Pain in community-dwelling persons with dementia: frequency, intensity, and congruence between patient and caregiver report

To better understand the pain experience of persons with dementia and to describe what factors are related to congruence of pain reports within patient–caregiver dyads, a cohort study enrolled patient–caregiver dyads at a primary care geriatrics clinic. Thirty–two percent of persons with dementia self-report pain “right now.” Of these, 65% report slight/mild pain, 27% moderate pain, and 8% severe pain or greater. Fifty-two percent of caregivers report their care recipients with dementia are in some pain “right now.” Of these, 52% report slight/mild pain, 30% moderate, and 18% severe pain or greater. Fifty-nine percent of dyads agree on the presence or absence of patient pain. In multivariate analysis of dyadic congruence of pain reports by patient and caregiver factors, only patient factors predicted congruence. The odds of congruence of pain reports increase 3.7 (1.2–12.3) if the patient is male and decrease 0.938 (0.93–0.99) as the patient becomes more agitated. These findings suggest that community-dwelling persons with dementia report less pain than those in the nursing home and caregivers do a fair job of predicting patient pain.     

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.     

卵巢癌患者确诊前后照顾者健康行为的改变及影响因素分析

目的：探讨卵巢癌患者确诊后,承担主要照顾工作的照顾者健康行为的改变及影响因素。方法采用便利抽样法选取我院妇科卵巢癌患者照顾者90名。采用一般资料问卷、医院焦虑抑郁量表（HADS）及生活方式问卷调查卵巢癌患者确诊前后照顾者健康行为改变情况。结果33．3％的照顾者出现了体质量增加,44．4％承担照顾工作后运动时间减少,12．2％饮酒量较之前有所增加,3．3％每年体检的次数减少。回归分析显示,照顾者抑郁程度、卵巢癌确诊对患者日常活动的影响是导致照顾者出现负性改变的因素（ P＜0．01）。结论卵巢癌照顾者的健康行为出现负性改变,需要给予照顾者在身体上和情感上更多的关注。     

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.     

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.     

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。     

Cognitive stimulation by caregivers for people with dementia

Cognitive stimulation (CS) is a psychological intervention for people with dementia aimed at maintaining cognitive functioning. CS provided by caregivers would allow long-term maintenance without greatly increasing demands on health services, but raises questions concerning treatment fidelity and acceptability, which were investigated in this study. Caregivers of home-living people with dementia were trained to provide CS activities to their relative with dementia. Recordings of intervention sessions and analysis of training manuals suggested adequate delivery of the intervention. Dyads continued with the activities after caregiver training had stopped. In addition, presentation of the activities without supervision from a health care professional had no detrimental effect on well-being in the caregiver or the person with dementia. The majority of caregivers indicated that, even though they experienced some burden from doing the activities with their relative, they themselves had also benefited from the intervention and intended to continue with some of the activities.     

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。     

Dance events as a caregiver intervention for persons with dementia

The aim of the study was to illuminate the phenomenon of dance events as a caregiver intervention for persons with dementia in one nursing home as described by the caregivers. Seven caregivers were interviewed. The interviews were unstructured and conducted while the caregivers were watching a video of dance events arranged in the nursing home. The analysis was carried out using the phenomenological method developed by Giorgi. The results are presented in five consistent themes: (1) prerequisites for dance events; (2) creating and preparing different kinds of activities related to the dance events; (3) emotional arousal; (4) caregivers’ situational understanding; and (5) dance events and contextual consequences and synthesis into a general structure. The meaning of the dance events as a caregiver intervention was founded not only on the dancing itself but also encompassed the ontological state of ‘being together’.     

人文关怀护理用于麻痹性痴呆患者的效果分析

目的 探讨人文关怀护理在麻痹性痴呆患者中的应用效果。 方法 采用单盲随机对照法选取2015年1月-2016年5月住院的麻痹性痴呆患者86例,将其随机分为实验组与对照组各43例。对照组给予常规护理,实验组在对照组的基础上实施人文关怀护理。比较2组患者的认知功能、日常生活能力、照料者负担及满意度。 结果 2组照料者负担及日常生活能力在时间和交互效应方面比较差异有统计学意义,而认知功能仅在时间效应上比较差异有统计学意义。出院时实验组患者满意度显著高于对照组。 结论 人文关怀护理能够明显减轻麻痹性痴呆患者主要照料者的照顾负担,改善患者的生活自理能力,提高患者的住院满意度。     

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.     

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。     

Family caregiver perceptions of end of life in persons with and without dementia

BackgroundWe compare the End of Life [EoL] period, the period of decline to death, for persons with dementia [PwD] to those without dementia, examining the duration and number of stages, and their precipitating events.MethodsIn this cross-sectional study, 70 primary caregivers of decedents were interviewed. Frequencies were compared using the McNemar statistical test.ResultsPwD were more likely to be female and older, compared to those without dementia. For PwD, the reported duration of the EoL period was significantly longer, involved more stages, and included a longer first stage. Precipitating events for EoL were more likely to include cognitive decline for PwD, but for those without, more likely to involve a new medical diagnosis or decline in health status.DiscussionEnd of Life as the final stage of development differs significantly between the two populations in length and other parameters. This has considerable implications for the experiences of PwD.     

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.     

Eating and drinking-related care for persons with advanced dementia in long-term care

BackgroundAdvanced dementia is a life-limiting illness that requires a palliative approach to care. Decline in eating/drinking represents a milestone in progression that warrants decision-making and planning of care. In long-term care (LTC), this is best conducted via family case conferences.AimTo explore decision-making and planning regarding eating/drinking-related care in case conferences for persons with advanced dementia in LTC to inform future practice.MethodsA qualitative approach was taken, using observation of audio-recorded case conferences. Case conferences were conducted in 6 LTC facilities within the intervention arm of a cluster randomized controlled trial. Participants were LTC personnel, doctors, and families of persons with advanced dementia. Content was analysed for eating/drinking-related goals of care and the degree to which decision-making was shared.FindingsThirty-two case conferences considered eating/drinking-related care. The goals included nutrition, hydration, weight gain and maintenance, food enjoyment, social interaction, and independence. Key considerations included secondary health issues impacting comfort, and tensions between food enjoyment versus nutrition and risk of aspiration. While families contributed essential information about eating/drinking history, sometimes decision-making was dominated by professionals and overlooked overall goals of care.DiscussionShared decision-making regarding eating/drinking-related care for persons with advanced dementia in LTC should start with consensus on overall goals of care and include contributions to quality of life as well as risks. Family involvement should be supported beyond information-giving.ConclusionFuture studies are needed to identify the most sensitive and understandable ways for families of discussing eating/drinking-related decline in dementia.     

Pain in persons with dementia and the direct and indirect impacts on caregiver burden

ObjectivesUnresolved pain is related to neuropsychiatric symptoms (NPS) in persons living with dementia (PLWD), and an increase in NPS is distressing for PLWD and their caregivers. Hence, we examined whether pain in PLWD was related to caregiver burden and whether caregiver upset with NPS mediated this relationship.MethodWe examined, cross-sectionally, the relationships among pain in PLWD, caregiver burden, and upset with NPS. Data from 272 PLWD and their caregivers who participated in the Advancing Caregiver Training (ACT) trial were analyzed using structural equation modeling (SEM).ResultsModel fit was satisfactory, and caregiver upset with NPS fully mediated the association between pain in PLWD and caregiver burden.ConclusionCaregiver upset with NPS helps explain the relationship between pain in PLWD and burden in their caregivers. Pain and NPS are amenable to modification, as is caregiver burden, suggesting great opportunity to impact the lives of PLWD and their caregivers.     

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.