Family Caregivers Of People Research Articles

Perceived Caregiving Trajectories and their Relationship with Caregivers' Burdens and Gains.

The study explores the meanings that family caregivers of people with dementia ascribe to the past, present, and future of their role as a caregiver, and how their integration into caregiving trajectories is related to caregivers' burdens and gains. The sample was made up of 197 family caregivers (Mage = 62.1, SD = 12.3, 70.1% females). They completed three incomplete sentences regarding their past, present, and future caring role, the Zarit Burden Interview and the Gains Associated with Caregiving scale. Sentence completions were content analyzed, and the associations between the resulting trajectories and burdens and gains were studied by means of a one-way ANOVA. Caregivers differed in the meanings ascribed to past, present, and future of their role. Stable-negative (M = 43.6, SD = 13.3), regressive (M = 43.3, SD = 12.7), and present-enhancing (M = 37.4, SD = 13.7) trajectories showed higher levels of burdens than progressive (M = 31.3, SD = 12.3) and/or stable-positive trajectories (M = 26.1, SD = 13.7). Progressive trajectories (M = 38.9, SD = 15.7) were related to more gains than regressive trajectories (M = 28.6, SD = 12.7). Family caregivers' evaluations of their past, present, and future are not only important separately, but their combination into caregiving trajectories is also relevant. Such trajectories might be relevant when designing interventions to help caregivers reduce their burden levels and increase the benefits ascribed to their experience. The most adaptive trajectory identified was the progressive one, whereas the regressive trajectory was the most dysfunctional.

USABILITY AND ACCEPTABILITY OF A PEER-DELIVERED TECHNOLOGY BASED MENTAL HEALTH INTERVENTION FOR FAMILY CAREGIVERS

Abstract Family caregivers of people with dementia are critical to the quality of life of care recipients and the sustainability of healthcare systems but face increased risk of emotional distress and negative health outcomes. The purpose of this study was to examine the usability, acceptability, and preliminary effectiveness of a technology-based and caregiver-delivered peer support program, “Caregiver Remote Education and Support” (CARES) smartphone application and to identify barriers and facilitators to the ethical use of former caregivers as technology-based interventionists. Nine family caregivers of people with dementia received the CARES intervention and three former family caregivers of people with dementia were trained to deliver the CARES system. Quantitative data were collected at baseline and at the end of the two-week field usability study. Qualitative data were also collected at the end of the two-week field usability study. The pilot study demonstrated that a two-week, peer- delivered and technology supported mental health intervention designed to improve burden, stress, and strain levels was experienced by former and current family caregivers as usable, acceptable, and ethical. CARES was associated with non-statistically significant improvements in burden, stress, and strain levels. This pre/post field usability study demonstrated it is possible to train former family caregivers of people with dementia to use technology to deliver a mental health intervention to current caregivers. Future studies would benefit from a longer trial, a larger sample size, a randomized controlled design, and a control of covariables such as stages of dementia, years providing care, and the severity of dementia symptoms.

DYING WELL WITH DEMENTIA: SUPPORT NEEDS AND DIVERSITY ACROSS CULTURES AND SETTINGS

Abstract Dementia is increasingly recognized as a terminal illness but the end of life may comprise an extended period with death difficult to predict. Progressive cognitive impairment negatively affects autonomy. Family caregivers of people with dementia often fulfil important roles as spokespersons, informants, partners in care and proxy decision-makers. However, across cultures and individuals, values around autonomy, being in control, and family involvement are diverse. Therefore, perspectives on end of life with dementia and what is good care during the last phase of life may vary as well. Understanding and measuring good end-of-life care in dementia can help improve person and family centered caregiving at the end of life. This symposium will give insights into what is good end-of-life care in dementia and will show cultural and contextual differences drawing on studies in various countries. The contributions are based on diverse innovative and classical qualitative and quantitative methods including those engaging patient and public. Further work addresses how to support good end-of-life care during the COVID-19 pandemic, given the limitations of family restrictions and the need to provide care virtually. We present research on decision aids, care planning tools and care programs with a focus on ensuring that the perspectives of the person with dementia and family are at the forefront, and address individual differences in perceptions of a good end of life with dementia.

