The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease

The burden experienced by family caregivers of individuals with Alzheimer disease (AD) affects the caregivers' overall health-related quality of life (HRQOL). Assessing the influence on HRQOL is an integral part of determining the efficacy and economic attractiveness of interventions for AD. Generic preference-weighted instruments such as the Health Utilities Index Mark 2 (HUI2) are recommended for measuring HRQOL for cost-effectiveness studies. However, these instruments focus on physical attributes and have not been tested in an AD caregiver population. We administered the HUI2 to a population of 679 caregivers to people with AD at 13 community and institutional sites in the United States. We also administered the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), a caregiver time questionnaire, and a caregiver burden instrument. The mean global HUI2 utility score for caregivers was 0.87 and varied little by the affected person's setting of care and AD stage (range, 0.86-0.89; p > 0.2). The caregiver burden scales all varied by the affected person's setting of care, and some also varied by disease severity. The mental health component summary score of the SF-36 for caregivers varied across both disease stage and setting. Caregiver time increased for caregivers of AD-affected persons with more severe cognitive impairment. Generic preference-weighted instruments may not adequately capture differences in the burden of caregivers of those with AD. The development of condition-specific preference-weighted instruments may provide the means to better estimate HRQOL in AD caregivers.     

The needs of the caregiver in the long-term treatment of Alzheimer disease

The long-term well-being of caregivers should be included as part of the treatment of patients with Alzheimer disease (AD). Throughout the process of caring for patients with AD, caregivers frequently experience social, emotional, physical, and financial losses, which become more significant as the disease progresses. Minimizing these losses is a goal in the overall management of AD. Successful treatment of the patient has been shown to positively impact quality of life for the caregiver. Randomized, controlled studies of acetylcholinesterase inhibitors (AChEIs) have demonstrated the effectiveness of these agents in stabilizing cognitive function and delaying behavioral symptoms. Moreover, a decrease in the incidence of nursing home placement has been associated with this therapy. The growing burden of AD on families and society as a whole warrants the investigation of ways to minimize the impact of AD. AChEIs play an important role in this effort. Further studies are needed to more closely examine the impact of specific AChEIs on caregiver burden.     

The attenuating effect of personal mastery on the relations between stress and Alzheimer caregiver health: a five-year longitudinal analysis

The objectives of this study were to evaluate the impact of personal mastery and caregiving stress on caregiver depressive symptoms and health over time and to examine the moderating effect of mastery on the relations between stress and these outcomes. A total of 130 spousal Alzheimer caregivers completed yearly assessments of personal mastery, role overload, health symptoms and depressive symptoms. Random regression was used to evaluate the relations between time-varying values for stress and mastery in predicting depressive and health symptoms. It was found that variation in depressive symptoms over time was significantly related to role overload (p<0.05) and personal mastery (p<0.001). A significant overload-by-mastery interaction was found for predicting depressive symptoms (p=0.002) and caregiver health (p=0.008), whereby mastery attenuated the effect of stress on these outcomes. We conclude that personal mastery appears to reduce the effects of stress on depression and health outcomes over time.     

Religiosity and the expansion of caregiver stress

We present a stress process framework as a model for understanding how religiosity may influence the expansion of stress. Survey data from informal caregivers to a spouse with Alzheimer's disease or a related dementia (n = 200) were analyzed to observe the relationships among three variables: (1) care-related stress, (2) religiosity, and (3) depression. This sample, which has a mean age of 73 years, demonstrates high rates of self-described religiosity, church attendance and frequency of prayer. Using these criteria, women and racial/ethnic minority caregivers are the most religious. In a series of multivariate analyses, we found strong evidence to suggest that there is an expansion of care-related stressors leading to depression in this sample. Religiosity, as measured here, appears to be largely unrelated to stress and stress expansion. We found no evidence to suggest that it moderates stress expansion. However, these data do suggest that one stressor--feelings of role overload--is correlated with greater levels of self-perceived religiosity, which among caregivers who have health problems of their own is associated with greater depressive symptomatology. Thus, for a sub-sample of these caregivers, we find weak evidence of a mediation effect wherein one subjective, non-organizational dimension of religiosity is a conduit of the harmful effects of stress (rather than a suppressor). Results and data limitations are discussed in relation to better assessing the role of religiosity and spirituality in the experience of the stress process.     

Burden of Alzheimer's disease: helping the patient and caregiver.

The burden associated with caring for a patient with dementia is well documented. There are many conflicting data on the factors that cause caregiver burden. Historically, studies in this area have tended to focus on deficits in the patient and the burden and distress they cause the caregiver. More recently, it has been acknowledged that caregivers' own characteristics may play a major role in determining how burdensome and stressful they find their role. These characteristics include such things as gender, availability of support systems, and relationship to patient, as well as the way the caregiver perceives the patient's symptoms (whether illness related or deliberate) and his or her attitude and behavior toward the patient. Understanding the origins of caregiver burden has broad implications both in terms of the well-being of caregivers and the quality of support that patients receive. The Manchester Carer's Project, which is described here, seeks to identify the origins and management of caregiver burden.     

