The relationship between objectively measured sleep disturbance and dementia family caregiver distress and burden

The aim of this study was to determine whether distress and burden were associated with objective measures of sleep disturbance in dementia caregivers. Using wrist actigraphy, sleep was measured in 60 female, Caucasian dementia family caregivers (mean age, 64.8 years). Caregivers completed questionnaires about demographics, health, depression, duration of caregiving and care recipient nighttime behavior. Care recipients completed a mental status exam. We investigated whether these measures were associated with actigraphic sleep parameters. Greater depressive symptoms among caregivers were associated with poorer sleep efficiency. Older caregiver age and poorer self-rated health were associated with longer time in bed. Sleep disturbance, which is common among dementia caregivers, might be an important index of caregiver distress (ie, depression) but might not be associated with burden (based on the care recipient's general cognitive impairment or nighttime awakenings.).     

Caregiver attribution and resentment in dementia care

The caregivers of 37 patients with a dementing illness completed rating scales regarding the frequency and severity of their care recipient's general behavioral disturbance and manipulative behaviors, as well as their own resentment and depression. Caregivers were randomized to a four-week psychoeducational group intervention or control group to investigate the effect of dementia caregiving education on the caregiving experience. Findings indicated that, while care recipient behavioral disturbance was correlated with caregiver resentment and depression, the primary relationship was between behaviors perceived by the caregiver as manipulative or willful and caregiver resentment and depression. We found no significant differences in caregiver attribution, resentment, or depression between the caregivers who participated in the group session and those in the control group. The study supports the existence of resentment among dementia caregivers, and an important relationship between caregiving outcomes and attributions made by caregivers regarding their care recipients' actions. These results are discussed in relation to existing research on caregiver distress and intervention.     

A stress and coping model of adjustment to caring for an adult with mental illness

This study investigated the utility of a stress and coping framework for identifying factors associated with adjustment to informal caregiving to adults with mental illness. Relations between stress and coping predictors and negative (distress) and positive (positive affect, life satisfaction, benefit finding, health) carer adjustment outcomes were examined. A total of 114 caregivers completed questionnaires. Predictors included relevant background variables (carer and care recipient characteristics and caregiving context), coping resources (optimism, social support, carer-care recipient relationship quality), appraisal (threat, control, challenge) and coping strategies (problem-focused, avoidance, acceptance, meaning-focused). Results indicated that after controlling for relevant background variables (burden, caregiving frequency, care recipient symptom unpredictability), better caregiver adjustment was related to higher social support and optimism, better quality of carer-care recipient relationship, lower threat and higher challenge appraisals, and less reliance on avoidance coping, as hypothesised. Coping resources emerged as the most consistent predictor of adjustment. Findings support the utility of stress and coping theory in identifying risk and protective factors associated with adaptation to caring for an adult with mental illness.     

Predictors of complicated grief among dementia caregivers: a prospective study of bereavement.

OBJECTIVE: Most family caregivers adapt well to the death of their care recipient relative; however, a sizable minority continues to experience postdeath psychiatric morbidity. The purpose of this study was to better understand why some caregivers manifest clinical levels of complicated grief postdeath. This is the first study to prospectively assess predictors of complicated grief among family caregivers of patients with dementia who experience the death of their care recipient. METHOD: The sample of bereaved caregivers is drawn from a larger study of 1,222 family caregivers providing in-home care to their relative with dementia. In-home assessments of caregivers and patients were carried out at baseline and six-month intervals for a total of 18 months. This article is based on the 217 caregivers who experienced the death of their care recipient in the course of the study. Three logistic regression models are tested to identify pre- and postbereavement predictors of complicated grief, including sociodemographic factors, characteristics of the caregiving experience, including participation in a caregiver intervention, other psychiatric morbidities, and medication use. RESULTS: Twenty percent of dementia caregivers evidenced complicated grief along with high levels of depressive symptomatology postdeath. Controlling for sociodemographic factors, caregivers who had high levels of preloss depressive symptoms and burden, reported positive features of the caregiving experience, and were caring for a more cognitively impaired patient were more likely to report clinical levels of complicated grief postloss. In addition, caregivers who were enrolled in a psychosocial caregiver intervention designed to reduce depression and burden reported lower levels of complicated grief. CONCLUSION: This study identifies predictors of complicated grief for which interventions could be developed to not only ease caregiver distress, but also serve as preventive interventions for bereavement. Reducing the burden of active caregiving, treating depression before the death of the loved one and providing supportive psychosocial and skills training caregiver interventions can prevent the emergence of postdeath psychiatric morbidity.     

