Dementia Family Caregivers Research Articles

Predicting facilitators' behaviors during Alzheimer's family support group meetings.

A social ecological model was used to predict facilitators' behaviors observed during Alzheimer's Association sponsored family support group meetings (N = 66). Information about group leaders was obtained via individual telephone interview prior to the observation of their support group by trained raters. Family dementia caregivers (N = 296) provided basic demographic and caregiving-related information at the end of the observed meeting. Caregiver- and group-level variables predicted ratings of observed leader support during support group meetings. The addition of leader characteristics such as years of experience or professional roles did not significantly contribute to the model. This study lends credence to ecological models emphasizing the influence of social context. Recommendations are made for facilitator training and management of Alzheimer's Association sponsored support group meetings.

Sleep in Spousal Alzheimer Caregivers: A Longitudinal Study with a Focus on the Effects of Major Patient Transitions on Sleep

Findings on sleep disturbances in family dementia caregivers are conflicting. We studied the longitudinal effects of dementia caregiving and major transitions in the caregiving situation on caregivers' sleep and the effect of moderating variables. Community-based longitudinal study with assessments about once a year for up to three years. A sample of 109 elderly spousal Alzheimer caregivers and 48 non-caregiving age- and gender-matched controls. Random regression models with fixed and time-variant effects for covariates known to affect sleep were used to evaluate changes in the Pittsburgh Sleep Quality Index (PSQI) and in four actigraphy measures over time in relation to caregiving status and transitions (i.e., nursing home placement or death of the Alzheimer disease spouse). Multivariate-adjusted sleep characteristics did not significantly differ between caregivers and non-caregivers over time. Spousal death increased caregivers' nighttime wake after sleep onset (WASO) by 23 min (P = 0.002) and daytime total sleep time (TST) by 29 min (P = 0.003), while nighttime sleep percent decreased by 3.2% (P = 0.009) and nighttime TST did not change. Placement of the spouse had no significant effect on caregivers' sleep. Older age, male gender, role overload, depressive symptoms, and proinflammatory cytokines variously emerged as significant moderators of the relationships between caregiving and transitions with poor subjective and objective sleep. Alzheimer caregivers and non-caregiving controls had similar trajectories of sleep. However, there may be subgroups of caregivers who are vulnerable to develop sleep disturbances, including those whose spouses have died.

The influence of ethnicity and culture on dementia caregiving: a review of empirical studies on Chinese Americans.

The purpose of this article is to pinpoint the cultural and ethnic influences on dementia caregiving in Chinese American families through a systemic review and analysis of published research findings. Eighteen publications on Chinese American dementia family caregivers published in peer-reviewed journals between 1990 and early 2011 were identified. Based on a systematic database search and review process, we found that caregivers' beliefs concerning dementia and the concept of family harmony as evidenced through the practice of filial piety are permeating cultural values, which together affect attitudes toward research and help-seeking behaviors (ie, seeking information on diagnosis and using formal services). There is also evidence to suggest that these cultural beliefs impinge on key elements of the caregiving process, including caregivers' appraisal of stress, coping strategies, and informal and formal support. The study concludes with recommendations for future research and practice with the Chinese American population.

International Perspectives on Nonpharmacological Best Practices for Dementia Family Caregivers: A Review

This review begins by highlighting the fact that dementia is truly a global problem at this time, with incidence and prevalence rates rising rapidly in most parts of the world and only expected to increase. Along with this comes the growing demand for programs and services targeted to support both the person with dementia and his or her family caregivers. Around the globe such programs are being developed, evaluated, and put into practice, with government funding and needed infrastructures to support them. However, the many pressing needs of family caregivers for services to reduce their burden and improve quality of life for themselves and their relative far outstrip available programs—even in highly developed countries such as the United States, United Kingdom, and Australia. This is even more so the case in less developed countries and regions such as China, India, Africa, and South and Central America. We conducted an extensive search of existing databases and publications related to this topic, and in this article we both review and critique existing programs and service models. There are descriptive sections on evidence-based programs and practices, as well as discussion of promising areas for future research. In addition, we discuss some of the formidable barriers that prevent or delay access to care in even the more developed countries. Finally, we conclude with a set of recommendations that we believe will enhance growth and productivity in this field.

