Gender differences in use and availability of home and community-based services for people with dementia.

The purpose was to examine the use and availability of home and community-based services by men and women with dementia using data from the 2003 Canadian Community Health Survey. Variables of interest were based on the Andersen and Newman model and included predisposing, enabling, need, and use of health service variables, perceived unmet health and home care needs, and availability of home and community-based health services.Women reported better health and received more supportive care yet had more unmet home care needs than men.Thus, the caregivers of men with dementia (often their wives) were particularly vulnerable to negative outcomes, as their care recipients had poorer health yet received fewer services. These gender differences should be considered when policies and programs are developed, the needs of care recipients and caregivers are assessed, and services are provided.     

How much should we expect? Family caregiving of AIDS patients in rural Uganda.

The aim of this study was to measure the burden of care for family caregivers of AIDS patients. A cross-sectional exploratory design was used to describe the care experiences of family caregivers of AIDS care recipients. A questionnaire was used to interview 120 family caregivers of AIDS patients from four rural areas in western Uganda. The questions asked were related to 12 domains of family caregiving. Care burden scores of caregivers were calculated. It was found that care burden scores were high in all domains except those regarding relationships within the families and substance abuse. Serious work overload and low health status were reported. The high burden of caregiving puts family caregivers at risk for decreased health status and increased social isolation and depression.     

Dementia‐friendly faith village worship services to support African American families: Research protocol

African American caregivers for persons living with dementia frequently experience emotional strain, burden, social isolation, and depression. One source of support for them when in distress is their church community. However, many African American churches do not have programs to support families and congregants living with dementia. Dementia often restricts persons living with dementia and their caregivers from attending church. Both become increasingly uncomfortable in church settings due to fear of embarrassment, uncertainty about the behavior of the person living with dementia, and shame. Church attendance and religion has been shown to be beneficial for caregivers and elders living with dementia. However, there is little work exploring how involvement in religious practices together (caregivers and persons living with dementia) might enhance the quality of life for these families. This protocol is written to detail the designing and testing of the feasibility and preliminary efficacy of a dementia‐friendly faith village worship service. In the study, we will examine how dementia‐friendly faith village worship services support the well‐being of caregivers and care recipients in three African American churches through observation, interviews, and surveys. A sample of 30 dyads of African American caregivers and persons living with dementia will be asked to attend six modified worship services together over 6 months. In this study, we hope to demonstrate the significant role of churches in the lives of African American family caregivers and persons living with dementia and show that a faith‐based, family‐oriented approach can promote a greater quality of life for African American families living with dementia.     

Effectiveness of interventions aimed at improving grief and depression in caregivers of people with dementia: A systematic review and meta-analysis

Caregivers of people suffering from dementia may go through a grieving process prior to the death of the cared-for person, which is related to mental health and physical problems. Interventions aimed at improving grief and depression are being used in response to these difficulties. The aim of this study was to synthesize and evaluate the evidence for the effectiveness of interventions aimed at improving the grief process in home-based caregivers of people with dementia with the aim of reducing grief and depression. A systematic review, including a meta-analysis, was designed. Following the PRISMA guideline, original articles were searched in the databases: Medline, WOS, Scopus and PsycINFO, up to September 2022. Articles that evaluated interventions aimed at improving the grief process in caregivers of people with dementia, whose care recipients were alive at the beginning of the study at minimum and living at home were selected. Grief and depression were considered outcome variables. A meta-analysis was carried out with a fixed effects model for these variables and for the domains of the Caregiver Grief Scale (CGS). Eight articles met the inclusion and exclusion criteria. Most of the interventions aimed at improving the grief process showed an improvement in grief and depression. The ‘emotional pain’ and ‘absolute loss’ domains of the CGS stood out with an improvement in these variables. Interventions aimed at improving the grief process are relatively effective in reducing grief and depression. Interventions that are even more effective and more robust studies are needed.     

老年失智症患者养老护理员照护性抑郁风险预测模型的构建

目的 探索照顾老年失智症患者的养老护理员发生照护性抑郁的危险因素,构建列线图模型,并加以验证。方法 2019年9—12月,通过便利抽样法选取辽宁省锦州市和沈阳市6家养老机构210例照顾失智症患者的养老护理员为研究对象,运用一般资料问卷、Zung's抑郁自评量表、照护负担量表、心理韧性量表以及领悟社会支持量表进行调查;通过单因素及多因素Logistic回归分析建立抑郁风险预测模型,并构建列线图;运用Bootstrap法验证模型效能。结果 照顾老年失智症患者的养老护理员照护性抑郁检出率为54.7%;二分类Logistic回归分析显示,照顾负担为发生照护性抑郁的独立危险因素（P<0.05）,健康自评状况、心理韧性、社会支持为照护性抑郁的保护性因素（P<0.05）;照护性抑郁列线图模型的校准度（H-L偏差度检验：χ²=4.709,P=0.788）和区分度（AUC=0.976,95%CI:0.959~0.993）良好。结论 照顾失智症患者的养老护理员照护性抑郁的检出率较高,并受健康状况、心理韧性、社会支持以及照顾负担的影响,构建的列线图模型对预测其发生具有一定的科学性和实用性。     

