Loneliness In Caregivers Research Articles

Feeling Alone Together: Loneliness in Older Adults with Cognitive Impairment and Their Family Caregivers with Low Mastery

Introduction: Loneliness in older persons with cognitive impairment (PCI) may beget loneliness in their family caregivers, depending on buffering resources caregivers possess. This study examined the association between loneliness in older PCI and loneliness experienced by their family caregivers, and the moderating role of caregiver mastery in this association. Methods: Dyadic data from 135 PCI and their family caregivers in Singapore were analyzed using multivariable regression. Loneliness was measured using a three-item UCLA loneliness scale. Mastery was assessed using a seven-item Pearlin instrument. Results: Multivariable regression showed that PCI loneliness and caregiver loneliness were weakly associated, taking other covariates into account. Notably, a significant interaction between PCI loneliness and caregiver mastery was observed, indicating that PCI loneliness was associated with caregiver loneliness only when caregivers had low mastery. Conclusion: Lonely PCI may share their feelings of loneliness with their caregivers, and this can lead to loneliness among caregivers if they have low mastery. Promoting caregiver mastery may help reduce caregiver loneliness, directly and indirectly as a buffer against PCI loneliness.

FEELING ALONE TOGETHER: LONELINESS IN OLDER ADULTS WITH COGNITIVE IMPAIRMENT AND THEIR CAREGIVERS WITH LOW MASTERY

Abstract Loneliness can be contagious because lonely people tend to share their loneliness with others. According to this perspective, loneliness in older persons with cognitive impairment (PCI) may beget loneliness in their family caregivers. However, not all caregivers of lonely PCI experience loneliness. This may be because caregivers have buffering resources that mitigate the contagion of loneliness. Nevertheless, empirical evidence on whether and how PCI and caregiver loneliness are related is lacking. Therefore, we examined the association between PCI loneliness and caregiver loneliness, and the moderation role of caregiver mastery on this association. We used dyadic data from 135 PCI and their family caregivers in Singapore. Descriptive statistics and bivariate correlation showed that PCI reported higher levels of loneliness than their caregivers, and PCI and caregiver loneliness were weakly related. Multivariable regression showed that PCI loneliness was not associated with caregiver loneliness, taking other covariates into account. Nevertheless, we found that the interaction between PCI loneliness and caregiver sense of mastery was significant, such that PCI loneliness was significantly associated with caregiver loneliness when caregivers had low mastery. In conclusion, lonely PCI may share their loneliness with their caregivers, and this may lead to caregiver loneliness if caregivers have low mastery. Tailored interventions should be designed to reduce loneliness among PCI and their caregivers and improve caregiver mastery as a protective factor against the spread of loneliness between PCI and caregivers.

Factors that promote and threaten Hope in caregivers of children with chronic conditions.

to identify the factors that promote and threaten Hope in family caregivers of 2- to 3-year-old children with chronic conditions. qualitative study with 46 family caregivers of children between 2 and 3 years old with a chronic condition, discharged from two Neonatal Intensive Care Units. Data was collected through semi-structured interviews guided by the Model for Intervention in Mutual Help Promoter of Hope. Data were submitted to deductive thematic analysis. the following were identified as factors that promote Hope: The experience shared with members of the social support network; The relationship with the child; Clinical improvement of the child; Spirituality; Positive guidance for the future. The following were identified as factors that threaten Hope: Conflictual relationships and discredit of the child by close people; Uncertainties about the future; Insecurities about the ability to care for the child. the threatening factors of Hope generated suffering, pain, anguish, anxiety, and loneliness in caregivers. The promoting factors of Hope generated comfort, motivation, strength and joy. The findings allow Nurses to recognize the strengths and weaknesses of caregivers and adopt behaviors that promote Hope in caregivers of children with chronic conditions.