Ambiguities of care in Alzheimer’s disease: To care/become a caregiver by obligation or by the charity

Objective: To understand the meaning of the ambiguities of being a caregiver experienced by family caregivers of people with Alzheimer’s disease and health workers inserted in community Mutual Help Groups. Method: a study based on the ontology of Maurice Merleau-Ponty’s experience based on the notion of the body itself. It is revealed by the participation of 12 women, family caregivers, and health workers, members of community mutual aid groups, in the city of Jequié, Bahia, Brazil. The production of the experiential descriptions took place in three Focus Group meetings, during April and December 2019, whose resulting material was submitted to the Ambiguity Analysis. Results: The results reveal the ambiguities of taking care mobilized by the tradition of fulfilling social, cultural, and religious duties. Inserted in the groups, they experience openness to the other, reconfiguring “doing for doing” in “doing for pleasure” in care practices, becoming another. Conclusion: the experience of caring as an obligation, which was previously expressed by anguish, sadness, and illness, after insertion in the group, opens up to the experience of the other and makes care a manifestation of otherness, which privileges the care of the self to care from the other. The study points out the group strategy in health services as a possibility of transforming social actors in the community in the context of Alzheimer’s disease.

Family Caregivers of People with Dementia Associate with Poor Health-Related Quality of Life: A Nationwide Population-Based Study

Despite the growing awareness of poor health-related quality of life (HRQoL) in family caregivers of people with dementia (PWD), their relationship has rarely been explored with population-based samples. The current cross-sectional study aimed to determine the detrimental impact of informal dementia caregiving on HRQoL by using nationally representative population-based samples from the Korean Community Health Survey. Demographics, socioeconomic, and physical and mental health-related characteristics as well as HRQoL measured by the Korean version of the European Quality of Life Questionnaire Five Dimension (EQ-5D) were compared between 9563 family caregivers of PWD and 186,165 noncaregivers. Caregivers had lower index scores and higher frequency of some/extreme problems in all five dimensions of the EQ-5D compared with noncaregivers. Logistic regression adjusting for potential confounding factors found that caregivers had a higher frequency of poor HRQoL (lowest quartile of EQ-5D index) than noncaregivers (adjusted odds ratio [95% confidence interval] = 1.46 [1.39-1.53]). Compared to noncaregivers, caregivers had a higher frequency of some/extreme problems in each dimension of the EQ-5D: mobility (1.30 [1.21-1.40]), self-care (1.62 [1.46-1.80]), usual activity (1.39 [1.29-1.51]), pain/discomfort (1.37 [1.31-1.45]), and anxiety/depression (1.51 [1.42-1.61]). A one-to-one propensity score matching analysis confirmed that poor HRQoL was more frequently found in caregivers compared to noncaregivers (1.38 [1.29-1.48]). Our results indicated that family caregivers of PWD are significantly associated with overall poor HRQoL, underscoring the detrimental impact of informal dementia caregiving on HRQoL. Given the high frequency of poor HRQoL in dementia caregivers and the important recognition of its serious consequences on physical and mental health, clinicians should take into consideration efficient interventions to improve health and HRQoL for family caregivers of PWD.

The Impact of COVID‐19 on Family Dementia Caregivers in Vietnam ‐ Insights from A Memory Clinic in Ho Chi Minh City

