US Prevalence And Predictors Of Informal Caregiving For Dementia.
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ABSTRACT:
SUBMITTER: Friedman EM
PROVIDER: S-EPMC4872631 | biostudies-literature | 2015 Oct
REPOSITORIES: biostudies-literature
Publications
US Prevalence And Predictors Of Informal Caregiving For Dementia.
Friedman Esther M EM Shih Regina A RA Langa Kenneth M KM Hurd Michael D MD
Health affairs (Project Hope) 20151001 10
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Project description:Informal care research mainly relies upon carers reporting that they provide this type of care. Little is known about whether reports from recipients would produce similar information. We explore whether providers and recipients are in agreement with each other's reports of informal care at the extensive and intensive margin and whether particular characteristics of providers and recipients predict any discrepancies. Using data from the 2015-2017 wave of the UK Household Longitudinal Study (UKHLS), we find that among those who reported receiving informal care a provider confirmed only 37.5% of these. Each additional restriction on activities and instrumental activities of daily living for a recipient increases the probability of agreement by 5.2 and 9.3 percentage points, respectively. When both parties report informal care, providers report on average 10.55 (37%) more hours per week compared to recipients. This represents an annual difference of £12,081 using the replacement monetary valuation method. If we rely on recipient reports, we may be more likely to capture how many in the population are caregivers. However, we may also be less likely to capture the full hours of care for each caregiver. These discrepancies in reported caregiving affect studies of the consequences of caregiving and economic evaluations of interventions that impact on caregiving.
| S-EPMC7613109 | 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:BackgroundInformal caregiving is seen as a low-cost substitute for care provided by health care professionals. However, caregiving is known to negatively impact caregivers' health and, subsequently, their health care use and costs. This could potentially offset the caregivers' contributions to the health care system.ObjectiveWe examined the impact of caregiving on costs associated with caregivers' use of publicly funded health care services in Ontario, Canada, in comparison with non-caregivers.MethodsWe included Ontarians who participated in the Canadian Community Health Survey-Healthy Aging Supplement Survey of 2008/09 and linked responses to health care administrative databases. A difference-in-differences design was used to capture differences in caregivers' and non-caregivers' total health care costs 1 and 2 years before and after caregiving start date. Generalized Linear Models were used to model the total health care costs.ResultsThe sample size was 4275 with 1265 caregivers and 3010 non-caregivers. We found that while health care utilization increased over time, it increased by a lesser amount for caregivers than non-caregivers. Adjusted total health care costs for caregivers were 11.32% (SE = 0.05, ρ = 0.02) lower than non-caregivers 2 years into caregiving.ConclusionsOur study reveals a critical gap in policy, practice, and research driven by a lack of routine data collection and caregiver identification. It also highlights the need for additional longitudinal research focusing on caregivers' objective health.
| S-EPMC11812279 | biostudies-literature
Project description:BackgroundDementia informal caregiving is a global phenomenon. It is well documented that caregivers' psychological health is often affected by busy caregiving schedules. Lawton's two-factor model indicates that caregivers' psychological wellbeing is influenced by caregiving appraisal and other caregiver factors. Our review also identified the significance of dementia literacy, which was an essential caregiver factor. However, it is imperative for a clear understanding of the mechanism of how psychological wellbeing is influenced by them.ObjectivesTo explore the association among dementia literacy, caregiving appraisal, and psychological wellbeing and the influencing mechanisms between them.MethodsTwo hundred and twenty-three informal caregivers of people with dementia were involved in this cross-sectional study. Dementia literacy was measured by the Alzheimer's Disease Knowledge Scale and Dementia Attitude Scale. Caregiving appraisal and psychological wellbeing were measured with the Caregiving Appraisal Scale and Ryff's Psychological wellbeing Scale, respectively. Descriptive statistics were used to describe the characteristics of participants and key outcome variables. Pearson's correlation analysis was used to analyze the correlation among the variables. Structural equation modeling was used to examine the hypothetical mediating role of caregiving appraisal in the relationship between dementia literacy (i.e., knowledge of dementia and attitude toward dementia) and caregivers' psychological wellbeing.ResultsThe hypotheses were partially confirmed. Attitude toward dementia was significantly associated with caregiving appraisal (r = 0.312, p < 0.01) and psychological wellbeing (r = 0.311, p < 0.01). However, knowledge of dementia was only significantly associated with psychological wellbeing (r = 0.136, p < 0.05). The structural equation modeling fitted well (p = 0.078, CFI = 0.987, RMSEA = 0.038). In the fitted model, caregiving appraisal partially mediated the association between attitude toward dementia and psychological wellbeing. In contrast, attitude toward dementia and caregiving appraisal fully mediated the association between knowledge of dementia and psychological wellbeing.ConclusionEfforts can be exerted to improve dementia caregivers' caregiving appraisal and attitude toward dementia to improve their psychological wellbeing.