Fatores promotores e ameaçadores da Esperança em cuidadores de crianças com condições crônicas

Objective: to identify the factors that promote and threaten Hope in family caregivers of 2- to 3-year-old children with chronic conditions. Method: qualitative study with 46 family caregivers of children between 2 and 3 years old with a chronic condition, discharged from two Neonatal Intensive Care Units. Data was collected through semi-structured interviews guided by the Model for Intervention in Mutual Help Promoter of Hope. Data were submitted to deductive thematic analysis. Results: the following were identified as factors that promote Hope: The experience shared with members of the social support network; The relationship with the child; Clinical improvement of the child; Spirituality; Positive guidance for the future. The following were identified as factors that threaten Hope: Conflictual relationships and discredit of the child by close people; Uncertainties about the future; Insecurities about the ability to care for the child. Conclusion: the threatening factors of Hope generated suffering, pain, anguish, anxiety, and loneliness in caregivers. The promoting factors of Hope generated comfort, motivation, strength and joy. The findings allow Nurses to recognize the strengths and weaknesses of caregivers and adopt behaviors that promote Hope in caregivers of children with chronic conditions.

Burden of care and a sense of loneliness in caregivers of children with type 1 diabetes. a cross-sectional study

BackgroundTreatment of type 1 diabetes is a process involving not only sick children, but also their caregivers.AimTo assess the burden of care and sense of loneliness in caregivers of children with type 1 diabetes. Also, an analysis was conducted of the connection between sociodemographic factors characterizing caregivers and the clinical factors characterizing sick children and between the burden of care and the sense of loneliness.Materials and methodsThe study included 125 caregivers of children with type 1 diabetes. In order to collect the research data, the Caregiver Burden Scale and the Revised UCLA Loneliness Scale were used.ResultsIn the research group, the total result in the caregiving burden scale was 2.14, which remains within the average burden level. Caregivers showed the highest burden level in the General Strain Subscale. The analysis showed that mothers experience a greater burden of care than fathers in the General Strain Subscale and that caregivers of younger children are more burdened with care within the Isolation and Disappointment Subscales. Moderate high degree of loneliness was shown in 4.8% of caregivers. A higher burden of care for caregivers of children with type 1 diabetes is accompanied by a higher sense of loneliness.ConclusionsThe results of this study may help healthcare professionals plan a holistic, family-centered care program that will take into account factors that increase the burden of care: younger age of the affected child, motherhood, caregiver unemployment, feelings of loneliness, lower education, caregiver unemployment, blood glucose meter measurements, and frequent night-time blood glucose measurements.

Freedom and loneliness: dementia caregiver experiences of the nursing home transition.

the transition to nursing home care has previously been linked to negative outcomes for spousal caregivers of persons with dementia (PwD). However, little is known about the experience or trajectory of loneliness in spousal caregivers during this time. to explore experiences of loneliness in caregivers during the nursing home admission of their spouse or partner with dementia. semi-structured interviews were conducted with 11 individuals living in Ireland between Oct 2020 and June 2021, who were married to/partnered with a PwD who had, in the past 7 years, moved to full-time nursing home care. Data were collected and analysed using a deductive qualitative analytic strategy in the grounded theory tradition. data were interpreted in the context of Weiss' typology of social and emotional loneliness and indicated that social loneliness increased for many at the point of diagnosis, decreasing somewhat after the transition, while emotional loneliness increased across the transition. Data were used to refine an existing synthesised model of loneliness, providing an updated model of the causes and contexts of loneliness. the transition to nursing home care differentially affects loneliness subtypes. Results have implications for other transitions, which should be assessed in terms of various subtypes of loneliness. Our refined theoretical synthesis model of loneliness also warrants further evaluation.