Vulnerability to post-traumatic stress disorder and psychological morbidity in aged holocaust survivors

OBJECTIVE: Although high rates of post-traumatic stress disorder (PTSD) and psychological morbidity have been consistently reported in Holocaust survivors (HS), reports are inconsistent about which factors are associated with psychological morbidity. In a study of the oldest HS cohort yet reported, we aim to clarify why this variability exists by examining factors associated with PTSD and psychological morbidity, including for the first time measures of personality and defense mechanisms. METHODS: One hundred HS randomly selected from a convenience sample of 309 respondents to a survey of Jewish persons aged 60 years and older living in the community in Sydney were assessed using the following instruments: demographics, severity of trauma experienced, General Health Questionnaire (GHQ-28), PTSD diagnosis (DSM-IV), Brief Psychiatric Rating Scale, Impact of Events Scale, Defense Style Questionnaire, modified Eysenck Personality Inventory. RESULTS: Older age, experience of more severe trauma, use of immature defense mechanisms and higher neuroticism were associated with significant PTSD and psychological morbidity; severity of trauma was associated with PTSD and with more severe psychological morbidity. CONCLUSIONS: A profile of survivors at-risk can be identified that may have application to survivors of more recent holocausts. Late life may be a period of vulnerability in the aftermath of severe trauma.     

CSF GABA in caregiver spouses of Alzheimer patients

The authors studied CSF gamma-aminobutyric acid (GABA) in 14 Alzheimer patients and nine age-matched normal subjects. The five normal subjects who were wives of the demented patients had higher CSF GABA concentrations than the four normal subjects without demented spouses.     

Alzheimer caregiver stress: Basal natural killer cell activity, pituitary-adrenal cortical function, and sympathetic tone

The association between Alzheimer caregiving and natural killer (NK) cell activity and basal plasma levels of adrenocorticotropic hormone (ACTH), cortisol, β-endorphin, prolactin, epinephrine, norepinephrine, and neuropeptide Y was determined in 100 spousal Alzheimer caregivers and 33 age-and gender-comparable control volunteers upon intake into a study of the psychological and physiologic impact of caregiving. The relationship between these physiologic measures and individual characteristics such as age, gender, medical status, severity of stress, severity of depressive symptoms, and caregiver burden was tested. In addition, the association between NK activity and alterations of the neuroendocrine measures was investigated. As compared to controls, the Alzheimer caregivers had similar levels of NK activity and of basal plasma neuroendocrine hormones and sympathetic measures. While older age and male gender status were associated with increased levels of ACTH, neither medical caseness, severity of life stress, nor severity of depressive symptoms was associated with alterations in any of the multiple physiologic domains. Classification of Alzheimer caregiver burden identified caregivers who were mismatched in terms of the amount of care they were required to provide and the amount of respite time received. The mismatched caregivers had significantly higher basal plasma ACTH but no change in other physiological measures, as compared to non-mismatched caregivers. NK activity was negatively correlated with plasma levels of neuropeptide Y but not with any of the other neuroendocrine measures. Based on this cross-sectional evaluation of NK activity and neuroendocrine and sympathetic measures, we conclude that most Alzheimer caregivers do not show evidence of altered basal physiology.     

Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention.

OBJECTIVE: The objective of this study was to determine the effects of counseling and support on the physical health of caregivers of spouses of people with Alzheimer disease. METHODS: A randomized controlled trial, conducted between 1987 and 2006 at an outpatient research clinic in the New York City metropolitan area compared outcomes of psychosocial intervention to usual care. Structured questionnaires were administered at baseline and regular follow-ups. A referred volunteer sample of 406 spouse caregivers of community dwelling patients with Alzheimer disease enrolled over a 9.5-year period. Enhanced counseling and support consisted of six sessions of individual and family counseling, support group participation, and continuous availability of ad-hoc telephone counseling. Indicators of physical health included self-rated health (SRH) of caregivers and the number of reported illnesses. RESULTS: Controlling for baseline SRH (mean: 7.24), intervention group caregivers had significantly better SRH than control group caregivers based upon model predicted mean scores four months after baseline (6.87 versus 7.21), and this significant difference was maintained for two years (6.70 versus 7.01). The effect of the intervention on SRH remained significant after controlling for the effects of patient death, nursing home placement, caregiver depressive symptoms and social support satisfaction. Similar benefits of intervention were found for number of illnesses. CONCLUSION: Counseling and support preserved SRH in vulnerable caregivers. Enhancing caregivers' social support, fostering more benign appraisals of stressors, and reducing depressive symptoms may yield indirect health benefits. Psychosocial intervention studies with biological measures of physical health outcomes are warranted.     

