Informal Caregivers Of Persons Research Articles

A Swedish study about how staff reason and act when they suspect domestic abuse perpetrated by informal caregivers of persons with dementia

ABSTRACT Older persons with dementia have several risk factors for being exposed to domestic abuse, for example dependency on others to manage daily life. The purpose of the study was to explore how staff act and reason when suspecting domestic abuse perpetrated by informal caregivers of persons with dementia. Eight semi-structured group interviews were conducted with staff (n = 39) working with persons with dementia living in their ordinary homes. A thematic analysis generated two themes; Missing a map for guidance and Being left to one’s own inner compass for direction indicating that staff experienced a lack of guidelines and protocols to work from when suspecting abuse. This resulted in staff taking actions based on their own norms, values, and experiences when suspecting domestic abuse. Not knowing how to act risks leading to staff ending up doing nothing or being unable to identify effective interventions, accompanied by feelings of guilt and ethical stress. The results highlight the necessity of providing staff with tools for how to act when they suspect domestic abuse, such as collaboration with others, colleagues, and other organisations where different options for interventions can emerge.

Effects of Yin Yoga on Burden and Self-Compassion in Caregivers of Persons With Dementia: A Pilot Study.

Informal caregivers of persons with dementia face tremendous challenges in balancing their own needs and those of the care recipient. The aim of the current pilot study was to test the feasibility and acceptability of a Yin yoga intervention on caregiver burden and self-compassion. This study used a convenience sample (N = 5) with one group pre-survey/post-survey design. Participants were asked to complete a 60-minute Yin yoga intervention via Zoom three times per week for 8 weeks. Pre- and post-intervention comparisons were performed on caregiver burden (Zarit Burden Interview Scale) and self-compassion (Neff Self-Compassion Scale). Results indicated that the intervention was feasible and acceptable with slight modifications, including (a) leveraging social networks to increase the scope of recruitment efforts nationally and increase the size and diversity of the sample, (b) adding an activity log to better understand adherence, and (c) offering more live yoga sessions. [Journal of Gerontological Nursing, 49(6), 22-27.].

Role Identity Transition: A Conceptual Framework for Being the Spouse of a Person With Early Onset Dementia.

Informal caregivers of persons with early onset dementia (PWEOD) are usually the spouses of affected individuals. These caregivers face unique challenges related to the unexpected nature of disease onset at this early life stage along with the accompanying symptoms, which can be different from those in late onset dementia. The current study explores the meanings these caregivers make of their situations and actions in response to their experiences. Findings provide a basis for development of a conceptual framework illustrating the basic, psychosocial processes underlying their shared situation. Grounded theory methodology was used. Qualitative data were collected through semi-structured interviews with 15 participants. Data were analyzed using constant comparative techniques and situational analysis. A distinction was made across participants between identifying as spouse versus caregiver for their PWEOD. Each participant had made or was making an identity transition from viewing their role as becoming more caregiver-like toward an eventual, complete shift to that of caregiver in a stepwise fashion. Incremental shifts in identity reflected challenges to the notion held of what it means to be a spouse. Results support prior research highlighting the unique experiences of caregivers of PWEOD while providing a framework for understanding the unique situations of these care-givers. Findings also inform nursing interventions tailored for spouses of PWEOD. [Journal of Gerontological Nursing, 49(8), 27-34.].

Strategies for Alleviating the Burden Experienced by Informal Caregivers of Persons With Severe Mental Disorders in Transitional Countries: Protocol for a Scoping Review.

