Older Informal Caregivers Research Articles

Quality of Life and Health Determinants of Informal Caregivers Aged 65 Years and Over.

Informal caregivers' own quality of life, health status, and determinants are poorly understood despite their concern for the health of the individuals they assist. To compare the quality of life and the health determinants of older informal caregivers with those of older adults without caregiving responsibilities. An online survey was designed to investigate the quality of life and the health determinants of people aged 65 years and over, with a focus on informal caregivers. In addition to socio-demographic data, the number of informal caregivers was ascertained and the Zarit scale of caregiver burden was applied. Quality of life (SF-12) and health determinants (access to technology and level of physical activity (IPAQ)) were assessed and compared between informal caregivers and non-caregivers. A total of 111 participants were included in the study (70 ± 3.83 years, 71.2% women). The majority of respondents (91.8%) were Belgian. One-third of the respondents identified themselves as informal caregivers and declared themselves as having a severe burden (61.9 ± 15.2/88). Socio-demographic characteristics and access to technology were similar between informal caregivers and non-caregivers (p > 0.05). However, informal caregivers had a lower SF-12 score in the mental score domain (44.3 ± 10.2 vs. 50.7 ± 7.0; p = 0.004) and a lower level of physical activity (434 ± 312 METS/min/week vs. 1126 ± 815 METS/min/week; p = 0.01) than their peers. Informal caregivers reported a lower quality of life and a lower level of physical activity than their peers. Given the recognized importance of physical activity for overall health, this survey highlights the need to promote physical activity among older informal caregivers.

The Vulnerability of Older Informal Caregivers with Care Needs: Significance of Multidimensional Frailty

ABSTRACT Objectives To improve our understanding of older informal caregivers’ (ICs) health, this paper aimed to compare multidimensional frailty and sociodemographic and economic characteristics between (subgroups of) older ICs and non-caregivers. Methods Using data originating from the Belgian Ageing studies (n = 6054), intergroup differences between older ICs and non-caregivers and between care-dependent and -independent older ICs/non-caregivers were conducted. In addition binary logistic regressions were carried out to determine which variables were related to caregiver status and need of assistance. Results Among all respondents, 14.3% were ICs reporting care needs themselves. Informal and non-caregivers with care needs, relative to those without, more often only (partially) completed primary education, were significantly older, more likely to be female and widowed, found it more difficult to make ends meet, and reported higher levels of frailty in each domain. Moreover, environmental and psychological frailty were associated with an increase in the likelihood of reporting need of assistance among older non-caregivers and ICs, respectively. Conclusions This study revealed a particular vulnerable subpopulation of older ICs with care needs. Clinical Implications It is essential for clinicians to be observant for unrecognized frailty and care needs in older ICs and to develop targeted intervention and prevention strategies.

Variability in perceived burden and health trajectories among older caregivers: a population-based study in Sweden

BackgroundThe negative effects of informal caregiving are determined by the characteristics of the caregiver-care receiver dyad and the context of care. In this study, we aimed to identify which subgroups...

THE EFFECTIVENESS OF INTERNET-BASED INTERVENTIONS IN REDUCING STRESS EXPERIENCED BY OLDER INFORMAL CAREGIVERS

Abstract Purpose This systematic review assesses and provides a critical review of the effectiveness of internet-based interventions to decrease informal caregiver stress. Method: A systematic review of the following databases: PsycINFO, Social Service Abstract, Social Work Abstract, PubMed, and Cochrane Library was conducted using terms related to informal caregivers and internet-based interventions from January 2010-February 2022. Only data conducting interventions in the U.S. included. This systematic review reviewed the quality of articles on the methods of randomized and non-randomized trials using the approaches recommended by the Cochrane Handbook for systematic review for intervention. The review was reported using a PRISMA chart. Results Eight studies met the review criteria. Most of the studies showed positive benefits in reducing caregiver stress. There were no clear patterns as to the variables such as study duration and complexity of intervention associated with better outcomes, although earlier studies typically had more negative outcomes. Conclusions Internet-based interventions can develop solutions to decrease the physical and psychological consequences resulting from caregiving and can help empower older caregivers of people with chronic diseases. Internet-based interventions were mainly effective in reducing aspects of caregiver stress and improving their well-being. Further studies can assess outcomes for older informal caregivers and their recipients’ health, different technology delivery methods, and the cost of such interventions are needed to examine the psychological impacts of COVID-19 on older informal caregivers.

