A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort

Informal caregivers are those who provide unpaid care to a relative or friend with a chronic illness, disability or other long-lasting health or care need. Providing informal care in the context of chronic health conditions presents a significant global challenge. Examination of the determinants of informal caregivers’ behaviour, especially in terms of motivations and willingness to provide/receive care, is crucial to understanding the nature of caregiver and care recipient experiences. A large group of international researchers have co-operated to execute the ENTWINE iCohort-a multinational, transdisciplinary, longitudinal study incorporating intensive methods to examine caregiver experiences in the context of chronic health conditions. The aim of ENTWINE-iCohort is to investigate the broad spectrum of factors, i.e., cultural, personal, geographical, relational, psychological, and economic that may affect motivations, willingness to provide or receive care, among diverse groups of informal caregivers and their care recipients, in different countries that have different care systems. Study questionnaires will be disseminated on-line in nine countries: Germany, Greece, Ireland, Italy, Israel, the Netherlands, Poland, Sweden, and the UK. Cross-sectional and longitudinal multivariate analysis, including intensive longitudinal and dyadic data analysis will be applied to examine the relative contribution of the above factors to caregiver or care recipient wellbeing.

No Young Carer Left Behind: A Two-Phased Study to Understand and Address the Needs of Young Carers from Rural and Urban Communities Before and During Covid-19

Canada has one of the largest cohorts of young carers aged 15 to 24 who provide unpaid care for a family member. Although the body of research on young carers is growing in Canada, knowledge on the experiences and needs of young carers living in remote and rural communities is almost absent. This study aimed to understand and address the needs of young carers in rural/remote communities to support our community partner’s goal of expanding their resources and support of this underserved population. The study was conducted in two phases with the first phase being a needs assessment and the second phase addressed those needs. In Phase 1 (conducted pre-COVID-19), three focus groups were conducted with young carers from rural and urban communities with 20 young carers participating in total. Six themes were identified: Internet Usage in Daily Life; Finding and Filtering Information; Concerns Related to Internet Use; Social and Mental Support; What Makes Caregiving More Challenging; and Designing Something to Make Caring Easier. During Phase 2 (conducted mid-COVID-19), 2 focus groups were held via Zoom for Healthcare with a mix of rural and urban young carers in each group. One of the focus groups was held with those under 18 years old and the other included those between 18 to 25 years old. Four themes were identified: Responses to Emergencies; Awareness of Emergency Planning; Potential Impact on Planned Behaviour; and Considerations and Suggestions for Improvement.

Impacts of COVID-19 on parents with small children in South Korea: survey findings and policy implications

The COVID-19 pandemic has emphasised the importance of care and care work, and exposed pre-existing inequalities. Our survey of the impacts of COVID-19 on parents with small children in South Korea reveals that mothers were much more likely to bear the increased burden of childcare than fathers, which, in turn, had direct and negative impacts on their well-being. We discuss how South Korea’s dualised labour market, gender-biased employment practice, social norms about childcare and instrumental approach to family and care policies may have contributed to the persistent unequal distribution of unpaid care work within households and gender inequality.

The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort

Background: The drivers of costs of care for people with dementia are not well understood and little is known on the costs of care for those with rarer dementias. Objective: To characterize use and costs of paid and unpaid care over time in a cohort of people with dementia living in Britain. To explore the relationship between cohort members’ demographic and clinical characteristics and service costs. Methods: We calculated costs of health and social services, unpaid care, and out-of-pocket expenditure for people with mild-to-moderate dementia participating in three waves of the IDEAL cohort (2014– 2018). Latent growth curve modelling investigated associations between participants’ baseline sociodemographic and diagnostic characteristics and mean weekly service costs. Results: Data were available on use of paid and unpaid care by 1,537 community-dwelling participants with dementia at Wave 1, 1,199 at Wave 2, and 910 at Wave 3. In models of paid service costs, being female was associated with lower baseline costs and living alone was associated with higher baseline costs. Dementia subtype and caregiver status were associated with variations in baseline costs and the rate of change in costs, which was additionally influenced by age. Conclusion: Lewy body and Parkinson’s disease dementias were associated with higher service costs at the outset, and Lewy body and frontotemporal dementias with more steeply increasing costs overall, than Alzheimer’s disease. Planners of dementia services should consider the needs of people with these relatively rare dementia subtypes as they may require more resources than people with more prevalent subtypes.

“I may be essential but someone has to look after my kids”: women physicians and COVID-19

Objectives This paper analyzes results from focus groups held with women physicians in British Columbia which explored questions around how gender norms and roles influenced their experiences during COVID-19. Methods Four virtual focus groups were organized between July and September 2020. Participants (n = 27) were voluntarily recruited. Data were analyzed using applied thematic analysis. Results In addition to the COVID-19-related changes experienced across the profession, women physicians faced distinct challenges related to an increase in unpaid care responsibilities, and often felt excluded from, and occasionally dismissed by, leadership. Women leaders often felt their contributions were unrecognized and undervalued. Participants drew strength from other women leaders, peer networks, and professional support, but these strategies were limited by unpaid care and emotional labour demands, which were identified as increasing risk of burnout. Discussion Even though women physicians hold a degree of relative privilege, unpaid care work and gender norms contribute to distinct secondary effects of COVID-19. Women physicians link these to pre-pandemic assumptions (within families and communities) that women would absorb care deficits at their own cost. Health system leadership continues to reflect a masculine normative experience wherein the personal and professional are separated, and which devalues the emotional labour often associated with feminine leadership. The strategies participants employed to address negative impacts, while demonstrating resourcefulness and peer support, reflect individualistic responses to social-structural challenges. There is a need for greater recognition of women’s contributions at home and work, increased representation in decision-making, and practical supports such as childcare and counselling.