Caregiver burden is highly prevalent among the informal caregivers of persons with severe mental disorders (SMDs). As such, strategies to support informal caregivers are necessary to enable them to cope with their caregiving role. Currently, there is limited evidence on the extent of existing strategies for supporting informal caregivers of persons with SMDs in transitional countries. This study presents a scoping review protocol to identify and describe the extent and type of evidence on the existing strategies for alleviating caregiver burden among informal caregivers of persons with SMDs in transitional countries. This scoping review will be conducted using the Joanna Briggs Institute's methodology for scoping reviews. The participants, concept, and context framework will be used to select relevant studies. This review will include studies on strategies for addressing caregiver burden among informal caregivers, with a specific focus on studies outlining caregiver interventions, caregiver support, and policies with strategies for supporting informal caregivers of persons with SMDs. Relevant studies conducted in transitional countries will be considered for inclusion. There will be no restrictions on publication type or design. Published literature will be accessed by searching electronic databases, including PubMed, MEDLINE, CINAHL, and PsycINFO; ProQuest will be used to access gray literature. Additionally, the reference lists of key studies will be reviewed to identify studies for inclusion. The search will be restricted to articles published between 2011 and 2021. Two reviewers will work independently to screen all abstracts and full texts for inclusion in line with the set inclusion criteria. Extracted data will be categorized and described using descriptive qualitative content analysis. This protocol will guide a scoping review to identify and describe the extent and type of evidence on the existing strategies for alleviating caregiver burden among informal caregivers of persons with SMDs in transitional countries. The main results of this scoping review will synthesize evidence from peer-reviewed and gray literature sources outlining various services and interventions for supporting informal caregivers of people with SMDs in transitional countries. In addition, existing gaps in the literature will be identified to inform future studies. The increase in caregiver burden among informal caregivers in mental health warrants the development and implementation of strategies for alleviating the burden. This scoping review aims to increase awareness on the various services and intervention strategies for alleviating burden among informal caregivers in transitional countries. RR1-10.2196/44268.

Caregiver burden in Parkinson’s disease: a mixed-methods study

BackgroundProviding informal care for a person with Parkinson’s disease (PD) can be a demanding process affecting several dimensions of a caregiver’s life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden.MethodsWe conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson’s Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson’s Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively.ResultsA total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism.ConclusionsThe burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Extent of caregiver burden among informal caregivers of persons with severe mental disorders in rural South Africa.

Informal caregivers are the backbone of recovery for people with severe mental disorders in South Africa, particularly in rural areas where access to mental health services is limited. While their unique contribution and the subsequent burden arising from occupying the role of informal caregiver are acknowledged, there is limited evidence on the extent of the subjective and objective burdens among informal caregivers of people with severe mental disorders in rural areas. This article reports on a study that aimed to establish the extent of subjective and objective burdens among informal caregivers of people with severe mental disorders in rural South Africa. A descriptive quantitative cross-sectional design was used. Data were gathered through structured interviews with 170 informal caregivers of people with severe mental disorders attending an outpatient clinic at a rural hospital in South Africa. A structured questionnaire guided the interviews and included demographics and caregiving characteristic information. Montgomery, Gonyea and Hooyman's scale was used to assess objective and subjective burdens. Data was analysed descriptively using Stata v15. The majority of the participants were female informal caregivers (83.5%) between the ages of 45 and 64 years (45.3%), and parents represented the largest proportion (45.3%) of caregivers. The global burden scores revealed that most informal caregivers reported moderate-to-severe objective burden and mild-to-moderate subjective burden. Significant associations with objective burden were established for age, gender and residence (p=0.025, p=0.034 and p=0.038, respectively), and subjective burden yielded significant associations with daily caregiving (p=0.012). Caring for people with severe mental disorders is associated with high levels of objective and subjective burdens. The present study highlights the need to integrate the assessment of burdens among informal caregivers of people with severe mental disorders in routine clinical practice. Additionally, the study urgently calls for the development of strategies to support informal caregivers to ensure successful community reintegration among people with severe mental disorders.

Strategies to Alleviate the Burden Experienced by Informal Caregivers of Persons With Severe Mental Disorders in Low- and Middle-Income Countries: Scoping Review.

