Feelings of anger among caregivers of patients with Alzheimer's disease

Tabak N, Ehrenfeld M, Alpert R. International Journal of Nursing Practice 1997; 3: 84–88
Feelings of anger among caregivers of patients with Alzheimer's disease
The purpose of this article is to examine the caregiver's feelings of anger, the causes of these feelings as described by the caregivers and their reactions. Twenty female caregivers of Alzheimer's disease patients participated in a support group at a psychogeriatric centre for 3 years. The group was directed by a registered nurse and a social worker. Frequently, anger was raised as a major issue in the caregiving. The group directors constructed two models that emerged from the support group's meetings. The first model showed the sources of the anger felt by the caregivers and the second model showed coping strategies. The caregivers said that the most infuriating behaviours of patients Alzheimer's disease were: aggressive behaviour, sleeplessness and verbal or behavioural repetition. The caregiver's reactions to the two models are discussed in this paper together with their feelings, which expressed by the women in their own words.     

阿尔茨海默病患者家庭照顾者负担及影响因素分析

目的探讨阿尔茨海默病(AD)患者家庭照顾者负担及影响因素。方法采用整群抽样方法,选取2017年7月至2018年3月在北京市某三甲医院神经内科特需门诊临床确诊的AD患者和照顾者各57例。患者采用一般资料问卷、简易精神状态检查量表(MMSE)、日常生活能力评定量表(ADL)对其认知功能和日常生活能力进行评估。照顾者采用一般资料问卷、照顾者负担问卷(CBI)、综合医院焦虑抑郁量表(HAD)、生活质量(QOL)、直观式健康状况量表(VAS)、社会支持评定量表(SSRS)对照顾者负担进行评估,所有数据录入SPSS25. 0软件进行统计分析。结果 (1) AD患者照顾者的负担总分为(40. 56±13. 16)分,其中以时间依赖型负担和发展受限性负担最重,分别为(11. 96±3. 55)分和(10. 54±3. 34)分。(2)照顾者负担分别与照顾者年龄、每日照顾时间、焦虑状况、患者年龄、生活自理能力呈正相关,与照顾者的生活质量、社会支持及患者的认知功能呈负相关。(3)多元线性回归分析显示,对照顾者负担评分有影响的因素有其他照顾者身份、照顾者的焦虑程度。结论 AD患者的照顾工作大部分由配偶和子女承担,照顾者负担处于中度水平。其他照顾者身份和焦虑状况是影响照顾者负担的主要因素。     

Family caregivers: the experience of Alzheimer's disease

This qualitative, interpretive study generated a model to describe the course of Alzheimer's disease (AD) as experienced by family caregivers in interaction with an afflicted relative. Stages of experiencing AD from a family caregiver's perspective were identified. These included Stage 1: noticing; Stage 2: discounting and normalizing; Stage 3: suspecting; Stage 4: searching for explanations; Stage 5: recasting; Stage 6: taking it on; Stage 7: going through it; and Stage 8: turning it over. Since describing typical stages of Alzheimer's dementia by focusing on the patient's symptoms has generated controversial results, this study shifted the focus to the lived experience of family caregivers. It supports prior contentions that patterns and progression in patients themselves are variable; however, families can be offered knowledge about the disorder's course to ease their fears and their difficulties in interpreting interactions with their demented relatives. The study is based on "methods for discovering" theory. A purposeful sample of 20 caregivers was interviewed for at least 2 hours in their own homes. All caregivers held primary responsibility for home care for a demented relative and had consented to participate in the study.     

Distress among caregivers of phase I trial participants: a cross-sectional study

Purpose

The number of patients with cancer enrolling in phase I trials is expected to increase as these trials incorporate patient selection and exhibit greater efficacy in the era of targeted therapies. Despite the fact that people with advanced cancer often require a caregiver, little is known about the experience of caregivers of people enrolling in oncology phase I clinical trials. We conducted a cross-sectional study assessing the distress and emotion regulation of caregivers of phase I trial participants to inform the design of future interventions targeting the unique needs of this population.

Methods

Caregivers of oncology patients were approached at the patient’s phase I clinical trial screening visit. Caregiver participants completed a one-time survey incorporating validated instruments to comprehensively assess distress and emotion regulation. Basic demographic information about both the caregiver and patient was collected.

Results

Caregivers exhibited greater distress than population norms. Emotion regulation was also moderately impaired. Respondents identified positive aspects of caregiving despite exhibiting moderate distress.

Conclusion

Enrollment of a patient in a phase I clinical trial is a time of stress for their caregivers. This pilot study demonstrates the feasibility of engaging caregivers of phase I trial participants and the need to better support them through this component of their caregiving experience.     

Knowledge and use of community services among family caregivers of Alzheimer's disease patients

The number of people with dementia residing within the community is steadily increasing. Community services can alleviate the burdens experienced by families, but are used infrequently by families of dementia patients. Caregivers (N = 93) of dementia patients were surveyed regarding their knowledge and use of community services. The most frequently used services were family support groups and home health aides. Overall, service use was low despite high levels of perceived availability of services. Older and less educated caregivers had higher levels of uncertainty about service availability. Depressed caregivers were less likely to know about service availability. Implications for practice and research are presented.     

