The dyadic relationship of family carers and people living with dementia - an umbrella review.

OBJECTIVES: The dyadic relationship of people living with dementia and their family carers is highly relevant when considering the stability of home-based care arrangements. There is a solid body of research that covers issues related to dyadic relationships. However, a synthesis of qualitative research is missing. Therefore, the aim of this review is to give an overview of the dyadic relationship, with the leading research question of what influences the dyadic relationship and how it can be maintained during the trajectory of the disease. METHODS: We performed an umbrella review of qualitative literature on the basis of thematic synthesis and used the SoCA-Dem theory as a theoretical framework. Literature searches in the databases PubMed (MEDLINE), CINAHL, Scopus, and PsycInfo were performed from July to September 2020, additional papers were included until September 2022. We searched without timeframe restrictions and considered publications in English or German. RESULTS: After a systematic database search, resulting in 1325 records, we included 12 reviews. Five analytical themes and 11 subthemes were identified. The analytical themes were 'change in the relationship', 'activities to maintain the relationship', 'continued togetherness', 'home as a place for enacting relationship', and 'influencing factors'. CONCLUSION: The dyadic relationship is a complex and multifaceted phenomenon. It is characterized by family carers' attempts to continue togetherness using different strategies and is mainly influenced by the quality of the premorbid relationship and the mindset of the family carer.

Sociodemographic aspects and health care-related outcomes: a latent class analysis of informal dementia care dyads.

BACKGROUND: Studies revealed the importance to assess dementia care dyads, composed of persons with dementia and their primary informal caregivers, in a differentiated way and to tailor support services to particular living and care circumstances. Therefore, this study aims first to identify classes of dementia care dyads that differ according to sociodemographic, care-related and dementia-specific characteristics and second, to compare these classes with regard to healthcare-related outcomes. METHODS: We used data from the cross-sectional German DemNet-D study (n = 551) and conducted a latent class analysis to investigate different classes of dementia care dyads. In addition, we compared these classes with regard to the use of health care services, caregiver burden (BIZA-D), general health of the informal caregiver (EQ-VAS) as well as quality of life (QoL-AD) and social participation (SACA) of the person with dementia. Furthermore, we compared the stability of the home-based care arrangements. RESULTS: Six different classes of dementia care dyads were identified, based on best Bayesian Information Criterion (BIC), significant likelihood ratio test (p <  0.001), high entropy (0.87) and substantive interpretability. Classes were labelled as "adult child parent relationship & younger informal caregiver", "adult child parent relationship & middle aged informal caregiver", "non family relationship & younger informal caregiver", "couple & male informal caregiver of older age", "couple & female informal caregiver of older age", "couple & younger informal caregiver". The classes showed significant differences regarding health care service use. Caregiver burden, quality of life of the person with dementia and stability of the care arrangement differed also significantly between the classes. CONCLUSION: Based on a latent class analysis this study indicates differences between classes of informal dementia care dyads. The findings may give direction for better tailoring of support services to particular circumstances to improve healthcare-related outcomes of persons with dementia and informal caregivers.

Confronted with COVID-19: Migrant live-in care during the pandemic.

In the spring 2020, measures introduced across Europe to limit the spread of COVID-19 included, among others, the temporary closure of borders. For Romanian and Slovakian live-in carers, this meant they were no longer able to commute between the Austrian households they work in and their respective countries of origin. Due to the relatively short cyclical rotas of 2-4 weeks, travel restrictions heavily affected cross-border live-in care between the three countries, which makes them a particular case for studying the effects of pandemic-related measures on transnational care arrangements. Drawing on media reports, relevant laws and policies, and interviews with representatives of care workers' interests, the article examines how live-in care as a whole and care workers in particular were affected by the pandemic and related policy responses such as specific travel arrangements and financial incentives for workers. It shows that while live-in carers were deemed critical workers and essential for the long-term care system, the inequalities and dependencies already existing in transnational care arrangements were deepened. Care workers' wants, needs and interests were subordinated to the interests of care recipients, agencies and sending and receiving countries.

[The dynamic model of care by relatives]. / Das dynamische Modell der Angehörigenpflege und -betreuung.