There is considerable evidence of the burden of care encountered by informal caregivers of persons with severe and enduring mental health conditions in low- and middle-income countries. Previous studies have highlighted the need to support these informal caregivers as key players in the care of these patients. To date, limited evidence exists on the extent and types of strategies for supporting these informal caregivers in low- and middle-income countries. This scoping review aims to identify and describe the extent and type of evidence on the existing strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions in low- and middle-income countries. A systematic literature search was completed following the Joanna Briggs Institute methodology for scoping reviews. The participants, concept, and context framework was used to guide the search for literature sources across 5 databases: PubMed, MEDLINE, CINAHL, and PsycINFO for published literature and ProQuest for unpublished literature. This review included studies that reported on strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions, with a focus on studies that evaluated or recommended caregiver interventions and support strategies in low- and middle-income countries. The search was limited to studies conducted between 2001 and 2021, and only papers written in English were considered for inclusion. Using the Covidence software (Veritas Health Innovation), 2 reviewers independently screened the papers, applied the inclusion and exclusion criteria, and met biweekly to discuss and resolve conflicts. The relevant studies and reported outcomes were summarized, organized, and analyzed descriptively using numeric summary analysis and deductive content analysis. Of the 18,342 studies identified, 44 (0.24%) met the inclusion criteria. The included studies were from 16 low- and middle-income countries in Asia, Africa, Europe, and South and North America. Most studies (21/44, 48%) were randomized controlled trials conducted in Asian countries. The identified strategies were grouped into 2 categories: implemented and recommended intervention strategies. Identified strategies included community-based interventions, psychoeducation interventions, support groups, cognitive behavioral therapy, spirituality-based interventions, and smartphone-based interventions. In addition, mindfulness and empowerment, collaborative interventions, standard care, financial and social support, counseling, occupation-based interventions, policy and legislature, and access to mental health care were identified. Psychoeducation and support group interventions were identified as common strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions. This review provides evidence on the types of implemented and recommended strategies for alleviating the burden of care among informal caregivers in low- and middle-income countries. Although psychoeducational interventions were the most preferred strategy for alleviating burden, their benefits were short-lived when compared with peer-led support groups. RR2-10.2196/44268.

Dementia in metaphors: A qualitative study among informal caregivers of people with dementia from migrant and ethnic minority groups

IntroductionPeople with dementia from migrant and ethnic minority (MEM) groups often receive suboptimal care. Differences in perceptions, values and preferences, and linguistic barriers may complicate communication between persons with dementia, their families and healthcare professionals. Metaphor analysis can provide unique insight into the lifeworld of people with dementia and their informal caregivers. This study identified the metaphors with which informal caregivers of persons with dementia from diverse cultural-linguistic backgrounds understand and discuss dementia. MethodsWe conducted 7 focus groups (n ​= ​42) and 12 interviews (n ​= ​13) with informal caregivers of persons with dementia living in the Netherlands from six different cultural backgrounds: Dutch, Chinese, Turkish, Moroccan, Surinamese, and Dutch-Antillean. Interviews, in the native tongue of participants, were analyzed for the presence of direct and indirect metaphor. ResultsThe results indicate a conspicuous lack of metaphor to reflect on the nature and experience of having dementia. Two typical conceptual metaphors in health communication (journey/war) are virtually absent in all MEM groups. Furthermore, results suggest a one-sided and negative outlook on dementia, with an emphasis on persons with dementia as ‘childlike’ or ‘crazy’. ConclusionOur results suggest a lack of extensively available sophisticated (metaphorical) language to consider daily life with persons with dementia. There is a clear need to address the stigma and lack of medical knowledge surrounding dementia in these MEM groups and to carry out more cross-linguistic and cross-cultural research to explore which metaphors aid understanding and lead to the empowerment and restoration of self-worth of people with dementia.

Needs of informal caregivers of people with a rare disease: a rapid review of the literature

ObjectivesMany people living with a rare disease (RD) are cared for by a family member. Due to a frequent lack of individual RD knowledge from healthcare professionals, the patient and...

Informal Caregivers' Experiences with Performing Telemonitoring in Heart Failure Care at Home-A Qualitative Study.

Informal caregivers have an important role in caring for family members at home. Supporting persons with a chronic illness such as heart failure (HF) in managing their self-care is reported to be a challenge and telemonitoring has been suggested to be of support. Aim: to explore informal caregivers’ experiences with performing non-invasive telemonitoring to support persons with HF at home for 30 days following hospital discharge in Norway and Lithuania. Methods: A qualitative explorative study of informal caregivers performing non-invasive telemonitoring using lung-impedance measurements and short message service (SMS). Data was collected using semi-structured interviews with informal caregivers of persons with HF in NYHA class III-IV in Norway and Lithuania. Results: Nine interviews were conducted with informal caregivers of persons with HF who performed non-invasive telemonitoring at home. A sequential process of three categories emerged from the data: access to support, towards routinizing, and mastering non-invasive telemonitoring. Conclusion: Informal caregivers performed non-invasive telemonitoring for the first time in this study. Their experiences were of a sequential process that included access to support from health care professionals, establishing a routine together, and access to nurses or physicians in HF care as part of mastering. This study highlights involving informal caregivers and persons with HF together in the implementation and future research of telemonitoring in HF care.