Predictors of positive and negative appraisal among Cuban American caregivers of Alzheimer's disease patients

OBJECTIVE: This study investigated predictors of positive (satisfaction) and negative (burden) appraisal among Cuban American (CA) caregivers of Alzheimer's disease (AD) patients. DESIGN: Cross-sectional study of AD patients and their family caregivers. SETTING: A university-affiliated outpatient memory disorders clinic. SUBJECTS: A convenience sample of 40 CA family caregivers of patients diagnosed with probable or possible AD according to NINCDS-ADRDA diagnostic criteria. MEASURES: AD patients: Mini-Mental State Examination (MMSE), Blessed Dementia Scale (BDS) and the Behavioral Pathology in Alzheimer's Disease Rating Scale (BEHAVE-AD). Caregivers: Caregiving Burden Scale (CBS), Caregiving Satisfaction Scale (CSS), Perceived Emotional Support scale (PES) and the Short Form-36 Health Survey-General Health Index (GH). RESULTS: Appraised burden was predicted by increased patient behavioral pathology, female caregiver gender and lower levels of perceived emotional support. The association between older caregiver age and increased burden approached significance. Older caregiver age and higher levels of perceived social support were shown to predict appraised satisfaction. Post-hoc analyses also indicated that length of residence in the United States, a measure of acculturation, was not associated with positive or negative appraisal. CONCLUSION: Appraised burden and satisfaction represent important outcomes of dementia care that show relations with distinct factors among CA caregivers. It is clear that further research is warranted in order to ascertain the relationship of ethnicity or culture to the process and psychological consequences of dementia caregiving. Continued investigations into predictors of caregiving satisfaction are also recommended.     

Sleep disturbances in spousal caregivers of individuals with Alzheimer's disease

BACKGROUND: Although sleep problems are commonly reported among dementia caregivers, the nature and frequency of caregiver sleep disruptions, and their relationship to health status, has received little empirical attention to date. METHODS: The current study investigated the sleep situations of a sample of 60 spousal caregivers currently residing with a Alzheimer disease care recipient, including the frequency of nocturnal disruptions by the care recipient, and the reasons for these disruptions. In addition, exploratory correlations were computed between caregiver sleep variables and health outcomes. RESULTS: Some 63% of spousal caregivers reported sleep disruptions due to the nocturnal behavior of the recipients of their care. Poorer caregiver sleep quality was associated with higher frequency of nocturnal disruptions by the care recipient, the care recipient needing to use the bathroom, and wandering, higher caregiver depressive symptoms, and higher levels of caregiver role burden. The frequency of nocturnal disruptions was associated with poorer mental health status and a greater number of depressive symptoms. CONCLUSIONS: Results suggest that nocturnal disruptions by the care recipient may have adverse health consequences for spousal caregivers, and that further study of the determinants of caregiver sleep quality and health outcomes are warranted.     

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.     

Psychosocial predictors of dementia caregiver desire to institutionalize: caregiver, care recipient, and family relationship factors

Several factors influence dementia caregiver desire to institutionalize; however, little is known about differences in caregivers who desire institutionalization versus those who do not. The current study compares predictors of desire to institutionalize in dementia caregivers. Seventy-two caregivers completed the Desire to Institutionalize Scale (DIS) and several psychosocial measures, including burden, dementia knowledge, self-efficacy, depression, health, care recipient daily functioning and memory/behavior problems, family functioning, and social support. Based on DIS responses, caregivers were divided into No DI versus DI groups. DI caregivers had significantly higher burden, greater dementia knowledge, more family dysfunction, and decreased social support compared with No DI caregivers. Findings emphasize the importance of caregiver and family relationship variables in DIS, suggesting potentially modifiable targets for caregiver interventions. Dementia knowledge was associated with higher DIS, suggesting that educational programs alone may not be helpful to delay institutionalization.     

Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: findings from the REACH study

Although there has been considerable interest in racial differences in family caregiving for persons with dementia, most research to date has either ignored racial diversity or based conclusions on small numbers of caregivers drawn primarily from single site studies. The current study utilized participants from four sites of the REACH (Resources for Enhancing Alzheimer's Caregiver Health) multi-site study to compare well-being, appraisal, and religious coping by race. African-American (n = 295) and Caucasian (n = 425) dementia caregivers from four cities (Birmingham, Memphis, Boston, and Philadelphia) were compared in their demographics, care recipient characteristics, mental and physical health, and psychosocial coping resources including appraisal and religious coping. African-American caregivers reported lower anxiety, better well-being, less use of psychotropic medications, more benign appraisals of stress and perceived benefits of caregiving, and greater religious coping and participation, than Caucasian caregivers. Self-rated health did not differ by race, but African-American caregivers reported more unhealthy behaviors than Caucasian caregivers. Some results were specific to site, possibly due to differences in recruitment strategies, inclusion/exclusion criteria, and regional differences. Adjustment for covariates, including caregiver relationship to the care recipient, gender, age, socioeconomic status, and care recipient behavioral problems, altered few of these differences. Results are discussed in terms of their relevance to psychosocial intervention programs for ethnically diverse caregivers.     

Unique contribution of family functioning in caregivers of patients with mild to moderate dementia

The relationship between family functioning and dementia caregiving is complex. The present study examined the interrelationships between family functioning, caregiver burden, and patient characteristics. Participants were 72 live-in, family caregivers of patients with mild (n = 47) or moderate dementia (n = 25). Caregivers completed measures of burden, family functioning, depression, and anxiety. Ratings of patients' memory/behavior problems and patients' activities of daily living were also collected. Results indicated that higher levels of caregiver burden were significantly associated with increased caregiver depression and anxiety, greater frequency of memory and behavior problems in the dementia patient, worse activities of daily living, and poorer family functioning. Even after controlling for caregiver depression, caregiver anxiety, and frequency of memory/behavior problems in dementia patients, poorer family functioning continued to be associated with higher levels of caregiver burden. Caregivers with high levels of burden reported greater family dysfunction in communication and roles, regardless of their relationship to the patient (i.e., spouse or child). These findings suggest that including a family systems component in caregiver interventions may be beneficial in reducing burden in these very distressed individuals.     

Do family caregivers perceive more difficulty when they look after patients with early onset dementia compared to those with late onset dementia?

OBJECTIVE: To compare family caregiving situations for patients with early onset dementia (EOD) and late onset dementia (LOD), and to identify the specific problems experienced by relatives caring for EOD patients. METHODS: The participants were chosen from 92 consecutive caregiver-patient dyads, comprising co-residing family caregivers and outpatients who fulfilled the diagnostic criteria for dementia. The patients were assessed according to cognitive function, neuropsychiatric disturbances and the severity of dementia. The caregivers completed a self-administered questionnaire that included items on their sociodemographic status and caregiving situation. Caregiver burden was assessed by the Japanese version of the Zarit Burden Interview. RESULTS: In total, 68 dyads were eligible for the analysis, 14 of which included patients with EOD and 54 of which included patients with LOD. There were no significant differences between the two groups in terms of patient clinical features, duration of caregiving, number of hours during which caregivers were relieved per day or number of hours of caregiving per day. No significant associations were detected between the type of dementia and caregiver characteristics (such as health status) or caregiver burden, even after adjusting for confounding variables. However, the caregivers of EOD patients had greater perceived difficulties due to patient behavioural disturbances than did the caregivers of LOD patients. CONCLUSIONS: Our findings demonstrated that additional resources, such as care services, should be provided for sufferers of EOD, in order to allow family caregivers to cope with difficulties associated with patient behavioural problems.     

