基于Citespace的国内外痴呆照顾者研究热点及可视化分析

目的 回顾梳理2011年～2020年间国内外痴呆照顾者研究领域的研究路径及前沿热点,为我国开展痴呆照顾者相关研究提供方向。方法 在CNKI和Web of science中构建检索式,纳入2011年～2020年痴呆照顾者研究领域的相关文献,使用Excel和Citespace 5.5 R2软件对纳入文献的地区、机构、作者、关键词、引文进行计量及可视化分析。结果 计量分析及可视化图谱显示：（1）近三年国际上痴呆照顾者领域的发文增速明显;（2）美国在该研究领域居于领先地位,中国发文量位居第六;（3）国际上形成了以Laura N Gitlin、Anne Margriet Pot、Steven H Zarit等为核心的主要合作团体;（4）该领域研究主题包括：改善照顾者不良结局的社会心理干预研究,针对照顾者抑郁情绪与患者痴呆症状的相关性研究,照顾者生活质量的量表发展及信效度检验研究,以及照顾体验的质性研究等;（5）此外,运用电子设备、在线平台等科技手段的支持研究,旨在提升照顾者自我管理能力的干预研究是近年国际上的研究热点。结论 近年来国际上痴呆照顾者领域研究蓬勃发展,研究主题和方法学呈现多元化,为我国开展相关研究提供了方向。今后应运用多种方法学手段,充分了解我国痴呆照顾者现状及需求,探索更加便捷高效的干预形式,向我国照顾者提供符合国情的本土化支持手段。     

痴呆患者照料者积极感受现状的调查研究

目的 探讨痴呆患者照料者积极感受的现况.方法 采用问卷调查法对76例痴呆患者主要照料者(痴呆组)及76例非痴呆患者的主要照料者(对照组)的积极感受进行调查.结果 痴呆组主要照料者的积极感受总分及各维度得分均显著低于对照组.结论 痴呆患者照料者体验到较高的积极感受,但与非痴呆患者照料者相比,痴呆患者照料者体验的积极感受较低.     

福州鼓山镇老年期痴呆患者照顾者负担的调查

目的 调查福州鼓山镇老年期痴呆患者主要照顾者的负担状况及其影响因素.方法 在福州鼓山镇老年期痴呆患病率调查的基础上,采用自制问卷对符合纳入排除标准的152名老年期痴呆患者的主要照顾者进行调查,并对结果进行分析.结果 本组老年痴呆患者的照顾者总体文化水平较低,小学及以下文化程度者占65.13%;照顾负担重、患者有躯体功能障碍、患者ADL总分越高、没有护工帮助、对老年期痴呆认识不足、认为照顾患者是不得不做的事情、每天照顾时间越长的照顾者负担总分越高.结论 老年期痴呆的主要照顾者中女性的比例高于男性,主要为老年期痴呆患者的子女与配偶,且总体文化程度偏低,对老年期痴呆缺乏正确的认识,不能有效地为老年期痴呆患者提供护理服务.     

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.     

Caregiver burden among dementia patient caregivers: a review of the literature

Purpose: To identify current evidence of factors influencing dementia-related caregiver burden (CB), describe patient and caregiver characteristics associated with CB, and describe evidence-based interventions designed to lessen the burden of caregiving.
Data sources: Comprehensive literature review of Cumulative Index of Nursing and Allied Health Literature, MEDLINE, and Psych Info was performed for the years 1996–2006 of peer-reviewed journals using keywords CB and dementia.
Conclusion: Dementia caregiving has been associated with negative effects on caregiver health and early nursing home placement for dementia patients. Many factors influence the impact of the caregiving experience such as gender, relationship to the patient, culture, and personal characteristics. Although various interventions have been developed with the goal of alleviating CB, evidence suggests that individually developed multicomponent interventions including a diversity of services will decrease burden, improve quality of life, and enable caregivers to provide at-home care for longer periods prior to institutionalization.
Implications for practice: The ability to properly assess the dementia patient–caregiver dyad related to CB is critical to decreasing its negative physical and psychological health outcomes. Appropriately tailored interventions can improve the health and well-being of both caregiver and patient.     