The impact of having foreign domestic workers on informal caregivers of persons with dementia \u2013 findings from a multi-method research in Singapore

BackgroundInformal caregivers of persons with dementia (PWDs) sometimes engage foreign domestic workers (FDWs) to support their caregiving journey. However, there has not been much research to establish if this is really beneficial. The current study aims to investigate whether engaging FDWs specifically for caregiving of PWDs truly moderates caregiver stress and to explore caregivers’ experiences of engaging FDWs.MethodsA multi-method study design with a quantitative and qualitative sub-study was adopted. For the quantitative sub-study, 282 informal caregivers of PWDs were recruited. Propensity score matching analysis was used. For the qualitative sub-study, 15 informal caregivers with FDWs were interviewed. Inductive thematic analysis was conducted.ResultsThe quantitative sub-study confirmed that engaging FDWs did moderate the depressive symptoms of informal dementia caregivers (marginal effect = -3.35, p = 0.0497). However, such support did not affect their caregiving burden, self-efficacy, and perceived positive aspects of caregiving. The qualitative sub-study suggested that engaging FDWs is an ambivalent experience, which entails both support and challenges.ConclusionsThe current study confirmed previous research findings, that engaging FDWs moderated depressive symptoms among caregivers of PWDs, and it could be through their physical support such as in daily caregiving activities. Policy-makers may consider providing more subsidies to caregivers caring for PWDs with mobility issues to hire FDWs. They may also consider providing training to FDWs on dementia caregiving skills and improving the intake of such training as this might be helpful for both FDWs and caregivers during this journey.

Enhancement of Aging in Place: An Evolving Understanding of Person-Centered Dementia Care in Home Settings.

There has been a rich body of literature on informal caregivers of persons with dementia (PWD). However, little has been discussed on how to facilitate person-centered dementia care in home settings with spouses as primary caregivers. We tend to take it for granted that spouses provide person-centered care for PWD. However, being spouses of PWD and living with them for several decades does not necessarily mean that it is easier for them to provide person-centered dementia care and maintain valued and healthy relationships. The current study aimed to explore dyadic experiences of PWD and their spousal caregivers and develop a culturally and contextually-sensitive understanding of person-centered dementia care in home-based settings. A total of 20 dyads of PWD and their care partners were selected for this study. A trained qualitative interviewer conducted a one-on-one interview with each participant with dementia and their care partners separately. We adopted both conventional and directed content analyses. Our findings provide examples of care partners provide person-centered care, resulting in a profound positive impact on their wellbeing. Adaptive leadership and collaborative work emerged as a key finding in facilitating person-centered dementia care. Cultural relevancy of person-centered dementia care was also interpreted from the data. The study findings provide implications for the evolving of person-centered dementia care model in home-based settings. Findings from this study highlight the significance of facilitating person-centered dementia care in home-based settings between PWD and their primary family caregivers.

Attention control in a trial of an online psychoeducational intervention for caregivers.

In reports of randomized controlled trials, thorough description of the attention control condition has been recommended, yet is frequently lacking. The Tele-Savvy Caregiver program for informal caregivers of persons living with dementia was tested in a randomized controlled trial with an attention control condition. The purpose of this trial was to test Tele-Savvy's efficacy in reducing the negative effects of caregiving on caregivers, promoting quality of life for persons living with dementia, and improving caregiver mastery. We describe the design and implementation of and examine the outcomes associated with the attention control condition. Caregivers were randomized to the immediate Tele-Savvy (active condition), Healthy Living (attention control), or waitlist. The attention control content was focused on healthy lifestyle and was not intended to affect the outcomes that Tele-Savvy targeted. The attention control group was similar to Tele-Savvy in the intervention structure and duration: it consisted of seven weekly group videoconferences and 36 video lessons. Data on outcomes of caregivers and persons living with dementia were collected at baseline and 3 and 6 months postbaseline. Multilevel mixed effects models were used to determine changes in the outcomes. One hundred and eleven caregivers were randomized to the attention control condition (attrition 21.6%). Eighteen formative assessment interviews focusing on caregivers' experience in the attention control condition were conducted. The attention control condition completers had no statistically significant changes in the variables that Tele-Savvy targeted. These results may be used in the design and implementation of attention control conditions in behavioral intervention research.