AbstractBackgroundThe COVID‐19 pandemic has unprecedented consequences on stress, isolation, and financial well‐being for family caregivers of people with dementia globally. In Vietnam, soaring COVID‐19 cases have led to widespread social distancing, isolation, and quarantine orders from the government. To date, limited evidence exists about the situation of persons with dementia and their family caregivers during the pandemic in Vietnam.ObjectivesThe study aimed to provide insights into the impact of the COVID‐19 pandemic on family caregivers of people with dementia.MethodsMixed methods were used, and data collection took place in two rounds. In the first round during the first wave of infections at Ho Chi Minh City, semi‐structured interviews with caregivers and health care workers (n = 16) were conducted and analysed thematically. In the second round, this data will be complemented with survey data from family caregivers of people with dementia (n = 30). The survey includes a combination of closed‐ and open‐ended questions on the impact of the pandemic on the caregivers’ health and caregiving responsibilities.ResultsResults of the first round of data collection showed a high impact of the pandemic on caregivers resulting in negative psychosocial and emotional consequences of caregivers such as worry, stress, frustration as well as restrictions in time and place. Caregivers had reduced access to counselling services needed. At the same time, treatment services for people with dementia were reduced or even halted. The results from the survey will give additional insights into the impact of the COVID‐19 pandemic on family caregivers of people with dementia, including their challenges and concerns. These results will help to adapt counselling and treatment services for dementia family caregivers and will be presented in detail.ConclusionThe study will lead to a better understanding of the impact of the COVID‐19 pandemic on family caregivers of people with dementia and will facilitate the adaptation of the existing as well as integration of new topics into our caregiver counselling program. Additionally, the development of (digital) self‐help groups for caregivers could be another option to prevent disruption of the health care system and to ensure ongoing service provision despite pandemic‐related restrictions.

Risk factors for loneliness in family caregivers of people with dementia and enduring mental health conditions during the COVID‐19 pandemic in Latin America

AbstractBackgroundDuring the COVID‐19 pandemic, loneliness has increased in the general population due to government measures to contain the spread of the disease. In Latin America (LA), caregiving is most often delivered informally by family members Family caregivers often face mental health challenges linked to their caregiving role and their social context. Pandemic‐related social restrictions have been especially detrimental for older people with dementia or other brain health challenges, as well as their family caregivers. We aimed to investigate the associations of loneliness, social isolation and care burden in these family caregivers.MethodWe undertook a cross‐sectional survey of over 300 informal caregivers of people with dementia or enduring mental health problems living in 4 Latin American countries, Mexico, Brazil, Chile, and Peru. We categorized loneliness into 3 groups ‘low’, ‘moderate’ and ‘severe loneliness’. Here, we analyzed factors related to changes in the prevalence of moderate and severe loneliness before and during the pandemic using a longitudinal multinomial logistic regression model.ResultDuring the pandemic, there was a significant increase in loneliness prevalence (p<.001) among caregivers in Latin America, with more people having moderate (6.25% pre‐pandemic; 17.67% mid‐pandemic) and severe loneliness (2.78% pre‐pandemic; 15.19% mid‐pandemic). Gender differences in the prevalence of loneliness or higher levels of loneliness among dementia caregivers compared to caregivers of other conditions were not seen. The regression model revealed that the increment in risk for moderate loneliness during the pandemic was related to caregivers' age, level of education, and social contact/isolation. Increased risk for severe loneliness was related to caregivers' social contact during the pandemic and perceived mental health.ConclusionPublic health interventions regarding COVID‐19 pandemic should consider increased loneliness in Latin‐American caregivers. This population will need both, short and long‐term mental health and practical support. Next steps include gathering more evidence on specific risk factors for loneliness and its impact on caregivers’ physical and mental health.

Effectiveness of Internet-based psychosocial interventions on psychological distress, expressed emotion, and knowledge about psychosis among family caregivers of persons with schizophrenia: a systematic review protocol.