年轻型痴呆症患者及其照护者疾病体验的质性研究

目的 探究年轻型痴呆症（又称早发型痴呆症）患者及其照护者互动与疾病体验,为制订针对该群体的精准干预和支持策略提供证据支持。 方法 采用目的抽样法,于2021年1月—6月选取12对年轻型痴呆症患者及其照护者进行面对面半结构式深入访谈,结合配对访谈分析法和经典内容分析法,对访谈资料进行分析和归纳。 结果 年轻型痴呆症患者及其照护者疾病体验可以归纳为年轻型痴呆症患者和照护者的困境（家庭生活质量受到负面影响、社会活动减少和方式改变、社会对疾病认知不足）、病耻感（否认疾病、渴望尊重、安全感弱、特定社会文化背景下的病耻感）、资源支持匮乏（获取疾病知识及支持途径缺失、专业照护服务紧缺、社会服务和政策不适配）以及个人积极应对策略（以人为中心的照护、照护者的解压方法、主动寻求帮助）共4个主题。 结论 年轻型痴呆症患者及其照护者的疾病体验具有特异性和多样化属性。家庭、社区、医院和社会应充分联动,为这一群体提供支持。研究者应该积极开展跨学科研究,深入了解患者及其照护者面对的挑战与需求,针对性提升其疾病体验,改善其生活质量,帮助其更好地过渡到疾病老年期阶段。     

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.     

Preserving personhood of individuals with advanced dementia: Lessons from family caregivers

This article reports on a phenomenological study of 15 family caregivers who admitted their spouse or parent with probable Alzheimer's disease to long-term care. The caregivers were attuned to the needs, desires, moods and concerns of their family members with dementia; thus, they were attuned to personhood. Caregivers also reported observations of care by nurses and nursing staff. Observations were of individualized care and actions that promoted personhood and impoverished care delivered with minimal or no communication. These family caregivers' perspectives can inform the care of individuals with advanced dementia by nurses and nursing staff.     

The Dutch Objective Burden Inventory: Validity and reliability in a Canadian population of caregivers for people with heart failure

Evidence suggests that caregivers of people with heart failure (HF) often experience caregiver burden and emotional distress. However, these studies measured the caregiving experience using generic tools since a disease-specific tool was not available. Recently, the Dutch Objective Burden Inventory (DOBI) was developed as a disease-specific tool measuring objective caregiver burden in a Dutch HF population of caregivers. Using a cross-sectional design, caregivers of HF patients attending an outpatient HF clinic completed the DOBI, the Hosptial Anxiety and Depression Scale (HADS) and the Caregiver Reaction Assessment (CRA). Caregivers (n = 47) were mainly female (72%) and spouses (72%) of the HF patients with a mean age of 63.1 (± 10.4) years. Patients were older (mean age 72.7; ± 10.6), 64% male and had advanced HF. Feasibility for the objective portion of the DOBI was excellent with < 10% missing values. The subjective component of the DOBI was incomplete and could not be used in the analyses. Seven items had minimal variability. Significant relationships emerged between the DOBI, CRA and HADS revealing construct validity for all subscales of the DOBI. Cronbach's alpha was >.80 for all DOBI subscales. The DOBI is the only disease-specific tool that measures burden for caregivers of HF patients. The objective portion of the DOBI showed evidence of adequate internal consistency and construct validity in a Canadian population of caregivers of HF patients attending a HF Clinic. Further testing is needed to determine floor and ceiling effects for DOBI items and responsiveness of this tool.     

Effects of multi-sensory stimulation for people with dementia

BACKGROUND: Over recent years multi-sensory stimulation (MSS) has become an increasingly popular approach to care and is used in several centres throughout Europe. This popularity could be explained by the limited alternatives available to staff and a widely held belief that MSS is a friendly and highly humane approach. A randomized controlled trial was therefore essential to evaluate the effectiveness and extent of the benefits of MSS. AIM: To assess whether MSS is more effective in changing the behaviour, mood and cognition of older adults with dementia than a control of activity (playing card games, looking at photographs, doing quizzes, etc.). METHODS: A total of 136 patients from three countries [United Kingdom (UK), the Netherlands and Sweden] were randomized to MSS or activity groups. Patients participated in eight 30-minute sessions over 4 weeks. Ratings of behaviour and mood were taken before, during and after sessions to investigate immediate effects. Pre-, mid-, post-trial and follow-up assessments were taken to investigate any generalization of effects to cognition and behaviour and mood at home/on the ward or at the day hospital. RESULTS: There were limited short-term improvements for both the MSS and activity groups immediately after sessions, and limited short-term improvements between the groups during sessions. There were no significant differences between the groups when assessing change in behaviour, mood or cognition at home/on the ward or at the day hospital. In the UK, however, behaviour at the day hospital for both groups remained stable during the trial but deteriorated once the sessions had stopped, and active/disturbed behaviour at home improved but likewise deteriorated once sessions had stopped. CONCLUSIONS: Overall, MSS was found to be no more effective than an activity in changing the behaviour, mood or cognition of patients with dementia in the short- or long-term.     