Bereavement and Support Experiences of Informal Caregivers of Persons with Amyotrophic Lateral Sclerosis: A Qualitative Study

Informal caregivers provide the major part of care for persons with amyotrophic lateral sclerosis (ALS), a terminal neurodegenerative disease. Apart from providing care, informal caregivers are themselves in need of support to fulfill the task of daily caregiving and to reduce their burden of caregiving. This need for support does not end with the death of the person cared for. In this study, we explore the themes of bereavement and support experience of informal caregivers of persons with ALS from interviews conducted with bereaved informal caregivers (n = 14) in Switzerland. Three key themes were salient in our data: Reacting to bereavement, finding support, and adjusting to life without the person with ALS. These themes are contrasted with themes from interviews (n = 11) with healthcare professionals (nurses, therapists, physicians) who care for patients and families with ALS. The themes described were offering support and identifying gaps in the support. We discuss support after bereavement for informal caregivers of persons with ALS in the established public health model of bereavement support. Bereavement support needs to be proactive from healthcare professionals; however, it requires the goodness of fit to address those in need and not those who are adequately supported by informal sources of support.

Life satisfaction and the mediating role of character strengths and gains in informal caregivers.

WHAT IS KNOWN ON THE SUBJECT?: The role of informal caregiver can have both negative and positive consequences for a person's well-being. The main theoretical framework for explaining these consequences is the stress process model, which considers contextual variables, stressors and mediating/moderating factors. The latter are psychosocial factors such as coping strategies, personal mastery, social support or beliefs and values which may influence caregiver well-being. The perception of gains in caregiving has also been proposed as a mediating variable since it may act as a coping strategy. However, few studies have examined values and perceived gains as mediating variables with life satisfaction as the outcome. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: This study explores the role of character strengths and caregiver gains as mediators between stressors and life satisfaction in informal caregivers of persons with dementia. The results identify hope as a key character strength, its lack being one pathway through which stress may lead to low life satisfaction and low perceived gains from caregiving. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Caregivers who experience a lack of hope may be less able to generate goals and be less motivated to achieve them. Our findings are relevant to gerontological nursing based on the Senses Framework as they confirm the importance of the senses of purpose and achievement. Nursing and care staff can play an active role in helping informal caregivers to meet their goals by promoting these two senses, thereby fostering a more positive caregiving experience. ABSTRACT: Introduction Being an informal caregiver can have both negative and positive consequences for well-being. Within the framework of the stress process model, few studies have examined values and perceived gains of caregiving as mediating variables of life satisfaction. Aim To explore the role of character strengths and perceived gains as mediators in the association between life satisfaction and primary and secondary stressors in informal caregivers of persons with dementia. Method Participants were 112 informal caregivers. Hierarchical regression, correlation and mediation analyses were performed. Results Lower life satisfaction was associated with being female, unmarried, caring for someone with greater cognitive impairment, a higher level of stress, having restricted leisure time and perceiving financial difficulties. Hope mediated the associations between perceived stress and both life satisfaction and perceived gains of caregiving. Discussion Hope is a key strength and its lack is one pathway through which stress may cause low satisfaction and low perceived gains from caregiving. Implications for practice Without hope, it is difficult for caregivers to generate goals and be motivated to achieve them. Nursing and care staff should aim to promote a sense of purpose and achievement among informal caregivers so as to foster a more positive caring experience.

An Evaluation of Dementia Dialogues®: A Program for Informal and Formal Caregivers in North and South Carolina.