The objective of this review is to evaluate the effectiveness of internet-based psychosocial interventions versus active comparators (such as in-person interventions, bibliotherapy, or telephone interventions) and passive comparators (such as usual psychiatric care) on psychological distress, expressed emotion, and knowledge about psychosis in family caregivers of persons with schizophrenia. Family caregivers of individuals with schizophrenia are at increased risk of developing mental disorders. Despite the widespread dissemination of reliable guidelines for caring for people with schizophrenia and their family caregivers, these have been poorly implemented. Hence, internet-based interventions with caregivers of persons with schizophrenia could be an effective and feasible option. This review will include studies focusing on the family caregivers of individuals diagnosed with schizophrenia. Internet-based psychosocial interventions will be defined as any psychosocial intervention that is internet-based compared with active comparators (such as in-person interventions, bibliotherapy, or telephone interventions) and passive comparators (such as usual psychiatric care). The primary outcomes of this review will include psychological distress, expressed emotion, and knowledge about the psychosis of family caregivers of persons with schizophrenia. The secondary outcome will be the hospitalization of persons with schizophrenia. MEDLINE (PubMed), CINAHL (Ovid), Scopus, Cochrane Library, and ProQuest Dissertations and Theses will be systematically searched for published and unpublished studies from 2010 in English and Thai. Two reviewers will select studies, critically appraise them, and perform data extraction independently. Finally, when possible, the studies will be pooled through statistical meta-analysis and grading of the certainty of evidence by each outcome. PROSPERO CRD42021255318.

Quality of life and care burden among family caregivers of people with severe mental illness: mediating effects of self-esteem and psychological distress

BackgroundFamily caregivers are important allies for healthcare providers in facilitating the recovery process among people with mental illness (PWMI). The present study examined the factors associated with quality of life (QoL) among family caregivers of PWMI.MethodsA multi-center cross-sectional survey was conducted. Family caregivers of people with schizophrenia, major depressive disorder, and bipolar disorder were recruited using convenience sampling. A survey assessing their QoL, depression, anxiety, and self-esteem was completed with self-rated psychometric scales including the Rosenberg Self-Esteem Scale, Caregiver Burden Inventory, Taiwanese Depression Questionnaire, Beck Anxiety Inventory, and World Health Organization Quality of Life Instrument Short Form. A mediation model was constructed with QoL as the dependent variable, care burden as the independent variable, and psychological distress (including depression and anxiety) with self-esteem as mediating variables.ResultsFamily caregivers of people with schizophrenia had worse QoL compared with counterparts of people with major depression and bipolar disorder. The sociodemographic of both caregivers and PWMI had less impact on QoL when psychological factors were considered. Caregivers with lower self-esteem, higher levels of psychological distress, and heavier care burdens had poorer QoL. Care burden had a significant total effect on QoL. Both self-esteem and psychological distress were significant mediators.ConclusionThe findings indicated that caregivers’ psychological health and care burden influenced their QoL. Interventions that target family caregivers’ self-esteem and psychological distress may attenuate the effect from care burden, and further improve their QoL.

The Effect of Psycho-education on the Affiliate Stigma in Family Caregivers of People with Bipolar Disorder.

IntroductionPaying attention to stigma among caregivers to provide proper care for patients is necessary, and promoting awareness (about mental illness and mental health) to taking care of the caregivers’ health, is crucial.ObjectiveThis study aimed to investigate the effect of psycho-education on the affiliate stigma in family caregivers of people with bipolar disorder.MethodThis study is a quasi-experimental research with an experimental and control groups. 64 family caregivers of people with bipolar disorder participated in this study (32 in each group). Data was collected using the demographic questionnaire and Affiliate Stigma Scale before and after intervention (with 4 weeks gap). The experimental group received a psycho-education program for four weeks. The control group carried on their normal routine lifestyle.ResultsThe mean scores of the affiliate stigma of both control and experimental groups before the intervention did not show a statistically significant difference (P = .36), however after the intervention the results were statistically significant and increased in the experimental group (P < .001).ConclusionAccording to the findings of this study psycho-education is an effective intervention that can reduce the affiliate stigma among family caregivers of people with bipolar disorder and it can be considered as one of the de-stigmatization strategies for them.

The Effect of a Self-Management Program on Care Burden and Self-Efficacy in Family Caregivers of People With Multiple Sclerosis.