Effectiveness of a behavioral lifestyle intervention on weight management and mobility improvement in older informal caregivers: a secondary data analysis

BackgroundOlder informal caregivers are prone to sedentary behavior and obesity. With great caregiving burdens and frequent physical and mental distress, older informal caregivers may have low adherence and poor results in behavioral intervention for weight management. This study examined whether overweight or obese older informal caregivers could benefit from a behavioral weight management program as much as non-caregivers.MethodsThe Mobility and Vitality Lifestyle Program (MOVE UP) was a pre-post, community-based, 13-month lifestyle intervention study to help older adults improve physical function performance and lose weight. We identified a subset of informal caregivers (n = 29) and non-caregivers (n = 65) from the MOVE UP participants retrospectively. Changes in lower extremity function, weight, depressive symptoms, and self-efficacy from baseline were compared between caregivers and non-caregivers using paired t-tests and ANCOVA.ResultsOlder informal caregivers had significantly lower session attendance rates than non-caregivers (67.7% vs 76.8%, P < 0.05), however, both informal caregivers and non-caregivers improved significantly in lower extremity function, weight loss, and self-efficacy in diet (Ps < 0.05). For each outcome, changes from baseline to the 13-month endpoint were the same among informal caregivers and non-caregivers.ConclusionThis study provides evidence that older informal caregivers can benefit from behavioral weight management interventions despite the challenge caregiving poses for effective self-care. Future behavioral intervention studies for older informal caregivers should adopt self-monitoring tools and extend the on-site delivery to home-based settings for higher adherence and greater flexibility.Trial registrationRegistered at clinicaltrials.gov (NCT02657239).

Are informal caregivers more likely to believe in conspiracy theories during the COVID-19 pandemic?: Findings of a representative study from Germany

Objectives This study analyzed the conspiracy mentality of informal caregivers for older persons compared to non-caregivers and whether this association was dependent on age. Methods The sample was collected randomly from a population-based online panel (forsa.omninet) and represents individuals aged ≥40 years from Germany. In total, 3022 participants were questioned about conspiracy mentality (Conspiracy Mentality Questionnaire), informal care provision (N = 489 informal caregivers of older adults), and sociodemographic background. Data assessment took place between 4th and 19th March 2021 and the questions referred to the time between December 2020 and March 2021. Results No significant differences were found between informal caregivers and non-caregivers. A significant interaction effect was found, indicating a decrease of conspiracy mentality among non-caregivers and an increase among informal caregivers with higher age. After stratifying by gender, this effect was found only among female informal caregivers. Conclusion Middle-aged informal caregivers had a lower, and older-aged a higher, susceptibility to conspiracy theories during the COVID-19 pandemic compared to non-caregivers. The results indicate that providing care could be protective among middle-aged individuals, whereas older informal caregivers may benefit from interventions to reduce susceptibility to conspiracy theories and the associated risks for health and wellbeing.

Longitudinal Cohort Study of Depression and Anxiety Among Older Informal Caregivers Following the Initial COVID-19 Pandemic Response in Aotearoa New Zealand.