Factors influencing depression in primary caregivers of patients with dementia in China: A cross-sectional study

This study aims to estimate the prevalence and factors of depression in primary caregivers of people with dementia in China, based on a biopsychosocial medical model. A sample of 285 caregiver-patient dyads was recruited from a tertiary psychiatric hospital in Nanjing, between December 2018 and November 2019. The prevalence of depression among primary caregivers of people with dementia was 42.8%. Binary logistic regression analyses revealed that caregivers’ gender (OR=4.692), social support (OR=0.131), health condition (OR=12.994), extraversion (OR=0.102) and neuroticism (OR=2.978) were predictive of depression in those caregivers. Of the above, health condition was the major factor associated with caregiver's depression. The Box-Tidwell method was used to show a linear relationship between continuous independent variables and dependent variable logit conversion values (p = 0.0045). Suggestions are provided to develop support service programs and interventions tailored to caregivers, to help meet their basic substance and mental health needs. (147 words).     

Music therapy with Alzheimer's patients and their family caregivers: a pilot project

The purpose of this paper is to present the results of a pilot project sponsored by a private foundation in Spain ("Fundació la Caixa"), in order to demonstrate some of the applications of music therapy, and to measure more systematically some of its effects on people with a probable diagnosis of Alzheimer's Disease and Related Disorders (ADRD) in early-moderate stages of the disease, and their family caregivers. Subjects for this project were 14 patients (5 women and 9 men) with a probable diagnosis of Alzheimer's disease, and 14 family caregivers (9 women and 5 men) from a rural area outside of Barcelona. Their age range was 70 to 80 years. Prior to the beginning of the project, a neuropsychologist specialized in gerontology administered a series of standardized tests to the participants. These same tests were administered again 2 days before the end of the project and 2 months later for follow-up purposes. The results of the satisfaction questionnaire showed that the caregivers perceived an improvement in the social and emotional areas of their patients, and statistical tests showed significant differences between pre and posttest scores in the following tests: (a) Dementia Scale (X2 = 12.29, p = .002), (b) NPI (X2 = 17.72, p = .001), (c) the Cohen-Mansfield agitation scale (X2 = 11.45, p = .003), (d) Burden Interview (X2 = 9.19, p = .01), (e) Memory and Behavior Problems Checklist (frequency subscale) (X2 = 11.09, p = .004), (f) STAI-S (X2 = 14.72, p = .001), and (g) Beck's Depression Inventory (X2 = 9.38, p = .009). These results and their implications are discussed extensively.     

The impact of Alzheimer's disease on family caregivers

An understanding of the concerns and fears of caregivers of Alzheimer patients can help the health care professional provide home care management more effectively.     

Stress-related vulnerability and usefulness of healthcare education in Parkinson's disease: The perception of a group of family caregivers,a cross-sectional study

Parkinson's Disease is associated with a high assistive complexity, thus generating in caregivers a burden proportional to the intensity of the care provided. This study aims to evaluate whether the stress-related level of caregivers is related to their perception of the need for healthcare education. A cross-sectional study was conducted on 69 family caregivers that completed the Stress-related Vulnerability Scale (SVS scale) with a tool of proposed interventions stratified according to caregivers' need as “nothing”, “somewhat”, “moderately” and “extremely”. A direct association between the SVS scale and the perception of the usefulness of interventions was detected, and significant differences were observed for “Caregivers tele-support group” and “Peer-led support group” interventions, thus suggesting an important role for caregivers' emotional status in considering of training courses. Caregivers are split between low vulnerability, with minimal perception of training need, and high burden state with the acute necessity of support to manage patients.     

Assessing the quality of sleep in Greek primary caregivers of patients with secondary progressive multiple sclerosis: a cross-sectional study

Context

Several studies have investigated the prevalence of sleep disorders in patients suffering from multiple sclerosis (MS) and have shown that up to 54% of patients may have significantly more sleep problems than the general population. To our knowledge, however, no data are available about the quality of sleep of the primary caregivers of patients with MS.

Objectives

The objectives of the current cross-sectional study were to assess the quality of sleep in Greek primary caregivers of patients with MS and to investigate its relationship with the degree of caregivers' emotional distress.

Methods

Twenty-two male and 13 female primary caregivers (mean age 47.3 ± 12.4 years) of an equal number of patients with MS, who consented to participate, completed the validated Greek version of the Pittsburgh Sleep Quality Index (PSQI) and the validated Greek version of the Hospital Anxiety and Depression Scale (HADS). Thirty-five age-, gender-, and education-matched healthy controls were used for comparisons.

Results

Caregivers experienced a higher degree of anxiety than depression. The mean score in the seven-item HADS-A subscale was 9.5 ± 4 (range 3-15) and the mean score in the seven-item HADS-D subscale was 7.1 ± 3.1 (range 2-14). The mean scores of caregivers on both HADS-A and HADS-D were significantly higher than those of controls (P < 0.001). The PSQI scoring demonstrated that 19 (54.3%) caregivers had poor sleep quality (cut-off value of >5). The mean values of caregivers for the PSQI were 6.0 ± 2.8 (range 2-12) compared with controls, who scored at a significantly lower level (1.5 ± 0.8; P < 0.001). Poor quality of sleep was significantly correlated with increased levels of anxiety (r = 0.392; P = 0.02) and depression (r = 0.424; P = 0.01). Among the PSQI components, the sleep duration and sleep latency were mostly influenced by the degree of emotional distress.

Conclusion

A significant proportion of primary caregivers of MS patients experience poor sleep quality. The degree of their emotional distress appears to significantly influence their quality of sleep. Appropriate psychopharmacological interventions may be required for those individuals.