Family caregivers of patients with multiple sclerosis (MS) face many caring-related problems that increase their care burden and decrease their self-efficacy. Evidence-based self-management interventions may be used to improve care processes and resolve caregiver concerns. The aim of this study was to investigate the effect of a self-management program on care burden and self-efficacy in family caregivers of people with MS. This study was performed in Iran in 2018-2019. The participants were selected using convenience sampling and assigned to control and intervention groups of 35 participants each using stratified randomization by gender. The intervention group participated in an eight-session self-management program. Data were collected using the Zarit Burden Interview and Scherrer Self-efficacy Questionnaire. Data were analyzed using descriptive and inferential statistics in SPSS Version 16. No significant difference in care burden scores was found between the two groups at baseline ( p = .953). However, mean scores for care burden in the intervention group were significantly higher ( p < .001) both immediately after completion of the intervention (42.6 ± 3) and at 3 months after completion of the intervention (36 ± 3), with the most significant improvement found immediately after the intervention. Similarly, no significant difference in self-efficacy scores was found between the groups at baseline ( p = .976). However, mean scores for self-efficacy in the intervention group were significantly higher ( p < .001) both immediately after and at 3 months after completion of the intervention (60.6 ± 4.7 and 72.7 ± 4, respectively), with the most significant improvement found at 3 months postintervention. Providing self-management programs to caregivers of people with MS is an effective approach to reducing their burden of care and increasing their self-efficacy. Enhancing self-management by learning adaptation skills, self-care skills, social support, and spiritual support promote improved self-efficacy and reduce the care burden of these caregivers.

Automatically Identifying Twitter Users for Interventions to Support Dementia Family Caregivers: Annotated Data Set and Benchmark Classification Models.

BackgroundMore than 6 million people in the United States have Alzheimer disease and related dementias, receiving help from more than 11 million family or other informal caregivers. A range of traditional interventions has been developed to support family caregivers; however, most of them have not been implemented in practice and remain largely inaccessible. While recent studies have shown that family caregivers of people with dementia use Twitter to discuss their experiences, methods have not been developed to enable the use of Twitter for interventions.ObjectiveThe objective of this study is to develop an annotated data set and benchmark classification models for automatically identifying a cohort of Twitter users who have a family member with dementia.MethodsBetween May 4 and May 20, 2021, we collected 10,733 tweets, posted by 8846 users, that mention a dementia-related keyword, a linguistic marker that potentially indicates a diagnosis, and a select familial relationship. Three annotators annotated 1 random tweet per user to distinguish those that indicate having a family member with dementia from those that do not. Interannotator agreement was 0.82 (Fleiss kappa). We used the annotated tweets to train and evaluate support vector machine and deep neural network classifiers. To assess the scalability of our approach, we then deployed automatic classification on unlabeled tweets that were continuously collected between May 4, 2021, and March 9, 2022.ResultsA deep neural network classifier based on a BERT (bidirectional encoder representations from transformers) model pretrained on tweets achieved the highest F1-score of 0.962 (precision=0.946 and recall=0.979) for the class of tweets indicating that the user has a family member with dementia. The classifier detected 128,838 tweets that indicate having a family member with dementia, posted by 74,290 users between May 4, 2021, and March 9, 2022—that is, approximately 7500 users per month.ConclusionsOur annotated data set can be used to automatically identify Twitter users who have a family member with dementia, enabling the use of Twitter on a large scale to not only explore family caregivers’ experiences but also directly target interventions at these users.

Size and characteristics of family caregiving for people with serious illness: A population-based survey.

Family caregivers play a vital role in care for people with serious illness. Reliable population-level information on family caregiving is scarce. We describe the socio-demographic and family caregiving characteristics and experiences of family caregivers of people with serious illness in the adult population. We performed a secondary analysis of the cross-sectional population-based 19th Social-Cultural Changes survey. A random sample of 2,581 Dutch-speaking people aged 18-95, living in Flanders or Brussels, were contacted for participation in the survey between March and July 2014 using a stratified two-step sample. Differences between groups are described using Pearson chi-square tests and analysis of variance. Response rate was 58.7% (1,515/2,581). Over a 12-month period, 7.6% of respondents provided family care for someone with a serious illness (n = 114). They were most often aged 55-74 (36.0%), women (57.9%), worked full-time (42.3%); 31.8% provided at least 10 h of family care each week. Family caregivers of people with serious illness, compared with family caregivers of people with other conditions, provided more medical and nursing care (33.3% vs. 22.5%, p = 0.027), and experienced a higher burden of family caregiving (p = 0.038) but a similarly high meaningfulness of family caregiving. A considerable part of the adult working population provides family care for someone with serious illness. While family caregiving for someone with serious illness shows similarities with family caregiving for people with other conditions in terms of caregiver characteristics and the impact of caregiving on work-life balance and the meaning derived from it, it is also associated with increased burden.