ObjectivesTo assess the impact of providing care and conditions of care on psychological wellbeing among older informal caregivers following the initial period of COVID-19 pandemic restrictions in Aotearoa New Zealand.MethodsData were from population-based cohorts of older adults participating in the 2020 Health, Work and Retirement longitudinal survey (n = 3839, 17.4% informal caregivers). Changes in symptoms of depression and anxiety over 2018–2020 surveys associated with sociodemographic factors, caregiving, cohabitation with the care recipient, assistance provided with activities of daily living, support in providing care, and opportunity cost of care were assessed.ResultsIncreased depression, but not anxiety, was associated with providing informal care. Among caregivers, lower living standards and cohabitation were associated with increased depression. Lower living standards, unemployment, and lower help from friend/family networks were associated with increased anxiety.DiscussionEconomic hardship and social capital provide targets for supporting psychological wellbeing of older caregivers during periods of pandemic restrictions.

Taking care of older caregivers who lose control: The association between mastery and psychopathology

ObjectiveIn Europe there is a growing number of informal caregivers above 55 years of age, some of whom experience high levels of psychological distress. Our aim is to investigate the prevalence of psychological distress and its association with perceived mastery among elderly informal caregivers. MethodsIn a large representative random sample of citizens from four cities in the Netherlands, we compared psychological distress among older and younger informal caregivers. Next, we selected informal caregivers aged 55 years and older (n = 2663). Mastery was measured by means of the Pearlin Mastery Scale and psychological distress by means of the Kessler psychological distress scale (K10). We presented weighted percentages and conducted multivariate logistic regression analyses. ResultsThe prevalence of psychological distress was 41.9% among elderly informal caregivers, as opposed to 52.6% among younger informal caregivers. Among the older informal caregivers there was an association between insufficient sense of mastery and psychological distress (OR = 21.3; 95% CI = 12.8–35.5), which persisted after correction for covariates (OR = 4.9; 95% CI = 2.8–8.6). ConclusionThe association between insufficient sense of mastery and psychological distress in elderly caregivers is strong. Mastery should be considered a point of engagement for preventive interventions on caregiver distress.

Knowledge, attitudes, and practices of primary healthcare providers with assessing and supporting older informal caregivers

A time burden, financial strain, and prioritizing care recipient needs over their own are key barriers preventing informal caregivers from engaging in health-promoting self-care. Primary healthcare providers are well positioned to assess and support informal caregivers. A cross sectional descriptive, correlational study was used to examine the knowledge, attitudes, and practices of healthcare providers regarding assessment and support of older informal caregivers. The Healthcare Professional Facilitated Health Promotion (HPFHP) Model guides this study by depicting the collaborative patient-healthcare professional relationship. The Caregiver Self-Care Survey for Healthcare Providers measured the knowledge, attitudes, and practices of 80 healthcare providers on assessing and supporting older informal caregivers. Descriptive and inferential statistics were calculated using IBM Statistical Package for the Social Sciences (SPSS) 28.0 software. Results indicated that despite positive attitudes, knowledge deficit and system level barriers prevented integration of caregiver assessment in practice. A caregiver identification process, user-friendly assessment tool, and system level changes are overdue.

Older Caregivers’ Positive and Negative Experiences With Caregiving

U.S. population growth is greatest amongst the oldest-old who are most likely to need temporary or permanent reliance on formal or informal care-giving. With co-survival of older spouses, and greater longevity, informal care-giving is increasingly provided by older adults for other older adults. Little is known about the positive and negative care-giving experiences of older informal caregivers. This observational study examines the relationship between the care-giving situation and the positive and negative perceptions of care-giving in caregivers age 65 and older. A survey of 108 older informal caregivers utilizes well-validated instruments to measure perceptions of two positive (positive self image, positive life) and two negative (stress, uncertainty) experiences due to care-giving. Regressions statistically assess the relationship between care-giving situations and these positive and negative perceptions. We find that while some care-giving situations, such as higher amounts of unpaid support, are related to positive care-giving experiences, others, such as care-giving a recipient with a greater number of ADL deficits, having more care-giving responsibilities, and having increased hours of work due to care-giving, are related to more negative experiences. Some situations, such as lower income and greater involvement in care-giving, are related to both positive and negative perceptions. Higher levels of emotional support were related to mixed positive and less negative perceptions of care-giving. Result indicate that healthcare system and community support is needed to provide opportunities for unpaid support and assistance with caregivers of recipients with a high number of ADL deficits and caregivers who have more care-giving responsibilities.