Family functioning in the caregivers of patients with dementia

BACKGROUND: Caregiver burden has been extensively studied in the dementia population. The marital relationship has been suggested as a mediational model through which variables influence the caregiver and contribute to the experience of burden or reward. OBJECTIVES: This study examines family functioning, caregiver burden and reward and quality of life in 38 family members caring for a relative with dementia. METHODS: Caregivers of out-patients with dementia completed self report questionnaires. RESULTS: 63% of caregivers were female with a mean age of 62 years. Patient mean age was 73 years. The average number of caregiving years was 3.1. Caregivers were more likely to be spouses (61%) than children (29%) or other relatives (11%). Despite the fact that caregivers reported that their relatives were moderately disabled, they perceived more reward than burden. Caregivers who reported poor family functioning had higher ratings of strain and burden. Family functioning in these caregivers was poorest in the dimensions of affective responsiveness, problem solving and communication but it was also impaired in roles and affective involvement. CONCLUSIONS: Assessing a family's functioning may be an important factor in the care of the dementia patient and his/her family.     

Health-related quality of life for caregivers of patients with Alzheimer disease

We investigated the relationship of caregivers' health-related quality of life (HRQOL) to the burden of caring for patients with Alzheimer disease (AD) and resource utilization. Caregiver HRQOL was assessed using the SF-12 Mental and Physical Summary scores. Compared with a normative, age-adjusted sample, the 2477 caregivers had lower mental and physical scores (for the latter, only those <54 years of age). Increased caregiver mental functioning was associated with caregiver support and perceived quality of patient medical care, fewer hours of caregiving, and fewer patient behavioral symptoms. The burden of caregiving has substantial effects on HRQOL. Interventions that improve AD status and reduce caregiving hours have the potential to improve caregivers' HRQOL.     

Caregiving burden and psychiatric morbidity in spouses of persons with mild cognitive impairment

BACKGROUND: While the deleterious psychosocial and mental health effects of dementia caregiving are firmly established, very little is known about the burdens or psychiatric outcomes of providing care to a spouse with less severe cognitive impairment, such as mild cognitive impairment (MCI). We characterized the nature and level of caregiver burden and psychiatric morbidity in spouses of persons diagnosed with MCI. METHODS: Interview assessments were completed on a cohort of 27 spouses of persons with a recent diagnosis of MCI. Patient medical records were reviewed to collect information regarding the MCI patient's medical history. RESULTS: Respondents endorsed elevated levels of both task-related responsibilities and subjective caregiver burden. Depression and anxiety symptom levels also showed some elevations. Measures of caregiver burden were significantly associated with depression and anxiety levels. In particular, even after controlling for demographic risk factors for distress, nursing task burden was correlated with elevated depressive symptoms, and greater lifestyle constraints were correlated with higher anxiety levels. CONCLUSIONS: Although caregiver burden and psychiatric morbidity levels were lower than those typically observed in family dementia caregiving samples, our findings suggest that MCI caregivers have already begun to experience distress in association with elevated caregiving burden. These individuals may be ideal targets for selective preventive interventions to maximize their psychological well-being as caregiving burdens related to their spouses' cognitive impairment increase.     

Relationship status and depressive symptoms among older co-resident caregivers

Objectives: Informal caregiving has been found to be burdensome and is associated with depression among older caregivers. These outcomes are often accentuated when caregivers and care recipients co-reside. The current study aims to examine whether the status of the relationship between caregiver and care recipient lessens the negative outcomes commonly associated with informal caregiving.Methods: The study focused on the subsample of co-resident caregivers (N = 3280) in the fourth wave of the Survey of Health Ageing and Retirement in Europe, of persons aged 50 or above, collected in 2011. A logged count of depressive symptoms, measured on the EURO-D scale, was hierarchically regressed on relationship status, measured as relationship type and closeness (confidant) controlling for sociodemographic background, health and country.Results: Co-resident caregivers of spouse and children experienced more depressive symptoms than other relationship co-resident caregiving dyads. However, those who cared for a confidant experienced fewer depressive symptoms, independent of the relationship type.Conclusions: The provision of informal care is stressful and results in a heightened experience of depressive symptoms. Nonetheless, the type and closeness of the relationship between the caregiver and the care recipient can lessen caregiver depression. When informal caregivers care for a confidant, the emotional bond may reduce the depressive symptoms.     