| S-EPMC9515462 | biostudies-literature
Project description:PurposeThe purpose of this study was to describe the unique characteristics of informal hospice cancer caregiving.MethodsResearchers conducted a secondary analysis of data drawn from a randomized clinical trial of an informal hospice caregiving intervention (N = 348). Demographic characteristics and measures of the informal caregiving experience of hospice patients and their informal caregivers were compared based on the patient's diagnosis using chi-square tests for association of categorical variables and t tests for continuous variables.ResultsInformal caregivers of cancer patients differed from their non-cancer counterparts in a number of respects including patient age, caregiver age, patient residence, relationship between patient and caregiver, amount and duration of care provided, likelihood to incur out-of-pocket expenses related to patient care, caregiver problem-solving style, and impact on caregiver daily schedule. There were no statistically significant differences between cancer and non-cancer caregivers in terms of gender, race, employment status, anxiety, and quality of life.ConclusionsWhile cancer and non-cancer caregivers are similar in many respects, a number of unique features characterize the informal hospice cancer caregiving experience. Attention to these unique features will allow hospice providers to tailor supportive care interventions to better address cancer caregivers' needs.
| S-EPMC4449794 | biostudies-literature
Project description:Background and purposeInformal (unpaid) caregiving usually provided by family is important poststroke. We studied whether the prevalence of informal caregiving after stroke differs between Mexican Americans (MAs) and non-Hispanic Whites (NHWs).MethodsBetween October 2014 and December 2018, participants in the BASIC (Brain Attack Surveillance in Corpus Christi) project in Nueces County, Texas, were interviewed 90 days after stroke to determine which activities of daily living they required help with and whether family provided informal caregiving. Ethnic differences between MAs and NHWs were determined by logistic regression. The logistic models were stratified by formal (paid) care status. Odds ratios (95% CIs) are reported with NHW as the referent group. Fisher exact tests were used to assess the association of ethnicity with relationship of caregiver and with individual activities of daily living.ResultsEight hundred thirty-one patients answered the caregiving questions. Of these, 242 (29%) received family caregiving (33% of MAs and 23% of NHWs), and 142 (17%) received paid caregiving (21% of MAs and 10% of NHWs). There were no ethnic differences in stroke severity. In logistic regression analyses, among those without formal, paid care, MAs were more likely to have informal caregiving (odds ratio, 1.75 [95% CI, 1.12-2.73]) adjusted for age, National Institutes of Health Stroke Scale, prestroke modified Rankin Scale, and insurance. No ethnic differences in informal care were found among those who had formal care. There were no differences between ethnic groups in which family members provided the informal care. MAs were more likely to require help compared with NHWs for walking (P<0.0001), bathing (P<0.0001), hygiene (P=0.0012), eating (P=0.0004), dressing (P<0.0001), ambulating (P=0.0304), and toileting (P=0.0003).ConclusionsMAs required more help poststroke than NHWs for assistance with activities of daily living. MAs received more help for activities of daily living through informal, unpaid caregiving than NHWs if they were not also receiving formal, paid care. Efforts to help minority and low-resource populations provide stroke care are needed.
| S-EPMC8608706 | 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:ObjectiveTo examine racial and ethnic differences in costs of informal caregiving among older adults with dementia in the United States.MethodsWe used data from the 2002 to 2018 Health and Retirement Survey to estimate annual informal care hours for adults with dementia (n = 10,015). We used regression models to examine racial and ethnic differences in hours of informal care for activities of daily living (ADL) and instrumental ADL, controlling for demographic characteristics, education, and level of disability.ResultsOur sample was 70% non-Hispanic White, 19% non-Hispanic Black, and 11% Hispanic. Hispanics received, on average, 35.8 hours of informal care each week, compared to 30.1 for Blacks and 20.1 for Whites. Racial and ethnic differences persisted when controlling for covariates.DiscussionInformal care is a greater cost to racial and ethnic minoritized families. Informal care was valued at a replacement cost of $44,656 for Hispanics, $37,508 for Blacks, and $25,121 for Whites.
| S-EPMC11363470 | 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
Project description:BackgroundThe 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.MethodsWe 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 were interviewed about their experiences caring for people with dementia until thematic saturation was reached. All interviews were audio recorded, transcribed into English, and thematically analysed.ResultsTwo primary themes emerged from the data: patient factors influencing caregiving burden (problematic behaviours, such as wandering and aggression) and patient physical health and cognitive deterioration (namely, loss of memory and incontinence). Psychosocial and economic aspects of caregiving burden included financial costs, family conflicts, anxiety, stigma, and substance misuse.ConclusionsBoth formal and informal caregivers of people living with dementia experience physical, financial, and psychological stressors. Interventions aimed at reducing these stressors would benefit caregivers as well as improve quality of care for people living with dementia.
| S-EPMC7544160 | biostudies-literature