An integrative systematic review of creative arts interventions for older informal caregivers of people with neurological conditions.

ObjectiveWe aimed to assess and synthesise the current state of quantitative and qualitative research concerning creative arts interventions for older informal caregivers of people with neurological conditions.MethodsA systematic search was employed to identify studies that examined creative arts interventions for older informal caregivers, which were synthesised in this integrative review. We searched the following databases: MEDLINE, PubMed, EBSCO, CINAHL, EMBASE, PsycINFO, Cochrane Library, Scopus, Web of Science, and Google Scholar. We also backwards searched references of all relevant studies and inspected trials registers.ResultsOf the 516 studies identified, 17 were included: one was quantitative, nine were qualitative and seven used mixed methods. All included quantitative studies were pilot or feasibility studies employing pre- and post-test design with small sample sizes. Studies varied in relation to the type of creative intervention and evaluation methods, which precluded meta-analysis. Large effect sizes were detected in wellbeing measures following singing and art interventions. The qualitative synthesis highlighted that interventions created space for caregivers to make sense of, accept and adapt to their identity as a caregiver. Personal developments, such as learning new skills, were viewed positively by caregivers as well as welcoming the opportunity to gain cognitive and behavioural skills, and having opportunities to unload emotions in a safe space were important to caregivers. Group creative interventions were particularly helpful in creating social connections with their care-recipients and other caregivers.ConclusionsThe current review revealed all creative interventions focused on caregivers of people living with dementia; subsequently, this identified gaps in the evidence of creative interventions for informal caregivers of other neurological conditions. There are encouraging preliminary data on music and art interventions, however, little data exists on other art forms, e.g., drama, dance. Creative interventions may appeal to many caregivers, offering a range of psycho-social benefits. The findings of the current review open the way for future research to develop appropriate and creative arts programmes and to test their efficacy with robust tools.

How Many Older Informal Caregivers Are There in Europe? Comparison of Estimates of Their Prevalence from Three European Surveys.

Informal caregivers are people providing some type of unpaid, ongoing assistance to a person with a chronic illness or disability. Long-term care measures and policies cannot take place without taking into account the quantitatively crucial role played by informal caregivers. We use the European Health Interview Survey (EHIS), the European Quality of Life Survey (EQLS), and the Study on Health and Ageing in Europe (SHARE) to measure the prevalence of informal caregivers in the European population, and analyze associated socio-demographic factors. This rate ranges between about 13 percent in Portugal and Spain, and more than 22 percent in Luxembourg, Belgium, and Denmark. It declines in older age groups and, on average, is lower in men than in women in all countries studied, and lower among the poorly educated compared to those with higher levels of education. However, large variance was observed in the average share of informal caregivers for most countries between the three surveys. Our findings, estimated through the three surveys, reveal common trends, but also a series of disparities. Additional research will be needed to enable policy makers to access a richer and more harmonized body of data, allowing them to adopt truly evidence-based and targeted policies and interventions in this field.

Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review.

