatient expenditures.ConclusionResults suggested that the higher health care expenditures in older adults with ADRD spouses can be attributed to the higher rate of comorbidities, rate of functional limitations, and mean age in this group. The increased use of home health and decreased use of outpatient in this population suggests the importance of tailoring preventative health care and social services to meet the needs of this group.     

Marital discord, sexual problems, and depression.

Systematic studies of relationships among depression, sexual function, and martial discord in hemodialysis patients and their spouses arelacking; existing studies focus upon only one of these three topics, or deal with patient or spouse as individuals rather than as a couple. We studied 17 chronic, medically stable hemodialysis patients and their husbands or wives. Although couples rated their degree of marital discord as low, the investigators rated it as high, based on the number and type of specific problems reported by the couple. The couples' evaluation may not represent denial, as has been commonly assumed. Instead their evaluation may imply that the disease and its treatment overshadow marital problems, even though couples recognize and react to these problems. Couples showed a high prevalence of sexual problems--in terms of overall satisfaction, frequency of intercourse, and specific dysfunctional symptoms (difficulty becoming excited, maintaining excitement, or having orgasm). We found a strong relationship between severity of depression and severity of sexual dysfunction in patients, but not in their mates. No strong relationship existed between a patient's depression score and marital discord, although spouses showed a trend toward correlation between severity of depression and martial discord. Younger couples, especially, seem not to want intercourse when severe martial discord exists. Patients' depression scores were comparable to thoseof psychiatric patients, while spouses' depression scores resembled those of normals. While psychosocial phenomena such as marital discord, sexual dysfunction, and depression are clear, causal chains are not. Despite disadvantages inherent in using questionnaires, short, self-administered, easily scored instruments may elicit problems with sex, marriage, and mood which might otherwise be overlooked by caretaking personnel.     

Designing psychoeducational services for spouses of persons with serious mental illness

Psychoeducational and support groups for families of mentally ill adults may not be adequately addressing the needs of spouses with mentally ill partners. This paper describes a group psychoeducational approach which has been developed and implemented through collaboration between professionals and well spouses. The high attrition of spouses in a general family psychoeducational group was dramatically reduced in this spouse psychoeducational group. Significant improvements were found in well spouse knowledge about the illness and coping strategies, personal distress, and negative attitudes towards the ill spouse over the 3-month intervention and at 1-year followup. Implications for practitioners and researchers are discussed.This pilot study was partially supported by grants from the Pew Charitable Trusts and the City of Philadelphia Office of Mental Health/Mental Retardation. The authors gratefully acknowledge Rita Packard, Marilyn Meisel, Margaret Douglas Sayers and all of the Spouse Task Force members and Spouse Workshop participants for their countless contributions to this work.     

Effects of Parkinson's disease on quality-of-life patients' spouses: a qualitative survey

INTRODUCTION: Spouses play a major role as care givers for their partners with Parkinson's disease. This de facto part of family nursing turns out to be so demanding that they often feel isolated. While spouses may have access to financial and technical aids, but no specific psychological support is available to assist them in coping with the difficulties they have to face. Supporting and educating spouses thus appears today to be a real need. METHODS: Wishing to create an appropriate support program responding to the needs and expectancies of spouses of Parkinson's disease, we conducted a study designed to measure the effects of Parkinson's disease on spouses' quality-of-life and identify the priority needs in terms of information and support. This study included the spouses of 14 patients who participated in semi-directive individual interviews and a focus group. RESULTS: The data collected shows that spouses experience great disarray when faced with the disease. Their perception of Parkinson's disease has a strong anxiogenic effects. Caring for their spouse on a day to day basis creates a permanent atmosphere of stress with an insecure feeling generating tensions and major frustrations. Most of the spouses do not allow themselves any break and are overwhelmed with ambivalent feelings. They experience a kind of hostility towards their spouse and at the same time feel guilty for their attitude and also for their helplessness. The disease also leads to an impoverishment of the couples' social network, due to reduced autonomy and fear of other people's way of looking at them. CONCLUSION: Our study confirms the usefulness of organizing an educational support program for these spouses who often feel very lonely and helpless when confronted with their partner's disease.     