Family caregiver burden by relationship to care recipient with dementia in Korea

The purpose of this study is to compare demographic and clinical characteristics of caregivers and care recipients by caregiver type (i.e., daughter, son, daughter-in-law, and spouse) and to compare the caregiver burden among each type of caregiver. A cross-sectional survey design was used involving 157 primary family caregivers and their care recipients who were diagnosed with dementia. Participants were from the Korean capital and the surrounding suburbs. Spouse caregivers rated themselves as having poorer health and less social support than adult child caregivers did. Those cared for by daughters-in-law were older and demonstrated more memory and behavioral problems than those by spouses, sons, or daughters. Spouses perceived the highest burden among caregivers. Nursing interventions could be developed on the basis of the specific type of burden that various caregivers experience. For future studies, exploring the earlier marital relationship between spouse caregiver and care recipient would be useful for understanding the burden of spouse caregivers.     

Grief in spouse and children caregivers of dementia patients

Caring for a family member with dementia involves loss and inevitable grief during the illness duration. The purpose of this study was to determine the patterns of grief of caregivers of family members with dementia and the relationship of those patterns to the losses and experiences of the caregivers. Participants were 22 spouse caregivers and 11 adult children caregivers of family members with dementia. Caregivers' experiences were measured using visual analog scales and grief using The Grief Experience Inventory. Caregivers' perceptions of the level of affection before the illness and the satisfaction of the marriage before the illness were inversely related to grief symptoms. Grief symptoms were also related to participants' perceptions of loss of the future. Caregivers' emotional distress includes reaction to the losses they are encountering long before their care recipients die.     

Use of day centers for respite by help-seeking caregivers of individuals with dementia

Addressing the use of respite services by caregivers of individuals with dementia is important to improving social support among this vulnerable group. This article uses theory to conceptualize the behavioral, normative, and control beliefs that caregivers of individuals with dementia associate with the use of out-of-home day centers for respite. Interviews and focus groups with 36 caregivers were conducted to explore the beliefs of both users and nonusers of these services. While service users held positive beliefs, nonusers perceived negative outcomes for the care recipient with dementia or faced barriers associated with the recipient's behavioral or physical needs. To address negative perceptions, nurses may need to promote the benefits of day centers for both caregivers and care recipients. However, improvements in program activities and environments, staff development, and caregiver support are also required to address negative beliefs and meet the needs of those currently not accessing care.     

Cost‐effectiveness of a telehealth intervention for in‐home dementia care support: Findings from the FamTechCare clinical trial

Determining the cost‐effectiveness of technological interventions is a crucial aspect in assuring these interventions can be adopted. The FamTechCare intervention is an innovative telehealth support that links family caregivers of persons living with dementia to tailored feedback from dementia care experts based on caregiver‐initiated video recordings of challenging care situations. The FamTechCare intervention has demonstrated significant reductions in caregiver depression and increases in caregiver competence when compared to standard telephone support. The purpose of this article is to report on the cost‐effectiveness of the FamTechCare telehealth intervention. Process‐based costing and a cost‐effectiveness analysis using the incremental cost‐effectiveness ratio (ICER) was completed with 68 caregiver and person living dementia with dyads. The cost of the 12‐week FamTechCare telehealth intervention was found to be greater ($48.43 per dyad per week) due to the telehealth equipment, recording application, and expert panel time compared with the telephone support intervention ($6.96 per dyad per week). The ICER was $18.51 for caregiver depression and $36.31 for caregiver competence indicating that it cost no more than $36.38 per dyad per week over 12 weeks to achieve significant improvement in depression and competence in the FamTechCare caregivers compared to the telephone support caregivers. The FamTechCare intervention appears to be cost‐effective when compared to the telephone support intervention and remains near the willingness‐to‐pay threshold for caregivers providing in‐home dementia care support.     