Themes describing social isolation in family caregivers of people living with dementia: A scoping review

Introduction The number of people with dementia has been increasing. Evidence shows that over 16 million family caregivers provide unpaid care for people with dementia. However, family caregivers experience several challenges throughout their caregiving role, including that of social isolation. Although social isolation in people with dementia has been well documented, social isolation in their family caregivers has not received as much scholarly attention. This scoping review sought to address this dearth of research through the following research question: “What are themes, concepts, or constructs that describe social isolation of family caregivers for people living with dementia?”. Method An electronic search was conducted in PubMed, PsycInfo, and Scopus, using the following Boolean search phrase: dementia AND “social isolation” AND (caregiver OR carers). Content analysis was conducted to identify relevant themes. Findings The initial search yielded 301 studies. Through screening processes, 13 studies were eligible for review. Based on a synthesis of evidence, five themes emerged from the data: disease progression, psychological state, social networks, social supports, and technology. Discussion This review demonstrates that caregiving is related to social isolation in family caregivers of people living with dementia. The experience of social isolation was related to the progression of dementia, psychological states, and lack of supports. In contrast, social supports, social networks, and using technology may reduce social isolation. Identifying themes provides policy and practice implications, such as using information and communication technology to create and redefine social networks.

Challenges in Resource Utilization for Caregivers of Persons With Dementia: A qualitative Study

This study highlights primary caregivers’ experiences with health department policies designed to support people with cognitive impairment/Alzheimer’s Disease and Related Dementias (ADRD). Caregivers were defined as individuals aged 45-85 that provide at least 10 hours of unpaid care. Five, 90-minute focus groups were conducted virtually with 24 caregivers of individuals with cognitive impairment/ADRD. Transcripts were analyzed thematically. Caregivers were primarily Black females (75%) with at least a high school education (42%). Care recipients were likely to be community-dwelling parents (71%), with moderate or advanced (79%) dementia. Caregivers described challenges with accessing resources intended for care recipients, especially as cognitive impairment worsened. Caregivers reported providing care 24/7 as traumatizing. Home-based personal aides and companionship services did not reduce this burden. COVID-19 impacted caregivers and care recipient’s access to resources increasing burden. Policies need to be flexible for ever-changing needs of individuals with ADRD and support the overall well-being of the caregivers.

Caregiving Across the Life Course: Life History Findings from the Health and Retirement Study (HRS)

Informal caregiving, defined as unpaid care provided to a relative or friend with some sort of special need, is a topic of research across different disciplines. Previous research highlights the prevalence and heterogeneity of caregivers in terms of their age, gender, relationship with the care recipient, and the duration of care provision. However, most research focuses on a specific episode of caregiving. Little is known about the people who provide care to multiple recipients throughout their own life. To fill this gap, we examined data from the HRS Spring 2017 Life History Mail Survey (N = 3520; age range 50-101 yrs). Participants reported their relationship with people to whom they had provided unpaid care for ≥ 6 months (max 5) and listed the start and end years of care. Compared with people who had not provided care, caregivers (N = 1000, 28%) were more likely to be women, white, and currently widowed. They cared for their parents (67%), spouses (22%), children (11%), or other relatives (16%) and 30% reported providing care two or more times (M = 1.44, SD = 0.81). Respondents, who reported multiple episodes of caregiving were more likely to be women, widowed, aged between 25 and 50 at the time of first providing care. People who first cared for their spouse were less likely to report multiple caregiving episodes comparing with those who cared for parents or children. Future research will examine the health and well-being consequences associated with caregivers’ histories of providing unpaid care to others.

Prevalence and Characteristics of Subjective Cognitive Decline Among Caregivers, 2015-2019

Approximately 20% of U.S. adults provide unpaid care to family members and friends with a health condition or disability, and 20% of caregivers reported being in fair or poor health themselves. Much of the assistance caregivers provide have cognitive components, such as medication or financial management, yet little is known about caregivers’ cognitive functioning. Subjective cognitive decline (SCD), or self-reported worsening of memory over the past year, among caregivers could impact the quality of care they provide. This study assessed prevalence of SCD by caregiving status and, among caregivers, the distribution of sociodemographic and other characteristics by SCD status. The study included 93,851 community-dwelling adults aged ≥45 years in 22 states who completed both the Behavioral Risk Factor Surveillance System Cognitive Decline and Caregiving modules during 2015-2019. All data were weighted; comparisons are based on modified Rao-Scott chi-square tests (α=0.05). Among caregivers (n=21,238), 12.6% (95%CI:11.7-13.5) reported SCD, compared with 10.2% (95%CI:9.7-10.7) of non-caregivers (p<0.0001). Caregivers with SCD had more chronic health conditions, lower educational attainment, and were less likely to be married or employed than caregivers without SCD, despite a similar age distribution. Caregivers with SCD were also more likely than caregivers without SCD to report fair or poor health, frequent mental distress, a history of depression, and frequent activity limitations. SCD may negatively impact caregivers’ health, function, and ability to provide care. With the anticipated increases in the need for caregiving, it is critical to understand the cognitive health of caregivers to better support caregivers and care recipients.