Caring for people with dementia in rural Uganda: qualitative study of caregiving burden experienced by informal and formal caregivers.
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ABSTRACT:
SUBMITTER: Ainamani HE
PROVIDER: S-EPMC7544160 | biostudies-literature | 2020
REPOSITORIES: biostudies-literature
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Caring for people with dementia in rural Uganda: qualitative study of caregiving burden experienced by informal and formal caregivers.
Ainamani Herbert E HE Alele Paul E PE Rukundo Godfrey Z GZ Maling Samuel S Wakida Edith K EK Obua Celestino C Tsai Alexander C AC
Journal of global health reports 20200616
<h4>Background</h4>The rising incidence of Alzheimer's disease among older-age adults worldwide has been accompanied by an increase in caregiving burden. Limited work has examined the lived experiences of both formal and informal caregivers of people living with dementia in low-income countries.<h4>Methods</h4>We conducted one-on-one, in-depth qualitative interviews with a purposive sample of 10 informal caregivers and 5 formal caregivers of people living with dementia in Mbarara, Uganda. They w ...[more]
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Project description:BackgroundAlzheimer's disease and related dementias are associated with increasing health burden in low- and middle-income countries. Less well-recognized is the potential health burden experienced by other affected individuals, such as family caregivers. In this study, we sought to profile the burden of care and its association with symptoms of depression and anxiety among informal caregivers of people living with dementia in rural southwestern Uganda.MethodWe conducted a cross-sectional study of 232 family caregivers of people with dementia. The key measured variables of interest were caregiving burden (Zarit Burden Index) and symptoms of depression and anxiety (Depression Anxiety Stress Scales). We fitted multivariable regression models specifying depression and anxiety symptoms as the primary outcomes of interest and caregiving burden as the primary explanatory variable of interest.ResultsFamily caregivers of people with dementia experience significant caregiving burden, with each item on the Zarit Burden Index endorsed by more than 70% of study participants. Nearly half [108 (47%)] of caregivers had Zarit Burden Interview scores >60, suggestive of severe caregiving burden. In multivariable regression models, we estimated a statistically significant positive association between caregiving burden and symptoms of both depression [b = 0.42; 95% confidence interval (CI) 0.34-0.49] and anxiety (b = 0.37; 95% CI 0.30-0.45).ConclusionFamily caregivers of people with dementia in rural Uganda experience a high caregiving burden, which is associated with symptoms of depression and anxiety. Interventions aimed at reducing caregiving burden may have important collateral mental health benefits.
| S-EPMC7379317 | biostudies-literature
Project description:PurposeRelatively little is known about caregivers of African American cancer survivors. Our goal was to identify the extent of burden among this group of caregivers.MethodsResponses from 560 informal caregivers of African American participants of the Research on Cancer Survivors (ROCS) study in Detroit, MI, were analyzed including demographics, assistance provided including activities of daily living (ADLs) and instrumental activities of daily living (IADLs), time spent in caregiving, and caregiver burden (CGB). We assessed relationships between CGB and demographic variables, ADLs/IADLs, and level of care. Multivariable logistic regression determined which ADLs and IADLs were associated with high CGB.ResultsOver 75% of caregivers were female and 97% identified as African American. Mean age was 52.6 years. Fifty-six percent were employed outside the home, and 90% were related to the survivor. Caregivers averaged 35.7 h/week providing care, assisting with on average 2.8 ADLs and 5.0 IADLs. Despite the many hours and activities reported, no caregivers rated CGB as severe; only 4% rated it moderate to severe. ADLs associated with the top quartile of CGB were feeding and toileting; IADLs were finances, telephoning, housework, and medications.ConclusionsCaregivers for African American cancer survivors provide many hours of care, yet most describe their CGB as low. Although ADL assistance is often available through the healthcare system, assistance with IADLs presents an opportunity to lessen the burden for these caregivers and their care recipients.Implications for cancer survivorsAfrican American cancer survivors receive much care from informal family caregivers, who assist with multiple ADLs and IADLs. Formal IADL assistance programs, similar to those available for ADLs, would benefit both survivors and caregivers.
| S-EPMC8052386 | biostudies-literature
Project description:ObjectivesMuch is known about the demands of caregiving for persons with dementia (PWD) and its effects on family caregivers, however sex and gender aspects have received less attention. We synthesized the evidence on sex and gender distinctions in: (1) the caregiving burden and (2) the impact of caregiving on the physical and mental health of family caregivers of PWD.DesignSystematic review.Data sourcesMedline, Embase, PsycINFO and Cumulative Index to Nursing and Allied Health Literature between January 2007 and October 2019 were searched.Eligibility criteria for selecting studiesIncluded studies met the following criteria: (1) examine experiences and/or impacts of caregiving among family caregivers of individuals with any form of dementia; (2) report sex and/or gender distribution of study population and/or report results stratified by sex and/or gender, and (3) include both male and female family caregivers.Data extraction and synthesisTwo independent reviewers extracted the data and assessed risk of bias using the Critical Appraisal Skills Program checklist and National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-sectional Studies. Data were synthesized using a narrative synthesis approach.ResultsA total of 22 studies were included. Caregiving burden was measured using various methods. A majority of studies reported higher burden among females. All studies that did not report a sex and gender difference in caregiving burden accounted for confounders. Findings on sex and gender differences on physical and mental health conditions were inconsistent with most studies failing to account for confounders in their analyses.ConclusionsCurrent evidence on sex and gender differences in caregiving burden, mental and physical health is limited. Findings suggest presence of sex and gender differences in caregiving burden. Given the variety of mental and physical health constructs that were examined, further research is required to substantiate the evidence. PROPSERO Registration Number: CRD 42018070032.