Health self-perception by dementia family caregivers: sociodemographic and clinical factors

Caring for a demented family member has been associated with burden. Studies concerning health self-perception of family caregivers are still scarce. To investigate caregivers perceived health and to look into relationships with patients and caregivers' sociodemographic and clinical data. Dyads of dementia outpatients and family caregivers (n=137) were assessed with Mini Mental State Examination, Functional Activities Questionnaire, Neuropsychiatric Inventory and Clinical Dementia Rating. Caregivers answered Sociodemographic Questionnaire, Beck Depression and Anxiety Inventories, Zarit Burden Interview and Maslach Burnout Inventory. Caregivers poor perceived health was associated with emotional exhaustion, burden, depression and anxiety. Logistic regression analyses revealed caregivers' age, anxiety and physical problem as the main predictors of health self-perception. Aged family caregivers with anxiety who also report physical problem characterize a group at risk for poor self-perceived health. Evaluation of health self-perception may be useful for designing interventions to improve anxiety and physical health.

Meditation improves depressive symptoms, coping, cognition, and inflammation in family dementia caregivers in a randomized 8-week pilot study

Meditation improves depressive symptoms, coping, cognition, and inflammation in family dementia caregivers in a randomized 8-week pilot study

How Much Striving Is Too Much? John Henryism Active Coping Predicts Worse Daily Cortisol Responses for African American but Not White Female Dementia Family Caregivers

The John Henryism active coping (JHAC) hypothesis suggests that striving with life challenges predicts increased risk for cardiovascular disease for those with scarce coping resources. This study examined the moderating role of JHAC in the associations of 1) caregiver status and 2) care recipient functional status with diurnal salivary cortisol patterns among 30 African Americans (AAs) and 24 white female dementia caregivers and 63 noncaregivers (48 AAs). Caregiver participants completed the JHAC-12 scale, Activities of Daily Living (ADL) scale, and Revised Memory and Behavior Problem checklist (RMBPC) and collected five saliva samples daily (at awakening, 9 A.M., 12 P.M., 5 P.M., and 9 P.M.) for 2 successive days. Univariate analysis of variance tests with mean diurnal cortisol slope as the outcome illustrated that among AA caregivers, higher JHAC scores were related to flatter (or more dysregulated) cortisol slopes. The JHAC by ADL and JHAC by RMBPC interactions were each significant for AA caregivers. Among AA caregivers who reported higher ADL and RMBPC scores, higher JHAC scores were associated with flatter cortisol slopes. These findings extend recent studies by showing that being AA, a caregiver, and high in JHAC may elevate the risk for chronic disease, especially for those with higher patient ADL and behavioral problems. Thus, it is imperative that interventions appreciate the pernicious role of high-effort coping style, especially for AA caregivers, to minimize the stressful side effects of patient ADL and memory and behavioral problems for the caregiver.

The organisation of dementia care by families in Malta: The experiences of family caregivers

This paper discusses the experiences of dementia family caregivers in Malta. The study design was essentially exploratory as this is the first funded social research on dementia in the island of Malta. In-depth semi-structured interviews were conducted in October 2008 with 17 caregivers. Identification of caregivers was through their relatives’ attendance at a hospital based outpatient memory clinic. Interviews were recorded, transcribed and when required, phrases were translated from Maltese to English. A thematic analysis was guided by the questions; What are the experiences of family caregiving in Malta? And what impact does caregiving have for individual/family life? Three key findings are discussed, namely: the organization of family care in Malta; the use of formal services; and the dislocation of dementia caregiving experiences from wider community life. This paper raises questions about support mechanisms currently available in Malta while presenting cross-national learning opportunities to apply established knowledge to the Maltese context.

P01-488 - The relations between psychosocial factors, care burden and depression on the dementia family caregivers

ObjectivesTo describe the relation of psychosocial factors of care (phase illness, years of care, free time, extra help and symptoms of depression) influence the care burden of dementia family caregivers. To measure the relation of the level of depressive symptoms on an intense level of burden of the dementia family caregiversMethodsIs selected a sample of 102 primary caregivers by criteria of inclusion to which a surveys do to those that the following information gathered: sociodemographic dates of the caregivers and of the dementia patients, care burden (Zarit Interview) and depressive symptoms (Beck Depression Inventory) of the family caregivers.ResultsMost of the sample experiences an intense burden level (74%) opposite to a light level (26%). Psychosocial characteristics are as per statistics significant in increasing the care burden there were free time, extra help and presence of symptoms of depression.Presence of serious symptoms of depression on the intense burden level are differently front or those who had a minor burden, 22% and 5% respectively.ConclusionsThere are most of the daughter-father/mother and spouse-spouse caregiver couples with a high percentage of caregivers of feminine sex (as in most of the studies realized on caregiver of dependent persons at European and international level). The need for free time and psychic self-care are cost-effective strategies to prevent the depressive disorders, as well as, to improve their caregiver’ws work. The psychoeducation programs that have being realized at European level directed to family caregiver are necessary in our country.