Relationship matters in dementia caregiving

This study examined the relationship between four framing categories of caregiving (Relational, Instrumental, Reactive, Role Acquiring), derived from interviews with spouse caregivers, and scores on standardized measures of responses to and outcomes of caregiving. Participants were 132 spouses recruited into a larger intervention study of family caregivers of community-dwelling persons with dementia. Qualitative data were analyzed using constant comparative method; quantitative data were analyzed using one-way analysis of variance (ANOVA). Findings demonstrated that relational spouses scored better than spouses in the other three categories, indicating greater positive well-being. Relational spouses also scored significantly lower than instrumental and reactive spouses on a composite caregiver distress measure (p = 0. 003). These results suggest that interventions may need to be tailored to spouses with different caregiving perspectives.     

Spouse with schizophrenia and risk of dementia

Increased prevalence of lifestyle risk factors or shared etiology may underlie the association between schizophrenia and the subsequent risk of dementia. We explored the association between having a spouse with schizophrenia and the risk of dementia. We found a positive relationship between having a spouse with schizophrenia and vascular dementia in individuals without a mental disorder themselves but no association between having a spouse with schizophrenia and Alzheimer’s dementia. As spouses share environmental risk factors and lifestyle, this might suggest that the excess risk of dementia in probands with schizophrenia could be ascribed to the unhealthy living environment among individuals with schizophrenia.     

Chronic disease in elderly couples: are women more responsive to their spouses' health condition than men?

OBJECTIVE: The aim of the present study is to increase knowledge regarding associations between couples' health condition and psychological distress in both spouses considering gender as well as patient/spouse status. METHOD: We examined a community-based sample of 995 elderly couples in which either both spouses were healthy, one of them suffered from chronic disease or both spouses were ill. Both spouses filled out the Hospital Anxiety and Depression Scale. RESULTS: In line with our hypotheses, the results showed an association between women's psychological distress and their own as well as their spouse's health condition, whereas men's psychological distress was associated only with their own health condition. CONCLUSION: The findings demonstrate the need for awareness of gender and patient/spouse differences in psychological distress among elderly couples confronted with chronic disease.     

Effects of gender and dementia severity on Alzheimer's disease caregivers' sleep and biomarkers of coagulation and inflammation

Background: Being a caregiver for a spouse with Alzheimer’s disease is associated with increased risk for cardiovascular illness, particularly for males. This study examined the effects of caregiver gender and severity of the spouse’s dementia on sleep, coagulation, and inflammation in the caregiver.Methods: Eighty-one male and female spousal caregivers and 41 non-caregivers participated (mean age of all participants 70.2 years). Full-night polysomnography (PSG) was recorded in each participants home. Severity of the Alzheimer’s disease patient’s dementia was determined by the Clinical Dementia Rating (CDR) scale. The Role Overload scale was completed as an assessment of caregiving stress. Blood was drawn to assess circulating levels of D-dimer and Interleukin-6 (IL-6).Results: Male caregivers who were caring for a spouse with moderate to severe dementia spent significantly more time awake after sleep onset than female caregivers caring for spouses with moderate to severe dementia (p = .011), who spent a similar amount of time awake after sleep onset to caregivers of low dementia spouses and to non-caregivers. Similarly, male caregivers caring for spouses with worse dementia had significantly higher circulating levels of D-dimer (p = .034) than females caring for spouses with worse dementia. In multiple regression analysis (adjusted R² = .270, p < .001), elevated D-dimer levels were predicted by a combination of the CDR rating of the patient (p = .047) as well as greater time awake after sleep onset (p = .046).Discussion: The findings suggest that males caring for spouses with more severe dementia experience more disturbed sleep and have greater coagulation, the latter being associated with the disturbed sleep. These findings may provide insight into why male caregivers of spouses with Alzheimer’s disease are at increased risk for illness, particularly cardiovascular disease.     

Is there a desolation effect after dementia? A comparative study of mortality rates in spouses of dementia patients following admission and bereavement

Mortality rates following patient admission and patient death were measured in the surviving spouses of a sample of dementia patients admitted to a psychogeriatric unit between 1971 and 1986. The vital status of 85% of spouses was confirmed, and the ratio of observed to expected deaths (SMR) was calculated using regional and national mortality statistics. Spouse mortality following first admission to hospital was significantly lower than expected (p < 0.006), and spouse deaths following bereavement were significantly fewer than expected (p < 0.026). When male and female spouse mortality rates were compared, no significant differences were found, but there was a trend towards lower mortality in female spouses. The results give no support to the theory that hospital admission often follows a breakdown in the health of a caring spouse. Previous studies have shown an increase in mortality following conjugal bereavement, but the spouses of dementia patients were relative survivors and outlived their married and widowed counterparts in the general population. The possible relationships between dementia, anticipatory grief, and the impact of bereavement on the health of the surviving spouse are discussed.     