COVID‐19‐related loneliness, social isolation and burden in informal caregivers worldwide

AbstractBackgroundInformal caregivers may experience high levels burden. Prior to COVID‐19, loneliness and social isolation, and especially the discordance between them, were recognized for rapid aging‐related cognitive decline. The COVID‐19 has significantly increased social isolation and loneliness in caregivers. Thus, we aimed to explore the variables that were associated with higher care burden among all caregivers and only among caregivers for people living with dementia, and whether the increased burden could be associated with a discrepancy between loneliness and social isolation.Method‘Comparing Loneliness and Isolation in COVID‐19’ was an online global survey of over 20,000 respondents, including 5243 caregivers across 50 countries with enduring brain or/and physical health conditions. We first used a multilevel modelling to identify risk factors associated with higher burden. Then, we defined profiles of discrepancy between loneliness and social isolation, based on the differences between standardized score on a scale of loneliness and of social connectedness and estimated the association between the discrepancy and higher burden.ResultIn our sample, 74% of caregivers were female, 44% were caring for people with dementia, and 22% for people with multiple conditions, including dementia. The most prevalent age group was 60‐69 years old. Factors significantly associated with higher care burden were being female, having poorer financial situation, worse mental health during the pandemic, caring for people with dementia or intellectual disabilities, caring in the same home, being diagnosed with COVID, and changes of care abilities. 40% of caregivers consistently reported high level of loneliness and social isolation, 38% reported consistent lower levels of both, and two groups reported discordance (low levels of loneliness and high social isolation in 13%; high levels of loneliness and mild social isolation in 12%). The latter group was at the highest risk of self‐reported increased and intense care burden.ConclusionThis represents the largest, most widespread survey on the impact of the COVID‐19 pandemic on caregivers of people with long‐term conditions to date and reflects the importance of capturing the nuances in the relationship between loneliness and social isolation in caregivers. It will be an important resource for support agencies and to inform policy.

Project VITAL at Home: Impact of Technology on Loneliness and Well-Being of Family Caregivers of People with Dementia

ABSTRACT Objectives Project VITAL At Home aimed to combat social isolation and loneliness in family caregivers of people with dementia through purposeful engagement and connection. This project examined the effects of technology on caregiver loneliness and well-being, as well as their technology experiences, during the COVID-19 pandemic. Methods Family caregivers were provided iN2L tablets and access to Alzheimer’s Association supportive programs. Caregivers (n = 124) completed online surveys at pre and post evaluation points (average 7 months apart) to assess loneliness, subjective well-being (affect), supportive program usage, and tablet experiences. Results Family caregivers had positive perceptions of the tablets for both themselves and their family members. Tablets had positive effects on caregiver well-being, including giving them an additional caregiver tool, alleviating stress, increasing satisfaction with quiet time, and improving access to supportive programs. Caregiver positive affect decreased, but no changes were observed for negative affect or loneliness. Conclusions Family caregivers found value in the tablets and showed improvements in some aspects of well-being. Randomized trials are needed to more fully assess the benefits of the intervention. Clinical Implications Pairing tablets with caregiving supports is a promising intervention to improve caregivers’ access to vital resources and services and to improve their well-being.

Family Caregiver's Loneliness and Related Health Factors: What Can Be Changed?

Background: Loneliness is a public health issue that may affect the entire population. Loneliness is associated with depression, sleep disorders, fatigue, and increased risk of obesity and diabetes. Risk factors for loneliness include having a poor social network and poor physical and mental health. The main objective was to study factors related to loneliness of family caregivers caring for independent older people. Methods: We performed a non-interventional observational cross-sectional study in south-eastern France. Family caregivers caring for people aged 70 and over and living at home were included. These older people were independent, without long-term conditions, and had applied for professional social assistance for daily living. Data were collected through a questionnaire, administered face-to-face or by telephone. Loneliness and perceived health status were measured through a single-question. Burden was assessed through the Mini-Zarit Scale, and frailty was measured through the Gerontopole Frailty Screening Tool. Results: Of the 876 family caregivers included, 10% felt lonely often or always. They reported more physical and mental health issues than those who did not feel loneliness (p < 0.001). Family caregivers with loneliness were more likely to be looking after a parent and were twice as likely to have a moderate to severe burden (OR = 2.6). They were more likely to feel anxious (OR = 5.6), to have sleep disorders (OR = 2.4), to be frail (OR = 2), and to view the status of their health as poor or bad (OR = 2). Conclusions: Loneliness has a negative impact on health, causes frailty, and places a burden on family caregivers. Means must be implemented to anticipate the consequences of the loneliness felt by family caregivers, notably by orienting them towards the relevant services.