Caregiver outcomes of a dementia care program

The University of California, Los Angeles Alzheimer's and Dementia Care (ADC) program enrolls persons living with dementia (PLWD) and their family caregivers as dyads to work with nurse practitioner dementia care specialists to provide coordinated dementia care. At one year, despite disease progression, overall the PLWDs’ behavioral and depressive symptoms improved. In addition, at one-year, overall caregiver depression, strain, and distress related to behavioral symptoms also improved. However, not all dyads enrolled in the ADC program showed improvement in these outcomes. We conducted a mixed qualitative-quantitative study to explore why some participants did not benefit and what could be changed in this and other similar dementia management programs to increase the percentage who benefit. Semi-structured interviews (N=12) or surveys (N=41) were completed with 53 caregivers by telephone, mail and online. Seven areas for potential program improvement were identified from the first 12 interviews. These included: recommendations that did not match caregivers’ perceived care needs, barriers to accessing care and utilizing resources, differing care needs based on stage of dementia, needing services not offered by the ADC, needing more education or support, behavioral recommendations that the caregiver felt did not work, and poor rapport of the dementia expert with caregivers. Despite having been identified as having had no clinical benefit from participating in the program, most caregivers (85%) reported that the program was very beneficial or extremely beneficial. Respondents identified the close, longitudinal relationship and access to a dementia care expert as particularly beneficial. This dichotomy highlights that perceived benefit for most of the interviewed caregivers was not captured with the formal instruments used by the program.     

Home-based music strategies with individuals who have dementia and their family caregivers

The purpose of this exploratory study was to test a caregiver-administered music program with family members who have dementia. The music protocol was designed to reduce distress and enhance satisfaction with caregiving, while offering the person with dementia the potential to improve mood and psychological state. Fourteen elders with dementia and their family caregivers were recruited, and 8 completed the protocol. Both caregivers and care recipients improved self-reported relaxation, comfort, and happiness, when mean scores were compared between baseline and music conditions. Caregivers showed the most benefit. While drop-out was high (6 families dropped), and caregiving satisfaction failed to improve over time, caregivers expressed enjoyment in reminiscing and participating in musical activities with their loved ones. More direct intervention by a music therapist is recommended to improve impact.     

Development of Self-Efficacy Questionnaire for Chinese Family Caregivers

The purpose of this study was to develop a Self-Efficacy Questionnaire for Chinese Family Caregivers. Semi-structured interviews with 10 family caregivers of people with dementia were conducted to explore how Chinese caregivers manage caregiving and what difficulties they face. The findings of the study assisted in the development of the instrument. Five categories of caregiver behaviours were identified from the qualitative data: gathering information about treatment, symptoms, and health care; obtaining support; responding to behaviour disturbances; managing household, personal, and medical care; and managing distress associated with caregiving. The challenges of caregiving were also identified, including deterioration of care recipients, particularly their behaviour disturbances, a shortage of supportive resources, stigmatization of dementia among the general population, as well as increased distress and decreased social activities due to increased care demand. The findings were used to develop the Self-Efficacy Questionnaire for Chinese Family Caregivers, and 35 items comprising five subscales (representing the above five categories of caregiver behaviour) were generated.     

Institutional placement of persons with dementia: what predicts occurrence and timing?

The decision to place an individual with dementia in an institutional care facility is often one of the most difficult judgments made in families. The purpose of this study was to determine the key variables that affect the occurrence and timing of institutional placement for families caring for an individual with dementia. The results of this study indicated that the most salient variables affecting the occurrence and timing of institutional placement for persons with dementia were the caregivers' depression scores and the care recipients' behavior change scores over time. These results indicate the need to screen for behavior change in the person with dementia and symptoms of depression in the caregivers to help families predict the need for institutional placement.     

Reactions of assisted living staff to behavioral and psychological symptoms of dementia

This study investigates the experiences of unlicensed staff providing care for older adults with behavioral and psychological symptoms of dementia (BPSD). The purpose of this study was to describe the types and frequency of BPSD reported by unlicensed caregivers and to describe reactions and training of the caregivers who provide care to residents with BPSD. Data were derived from 87 staff-resident dyads in twelve assisted living facilities (ALFs). Types and frequency of BPSD and staff reaction to BPSD were collected using standardized measures. Demographic data included amount of staff training related to caring for someone with BPSD. Dementia related behaviors and psychological symptoms were prevalent in the ALF residents, with memory related symptoms being the most frequently reported. Symptoms of depression in the ALF residents were less frequent yet accounted for the highest level of staff reaction. Limited training related to caring for residents with cognitive impairment was reported by staff. Developing ALF staff skills in identifying and managing depression in older adults with dementia may serve a dual purpose of improving quality of life for residents and for ALF staff.     