Caregiving styles: a cognitive and behavioral typology associated with dementia family caregiving.

An increasing number of elderly individuals are diagnosed with Alzheimer's disease and related disorders (ADRD), many of whom receive daily caregiving from spouse or adult child. Caregiving is a "cultural activity," and as such it is strongly influenced by sociocultural beliefs about caregiving and how it should be enacted. Understanding this thinking-action process has important implications for future research and service. Reasoned action theory provides empirical evidence that attitudes and beliefs, as they are influenced by the social environment, predict intentions to act. In turn, behavioral intentions can reliably predict behaviors. This grounded theory study describes a typology of caregiving styles relevant to family members of an individual with ADRD, where caregiving style is defined as a culturally based pattern in thinking and action. The goal of this study was to characterize the relationship between caregiver intentions and care strategies. Study participants included 97 individuals residing in the Washington, DC, area, who provide daily care for a family member with ADRD. Narrative data were collected from each caregiver during three 1-hr interview sessions. A subset of 30 caregiver-care recipient (CR) dyads was videotaped during typical interactions. Four caregiving styles were identified (facilitating, balancing, advocating, and directing), which differ primarily in the intended focus of care and preferred interactions with the CR. The results provide a foundation for future studies of the relationships between sociocultural context, caregiving styles and strategies, and ensuing outcomes for caregiver-CR dyads.

Correlates of Family Structure Transition with Depression in Family Caregivers of Dementia

Correlates of Family Structure Transition with Depression in Family Caregivers of Dementia

Family Caregiving in Dementia: The Asian Perspective of a Global Problem

Background/Aims: With an increasing life expectancy, the number of people suffering from dementia globally will rise to about 115.4 million by 2050. It is projected that in the 21st century, the majority of the world’s older people will be living in Asia. This paper examines the global issues of family caregiving for older persons with dementia from an Asian perspective. Methods: Literature review of published empirical studies from 1990 to October 2010. Results: A full understanding of the specific way that culture could influence family caregivers’ burdens may play an important part in the development of a holistic model for family-centered care. Well-designed psychoeducation interventions or multicomponent interventions could help in reducing caregivers’ burden. With socio-economical and demographical changes, families need to be supported when taking on the caregiving role and be offered alternatives of care. Conclusion: There is a need for future trials with more rigorous randomization and longitudinal follow-up to assess family caregiver burdens at different illness stages. Future studies could focus on protective factors that promote caregivers’ resilience. It is essential to develop psychometrically robust measures for family caregiver burden and gain.

The effect of caregiver burden on cortisol awakening response in dementia family caregivers

Present study was to investigate the effects of caregiver burden on cortisol awakening response (CAR) in dementia caregivers. The participants were 156 women caring for family member with dementia. The participants were extracted the high burden group (more than 21) or the low burden group (less than 21) by the Zarit Caregiver Burden Interview. The participants collected the saliva samples, and completed the questionnaire at their home. The saliva samples were collected four occasions: immediately, on awakening, 30 minutes after awakening, 17:00 pm, and 21:00 pm. CAR has occurred for only the low burden group, but not for the high burden group. These results indicated that the high burden group felt caregiver burden strongly, and had lapsed into the chronic stress state. These findings suggest that high intensity caregiving situations might lead to dysregulated the HPA system due to chronic stress that reflects the psychological and physical exhausted.