How Lonely are Older Americans Act National Family Caregiver Support Program Participants?

Older Americans Act (OAA) family caregiver services connect family members caring for older adults with a diversity of community-based resources and supports. Social isolation and loneliness are known public health threats, and family caregivers may face greater vulnerability to loneliness given the often-intensive time demands of care provision. Policy stakeholders and aging services providers are increasingly focused on combating loneliness among older adults and family caregivers. To inform efforts to reduce loneliness, we conducted descriptive analyses to identify characteristics of the participants in the OAA National Family Caregiver Support Program associated with higher rates of loneliness, measured with the 3-item UCLA Loneliness Scale. Using data from the 2019 National Survey of Older Americans Act Participants, we examined how caregiver loneliness varied based on caregiver age, gender, income, race and ethnicity, living alone, rurality, and self-reported health, as well as care recipients’ health status and difficulties with ADLs. Among our sample of 1,824 family caregivers, rates of loneliness were high overall (70%). Loneliness was significantly higher for caregivers with poor health (71.4%), incomes less than $20,000 (75.3%), living alone (75.4%), aged 65 or older (73.2%), Hispanic caregivers (82.2%) and caregivers for care recipients with 3 or more ADLs (76.0%). Findings underscore the importance of increasing social engagement opportunities for family caregivers. Policies and programs focused on reducing caregiver loneliness should be accessible to all family caregivers but should prioritize outreach and engagement for groups at higher risk of loneliness.

Sociocultural Influences on the Feeling of Loneliness of Family Caregivers of People with Dementia: The Role of Kinship.

The extent to which familism, dysfunctional thoughts, and coping variables contribute to explaining feelings of loneliness in caregivers, controlling for kinship, is analyzed. Participants were 273 family caregivers of people with dementia. Sociodemographic variables, familism, dysfunctional thoughts, coping strategies for requesting and receiving help, perceived social support, and leisure activities were assessed. The fit of a theoretical model for explaining the effect of cultural and psychological variables on feelings of loneliness in each kinship group was tested. No significant differences in the distribution of loneliness by kinship were found. Higher levels of familism are associated with more dysfunctional thoughts, that are linked to more maladaptive strategies for coping with caring (e.g., less social support and fewer leisure activities). This in turn is associated with higher scores in the feeling of loneliness. The model bore particular relevance to the group of daughters, husbands, and sons, yet not in the case of wives. Sociocultural and coping factors associated with the caring process seem to play an important role in explaining feelings of loneliness in caregivers. Sociocultural factors associated with the care process seem to play an important role in explaining feelings of loneliness in caregivers.

Only the Lonely: Expression of Proinflammatory Genes Through Family Cancer Caregiving Experiences.

The experience of cancer elicits not only turmoil but also resilience in the family, which has been related to psychological adjustment and physical health of family caregivers. The biological pathways linking family cancer caregiving to health, however, remain poorly understood. This study examined the extent to which psychological risk and resilience factors related to a proinflammatory gene expression profile (conserved transcriptional response to adversity, or CTRA) among caregivers during the first-year postdiagnosis of a patient with colorectal cancer. A total of 41 caregivers (mean age = 54 years, 74% female, 40% Hispanic) provided psychological data and peripheral blood samples around 4 and 12 months after diagnosis. Mixed regression models controlling for demographic and biometric factors were used to test the associations of caregiver CTRA gene expression with caregiving stress, loneliness, and lack of social support (risk factors), as well as benefit finding and meaning (resilience factors). When individually tested, all but benefit finding were significantly related to CTRA (R2 ≥ 0.112, p < .045). When adjusted for other factors in either the risk or resilience group, loneliness, social support, and meaning effects remained significant (R2 ≥ 0.120, p < .041). When all study factors were simultaneously adjusted (R2 = 0.139), only loneliness remained significant (p = .034). Findings suggest that caregiving-related transcriptional effects seem to be most pronounced when caregivers experience low social support and loneliness, as well as little meaning or purpose in their caregiving. These findings suggest that the development of new intervention strategies that prioritize reductions in caregiver loneliness may favorably impact biological mechanisms related to caregiver health.