Emotional and physical health of spouse caregivers of persons with Alzheimer''s disease and stroke

Providing care for a cognitively impaired spouse can adversely affect caregivers' health. It is not known how early in the caregiver's 'career' emotional and physical health deteriorates. The progressive deterioration associated with Alzheimer's disease (AD) may have different effects on caregivers' health when compared with the potential recovery following a stroke. An exploratory study was conducted with 42 couples, equally divided among early phase AD, ischaemic stroke after hospital discharge, and well controls. Couples were evaluated at baseline (time 1), 6 months (time 2) and 1 year (time 3). At time 1, depression was significantly higher in AD and stroke caregivers when compared to controls. Over time, depression increased significantly for AD caregivers with 21% evidencing moderate to severe depression at time 1 and 50% at time 3. For stroke caregivers there was a significant interaction effect with race: white stroke caregivers' depression increased over time while African American stroke caregivers' depression decreased. Physical health was not significantly different for the three groups and remained stable over time. Cognitive and functional impairment levels of care recipients were significantly related to stroke caregivers' but not AD caregivers' depression. Long-term counselling and support to family caregivers is advocated.     

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.     

Tenerlos en la Casa: the material world and craft of family caregiving for relatives with dementia.

The environment has been found to be critical to the well-being of patients with dementia. The purpose of this study was to describe strategies Colombian caregivers used in the home to manage the care of relatives with dementia. Grounded theory techniques were used. Interviews were conducted in Medellín, Colombia, with 18 primary caregivers and 2 health care professionals. Participant observations were conducted in caregivers' support groups and homes. Family caregivers rebuilt the environment as the disease progressed to accommodate caregiving and preserve family life. Caring for a relative with dementia is a craft that transforms the material world in which patient and caregiver live. The findings show the value of place-sensitive approaches to the study and practice of caregiving.     

痴呆照料者积极感受与焦虑、抑郁的相关性研究

目的探讨痴呆照料者积极感受与其焦虑、抑郁等负性情绪的相关性。方法采用问卷调查法。调查者通过发放问卷对81位痴呆病人主要照料者的一般情况、照料积极感受和负性情绪进行调查。结果积极感受总分及维度1(病人积极反馈)与抑郁呈负相关(r=-0.242,P<0.05),而积极感受总分及各维度得分与焦虑得分相关性无统计学意义(P>0.05)。结论痴呆照料者能够从痴呆病人身上获得积极反馈,其获得的积极感受与抑郁呈负相关,尤其是来自病人的积极反馈有可能降低照料者的抑郁情绪。     

Patient and caregiver outcomes at the integrated memory care clinic

The purpose of this longitudinal cohort study was to explore the outcomes of persons living with dementia (PLWD) and their caregivers during their first 9 months at the Integrated Memory Care Clinic (IMCC). IMCC advanced practice registered nurses provide dementia care and primary care simultaneously and continuously to PLWD until institutionalization. Changes were examined in caregivers’ psychological well-being (perceived stress, depressive symptoms, caregiver burden, and anxiety) and health status and in PLWDs’ quality of life and neuropsychiatric symptoms. Data were collected at baseline, then 3 and 6 months post-baseline. Forty-two caregivers completed all 3 assessments. Most variables remained unchanged. Statistically significant improvements in 5 sub-scales of the Neuropsychiatric Inventory were observed: caregivers’ distress regarding their PLWDs’ delusions and anxiety, and PLWDs’ severity of delusions, depression, and total symptom severity. Further testing of the IMCC is required, including in quasi-experimental studies, to determine its efficacy.     

痴呆患者主要照顾者睡眠障碍研究进展

当前，伴随着痴呆患者群体的日益庞大，痴呆患者主要照顾者的照顾负担和睡眠障碍问题也愈发突出，严重影响到了照护质量，并可能导致照顾者本人出现焦虑、抑郁、心血管疾病等一系列近期和远期健康问题。本综述将重点探讨痴呆患者主要照顾者睡眠障碍的发生现状、影响因素和干预措施，结果发现照顾者的睡眠障碍问题受生理、心理、社会及痴呆患者的疾病进展等多种因素的综合影响，主要的治疗措施包括针对生理因素的光照疗法、针对心理因素的正压减压疗法、针对社会因素的社会支持疗法以及运动锻炼的综合治疗干预方案等。未来，研究者应考虑将多种睡眠障碍测量工具进行整合应用并相互验证，建立一套完善的诊疗评估体系，创造性的开发针对照顾者生理、心理、社会的综合干预治疗方案，并与社区医疗服务协调配合，探索开发整合跨医疗团队、社会医疗服务机构的综合医疗保健系统，为痴呆患者主要照顾者提供全面系统的医疗护理保障。