BackgroundInformation and communication technology (ICT)–based solutions have the potential to support informal caregivers in home care delivery. However, there are many challenges to the deployment of these solutions.ObjectiveThe aim of this study was to review literature to explore the challenges of the deployment of ICT-based support solutions for informal caregivers and provide relevant recommendations on how to overcome these challenges.MethodsA scoping review methodology was used following the Arksey and O’Malley methodological framework to map the relevant literature. A search was conducted using PubMed, IEEE library, and Scopus. Publication screening and scrutiny were conducted following inclusion criteria based on inductive thematic analysis to gain insight into patterns of challenges rising from deploying ICT-based support solutions for informal caregivers. The analysis took place through an iterative process of combining, categorizing, summarizing, and comparing information across studies. Through this iterative process, relevant information was identified and coded under emergent broader themes as they pertain to each of the research questions.ResultsThe analysis identified 18 common challenges using a coding scheme grouping them under four thematic categories: technology-related, organizational, socioeconomic, and ethical challenges. These range from specific challenges related to the technological component of the ICT-based service such as design and usability of technology, to organizational challenges such as fragmentation of support solutions to socioeconomic challenges such as funding of technology and sustainability of solutions to ethical challenges around autonomy and privacy of data. For each identified challenge, recommendations were created on how to overcome it. The recommendations from this study can provide guidance for the deployment of ICT-based support solutions for informal caregivers.ConclusionsDespite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. Designers for ICTs for informal caregivers should follow participatory design and involve older informal caregivers in the design process as much as possible. A collaboration between designers and academic researchers is also needed to ensure ICT solutions are designed with the current empirical evidence in mind. Taking actions to build the digital skills of informal caregivers early in the caregiving process is crucial for optimal use of available ICT solutions. Moreover, the lack of awareness of the potential added-value and trust toward ICT-based support solutions requires strategies to raise awareness among all stakeholders—including policy makers, health care professionals, informal caregivers, and care recipients—about support opportunities offered by ICT. On the macro-level, policies to fund ICT solutions that have been shown to be effective at supporting and improving informal caregiver health outcomes via subsidies or other incentives should be considered.

Health promotion with older informal caregivers: a demand-oriented organization of support

Abstract Background Older informal caregivers are considered to be a growing, vulnerable group with multiple burdens. Existing support programs are rarely used which indicates a lack in meeting the specific demands of the target group. This study was to examine the need for support and the preferred design of support programs for informal caregivers aged 65 years and older. Methods A mixed-methods approach was used to identify types of current support programs and demands regarding health promotion and self-management of older informal caregivers. Therefore, two systematic literature researches and a qualitative survey of German program providers were performed. Furthermore, 16 focus group discussions (FGD) with older informal caregivers as well as three FGD with disseminators in three German cities were accomplished. Results Most support programs found focus on caregiving instead of health promotion. Most FGD participants preferred: social interaction with health promotion activities, programs thematically focusing on relaxation and physical activity as well as consultation meetings. One of the crucial factors of the utilization of support programs is the guaranteed care of the person who requires it simultaneous to an intervention. In general, it was found that informal caregivers prioritize the health of the person in need of care over their own which indicates low self-awareness. Conclusions Support programs combining social interaction with guided health promotion activities seem to be more attractive to informal caregivers than common programs. Those units should especially focus on the low self-awareness the target group shows. Local network structures need to be strengthened to facilitate the development and utilization of support programs. Key messages Networks of disseminators could facilitate support programs for informal caregivers. These programs should contain social interaction, health promotion activities and ensured care of the person who needs it.

Bringing older informal caregivers and recipients to the digital age: Experiences of using digital services

Bringing older informal caregivers and recipients to the digital age: Experiences of using digital services

Quality of life among older informal caregivers of people with dementia

In Germany, informal caregiving becomes an increasingly important issue especially for people with dementia. Spouses often provide nursing care due to the limited daily living skills of people with dementia. This leads to awide range of caregiver burden and decreased quality of life (QoL). Analyses on the relation between QoL and caregiver burden of older informal caregivers in Germany are rare. The following research questions were assessed: (1) Does caregivers' QoL differ from that of the older general population?; (2) Which sociodemographic, health- and care-related characteristics affect caregivers' QoL? For this study, two samples (aged 60years and older) were recruited: informal caregivers (n = 119) and arepresentative sample of older non-caregivers in the general population (n = 1133). Linear regression analyses were applied to examine the effects of sociodemographic, health and care-related variables on the QoL of older informal caregivers of people with dementia. Older informal caregivers reported asignificantly lower QoL compared to older non-caregivers in the general population. Especially the domains autonomy, activities in the past, the present and the future as well as intimacy were negatively associated with caregivers' QoL. The results of the study highlighted caregivers' need for assistance. Due to demographic changes, tailored support services should be based on older caregivers' needs.