Factors influencing loneliness in cancer caregivers: A longitudinal study.

To describe levels of loneliness in cancer caregivers over a 6 month time period, and to examine factors that influence changes in loneliness in caregivers over time. Prospective, repeated measures design was utilized to examine levels of loneliness and factors that influence loneliness in 129 family caregivers of individuals undergoing cancer treatment at three time points over a 6 month period. Measures included: PROMIS global health and sleep disturbance; NIH Toolbox loneliness, self-efficacy and perceived stress; Family Care Inventory mutuality scale; and Caregiver Reaction Assessment. Approximately one third (30.2%, n = 39) of the caregivers had high levels of loneliness, and levels of loneliness did not change over the three time points (P = .985). For any given time point, caregivers who were not married (P = .008), not working (P = .027), with worse mental health (P = .015), more perceived-stress (P < .0001), and more caregiver burden (P = .003) reported higher levels of loneliness. This study provides guidance for clinicians attempting to identify at-risk caregivers by confirming the findings of previous research that caregivers with higher burden, stress and in poor mental health are at increased risk for loneliness. This study provides preliminary evidence that continuing to work during the caregiving trajectory may be beneficial to caregivers by reducing levels of loneliness. Future research is needed to confirm these findings and to examine novel interventions to reduce loneliness in cancer caregivers.

The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme

Objectives To establish the prevalence of loneliness among family caregivers of people with dementia and to identify potential risk factors for loneliness. Methods Using data from the baseline wave of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study, we examined loneliness in 1283 family caregivers of people with mild-to-moderate dementia living in Great Britain. Multinomial regression was used to examine the relative influence of a series of risk factors for caregiver loneliness. Results Almost half, 43.7%, of caregivers reported moderate loneliness and 17.7% reported severe loneliness. Greater social isolation and increased caregiving stress were linked with both moderate and severe loneliness. Better quality of relationship with the person with dementia along with increased levels of well-being and life satisfaction were associated with a lower relative risk of reporting both moderate and severe loneliness. Discussion This study examines the prevalence and predictors of loneliness in a large sample of family caregivers of people with dementia. Notably over two-thirds of caregivers in our sample reported feeling lonely. Interventions aimed at reducing caregiving stress and supporting meaningful relationships may go some way towards helping to reduce loneliness.

Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative Investigation.

Although providing care to a family member or friend may provide psychological benefits, informal (i.e., unpaid) caregivers also encounter difficulties which may negatively affect their quality of life as well as their mental and physical health. Loneliness is one important challenge that caregivers face, with this psychological state being associated with morbidity and premature mortality. Although previous research has identified loneliness as an issue associated with being an informal caregiver, there is a paucity of evidence that attempts to understand this phenomenon in depth. This study aimed to examine informal caregivers' reflections on, and accounts of, experiences of loneliness linked to their caregiving situation. As part of a cross-sectional, qualitative study, sixteen semi-structured interviews were conducted with 8 spousal caregivers, 4 daughters caring for a parent, 3 mothers caring for a child (or children), and 1 woman looking after her partner. The cared-for persons were suffering from a range of mental and physical health conditions (e.g., dementia, frailty due to old age, multiple sclerosis, depression, autism). Data were analyzed using an inductive thematic analysis. Experiences of loneliness were described by reference to a context of shrunken personal space and diminished social interaction caused by the restrictions imposed by the caregiving role. Loneliness was also articulated against a background of relational deprivations and losses as well as sentiments of powerlessness, helplessness, and a sense of sole responsibility. Social encounters were also seen to generate loneliness when they were characterized by some form of distancing. Though not all sources or circumstances of loneliness in caregivers are amenable to change, more opportunities for respite care services, as well as a heightened sensibility and social appreciation of caregivers' valued contributions could help caregivers manage some forms of loneliness.