Implementing a nurse-led quality improvement project in nursing home during COVID 19 pandemic: A qualitative study

Background: There is broad consensus that the quality of nursing home (NH) care is a research priority to advance NH practice. However, NHs often fail to implement quality improvement (QI) research projects and complex circumstances such as Coronavirus disease 19 (COVID-19) pandemic may further hinder compliance. This study aims to describe the challenges associated with implementing a nurse-led QI project in NH during COVID-19 pandemic and potential strategies for their overcoming. Methods: A descriptive qualitative study was performed, and three data collection strategies employed, including: 1. semi-structured, open-ended interviews with follow-up questions (one NH manager, three members of the NH staff, and two family caregivers of people with advanced dementia); 2. research diary; and 3. in-the-field-notes. A combined deductive and inductive content analysis was adopted to analyze data. Results: Challenges may be anticipated or unanticipated. QI projects should include preliminary assessments to identify the willingness to change and establish partnerships at multiple levels with all stakeholders, adjust the implementation plan to the organizational context, and be open to ongoing changes. Conclusions: Early and regular engagement of stakeholders strengthen relationships. Moreover, an ongoing reflective practice throughout the entire implementation process promotes openness to change, and finally learning and improvement.

COVID-19 vaccine uptake among family caregivers of people with dementia: The role of attitudes toward vaccination, perceived social support and personality traits.

People with dementia have an increased risk of contracting severe forms of COVID-19. Although in worldwide vaccination programs priority has been given to older people, having taken the vaccine does not totally eliminate the risk of contracting COVID-19 when one is in close contact with unvaccinated people. Thus, family caregivers’ choices to remain unvaccinated against COVID-19 could have potentially lethal consequences for their relatives. To our knowledge, this study represents the first attempt within the international literature to analyze COVID-19 vaccine uptake among family caregivers of people with dementia and to identify some of the psychological factors, related to COVID-19 and vaccination behavior, that could facilitate or hinder vaccine uptake. Contact information for family caregivers was obtained from five different centers and associations throughout the Italian territory. Data were collected from 179 respondents during July-September 2021 using a cross-sectional web-based survey design. More than 75% of the respondents indicated that had been vaccinated against COVID-19 and reported receiving vaccine information mainly from print or electronic newspapers (86%), followed by TV (81%) and families (64.2%). In multivariable logistic regression analyses, worries about unforeseen future effects was significantly related to COVID-19 vaccine uptake, indicating that family caregivers concerned about potential side effects of vaccines were less likely to have been vaccinated against COVID-19 (OR = 0.60, CI = 0.40-0.89). Openness to experience was also related to COVID-19 vaccine uptake, with family caregivers higher on this trait being less likely to have been vaccinated against COVID-19 (OR = 0.83, CI = 0.71-0.98). Implications for targeting of vaccine-related messages are discussed.

"Living Well" Trajectories Among Family Caregivers of People With Mild-to-Moderate Dementia in the IDEAL Cohort.