Dementia patient suffering and caregiver depression

Cross-sectional and longitudinal analyses were carried out to assess the relationship between dementia patient suffering, caregiver depression, and antidepressant medication use in 1222 dementia patients and their caregivers. We assessed the prevalence of 2 types of patient suffering, emotional and existential distress, and examined their independent associations with caregiver depression and antidepressant medication use when controlling for sociodemographic characteristics of caregivers and patients, cognitive and physical disability of the patient, the frequency of patient memory problems and disruptive behaviors, and the amount of time spent caring for the patient. Multiple linear regression models showed that both aspects of perceived patient suffering independently contribute to caregiver depression (emotional distress: beta=1.24; P<0.001; existential distress: beta=0.66; P<0.01) whereas only existential suffering contributes to antidepressant medication use: odds ratio=1.25 95% confidence interval, 1.10-1.42; P<0.01. In longitudinal analyses, increases in both types of suffering were associated with increases in caregiver depression (emotional distress: beta=1.02; P<0.01; existential distress: beta=0.64; P<0.01). This is the first study to show in a large sample that perceived patient suffering independently contributes to family caregiver depression and medication use. Medical treatment of patients that maintain or improve memory but do not address suffering may have little impact on the caregiver. Alzheimer disease patient suffering should be systematically assessed and treated by clinicians.     

Evolving standards in patient and caregiver support

It has become increasingly clear that family members and others have enormous potential to contribute positively to the care of the patient suffering from Alzheimer disease (AD). Various methods such as respite services and day care as well as counseling and support groups have been shown to reduce caregiver stress and burnout. Moreover, there are many areas in which the informed, trained caregiver can contribute positively to, and even lead, the interdisciplinary ongoing care of AD patients. For example, the caregiver can help with memory aids, behavioral interventions, the maintenance of exercise and nutrition, healthcare proxies and housing arrangements, decisions about intensity of treatment, and the timely implementation of palliative care approaches. Caregivers skilled in such matters will increase the quality of life of the AD patient and reduce their dependency. Many support services and educational activities are known to help caregivers and their patients, yet their availability is variable, and it is unclear whose responsibility it is to organize and finance them.     

Using the telephone to call for help and caregiver awareness in Alzheimer disease

We assessed the ability of 73 patients with Alzheimer disease (AD) and mild cognitive impairment (MCI) from our outpatient clinic to demonstrate how they would use the telephone to call for help in case of an emergency. We also assessed their caregivers' awareness of their abilities. Overall, 44% of the patients did not demonstrate how to call for help correctly if they had no written telephone number to call, and 18% did not when they had a written number. There was an association between the abilities of the patients and their Mini-Mental State Examination (MMSE) scores, with the patients with the lowest scores having the most difficulty (P < 0.0001). Surprisingly, 21% of those with MMSE scores 26-30 did not use the telephone correctly when they had no written number. Of the caregivers, 31% were incorrect in predicting their patients' abilities for the first task, and 11% were incorrect in predicting the second task. We conclude that AD patients lose their ability to use the telephone to call for help as their illness progresses. Furthermore, many caregivers are unaware of their patients' impairment. These findings highlight safety concerns in AD and suggest that caregivers could benefit from education about potential patient losses.     

Premorbid personality and behavioral and psychological symptoms in probable Alzheimer disease.

OBJECTIVES: Previous research investigating the influence of premorbid personality on behavioral and psychological symptoms in dementia (BPSD) has produced mixed findings. Addressing some limitations of previous studies, the authors aimed to investigate whether some of the common individual symptoms of BPSD (depression, anxiety, irritability, and aggression) were associated with key aspects of previous personality (neuroticism and agreeableness); and also to perform an exploratory investigation into the broader influence of personality factors on behavioral and psychological syndromes. METHODS: Two hundred eight patients with a diagnosis of probable Alzheimer disease were assessed for the presence of BPSD over the disease course using the caregiver-rated Neuropsychiatric Inventory (NPI). One or two knowledgeable informants rated patients' midlife personalities using a retrospective version of the NEO-FFI questionnaire. RESULTS: Premorbid neuroticism was correlated with anxiety and total NPI score, although not with depression. Premorbid agreeableness was negatively correlated with agitation and irritability. Principal components analysis of the 10 NPI behavioral domains identified three syndromes: "agitation/apathy," "psychosis," and "affect." In stepwise linear regression analyses, including personality domains from the Five-Factor Model and a range of potential confounders as independent variables; the only significant personality predictor of a behavioral syndrome was "agitation/apathy," predicted by lower premorbid agreeableness. CONCLUSION: Lower premorbid agreeableness is associated with agitation and irritability symptoms in Alzheimer disease and also predicts an "agitation/apathy" syndrome. The relationship between premorbid neuroticism and BPSD is less straightforward, and premorbid neuroticism does not appear to be associated with depression in Alzheimer disease or predict an "affect" syndrome.     

The relationships among caregiver and adolescent identity status, identity distress and psychological adjustment

The present study addresses the relationships of caregiver identity status on their adolescent children's identity distress and psychological symptom severity among a sample of adolescents (age 12-19) in treatment at a community mental health center (N?=?60 caregiver-child dyads). A significant proportion of caregivers (10%) and their adolescent children (21.7%) met DSM-IV criteria for Identity Problem. Caregiver identity commitment, significantly predicted adolescent identity distress over and above the adolescents' identity variables, while caregiver identity exploration significantly predicted adolescent psychological symptom severity. These findings and implications are discussed in further detail.