Typical and Atypical Dementia Family Caregivers: Systematic and Objective Comparisons

This systematic, objective comparison of typical (spouse, children) and atypical (in-law, sibling, nephew/niece, grandchild) dementia family caregivers examined demographic, caregiving and clinical variables. Analysis was of 1476 caregivers, of whom 125 were atypical, from the Resources for Enhancing Alzheimer's Caregivers Health (REACH I and II) studies. Based on statistical and clinical significance, there were large effects for demographics but no large effects among caregivers or care recipients on clinical and caregiving variables. Non-spouse family members were more likely to be caring for women and unmarried individuals. Grandchildren and nieces/nephews provided care for older care recipients. For care recipients who are unmarried, older, or women, fewer care possibilities may be available; consequently family members other than spouse or children may become their caregivers. Once an individual becomes a caregiver, the clinical experience of dementia caregiving is similar across caregiver types. These findings have implications for clinical care and public policy.

Childhood Adversity Heightens the Impact of Later-Life Caregiving Stress on Telomere Length and Inflammation

To address the question of whether childhood abuse and other adversities have lasting, detectable consequences for inflammation and cell aging late in life, and whether the effects are large enough to be discernible beyond that of a major chronic stressor, dementia family caregiving. Previous research on the physical health consequences of childhood abuse and other adversities has been based on data from young or middle-aged adults. In this community sample of 132 healthy older adults (mean age = 69.70 years; standard deviation = 10.14), including 58 dementia family caregivers and 74 non-caregivers, blood samples were analyzed for interleukin (IL)-6, tumor necrosis factor (TNF)-α, and telomere length, a measure of cell aging. Depressive symptoms were assessed by the Center for Epidemiological Studies Depression Scale. After controlling for age, caregiving status, gender, body mass index, exercise, and sleep, the presence of multiple childhood adversities was related to both heightened IL-6 (0.37 ± 0.03 log10 pg/mL versus 0.44 ± 0.03 log10 pg/mL) and shorter telomeres (6.51 ± 0.17 Kb versus 5.87 ± 0.20 Kb), compared with the absence of adversity; the telomere difference could translate into a 7- to 15-year difference in life span. Abuse was associated with heightened IL-6 and TNF-α levels; for TNF-α, this relationship was magnified in caregivers compared with controls. Moreover, abuse and caregiving status were associated significantly and independently with higher levels of depressive symptoms. Adverse childhood events are related to continued vulnerability among older adults, enhancing the impact of chronic stressors. Childhood adversities cast a very long shadow.

Analysis of the moderating effect of self-efficacy domains in different points of the dementia caregiving process

Introduction: Studies analyzing the moderator role of self-efficacy have centered their attention on the relationship between stressors and distress. However, drawing upon the stress and coping model, the moderator effects of self-efficacy may appear in the relationship between other key elements of the stress process. Objectives and method: The purpose of this study was to analyze, in a sample of 167 dementia family caregivers, (1) the moderating effect of self-efficacy for managing behavioral problems on the relationship between frequency of behavioral problems and burden; and (2) the moderating effect of self-efficacy for controlling upsetting thoughts on the relationship between burden and caregivers’ distress (depression and anxiety). Results: While no support has been found for the hypothesis that self-efficacy for managing behavioral problems moderates the relationship between frequency of behavioral problems and burden, our findings support the moderator role of self-efficacy for controlling upsetting thoughts in the relationship between burden and distress. No differences in distress measures are found between caregivers with high and low scores on self-efficacy for controlling upsetting thoughts when they report low levels of burden. However, when the levels of burden are high, caregivers with high self-efficacy for controlling upsetting thoughts report significantly lower levels of distress than caregivers with low self-efficacy for controlling upsetting thoughts. Conclusion: Self-efficacy for controlling upsetting thoughts may be particularly effective for caregivers who report high burden scores, attenuating the impact of burden on caregivers’ distress (depression and anxiety).

Do Trajectories of At-Home Dementia Caregiving Account for Burden After Nursing Home Placement? A Growth Curve Analysis

Transitioning to the nursing home setting is a complex process for family caregivers of older adults with dementia. While nursing home placement (NHP) can alleviate certain caregiving responsibilities, new stressors can also emerge. In the present study, the researchers examined how care-related factors can change leading up to NHP and how these factors influence caregiver outcomes following NHP. A sample of 634 family dementia caregivers (n = 634) were surveyed at three six-month intervals prior to NHP and once during the 12 month period following institutionalization. Growth curve modeling revealed dynamic changes in certain factors leading up to NHP (e.g., caregivers' perceived health), while other factors remained stable (e.g., caregiver burden). Several factors emerged as significant predictors of caregiver burden following NHP, including pre-placement burden and adult day service utilization. For geriatric social workers, these findings may be useful in assessing family caregivers, and in the development and utilization of appropriate interventions.

