Caregiver distress in parkinsonism

This study examined the frequency and degree of caregiver burden in persons with parkinsonism, a group of disorders with four primary symptoms that include tremor, rigidity, postural instability, and bradykinesia. We assessed associations between perceived caregiver burden and physical, cognitive, and functional impairments using well-established tools for persons with parkinsonism. The 49 individuals with parkinsonism ranged in age from 61 to 87 (mean = 75), while their caregivers (N = 49) ranged in age from 48 to 83 (mean = 70). The caregivers were predominantly either wives (82%) or daughters (6%), with other family members, friends, and/or neighbors (12%) making up the rest. The caregivers reported a relatively high ability for coping (mean scores = 4.6/6). Caregiver burden was significantly negatively associated with activities of daily living and motoric difficulties as measured on the Unified Parkinson's Disease Rating Scale (UPDRS). Likewise, caregiver burden was negatively associated with caregiver self-reported sleep and coping ability. Results did not demonstrate an association on the UPDRS among mentation, behavior, and mood. We found a significant negative correlation for mentation between the Folstein Mini-Mental Status Examination and caregiver burden measures; however, we did not find this association with the Dementia Rating Scale-2. Patient's self-reported pain and caregiver burden were not associated.     

Psychosocial intervention for family caregivers of people with dementia reduces caregiver's burden: development and effect after 6 and 12 months

A number of different intervention programmes have been described in the literature for caregivers of people with dementia, but the nature of intervention has varied widely. The aim of the present study was to evaluate the efficacy of psychosocial intervention on family caregiver's level of burden and satisfaction, and possible influence of the caregiver's relationship and health and the patient's severity of the disease on the effects of intervention. All persons, 70 years and older, from two districts of a municipality (2721 individuals) who were in receipt of any form of social services were invited to participate in a screening of cognitive decline, and 1656 home visits were made. Those with symptoms of cognitive decline, and having a family caregiver, were invited for a further medical examination. Data were analysed from 308 family caregivers: 153 caregivers who underwent intervention and 155 control caregivers who did not. Repeated measures were carried out 6 and 12 months later. Outcomes were measured using instruments that had been tested for reliability and validity, and all patients were diagnosed according to DSM-IV dementia criteria. Caregivers who underwent the psychosocial intervention (5-week programme and 3-month conversation group) reported significantly lower strain and disappointment after 6 months, and this trend remained after 12 months. Satisfaction, measured in terms of purpose, increased in the intervention group and decreased in the control group. The best effect on caregivers in the intervention group was found early in the progression of dementia and in caregivers with impaired health. These findings emphasize the importance of identifying family caregivers early in the caring process to optimize well-being. This study demonstrates that psychosocial intervention with a clearly defined aim that includes giving information and having a conversation group have significant, positive effects on burden and satisfaction for caregivers of people with dementia.     

Family caregivers of patients with frontotemporal dementia: An integrative review

ObjectivesThe purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers’ health and well-being, and (3) identify coping strategies used by family caregivers.BackgroundFrontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia.Design and data sourcesAn integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles.ResultsFindings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful.ConclusionsFamily caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique needs of family caregivers. Future research should focus on examining interventions and strategies to reduce caregiver burden.     

The lived experience of spiritual well-being amongst family caregivers of persons with dementia on palliative care

Family caregivers of persons with dementia are known to experience caregiver burden, anxiety, and social isolation. Spiritual well-being may help ameliorate these characteristics. The meaning of this phenomenon, though, is not known to have been explored previously within this caregiving population. This hermeneutic phenomenological study examined the lived experiences of spiritual well-being in 10 family caregivers. The analysis of semi-structured interviews revealed 5 prominent themes: being connected, strength, presence, hardships, and duty. Phenomenological writing revealed the essence of spiritual well-being in the context of this study. This understanding will help nurses appreciate the importance some family caregivers place on spirituality and recognize when a family caregiver may benefit from a spiritual guidance referral. Further research is recommended to examine associations between spiritual well-being and burden, depression, and social isolation in caregivers of persons with dementia at different stages of receiving palliative care.     