The effects of support groups on dementia caregivers: A mixed method study

The aim of this qualitative and quantitative study was to understand the effects of support group interventions on the caregiving burden of individuals providing care for people with dementia. This study used the Caregiver Burden Inventory, and focus group interviews (18 caregivers), which were conducted using a semi-structured interview form. The initial study sample was 37 primary caregivers; however, the final analysis included 30 caregivers. The quantitative data were analyzed by paired sample t-test. The interviews being analyzed using content analysis. It was found that there was a significant decrease in the scores for total burden (p = 0.049), social burden (p = 0.008) and emotional burden (p = 0.000) after the intervention. The content analyze revealed three main themes (“having knowledge,” “calming down,” and “acceptance”). Overall, it was concluded that support groups are effective in reducing caregiver burden.     

The effects of support groups on caregivers of patients with schizophrenia

The purpose of this study was to assess the effects of support groups on caregivers of patients with schizophrenia. This was a time series nonequivalent control group design. Subjects were evaluated in three waves of data collection: before intervention, after intervention and one-month follow-up. The support group's effects were measured using changes in the subjects' perceived levels of burden, depression status and satisfaction about their participation in the program. Professionally led support group had a close and time-limited format. The GEE (generalized estimated equation) revealed differences in caregivers' level of burden and depression status between the support and control groups in the post-test and one-month follow-up. The differences highlighted the fact that participation in support groups provides more effective assistance to caregivers than the control group.     

Dyadic relational resources and role strain in family caregivers of persons living with dementia at home: A cross-sectional survey

Background

Family caregivers of older persons with dementia face negative impacts such as heightened role strain due to care receivers’ incremental loss of cognitive function. Dyadic relational resources were found to protect caregivers against negative caregiving outcomes while caring for cancer patients, but had not been explored in caregivers of patients with dementia.

Objective

To explore whether the impact of caregiving demand/care receivers’ cognitive functioning on caregiver role strain is moderated by dyadic relational resources.

Design

Cross-sectional correlational survey.

Setting

The neurological clinics of a 3700-bed medical centre, neurological ward, and day care centre affiliated with a regional hospital in northern Taiwan.

Participants

A convenience sample of 219 family caregivers and care receivers with dementia was enrolled, with 197 (90%) completing the study questionnaires.

Method

Data were collected from family caregivers’ self-completed questionnaires from December 2010 to November 2011. We examined the moderating effects of caregiving demand/care receiver dementia severity and dyadic relational resources (mutuality, preparedness and predictability) on caregiving outcome (role strain) using hierarchical multiple regression analyses. Moderating effects were examined according to two- and three-way interaction terms in the regressions. We also explored the simple effect of each independent variable on role strain.

Results

The dyadic relational resources of mutuality and preparedness moderated the effects of caregiving demand on caregivers’ role strain. That is, a high level of mutuality and preparedness protected caregivers from high levels of role strain, even when caregiving demand was high. Another important factor was a high level of predictability, which tended to decrease role strain. Finally, the association between care receiver cognitive functioning and caregiver role strain was influenced by the level of mutuality between caregiver and care receiver. More specifically, high levels of mutuality diminished role strain in caregivers of patients with mild dementia.

Conclusions

Dyadic relational resources may moderate the effects of role strain. These findings suggest that these dyadic relational resources should be enhanced for family caregivers of patients with dementia to ease their caregiving role strain.     

Cognitive interventions for mild cognitive impairment and dementia: An overview of systematic reviews

PurposeConducting an overview of systematic reviews (SRs)/Meta analyses (MAs) to assess the effectiveness of cognitive interventions on participants with mild cognitive impairment (MCI) or dementia and evaluate the methodological quality of SRs/MAs.MethodsPubMed, EMBASE, Cochrane library, Web of science, China National Knowledge Infrastructure (CNKI) and Chinese Biomedical Databases (CBM) were systematically searched from inception to January 1, 2019 to identify SRs/MAs. Three reviewers independently screened the articles, extracted data and assessed the quality of the included studies according to the Assessing the Methodological Quality of Systematic Reviews 2 (AMSTAR-2), the Grading of Recommendations Assessment Development and Evaluation (GRADE) was used to evaluate the quality of evidence.ResultsA total of 22 reviews were included. New meta-analyses (36 RCTs) showed that cognitive interventions were more effective than routine therapies for the alleviation of MCI and dementia symptoms (SMD: 0.62; 95%CI: 0.47, 0.78; I² = 53.9%). The results of AMSTAR-2 showed that the methodological quality of most included studies was critically low, and two reviews were low quality. The lowest score was item 10, none of reviews reported on the sources of funding for the included studies. Followed by the “provide a list of excluded studies and justify the exclusions” item with only one (4.5%) reviews conforming to this item. Results of GRADE manifested that moderate quality evidence was provided in 11 reviews (39.3%), 12 (42.9%) were low quality and 5 (17.8%) were very low.ConclusionThe present SRs/MAs indicated that persons with MCI or dementia could benefit from cognitive interventions. Future trial designs should focus on measuring changes in individual specific cognitive functions. More high-quality evidence is needed to further determine the effectiveness of cognitive interventions.     