In 2019, the University of South Carolina's Office for the Study of Aging (OSA) remodeled the curriculum for the nationally registered Dementia Dialogues® program that delivers high-quality education to formal and informal caregivers of persons who exhibit signs and symptoms of Alzheimer's disease and related dementias (ADRD). This study evaluated new knowledge acquired and program satisfaction by North and South Carolina program participants (N = 235) after completing updated modules. Pre/post module survey data were analyzed using means and percentiles, McNemar's test, and paired t tests. Results demonstrated significant positive increases in caregiver knowledge attainment, with differences in overall knowledge change in specific modules among caregivers and noncaregivers (p < .0001-<.05). Dementia Dialogues® may serve as a useful tool in providing important information that increases caregiver knowledge of persons living with ADRD. Further research is recommended to examine how knowledge improvement translates into caregiving practices.

Factors associated with caregiving self-efficacy among primary informal caregivers of persons with dementia in Singapore

BackgroundInformal caregivers of persons with dementia (PWD) are often associated with negative health outcomes. Self-efficacy in dementia caregiving has been reported to have protective effects on caregiver’s health. This study aims to examine the factors associated with the domains of caregiving self-efficacy among informal caregivers in Singapore, a country with a rapidly aging population and a 10% prevalence of dementia among older adults.MethodsTwo hundred eighty-two informal caregivers were recruited and data including participant’s caregiving self-efficacy, sociodemographic information, perceived social support, positive aspects of caregiving, knowledge of dementia, as well as behavioral and memory problems of care recipients were collected. A confirmatory factor analysis (CFA) was performed for the 3-factor model of the Revised Scale for Caregiving Self-Efficacy (RSCSE), and multiple linear regressions were conducted using the RSCSE subscales as dependent variables.ResultsOur CFA found that the RSCSE 3-factor model proposed by the original scale developer was an acceptable fit among informal caregivers in Singapore. Having established that the 3-factor model of the RSCSE was compatible among our sample, a series of multiple regressions were conducted using each of the factors as a dependent variable. Regressions revealed several factors that were significantly associated with caregiving self-efficacy. Importantly, outlook on life was positively associated to all 3 domains of the RSCSE, while social support was positively associated with self-efficacy in obtaining respite and controlling upsetting thoughts.ConclusionThe 3-factor model of the RSCSE was found to be an appropriate fit for our sample. Findings from this study elucidated important novel insights into the factors that influences caregiving self-efficacy amongst informal caregivers in Singapore. Crucially, caregivers’ outlook on life and social support should be improved in order to enhance their caregiving self-efficacy.

What do people write about after filling out a survey on extending assistance in dying to incompetent patients with dementia?

AbstractBackgroundIn December 2015, the Canadian province of Quebec legalized medical aid in dying (MAID) for competent patients who satisfy strictly defined criteria. Like the rest of Canada, Quebec is considering extending the legislation to incompetent patients under certain conditions not yet specified. With the objective of informing policy developments in this sensitive area, we recently conducted a province‐wide postal survey to assess stakeholders’ attitudes toward giving incompetent patients with dementia access to MAID in some circumstances. Objective: To describe the comments respondents left at the end of the questionnaire.MethodThe questionnaire was mailed to 2,125 randomly selected representatives of four stakeholder groups: adults 65 and over presumed free of cognitive impairment, informal caregivers of persons with dementia, and nurses and physicians who were caring for patients with dementia at the time of the survey. A total of 1,050 questionnaires were returned (49.4%), of which 420 (40%) included comments. These ranged from a few words to several pages of free text. Comments were independently coded by the two authors into themes, topics and subtopics.ResultSeven major themes were identified, under which a total of 1,148 units were classified. Respondents wrote (1) about themselves (297 units), (2) the survey and questionnaire (204), (3) patients with dementia (235), (4) their informal caregivers (97), (5) the health care system (75), (6) the MAID legislation (207), and (7) society in general (33). Each theme comprises between two and five topics. Topics include, for instance, the respondent’s personal values and beliefs, informal caregivers’ difficulty in making end‐of‐life decisions for a loved one, and health care professionals’ lack of training in caring for patients dying with dementia. Theme 6, on the MAID legislation, includes two topics (the current legislation and its extension), the second of which was subdivided into five subtopics for greater refinement: preferred alternatives to MAID, fears should it be extended to incompetent patients, advanced requests, anticipated difficulties in providing MAID to incompetent patients, and eligibility criteria.ConclusionIn their comments, respondents raised several challenges associated with the possible expansion of MAID to incompetent patients that need attention.