Predictors of depressive symptoms and physical health in caregivers of individuals with schizophrenia

This cross‐sectional study examined relationships among factors influencing caregiver burden, depressive symptoms, and physical health in family caregivers of individuals with schizophrenia. Two hundred family caregivers of individuals with schizophrenia completed standardized questionnaires related to depressive symptoms, physical health, perceptions of burden, coping, and social support. The results revealed that 19.5% of family caregivers of individuals with schizophrenia experienced significant depressive symptoms and 65.5% perceived themselves in poor physical health. Burden, self‐controlling coping strategies, and physical health status were all independently predictive of depressive symptoms. Two emotion‐focused coping strategies (self‐controlling and escape‐avoidance) were independently predictive of caregiver burden. Only burden predicted physical health status. The findings suggest that health professionals who provide community care for those with schizophrenia need to consider the “unit of care” as the family rather than the individual. The health status of family caregivers should be routinely assessed. Individualized interventions to reduce family burden could include community‐based health professionals as well as trained community volunteers, opportunities for social interaction, and improving self‐care for all family members.     

Older caregivers' coping strategies and sense of coherence in relation to quality of life

AIM: This paper reports a study to investigate coping strategies and sense of coherence in relation to gender, the extent of care, caregiving activities and health-related quality of life in a population-based sample of caregivers aged 75 and over. BACKGROUND: Caring for another person can be stressful both emotionally, and caregiver burden may affect quality of life in a negative way for the carer. Caregivers' experience of burden may depend on for example, the behaviour of the person cared for, their own health and their sense of coherence. Older people take a great part of caregiving responsibility and thus understanding of their strain and coping is required. METHODS: A postal survey was carried out in 2001 with 171 informal caregivers, aged 75 or older. The response rate was 47%. The questionnaire included the Short-Form 12, Carer's Assessment of Managing Index, and Sense of Coherence instrument. RESULTS: Almost 70% of caregivers provided help every day. Higher health-related quality of life was predicted by using self-sustaining coping strategies and by high sense of coherence. Poor economic situation and demanding social and practical support predicted low scores. CONCLUSION: These findings could help identify those at risk of low quality of life due to caregiving, dysfunctional coping or lack of information about care. Early intervention, including education about alternative coping strategies and practical information, might allow caregivers better possibilities to continue caring with less negative effects on their lives.     

Family caregivers' subjective experiences of satisfaction in dementia care: aspects of burden, subjective health and sense of coherence

Family caregivers experience both positive and negative reactions in caregiving situations. There has been considerably less published about the positive aspects, however. The general aim of this study was to explore a previously developed instrument to study rewards gained by caregivers and to determine the factors associated with satisfaction in family members caring for patients with dementia living at home. The study group consisted of 153 such family members. Standardized interview schedules exploring different background characteristics, and instruments for assessment of the degree of dementia in the patients and the caregivers' total burden and degree of satisfaction were used. Factorial analysis of the Caregiver's Assessment of Satisfactions Index was performed and it became more specific for conditions of dementia when it was reduced. Stressors as measured by the Caregiver Burden scale and satisfaction can coexist and assess different aspects of the caregiver's situation. The caregiver can perceive both moderate burden and great satisfaction at the same time, and further studies may help to broaden our understanding of how we can reduce the degree of burden whilst increasing the sense of satisfaction.     

居家痴呆病人照料者负担及其相关因素

[目的]了解居家痴呆病人照料者的负担及相关因素。[方法]采用问卷及访谈相结合的方法进行调查。用于照料者的问卷包括:Zarit照料者负担问卷、社会支持问卷、简易应对方式问卷、自行设计的知识技能问卷;用于病人的问卷有:痴呆临床分级量表、日常生活能力量表、简易智能状态量表、加利福尼亚痴呆行为问卷。[结果]居家痴呆病人照料者主观感受的负担较重,中度、重度负担者占67.5%。影响照料者负担的因素有痴呆严重程度、病程、行为和心理症状、认知功能及日常生活能力、照料者同病人之间的关系质量、已照料病人时间、应对方式、社会支持、痴呆知识和照料技能掌握情况。[结论]痴呆病人照料者负担是病人、照料者和社区或社会总体反应的结果,应进行综合干预。     

A practical guide to caring for caregivers

Patients who provide care to family members or friends with dementia are likely to be in a family physician's practice. The caregiver role can be stressful, and identifying these patients can give the family physician opportunities to help patients cope with the challenges of the caregiver role. Family physicians have a systematic approach for assessing the degree of caregiver burden in these patients. Because caregivers are at increased risk for depression and anxiety, screening should be done to exclude the presence of either disorder. The caregiver's skill in managing behavioral problems in the family member with dementia should be assessed. If there are problems, family physicians should provide practical counseling about common caregiving stresses and about resources that benefit caregivers. Helping the caregiver learn strategies for coping with difficulties may help reduce some of the stress the caregiver is experiencing.     

"Special steps": an effective visiting/walking program for persons with cognitive impairment.