| S-EPMC7170244 | biostudies-literature
Project description:IntroductionWhile much is known about caregiving burden and its consequences on both caregivers and care recipients, reports on the sex and gender differences that may be present among family caregivers of persons with dementia (PWD) are lacking. Attention to and a synthesis of these sex and gender distinctions have direct implications on the planning and development of health services for this population. The current protocol outlines a strategy for a systematic review of the current evidence to identify and synthesise sex and gender distinctions in caregiving burden experienced by family caregivers of PWD.Methods and analysisA comprehensive search strategy for studies that examine the sex and gender differences in caregiving impacts and experiences has been developed in collaboration with an information specialist at a university. All peer-reviewed English language studies on adult family caregivers of PWD, published from January 2007 to September 2017, found through Medline, Embase, PsycINFO, Cumulative Index to Nursing and Allied Health Literature and bibliographies of identified articles, will be considered eligible. Study quality will be assessed using the Critical Appraisal Skills Programme checklists.Ethics and disseminationAs the first systematic review of its kind that focus on sex and gender differences in caregiving burden, findings will be relevant for healthcare practitioners and researchers who can better prescribe and develop interventions and technologies to better address the specific challenges and burden experienced by male and female family caregivers of PWD. Moreover, given that more than half of family caregivers are females; these sex and gender differences will also be pertinent to policy-makers when evaluating and planning of our healthcare systems to better meet the needs of this population.Trial registration numberCRD42018070032.
| S-EPMC6091900 | biostudies-literature
Project description:Informal carers report lower evaluative wellbeing than non-carers. In contrast to this literature and our own analysis of evaluative wellbeing, we find carers have a small but higher level of experienced wellbeing than non-carers do. To investigate why, we use decomposition analysis which separates explanatory factors into how time is used and how those uses of time are experienced. We analyze activities and associated experienced wellbeing measured in ten-minute intervals over two days by 4817 adults from the 2014/15 UK Time Use Survey. We use entropy balancing to compare carers with a re-weighted counterfactual non-carer group and then apply Oaxaca-Blinder decomposition. The experienced wellbeing gap of 0.066 is the net result of several substantial competing effects of time use. Carers experienced wellbeing would be higher by 0.188 if they had the same patterns and returns to time use as non-carers which is driven by sleep, time stress and alternative characteristics of time use. However, leisure and non-market activities serve to dampen this increase in experienced wellbeing. Initiatives to improve and assess carer wellbeing should pay close attention to how carers spend their time.
| S-EPMC10092671 | biostudies-literature
Project description:Informal dementia caregivers are at greater risk of experiencing physical and mental health issues as compared to the general population. Internet-based resources may provide accessible opportunities to backing informal dementia caregivers by addressing their information and support needs. This cross-sectional study aims to characterize the use of dementia and caregiving-related internet resources by caregivers and identify variables associated with such use. Primary data were collected through a web-based survey (N = 158). Linear regression models were used to assess the associations of predisposing, enabling, and need variables with the frequency of using the internet for caregiving-related purposes. Most caregivers (93%) have ever used the internet to gather general information about dementia. The frequency of using internet resources was, however, moderate. The multivariable linear regression model suggests that being younger (β = -0.110, p = 0.009), not having a source of support to provide care (β = -2.554, p = 0.012), having used a face-to-face psychosocial intervention at some point (β = 2.731, p = 0.003), being employed (β = 2.558, p = 0.013), and appraising one's own physical health negatively (vs. appraising it as similar; β = 3.591, p < 0.001), are associated with a higher frequency of using caregiving-related internet resources. Our findings confirmed the association of age and perceived health status with caregiving-related internet use reported in other studies. The role of enabling variables as lifetime access to psychosocial interventions and having a usual source of support to provide care was a new addition. This study informs the design and deployment of information and support to dementia caregivers.