照顾者内疚感量表的汉化及在老年痴呆患者家庭照顾者中的信效度检验

目的 汉化照顾者内疚感量表（Caregiver Guilt Questionnaire,CGQ）,并在老年痴呆患者家庭照顾者中检验其信效度。方法 依据Brislin翻译模型,翻译、回译量表,通过专家咨询和预调查,调试、修订量表。2021年4月—9月,对大连市120名老年痴呆患者的家庭照顾者进行调查,验证量表的信效度。结果 中文版CGQ共22个条目,总量表和各维度的Cronbach’s α系数为0.953、0.799～0.941;总量表和各维度的分半信度为0.881、0.799～0.936。内容效度指数为0.91,各条目均≥0.80,共析出5个公因子,分别为对受照顾者做错了事感到内疚、忽视其他亲人的内疚感、对他人有负面感觉的内疚感、未能应对护理挑战的内疚感、自我照顾的内疚感,累计方差贡献率为76.821%。结论中文版CGQ的信效度良好,适合国内老年痴呆患者照顾者内疚感水平的测量。     

社区生活自理障碍老年人照顾者负担及其影响因素的调查

目的调查社区生活自理障碍老年人照顾者负担水平,探讨影响照顾者负担的相关因素。方法采用非实验性描述性研究,采用日常生活能力量表（ADL）、照顾者人口学资料调查问卷、照顾者负担量表（CBI）调查北京市2个社区72名生活自理障碍老年人及主要照顾者,并进行统计分析。结果72名照顾者轻度负担18名,中度负担50名,重度负担4名。女性照顾者负担大于男性照顾者,有配偶的照顾者比无配偶的照顾者的负担大,不在职照顾者的负担比在职照顾者负担大,自觉身体健康差的照顾者较自觉身体健康好的照顾者的负担大,差异均有统计学意义（P〈0．01或P〈0．05）;生活自理障碍的男性患者照顾者比女性患者照顾者负担大（P〈0．01）,患者ADL得分越高,照顾者的负担越大（P〈0．01）。结论生活自理障碍老年人的照顾者普遍存在不同程度的照顾负担,其总体负担水平处于中度;生活自理障碍老年人照顾者的负担受照顾者的性别、照顾者的婚姻状况、照顾者的自觉身体健康状况、照顾者职业状况、照顾对象的性别及其日常生活能力等因素的影响。     

K点刺激辅助痴呆患者置入胃管的应用研究

目的 研究K点刺激辅助置入胃管在痴呆患者中的应用效果。方法 选取神经内科收治的痴呆患者90例,将其随机分为对照组和观察组,对照组44例采用常规胃管置入法;观察组46例采用冰酸K点刺激辅助置胃管法,比较2组置管成功率、平均置管时间及不良反应发生率。结果 观察组一次性置管成功率明显高于对照组(χ²=45.970,P<0.001),平均置管时间及置管时患者的不良反应发生率均低于对照组(P＜0.05)。结论 冰酸K点刺激辅助置管法可以提高痴呆患者胃管置入的成功率和操作效率,减少不良反应。     

Effect of integrated caregiver support on caregiver burden for people taking care of people with cancer at the end of life: A cohort and quasi-experimental clinical trial

BackgroundPrevious studies have shown small-to-medium effects of support on reducing the caregiver burden for advanced cancer patients. A dearth of studies utilized longitudinal design to examine and evaluate the effect of support for the caregiving burden till the patient's death.ObjectivesTo test the ability of an integrative intervention program for caregivers of advanced cancer patients to lower caregiving burden as death approaches.DesignA two-group comparative design with repeated measures.SettingTwo cancer wards of a single university hospital.ParticipantsAdvanced cancer patients (N = 81) and their caregivers were allocated into two groups: an experimental group (N = 40) receiving coping strategies, assistance, recourses, and education intervention and a control group (N = 41) receiving standard care.MethodsCaregivers received training in the caregiver support intervention at least 3 times every 2 weeks to help them reduce their caregiving burden. Subjective (Caregiver Reaction Assessment) and objective (Heart Rate Variability) measures of caregiver burden were evaluated for caregivers of patients approaching death. Only data within 3 months before the patients’ death were analyzed.ResultsCaregiver self-efficacy significantly increased and the subjective caregiving burden significantly decreased in the experimental group as patients’ death approached. Heart Rate Variability also indicated a calming effect of the intervention, helping caregivers face patients’ death.ConclusionsThe caregiver support intervention can increase caregiver self-efficacy and reduce the subjective caregiving burden. Heart Rate Variability parameters have the potential to be useful for monitoring caregiver burden in facing patients’ death.