BACKGROUND: The dynamics of care arrangements depend on a complex interplay of many factors. To explicitly analyze these interrelationships the "dynamic model of care by relatives" was developed. The starting points are two transition phases: role acquisition and relief. Both decisively influence the adequacy of care arrangements from a caregiver's perspective and these interrelationships have not been addressed with sufficient precision in the existing literature. The model is designed to support professionals in considering the intricate interaction between role acquisition and relief in decision making. METHODS: A causal loop diagram was elaborated by means of a group model building process whereby four university departments contributed to the modeling process. Additionally, 50 external organizations were involved, e.g. outpatient care services, nursing homes, medical and social counseling centers. A total of 18 interviews with caregiving relatives provided the basis for reconstructing the dynamics of the model variables. Finally, computer simulations enabled a model analysis and a comparison with the interview results. RESULTS: The model can be depicted as a causal diagram with five elements characterizing the experiences of caregiving relatives, e.g. acquiring the caregiver role, exhaustion, and relief due to support from third persons. An example serves to illustrate how professionals can transfer the model into practice. DISCUSSION: The model offers ideal typical modes of behavior, allowing professionals to individually generate adequate care arrangements, thereby reflecting their heterogeneity.

Algorithmic assemblages of care: imaginaries, epistemologies and repair work.

In the past decade, the figure of the algorithm has emerged as a matter of concern in discussions about the current state of the healthcare sector and what it may become. While analytical focus has mainly centred on 'algorithmic entities', the paper argues that we have to move our analytical focus towards 'algorithmic assemblages', if we are to understand how advanced algorithms will affect health care. Departing from this figure, the paper explores how an algorithmic system, designed to 'take on' the role of a physiotherapist in physical rehabilitation programmes in Denmark, was designed and made to work in practice. On the basis of ethnographic fieldwork, it is demonstrated that the algorithmic system is a fragile accomplishment and outcome of negotiations between the imaginaries embedded in its design and the ongoing adjustments of IT workers, patients and professionals. Drawing on recent work on the fragility and incompleteness of algorithms, it is suggested that the algorithmic system needs to be creatively 'repaired' to build and maintain enabling connections between bodies in-motion and professionals in arrangements of care. The paper concludes by addressing accountability for the workings of algorithmic systems in medical practice, suggesting that such questions must also be discussed in relation to encounters between algorithmic imaginaries, health professionals and patients, and the various forms of 'repair work' needed to enable algorithmic systems to work in practice. Such acts of accountability cannot be understood within an ethics of transparency, but are better thought of as an ethics of 'response-ability', given the need to intervene and engage with the open-ended outcomes of algorithmic systems.

Older Adults in Rural Appalachia: Preference and Expectations for Future Care.

Little is known about how rural-dwelling older adults anticipate and plan for future care needs. Using a mixed-method explanatory design, structural equation modeling ( n = 535) revealed significant associations between concerns about using services on preference for type of help; preference was associated with likelihood of using future services. Content analysis of interview data from 19 older adults who needed but were not receiving help revealed how they conceptualize their need for assistance and anticipated future care arrangements. Nine older adults were not thinking about future care needs. While most older adults articulated preferences for informal help, they indicated some openness to formal assistance. Preferences did not always align with expectations for the future. Rather, concerns about burdening family and friends outweighed concerns about community services and influenced expectations of using formal services. Understanding rural older adults' expectations for future care arrangements is necessary for advancing policy and implementing successful services options.

Friendship Repertoires and Care Arrangement: A Praxeological Approach.

Friends are important companions and serve as sources for diverse dimensions of social support, including elderly care. Rather than researching populations that have already established care arrangements including friends, the author seeks to understand relationship systems with a focus on the inner logic friendship to consequently describe and understand involved care arrangements, be it with family members or friends. To illustrate the diversity of friendship repertoires, qualitative interviews with older adult Germans are analyzed regarding cognitive concepts of friendships in contrast to familiar ties as well as social practices around relationship systems. While some repertoires successfully include chosen ties in their care arrangements, others not only focus on family, they do not wish to receive care from friends. The article's praxeological approach highlights the need to reflect habitual differences when thinking about elderly informal care arrangements.

Gender disparities in German home-care arrangements.