| S-EPMC9518752 | biostudies-literature
Project description:ObjectivesRural-urban disparities in the experiences of caregivers of older adults with advanced cancer may exist. This study examined factors associated with caregiver mastery and burden and explored whether rural-urban disparities in caregiver outcomes differed by education.Materials and methodsLongitudinal data (baseline, 4-6 weeks, and 3 months) on caregivers of older adults (≥ 70) with advanced cancer were obtained from a multicenter geriatric assessment (GA) trial (ClinicalTrials.gov: NCT02107443). Rurality was determined based on 2010 Rural-Urban Commuting Area codes. Caregivers' education was categorized as ≥ some college vs ≤ high school. Caregiver outcomes included Ryff Environmental Mastery (scored 7-35) and Caregiver Reaction Assessment (including self-esteem, disrupted schedules, financial problems, lack of social support, and health problems; each scored 1-5). Separate linear mixed models with interaction term of education and rurality were performed.ResultsOf 414 caregivers, 64 (15.5%) were from rural areas and 263 (63.5%) completed ≥ some college. Rurality was significantly associated with more disrupted schedules (β = 0.21), financial problems (β = 0.17), and lack of social support (β = 0.11). A significant interaction between education and rurality was found, with rurality associated with lower mastery (β = -1.27) and more disrupted schedule (β = 0.25), financial problems (β = 0.33), and lack of social support (β = 0.32) among caregivers with education ≤ high school.ConclusionOur study identifies subgroups of caregivers who are vulnerable to caregiving burden, specifically those from rural areas and with lower education. Multifaceted interventions are needed to improve caregivers' competency and reduce caregiving burden.
| S-EPMC8429077 | biostudies-literature
Project description:BackgroundBoth formal and informal caregivers play pivotal roles in long-term dementia care, demonstrating a shared dedication to providing comprehensive care and support for individuals with dementia. These two caregiver groups exhibit both similarities and differences in their caregiving experiences, contributing to variations in subjective well-being outcomes. However, limited research has compared the psychological well-being and self-rated health of these two caregiver groups, or explored the influencing factors. This knowledge gap hinders the development of targeted interventions and support strategies tailored to different caregiving contexts and informs supportive policymaking.MethodsA cross-sectional survey was conducted among 440 caregivers of individuals with dementia, including 229 informal caregivers and 211 formal caregivers. Psychological well-being was assessed using the short version of Ryff's Psychological Well-being Scale, while self-rated health was measured using a summative item from a validated instrument. Caregiving appraisal and coping were evaluated separately using the Chinese version of the Caregiving Appraisal Scale and Ways of Coping Questionnaire. Descriptive statistics, t-tests, Chi-square tests, and multivariate stepwise regression analyses were employed for data analysis.ResultsFormal caregivers exhibited significantly better psychological well-being and self-rated health compared to informal caregivers. Moreover, formal caregivers reported more positive caregiving appraisals than their informal counterparts. However, there was no statistical difference in coping strategies between the two groups. The psychological well-being of informal caregivers was primarily influenced by coping (standardized β = 0.309) and caregiving mastery (standardized β = 0.270). For formal caregivers, their psychological well-being was mainly influenced by caregiving satisfaction (standardized β = 0.267) and caregiving intensity (standardized β = 0.242). Both informal (standardized β = 0.354) and formal caregivers' (standardized β = 0.156) self-rated health were influenced by passive coping.ConclusionsThis study provides valuable insights for developing tailored interventions and support systems aimed at improving the psychological well-being and self-rated health of informal and formal caregivers of people with dementia. To enhance the psychological well-being of informal caregivers, interventions targeting improvements in coping skills and caregiving mastery can be designed; while for formal caregivers, interventions focusing on enhancing caregiving satisfaction and effective coping strategies may be beneficial. Improving the passive coping and caregiving appraisals may help improve the self-rated health of both groups.
| S-EPMC11800568 | biostudies-literature
Project description:BackgroundDue to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia.ObjectiveThe objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia.MethodsA combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn.ResultsFormal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context.ConclusionsDespite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.
| S-EPMC8076981 | biostudies-literature
Project description:Background Positive aspects of caregiving are important coping resources for informal caregivers of persons with dementia (PWD). However, existing studies mostly focused on caregivers from western societies and less attention was paid to the potential cultural differences. This study aims to explore positive aspects of caregiving in the Asian context. Methods A qualitative methodology with semi-structured interviews was adopted. A total of 29 informal caregivers of PWD in Singapore were interviewed from Apr 2019 to Dec 2020. All the interviews were audio-recorded and transcribed verbatim for the analysis. Inductive thematic analysis was conducted. Results The results revealed a total of three major themes with 11 sub-themes including: 1) positive aspects within self (i.e., better understanding of dementia and caregiving, personal growth, role satisfaction, and improved awareness of self-care); 2) positive aspects between caregiver and PWD (i.e., chance to demonstrate filial piety towards PWD, happiness and positive attitudes of PWD, positive interactions with PWD, and closer relationships with PWD); and 3) positive aspects between caregiver and others (i.e., empathy towards other caregivers, befriending peers, and sharing dementia and caregiving knowledge with others). Discussion Findings from this study improved our understanding on positive aspects of caregiving among informal caregivers of PWD in the Asian context. In addition to similar themes across cultures such as personal growth, our study identified a few unique themes like improved awareness of self-care and chances to demonstrate filial piety. For future studies targeting Asian caregivers, it is necessary to include these cultural-specific positive aspects of caregiving. Supplementary Information The online version contains supplementary material available at 10.1186/s12877-023-03767-8.
| S-EPMC9883086 | biostudies-literature