Predictors of loneliness in caregivers of persons with Parkinson's disease

This study examined loneliness among caregivers of individuals with Parkinson's disease (PD). The sample included 70 caregivers (74% female; 96% spouses) who were currently living with the patient. A postal survey was sent to caregivers of persons with PD on the mailing list of a regional Parkinson association; response rate was 39%. Assessment instruments included the UCLA Loneliness Scale, Social Provisions Scale, Hoehn and Yahr (caregiver version), a perceived Self-Efficacy Scale developed previously for use with PD caregivers, and questions related to both patient and caregiver characteristics. Caregivers reported more loneliness than all similar normative groups except Alzheimer caregivers ( P < 0.001 to P = 0.011). Hierarchical regression analyses were used to determine whether patient or caregiver characteristics were more predictive of loneliness. Results indicated that patient variables accounted for only 12% of the variance in loneliness, whereas caregiver variables accounted for an additional 46% of the variance ( P < 0.01). Among the significant individual caregiver predictors of greater loneliness were less education, lower perceived self-efficacy (both P < 0.05) and poorer physical health ( P < 0.01). It was also found that persons attending caregiver support groups reported less loneliness ( P < 0.05) and more perceived support ( P < 0.05) than those not attending support groups. Because loneliness was significantly predicted by caregiver rather than patient variables, it is possible that strategic interventions for caregivers could ameliorate loneliness.

The effects of a socialization and music therapy intervention on self-esteem and loneliness in spouse caregivers of those diagnosed with dementia of the Alzheimer type: A pilot study

There is an increasing need to provide interventions which offer opportunities for individuals who care for spouses and other family members to decrease their loneliness and increase their self-esteem. This pilot study, which included four caregivers and their spouses, was a joint effort including music therapy and social work services. It was designed to determine if caregivers who had no prior musical experiences could be trained to use music with their care recipients. It was also designed to determine if caregivers' participation with other care giving and care receiving couples in a social gathering with music therapy programming would affect changes in their measure of loneliness and self-esteem. The results indicated that three of the four caregivers who participated in this study had changes in their selfes-teem scores which indicated improved self-esteem. These changes were not significant, but approached significance at the .05 level of confidence of two subjects. One subject showed little to no change in self-esteem. None of the spouses had significant changes in their measure of loneliness, although The American Journal of Alzheimer's Disease and Related Disorders &amp; Research, January/February 1993 24 two of the four subjects showed trends for less loneliness while one remained about the same and one increased slightly. Additional research is required to further establish the effects of music therapy on self-esteem and loneliness in caregivers offamily members diagnosed with probable Alzheimer's disease

Chronic stress and immunity in family caregivers of Alzheimer's disease victims.

Although acute stress has been associated with transient immunosuppression, little is known about the immunologic consequences of chronic stress in humans. In order to investigate possible health-related consequences of a long-term stressor, we obtained blood samples for immunologic and nutritional analyses and psychologic data from 34 family caregivers of Alzheimer's disease (AD) victims and 34 sociodemographically matched comparison subjects. Family caregivers for AD victims were more distressed than comparison subjects without similar responsibilities. Greater impairment in the AD victim was associated with greater distress and loneliness in caregivers. Caregivers had significantly lower percentages of total T lymphocytes and helper T lymphocytes than did comparison subjects, as well as significantly lower helper-suppressor cell ratios; caregivers also had significantly higher antibody titers to Epstein-Barr virus than did comparison subjects, presumably reflecting poorer cellular immune system control of the latent virus in caregivers. The percentages of natural killer cells and suppressor T lymphocytes did not differ significantly. These data suggest that chronically stressed AD family caregivers do not show immunologic or psychologic adaptation to the level of their well-matched age peers.