Gender differences in the experience of dementia family caregivers

Informal caregiving of older adults is associated with high levels of stress and burden. Although more women than men are caregivers, the number of men assuming family caregiving roles has been increasing. Some research has shown associations between gender and variables measuring burden and coping, while others have not. This project examined gender differences on aspects of caregiving between two cohorts of dementia family caregivers. One provided care to patients with early age of onset AD: the second to a family member with frontotemporal dementia (FTD). Family caregivers were recruited from an NIH-funded grant devoted to enhancing knowledge about FTD and provided consent to participate in a sub-project entitled “The Experience of Family Caregiving”. Participants were identified as the primary caregiver for a person with a diagnosis of dementia (Alzheimer's disease or one of several clinical subtypes of frontotemporal dementia). Caregivers completed the Caregiver Strain Index (CSI), the Beck Depression Inventory (BDI), Perceived Control Questionnaire (PCQ-15), and the SF-36. Twenty-two male and forty-two female caregivers participated (N = 64). The majority were spouses (84.4%), married (89.1%), living with the patient (87.5%), and had known the patient for more than 10 years (98.4%). Twenty-eight were caring for a person with AD (43.8%) and 36 (56.3%) were caring for a person with an FTD subtype. Mean scores were higher for female versus male caregivers on the CSI (females = 6.86 [SD 3.43], males = 5.00 [SD 3.10]) and the BDI (females = 9.45 [SD 7.27], males = 4.77[SD 4.58]) (p = .004) suggesting higher levels of strain and depression among female caregivers. Male caregivers had higher mean scores on the PCQ-15 than females (50.73 [SD 6.17]) versus (45.83 [SD 7.65]) respectively (p = .013) suggesting a better sense of control among males. Sixty-two percent of caregivers rated their health as about the same as the previous year. Mean scores on perceived health status (SF-36) demonstrated that male caregivers had better perceived health status (3.91 [SD .61] versus 3.48 [SD .99]). Findings support that the experience of caregiving may be different for men than women.

The Pilot Study in Qualitative Inquiry

This article discusses the importance of a pilot study in undertaking phenomenological qualitative inquiry for culturally competent research. The pilot work was conducted in preparation for a dissertation on Korean-American family dementia caregiving. The definition and useful functions of pilot studies in qualitative inquiry are particularly identified. To highlight the benefits of pilot work, it describes the specific practical and methodological issues emerging in the pilot exercise as well as the modifications made for the main study as a result of the pilot work. The implementation of the pilot exercise proved to be essential in four ways. These comprise (1) finding issues and barriers related to recruiting potential participants, (2) engaging the use of oneself as a researcher in a culturally appropriate way and from a phenomenological perspective, (3) reflecting the importance of the epoche process and its difficulty in conducting phenomenological inquiry, and (4) modifying interview questions. Finally, the value of sharing the pilot study to develop culturally competent research practice is addressed.

Improving Depression and Enhancing Resilience in Family Dementia Caregivers: A Pilot Randomized Placebo-Controlled Trial of Escitalopram

This study examined the potential of an antidepressant drug, escitalopram, to improve depression, resilience to stress, and quality of life in family dementia caregivers in a randomized placebo-controlled double-blinded trial. Forty family caregivers (43-91 years of age, 25 children and 15 spouses; 26 women) who were taking care of their relatives with Alzheimer disease were randomized to receive either escitalopram 10 mg/day or placebo for 12 weeks. Severity of depression, resilience, burden, distress, quality of life, and severity of care-recipient's cognitive and behavioral disturbances were assessed at baseline and over the course of the study. The Hamilton Depression Rating Scale scores at baseline ranged between 10 and 28. The groups were stratified by the diagnosis of major and minor depression. Most outcomes favored escitalopram over placebo. The severity of depression improved, and the remission rate was greater with the drug compared with placebo. Measures of anxiety, resilience, burden, and distress improved on escitalopram compared with placebo. Among caregivers, this small randomized controlled trial found that escitalopram use resulted in improvement in depression, resilience, burden and distress, and quality of life. Our results need to be confirmed in a larger sample.