Patterns of spouse and child maltreatment by discharged U.S. Army soldiers

The transitional compensation (TC) program of the U.S. Army provides financial and other benefits to the families of service members discharged for child or spouse maltreatment. We analyzed the TC records of the 347 offenders, 337 spouses (160 victims and 177 nonvictims) who were applicants for benefits, and 820 children (244 victims and 576 nonvictims). One hundred fifty-two spouses were physically abused and eight were sexually abused. One hundred eighty-two children were sexually abused, 61 were physically abused, and one was emotionally abused. The Army Central Registry (ACR) of child and spouse maltreatment cases was examined to determine whether the TC offenders and victims had a history of prior maltreatment and to assess its severity. Ninety percent of the TC offenders had an ACR history as child or spouse maltreatment offenders. Seventy-four percent of the TC child abuse victims had an ACR history as victims, and 81 percent of the TC spouse abuse victims had such a history. The severity of maltreatment in the ACR of TC child and spouse victims was greater than the overall severity of maltreatment for those in the ACR database who were not in the TC database. Other children in the family who had not been identified as TC victims also had an ACR history that was more severe. Health and social service agencies should be aware of the TC program and be knowledgeable about its benefits for family members of soldiers discharged for abuse-related offenses.     

Coronary artery bypass surgery--impact upon the patient's spouse

The spouses of 65 coronary artery bypass graft surgery (CAGS) patients were assessed to determine levels of psychological symptoms and social impairment both before and 12 months after surgery. There was substantial psychological morbidity in spouses pre-operatively, with from one-third to one-half having clinically significant levels of depression and/or anxiety symptoms. Pre-operatively there was also significant global psychosocial impairment in the spouse. Of the specific domains of psychosocial adjustment, recreational and psychological adjustment was most severely affected, vocational/domestic adjustment and sexual adjustment being less impaired, and extended family relationships showing minimal impairment. There was significant improvement in spouses' psychological and global psychosocial adjustment at 12 months, with recreational adjustment showing the greatest improvement. Significant improvements also occurred in vocational adjustment but not in domestic or sexual adjustment. Neither physical, psychological nor social adjustment variables preoperatively in either the patient or spouse were predictive of psychological morbidity in the spouse (anxiety or depression) at 12 months. Similarly there were no significant patient or spouse preoperative predictors of social adjustment in the spouse at 12 months. However, the patients post-operative psychological morbidity and the spouses social and psychological morbidity were related.     

Lung Cancer Patients and Their Spouses: Psychological and Relationship Functioning Within 1 Month of Treatment Initiation

Background  Lung cancer morbidity and mortality may increase the risk for distress in couples facing this malignancy. Purpose  We examined the prevalence of psychological and relationship distress in lung cancer patients and their spouses, predictors of psychological distress for both, and whether relationship satisfaction moderated the relation between patient and spouse distress. Methods  Participants (169 patients and 167 spouses) completed questionnaires provided during clinic appointments at baseline (within one month of treatment initiation) and through the mail 3 and 6 months later. Analyses were from the baseline data. Results  In total, 34.6% of patients and 36.4% of spouses reported psychological distress. Patient and spouse distress were correlated, depending on the symptom examined. Only 10.9% of patients and 14.1% of spouses reported distressed spousal relationships. Distress predictors for patients included less positive social interaction support, more behavioral disengagement and self-distraction coping, and the spouse reporting less use of humor for coping. Predictors for spouses included more behavioral disengagement and substance use coping, more blaming the patient for causing the cancer, and the patient using more behavioral disengagement coping. Relationship satisfaction moderated the association between each partner’s distress. Conclusions  Psychosocial counseling for lung cancer patients should include spouses and target decreasing individual distress and enhancing relationship satisfaction. This research was funded by a grant from the National Cancer Institute (1 R03-CA96462-01) to Cindy L. Carmack Taylor, Ph.D., Principal Investigator, and in part by a cancer prevention fellowship to Hoda Badr, Ph.D., funded through National Cancer Institute (NCI) grant R25 CA57730 (Robert M. Chamberlain, Ph.D., Principal Investigator).