Self-reported symptoms of depression and anxiety among informal caregivers of persons with dementia: a cross-sectional comparative study between Sweden and Italy

BackgroundAround 50 million people worldwide are diagnosed with dementia and this number is due to triple by 2050. The majority of persons with dementia receive care and support from their family, friends or neighbours, who are generally known as informal caregivers. These might experience symptoms of depression and anxiety as a consequence of caregiving activities. Due to the different welfare system across European countries, this study aimed to investigate factors associated with self-reported depression and anxiety among informal dementia caregivers both in Sweden and Italy, to ultimately improve their health and well-being.MethodsThis comparative cross-sectional study used baseline data from the Italian UP-TECH (n = 317) and the Swedish TECH@HOME (n = 89) studies. Main outcome variables were the severity of self-reported anxiety and depression symptoms, as measured by the Hospital Anxiety and Depression Scale (HADS). HADS scores were investigated using descriptive and bivariate statistics to compare means and standard deviations. Linear regressions were used to test for associations between potential factors and self-reported symptoms of depression and anxiety.ResultsItalian informal caregivers reported more severe symptoms of depression and anxiety than Swedish caregivers. In Italy, a higher number of hours of caregiving was associated with anxiety symptoms (β = − 1.205; p = 0.029), being 40–54 years-old with depression symptoms (β = − 1.739; p = 0.003), and being female with symptoms of both depression (β = − 1.793; p < 0.001) and anxiety (β = 1.474; p = 0.005). In Sweden, a higher number of hours of caregiving and being < 39 years-old were associated with depression symptoms (β = 0.286; p < 0.000; β = 3.945; p = 0.014) and a higher number of hours of caregiving, the lack of additional informal caregivers and dementia severity were associated with anxiety symptoms (β = 0.164; p = 0.010; β = − 1.133; p = 0.033; β = − 1.181; p = 0.031).ConclusionMultiple factors are associated with self-reported symptoms of depression and anxiety among informal caregivers in Sweden and Italy. Factors found in this study partly differ between the two countries, suggesting the important role of cultural and social factors affecting the experience of caregiving. A deeper knowledge of these factors may increase the knowledge on potential protective and risk factors, provide information to policymakers and ultimately improve the psychological well-being of informal caregivers to people with dementia across Europe.

Dementia caregivers training needs and preferences for online interventions: A mixed-methods study.

To explore how informal caregivers of persons with dementia perceive training needs and preferences in the context of online training and support interventions. Informal dementia caregivers commonly present high needs across several domains. Paradoxically, they are more likely to have unmet needs and lower levels of service usage when compared to other caregivers. Most studies on unmet needs of dementia caregivers have been quantitative and resorted to assessment checklists, with a minority focusing on subjective needs. Mixed-methods. Eighty-eight Portuguese digitally literate caregivers filled a web-based questionnaire collecting written statements on training needs and importance ratings on design preferences. Content analysis of text data was carried out by two independent researchers to check the reliability of the analytic process. Descriptive statistics were produced for ratings on design preferences, and associations with caregivers' sociodemographic and care-related variables were inspected. Reporting followed the criteria for reporting qualitative research checklist. Five main categories of training needs have emerged: knowledge of dementia; care interactions; caregiver self-care; community resources; and laws or regulations affecting the caregiver and the care recipient. The most reported need was on care interactions, on the subcategory of providing good quality care. Thematic prominence was analysed according to the caregiver, caregiving and health perception characteristics, with trends found on formal education, relationship with the care recipient, number of hours caring per week, perceived level of dependence of the care recipient and perceived physical and psychological health status of the caregiver. Most valued design features included the use of plain language, easy to interact interface and communication with a professional. Findings from this study further support the delivery of comprehensive interventions addressing the multiple needs of caregivers. Clues are provided for the delivery of online interventions, and conclusions are useful to health professionals working with dementia caregivers.