Risk factors for stress in elderly caregivers

This cross-sectional study examined 99 elderly coresident stroke and dementia caregivers who had been in the caregiving role for at least 6 months, to identify risk factors for subjective burden and psychological morbidity. A worsening in the quality of relationship between the caregiver and patient, being a spouse, shorter length of caregiving, poor caregiver self-rated health, greater physical disability and behaviour/mood disturbance in the patient were found to be risk factors for burden. For psychological morbidity, risk factors also included behaviour/mood disturbance as well as female gender and low participation in life activities. These results demonstrate the multifactorial nature of caregiver stress in the elderly.     

The emotional impact of psychiatric symptoms in dementia on partner caregivers: do caregiver, patient, and situation characteristics make a difference?

This study aims to investigate the emotional impact of psychiatric symptoms of patients with dementia on their caregiving partners, and to explore if caregiver, patient, and situation factors predict this emotional impact on caregivers. A cross-sectional design was used. Partners of patients with slight to moderately severe dementia who live in the community (n = 85) were interviewed. In a subgroup (n = 58) potential predictors of emotional impact of psychiatric symptoms on caregivers were studied. Agitation, irritability, apathy, and disinhibition produced the highest mean emotional impact scores in caregivers. Besides the neuropsychiatric symptoms themselves, the emotional impact of these symptoms on caregivers was predicted by sense of competence, degree of care needed by the patient, and financial expenditure due to the caregiving situation. The emotional impact of psychiatric symptoms on caregivers is predicted by several patient, caregiver, and situation factors. Interventions aimed at decreasing the experienced burden of caregivers should therefore not only focus on the psychiatric symptoms of the patient, but also on the sense of competence of the caregiver and the financial burden due to the caregiving situation.     

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

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

Factors related to feelings of burden among caregivers looking after impaired elderly in Japan under the Long-Term Care insurance system

Since the 1970s, the burden of caregiving has been the subject of rather intense study, a trend that will continue with the rapid graying of populations worldwide. Since the Long-Term Care insurance system began in 2000, few cross-sectional studies have attempted to identify factors related to the feelings of burden among caregivers looking after the impaired elderly in Japan. In the present report, among 46 pairs of caregivers and impaired elderly, the elderly receiving regular nurses' visits in Kyoto Prefecture, Japan were assessed for problems with activities of daily living, the severity of dementia, the presence of behavioral disturbance, and cognitive impairment. The caregivers were asked to complete questionnaires in relation to their feelings of burden and caregiving situation. The results indicated that caregivers of impaired elderly with behavioral disturbances were more likely to feel a 'heavier burden.' Those temporarily relieved of caregiving three or more hours a day were less likely to experience 'heavier' caregiver burden than those who were not. Moreover, caregivers who found it 'inconvenient' to use care services tended to be more likely to feel a 'heavier' caregiver burden than those who did not. Recourse to respite services, which are ideally positioned to help, proved inconvenient because of their advance reservation system. More ready access to respite services in emergencies could do much to reduce caregiver burden.     

A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia

BACKGROUND: Caregiving for people with dementia has consistently been linked with psychological problems, usually in terms of caregiver burden, general psychological distress and depressive symptomatology, while morbidity due to anxiety has been relatively neglected in this group. METHODS: We conducted a systematic review of the literature, searching electronic databases, reference lists, relevant systematic reviews and contacting experts in the field. We used Centre for Evidence Based Medicine (CEBM) criteria for inclusion and rating the validity of all studies that reported (1) the prevalence, predictors and covariates of anxiety disorders or anxiety caseness, and (2) covariates and predictors of the level of anxiety symptoms. RESULTS: Thirty-three studies met our inclusion criteria. Clinically, significant anxiety affects about a quarter of caregivers for people with dementia and was more common than in matched controls. Such caregivers have higher anxiety levels than controls, and that confrontative and escape avoidance coping, caregiver burden and poorer caregiver physical health are factors associated with higher anxiety levels from cross-sectional studies. CONCLUSIONS: Coping style may be more associated with anxiety than depression while other covariates (burden and poor physical health) are similar to those for caregiver depression. We found no conclusive evidence about factors associated with anxiety disorders or predicting anxiety from longitudinal studies. Neither care recipient cognition nor ADL impairment; nor caregiver age nor duration of caring are associated with caregiver anxiety levels. Good quality cohort studies are needed to determine whether these factors also predict anxiety disorders.