ObjectivesUnderstanding whether and how caregivers’ capability to “live well” changes over time, and the factors associated with change, could help target effective caregiver support.MethodsWe analyzed 3 time points (12 months apart) of Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort data from coresident spouse caregivers of community-dwelling individuals who had mild-to-moderate dementia at baseline, using latent growth and growth mixture models. Capability to “live well” was derived from measures of quality of life, well-being, and satisfaction with life.ResultsData from 995 spouse caregivers at Time 1, 780 at Time 2, and 601 at Time 3 were included. The mean “living well” score decreased slightly over time. We identified 3 classes of caregivers: one with higher baseline scores declining slightly over time (Stable; 66.8%), one with low baseline scores remaining stable (Lower Stable; 26.0%), and one with higher baseline scores showing marked decline (Declining; 7.2%). Scores on baseline measures differentiated the Lower Stable, but not the Declining, from the Stable class. Longitudinally, the Declining class was associated with care recipient cognitive decline and increasing hours providing care, as well as caregiver stress and depression. Findings were similar when caregivers with other kin relationships were included.DiscussionThe findings indicate the importance of prompt identification of, and support for, caregivers at risk of the declining capability to “live well” and may assist in identifying those caregivers who could benefit most from targeted support.

Factors Associated with the Quality of Life in Family Caregivers of People with Dementia in Taiwan

Objectives: Previous studies showed that caregivers of patients with dementia (PWD) have lower quality of life (QoL) due to several clinical factors related to caregivers and their ill relatives. In this study, we intended to assess the associated factors of QoL in caregivers of PWD in Taiwan. Methods: A cross-sectional survey with 270 dyads of PWD and their caregivers was conducted. We assessed family members' depressive symptoms, anxiety, affiliate stigma, care burden, and QoL, and patients' cognition, severity of dementia, self-care, and mobility skills, as well as neuropsychiatry symptoms of PWD. Results: Caregivers' longer years of education were significantly associated with better QoL in environment domains (β = 0.21, p &lt; 0.01), while the children of caregivers had significantly better QoL in physical domains compared to spouses of caregivers (β = 0.28, p &lt; 0.05). Patients with a past history of psychiatric hospitalization (β = 0.11, p &lt; 0.05) and longer caregiving time (β = 0.13, p &lt; 0.05) were significantly related to better QoL in environment domain. High levels of depression were associated with significantly lower QoL in physical health (β = −0.24, p &lt; 0.05) and psychological domains (β = −0.32, p &lt; 0.01), while more anxiety symptoms were related to significantly lower QoL in physical health (β = −0.26, p &lt; 0.01) and environment domains (β = −0.27, p &lt; 0.01). Higher levels of affiliate stigma were significantly related to lower QoL of caregivers in psychological (β = −0.23, p &lt; 0.01), social relationships (β = −0.27, p &lt; 0.01), and environment (β = −0.19, p &lt; 0.05) domains. Higher levels of care burden were significantly related to lower QoL of caregivers in physical health (β = −0.24, p &lt; 0.01) and environment (β = −0.23, p &lt; 0.05) domains. Conclusion: Caregiver's depression, anxiety, affiliate stigma, and care burden were found to play a critical role in maintaining QoL of family caregivers. We suggest developing effective programs as a direction of future intervention for PWD to improve their QoL.

Supporting family care: a scoping app review

BackgroundMobile applications (apps) may provide family caregivers of people with chronic diseases and conditions with access to support and good information. However, thorough understanding of how these apps meet the main needs and requirements of the users is currently lacking. The aim of this study was to review the currently available apps for family caregivers and evaluate their relevance to main domains of caregiving activities, caregivers’ personal needs, and caregivers’ groups found in previous research on family caregivers.MethodsWe conducted a scoping review on English-language and German-language apps for family caregivers on two major app stores: Google Play Store and iOS App Store. Apps were included if the main target group were family caregivers. Data were extracted from the app descriptions provided by the app producers in the app stores.ResultsThe majority of the apps was designed to assist caregivers in their caregiving activities. Apps were rarely tailored to specific groups of family caregivers such as young carers and their needs. Further, apps addressing caregivers’ personal health, financial security, and work issues were scarce. Commercial apps dominated the market, often intermediating paid services or available for users of specific hardware. Public and non-profit organizations provided best-rated and free-of-charge apps but had a very limited range of services with focus on caregivers’ health and training.ConclusionsOur results indicate that current apps for family caregivers do not distinguish specific groups of family caregivers, also they rarely address caregivers’ personal needs.