A program for elderly persons with cognitive impairment and their caregivers was evaluated for its effectiveness and efficiency with regard to caregiver burden, sense of coherence, satisfaction, and cost to the health-care system. The program consisted of a weekly 2-hour visit and walk by volunteers. During a 9-month period in 1997, all eligible referrals were randomly assigned to receive the service immediately (experimental group) or be placed on a waiting list to receive it 6 weeks later (control group). Eleven caregivers/recipients formed the experimental group; 10 caregivers/recipients formed the control group. All completed questionnaires at randomization and at 6-week follow-up. Perceived burden decreased by 8% only for the caregivers in the experimental group (F = 6.8, p = .02). They indicated that they appreciated the respite and support and that the care recipient enjoyed the visit/walk. Although this study was short in duration and small in sample size, improvements were noted in perceived caregiver burden and caregivers expressed satisfaction with the program. The program did not result in additional health and social-service expenditures.     

Factors affecting burden of family caregivers of community-dwelling ambulatory elders with dementia in Korea

The purpose of the study was to test a staged causal model as a theoretical base to explain the burden of family caregivers of community-dwelling self-ambulatory persons with dementia (PWDs) in Korea. The model contained three stages including antecedents (Stage 1), behavior (Stage 2), and outcome (Stage 3). The antecedents were variables of the PWDs (e.g., cognitive impairment and activities of daily living [ADL] dependency of the PWDs) and caregiver variables (e.g., age, gender of caregiver, and the relationship of caregiver to PWD). Stage 2 focused on wandering behavior. In Stage 3, the outcome variable was caregiver burden. A total of 83 noninstitutionalized, community-dwelling elders with dementia and their family caregivers participated. The instruments used in this study were the Korean version of Mini Mental State Examination, K-PADL (Korean-Physical Activities of Daily Living), Korean-Revised Algase Wandering Scale-Community Version, and K-CWOB (Caregiver Worry, Overload, and Role Captivity Scale-Korean) Korean versions of standardized Western instruments. Results indicate that cognitive impairment and ADL dependency had an indirect influence on caregiver burden through wandering behavior. In addition, caregiver age had a direct impact on caregiver burden. The findings of this study suggest that further refinement of the underlying model is warranted.     

Relationships between income, subjective health and caregiver burden in caregivers of people with dementia in group living care: a cross-sectional community-based study

BACKGROUND: Family caregivers of relatives with dementia report higher level of psychological distress than other caregivers and report their self-related health as poorer than that of comparison groups. AIMS AND OBJECTIVES: The purpose of the study was to examine characteristics of family caregivers and to assess whether income, subjective health, age and relationship were associated with the burden of care they experienced. SETTING: Group living units in southern Sweden. PARTICIPANTS: Fifty caregivers who served as informal caregivers of relatives with dementia in group living care. DESIGN: Interviews regarding economic and social conditions and well-evaluated scales for health and caregiver burden (CB) were used. RESULTS: The majority of the family caregivers were adult children, and twice as many were female than were males. The investigation showed that total burden, strain and disappointment, adjusted for health and age, were related to income. Disappointment showed a relation to subjective health. The adult children showed a significantly higher degree of total burden, irrespective of age, compared to other family caregivers. Low income was associated with a higher degree of burden among adult children. However, elderly participants experienced less of burden than younger ones. CONCLUSION: Our findings indicate that caregivers with low health profile and low income, especially adult children, are associated with higher CB. RELEVANCE TO CLINICAL PRACTICE: People with coexisting risk factors (low income, low perceived health) are the ones who may benefit most from health-oriented interventions.     

Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis.

Because of conflicting results, in order to clarify the state of the science it was necessary to do a systematic analysis of the literature on research testing the effect of interventions on the burden of persons caring for family members with dementia. The purpose of this study was to evaluate, using meta-analytic techniques, those intervention strategies (support group, education, psychoeducation, counseling, respite care, and multicomponent) designed to help caregivers cope with the burden of caregiving. Using meta-analytic methods developed by Glass, McGraw, and Smith (1981) and Hedges and Olkin (1985), 24 published research reports testing 27 treatments for caregivers of adults with dementia were synthesized. Overall, the analysis showed that collectively the interventions had no effect on caregiver burden. Only the category of multicomponent interventions significantly reduced caregiver burden. Burden may be too global an outcome to be affected consistently by intervention. Better and more precise measures are needed to evaluate the effects of caregiver interventions properly.     