Brain Structural Markers and Caregiving Characteristics as Interacting Correlates of Caregiving Strain

To evaluate the association between brain structural markers and caregiving strain among older informal caregivers. A secondary data analysis combining data from the Caregiver Health Effects Study (1993-1994) and the Cardiovascular Health Study MRI examination (1992-1994). Four United States communities. Co-residing spousal caregivers (N = 237; mean age: 76.2 years, SD: 2.2 years). Visually rated ventricular and white matter (WM) grades from magnetic resonance imaging, caregiving strain defined as "emotional or physical strain associated with providing care" for any of 12 activities of daily living (ADLs) and instrumental activities of daily living (IADLs), plus measures of caregiving characteristics and caregiver's health. Overall, 56% of caregivers reported strain. We detected an interaction where strain was very common (>82%) among caregivers who helped with four or more IADLs, regardless of WM grades, and among caregivers with the worst WM grades (WM grades ≥4), regardless of the number of IADLs they helped with. Among caregivers helping with fewer than four IADLs, having WM grade 4 or greater was associated with a 55% higher prevalence ratio for reporting strain. This association remained statistically significant but was most markedly attenuated by adjustments for: care recipient's memory and behavioral problems, caregiver's depression symptoms, and caregiver's ADL impairment. Caregiving strain is very common among older informal caregivers who provide help with many IADLs, and among caregivers who help with fewer IADLs, but have manifest signs of white matter pathology. Modern quantitative-neuroimaging studies are needed to evaluate whether more subtle variability in brain structure confers caregiving strain and the related health consequences.

People with Alzheimer's disease and their spouse-caregivers: differences in perceptions of sexual satisfaction?

Older informal caregivers aged 65+ years account for 34% of all carers in the USA (Family Caregivers Alliance, 2016), 22% in England and Wales (Carers UK, 2015), and 24% in Australia (Deloitte Access Economics, 2015). For many older carers, this means looking after their spouse or intimate partner who in many cases has dementia (Donnellan et al., 2015). As the incidence of dementia increases, the need to understand the impact of caring on these intimate relationships becomes more vital, so the experiences of spousal caregivers can be anticipated, validated, and supported. It is also important to understand the gender differences in these care relationships, so that education and services can be tailored to meet the different needs of men and women caregivers. Sexual activity in later life is associated with both mental and physical health (Ganong and Larson, 2011; Anderson, 2013), and is therefore, important to maintain, perhaps even in the context of caring for someone with dementia.

Sleep disruption in older informal caregivers.

Informal caregiving is a prevalent phenomenon in the United States. A review of the literature reveals that, although much research has been done regarding the areas of informal caregiver burden and the effect of sleep disruption on healthy adults, little has been done in the area of caregiving and sleep disruption, especially as it relates to older informal caregivers. Older informal caregivers represent a significant portion of the informal caregiving population and are a population at risk for high levels of sleep disturbance. Further research designed to investigate sleep disruption in older informal caregivers is needed to move toward the development of evidence-based assessment tools for practice and interventions aimed at restoring normal sleep patterns in this vulnerable population.

Older caregivers in Iceland: providing and receiving care

Few studies have looked at care provided by older caregivers. This study analyses the characteristics of older informal caregivers and investigates how these caregivers interacted with other informal caregivers and the formal care system. The ‘Icelandic Older People’ survey provided data for 782 participants, of whom 157 were caregivers aged 65 years and older. The analysis demonstrates that older people who live with someone are more frequently informal caregivers than those who live alone. Emotional support was the most common help provided. The older caregiver was often alone in his/her role as a caregiver, but when extensive care was required, the formal care system provided additional support. Almost half of the older caregivers needed help themselves, mostly with ‘Instrumental Activities of Daily Living’ (IADL). This study provides information about older caregivers and how their care interacts with the formal care system. This group is likely to grow as more people live longer. Thus, the number of older caregivers and the care they provide must be taken into account when making plans for the care of older people in the coming years.