Challenges encountered by family caregivers of prostate cancer patients in Cape Coast, Ghana: a descriptive phenomenological study

BackgroundIn Ghana, prostate cancer is more prevalent than all other cancers, with a mortality rate of 75% partly due to late presentation to the health care facilities. Limited health services provision across the country and shortages of skilled nurses place a significant demand on family caregivers who are often ill-equipped for the caring role, resulting in many challenges. As they are expected to provide complex care at home with little resources, information, and support, the healthcare system rarely addresses the challenging needs of these family caregivers. This study explored the challenges encountered by family caregivers of people with prostate cancer.MethodsWe conducted interviews using a descriptive phenomenological approach. Twelve family caregivers of prostate cancer patients were selected through a purposive sampling technique at the Cape Coast Teaching Hospital. All interviews were recorded, transcribed, and analysed using Colaizzi’s (1978) data analysis approach.ResultsThree main themes were identified as critical challenges: education and training needs, resources and caregiver-nurse relationship issues. Under the three main themes emerged seven sub-themes that collectively hindered the family caregiver’s ability to meet the care demands. Sub-themes that emerged were; lack of preparedness towards the caring role, lack of knowledge about condition/ treatment, misconception about the condition, lack of accommodation facilities, financial constraints, poor communication, and poor staff attitude.ConclusionCaregiving is associated with significant challenges that hinder the family caregiver’s ability to care for the patient effectively, further diminishing the caregiver’s quality of life and patient care. Therefore, healthcare professionals, especially nurses, should consider these challenges family caregivers face and take measures to obviate them through education, preparation and support.

Improving a Mobile Telepresence Robot for People With Alzheimer Disease and Related Dementias: Semistructured Interviews With Stakeholders.

BackgroundBy 2050, nearly 13 million Americans will have Alzheimer disease and related dementias (ADRD), with most of those with ADRD or mild cognitive impairment (MCI) receiving home care. Mobile telepresence robots may allow persons with MCI or ADRD to remain living independently at home and ease the burden of caregiving. The goal of this study was to identify how an existing mobile telepresence robot can be enhanced to support at-home care of people with MCI or ADRD through key stakeholder input.ObjectiveThe specific aims were to assess what applications should be integrated into the robot to further support the independence of individuals with MCI or ADRD and understand stakeholders’ overall opinions about the robot.MethodsWe conducted in-person interviews with 21 stakeholders, including 6 people aged >50 years with MCI or ADRD living in the community, 9 family caregivers of people with MCI or ADRD, and 6 clinicians who work with the ADRD population. Interview questions about the robot focused on technology use, design and functionality, future applications to incorporate, and overall opinions. We conducted a thematic analysis of the data obtained and assessed the patterns within and across stakeholder groups using a matrix analysis technique.ResultsOverall, most stakeholders across groups felt positively about the robot’s ability to support individuals with MCI or ADRD and decrease caregiver burden. Most ADRD stakeholders felt that the greatest benefits would be receiving help in emergency cases and having fewer in-person visits to the doctor’s office. Caregivers and clinicians also noted that remote video communication with their family members using the robot was valuable. Adding voice commands and 1-touch lifesaving or help buttons to the robot were the top suggestions offered by the stakeholders. The 4 types of applications that were suggested included health-related alerts; reminders; smart-home–related applications; and social, entertainment, or well-being applications. Stakeholders across groups liked the robot’s mobility, size, interactive connection, and communication abilities. However, stakeholders raised concerns about their physical stability and size for individuals living in smaller, cluttered spaces; screen quality for those with visual impairments; and privacy or data security.ConclusionsAlthough stakeholders generally expressed positive opinions about the robot, additional adaptations were suggested to strengthen functionality. Adding applications and making improvements to the design may help mitigate concerns and better support individuals with ADRD to live independently in the community. As the number of individuals living with ADRD in the United States increases, mobile telepresence robots are a promising way to support them and their caregivers. Engaging all 3 stakeholder groups in the development of these robots is a critical first step in ensuring that the technology matches their needs. Integrating the feedback obtained from our stakeholders and evaluating their effectiveness will be important next steps in adapting telepresence robots.