The influence of end-of-life cancer care on caregivers

The purpose of this secondary analysis was to glean from prospective data whether those caring for elderly family members recently diagnosed with cancer who ultimately died reported different caregiver depressive symptomatology and burden than caregivers of those who survived. Findings from interviews with 618 caregivers revealed that caregiver depressive symptomatology differed based on family members' survival status, and spousal caregivers experienced greater burden when a family member was near death than did non-spousal caregivers. Family member symptoms and limitations in daily living, as well as caregiver health status, age, and employment, were associated with caregiver depressive symptomatology and burden; however, these associations had no interaction with family member survival status.     

The child with a tracheostomy and gastrostomy: parental stress and coping in the home--a pilot study

Caring for the technology dependent child in the home creates parental stress. Parenting children with device-based respiratory support is particularly stressful as changes in this area can be immediately life threatening. A retrospective pilot study was conducted to describe perceived stressors and coping strategies of the primary caregiver of a child with a tracheostomy and gastrostomy. A convenience sample of 50 families who had a child that received a tracheostomy and gastrostomy in the past two years at our hospital was invited to participate. Three questionnaires were used: the Impact on Family Scale (Stein & Riessman, 1980), the Family Crisis Oriented Personal Evaluation Scale (McCubbin, Olsen, & Larsen, 1981), and a demographic tool. Eighteen (36%) primary caregivers completed the questionnaires. Findings suggest caregivers were coping and perceived themselves as financially stable. However, these data also revealed that caregivers believed there was disruption of social interactions within and outside the family because of the child's condition. Data indicate a need for developing home care plans that include respite services.     

Predictors of Health-Related Quality of Life in Chinese Caregivers of Children With Autism Spectrum Disorders: A Cross-Sectional Study

The purpose of this study was to identify the predictors of health-related quality of life (HRQOL) among caregivers of children with autism spectrum disorders (ASD) in China. Two hundred and seventy-three caregivers were surveyed using questionnaires on HRQOL, family functioning, coping style, social support, and caregiver burden. Besides socio-demographic characteristics of children with ASD and their caregivers, results demonstrate that family functioning, coping style, social support, caregiver burden are predictors of HRQOL in caregivers of children with ASD, and these predictors correlated with each other. These results indicate that comprehensive intervention, which focuses on improving caregivers' coping strategies, social support (especially from family members and friends) and family functioning, and on releasing caregiver burden, should be provided to caregivers of children with ASD.     

Wellbeing among people with dementia and their next of kin over a period of 3 years

Little is known about the dyadic experience over time of people with dementia and their next of kin. The aim of this study was to investigate the state of mind of people with dementia, their next of kin's experience of burden and satisfaction, and factors associated with these experiences over a 3-year period. The sample consisted of 32 people with dementia living at home with family caregivers in the south of Sweden. Data were collected during the period 2004-2007 and consisted of patients self reports (GDS), dementia nurse assessment (MMSE, Berger and ADL) and next-of-kin assessment (patient's state of mind and care provision). Data also consisted of next-of-kin's self reports concerning health, burden and satisfaction. The result showed that patients' state of mind was mainly positive at baseline but a deterioration was seen over time in the patient's mood and cognitive functioning together with an increase in ADL-dependency and suspected depression. Dependency in personal ADL entailed a higher risk of being in a negative state of mind. For next of kin the experience of burden increased while satisfaction decreased over the 3 years. The inter-relationship between the patients' mood and the caregiver's satisfaction and burden seems to get stronger over time. At baseline caregiver burden was mainly related to the next of kins' general health and to patient behaviours that were difficult to handle. During the progression of the disease caregiver satisfaction becomes increasingly related to patient state of mind and dependency. There is, however, a need for more research focusing on the specific inter-relational aspects as previous studies have mainly focused on either the situation for the person with dementia or on the caregiver.     

Caregiver care

In 2009, nearly 66 million Americans (three in 10 U.S. households) reported at least one person providing unpaid care as a family caregiver. More adults with chronic conditions and disabilities are living at home than ever before, and family caregivers have an even higher level of responsibility. Caring for loved ones is associated with several benefits, including personal fulfillment. However, caregiving is also associated with physical, psychological, and financial burdens. Primary care physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of caregiver or care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local area agencies on aging, Web sites, and respite care. Psychoeducational, skills-training, and therapeutic counseling interventions for caregivers of patients with chronic conditions such as dementia, cancer, stroke, and heart failure have shown small to moderate success in decreasing caregiver burden and increasing caregiver quality of life. Further research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Additional support and anticipatory guidance for the care recipient and caregiver are particularly helpful during care transitions and at the care recipient's end of life.