An ageing population correlates with rising needs for long-term care (LTC). Support programmes should consider the specific needs of the various subgroups of care dependents and family caregivers. The objective of this study was to analyse the gender-specific disparities in home-care arrangements in Germany, and for this purpose, survey and insurance claims data were used. A survey of 2545 insured care recipients with high-level care needs was conducted in 2012 with the Barmer GEK, a major German statutory healthcare insurance. Insurance claims data were provided for a follow-up, focussing on the group aged 60 years and older. For statistical comparison, chi-squared test and t-tests were used, and a p-value < 0.05 was considered statistically significant. Most care recipients are female, and they are on average 2 years older than males. Men receive family care mostly from their wives, whereas widows frequently live alone and receive care from daughters, sons, other relatives, neighbours and friends, as well as from professional nursing services. Furthermore, women more often anticipate the need for (further) professional assistance and move in with a relative or to an assisted living facility or a nursing home in good time. The desired rate for relocation to a nursing home was higher than the anticipated, and during the 6-month follow-up, the actual rate of relocations was in between both. In summary, the caring situation of men and women is different. Care-receiving men are most often cared for by their wives. Widowed women need a social network and their children in order to remain in their own home. To provide better home-care arrangements for women in this situation, the family and social networks need a stronger focus in politics and research. To stabilise the home-care situation of men with high-level care needs, their wives need more support.

Who's Helping Whom? Examination of Care Arrangements for Racially and Ethnically Diverse People Living With Dementia in the Community.

Objective: To address notions around care arrangements for Black and Hispanic people living with dementia (PLwD), the study examined if racial and ethnic differences exist for community-dwelling PLwD. Methods: Using cross-sectional data from the 2015 National Health and Aging Trends Study, we used Pearson's chi-square and mean comparison to examine differences among a sample of n = 863 community-dwelling White, Black, and Hispanic older PLwD. Results: Black PLwD were less likely than White PLwD to use paid help (26.8% vs. 32.6%), but Hispanic PLwD were most likely to use paid help (46.2%, p < 0.05). Black and Hispanic older adults were more often receiving help from a child (65.8% and 72.2%, respectively; p = 0.01) or other family member (40.3% and 31.0%, respectively; p < 0.01). Discussion: Our findings highlight the important role of familial support in care provision for Black and Hispanic communities. Caregiving supports should be intentional in centering services on the family, not a sole caregiver.

Association of Primary and Behavioral Health Integrated Care Upon Pediatric Mental Disorder Treatment.

OBJECTIVE: The objective of this study was to examine whether linkage with mental health (MH) treatment differed across 3 different integrated care arrangements (ICAs), following incident attention deficit hyperactive disorder (ADHD) and major depressive disorder (MDD) diagnoses given by primary care providers (PCPs) in the pediatric setting. METHODS: Using claims linking with multiple public data sources, we examined the treatment initiation among children receiving an incident diagnosis of ADHD or MDD from PCPs working in practices with various ICAs. ICAs were categorized as PCP practiced alone (non-co-located), PCP practiced with specialist outside the practice but co-located at the practice site (co-located), and employed specialists who were co-located (co-located and co-affiliated). RESULTS: A total of 4203 incident ADHD and 298 incident MDD cases diagnosed by PCPs were identified, of which 3123 (74%) with ADHD and 200 (67%) with MDD received treatment within 90 days since the diagnosis. Children diagnosed with ADHD by co-located and co-affiliated PCPs were twice as likely to receive treatment as those diagnosed by non-co-located PCPs (odds ratio [OR] = 1.93; 95% confidence interval [CI], 1.24-2.78). Of those treated, children diagnosed by co-located and co-affiliated PCPs were 2 times more likely to receive guideline recommended psychotherapy (OR = 2.15; 95% CI, 1.35-3.44). These patients were also more likely to be treated at the diagnosing site versus elsewhere. Similar beneficial effects were not observed in those first diagnosed by co-located but non-affiliated PCPs. CONCLUSIONS: Service co-location between co-affiliated PCPs and MH specialists was associated with significant higher ADHD treatment rate and the receipt of guideline-recommended psychotherapy.

A Mixed-Methods Analysis of Care Arrangements of Older People with Limited Physical Abilities Living Alone in Italy.

Older people with limited physical abilities, who live alone without cohabiting family members, need support ageing in place and to perform daily living activities. In this respect, both the available informal and formal care seem crucial. The present study aimed to explore the current role of the care arrangements of older people, especially if they have functional limitations. Qualitative interviews were carried out in 2019 within the "Inclusive ageing in place" (IN-AGE) research project, involving 120 older people who lived at home, alone, or with a private personal care assistant (PCA) in three Italian regions (Lombardy, Marche, and Calabria). A mixed-methods analysis was conducted. Results showed that support networks are still mainly made up of family members, but also of domestic home help (DHH) and PCAs, friends/neighbours, and public services, albeit the latter provide support in a residual way, while the former is not as intensive as it was in the past. Frequency and geographical/living proximity of help play a role, emerging also as a territorial differentiation. The paucity or absence of support, especially from the family, risks compromising the ability of ageing in place. It seems, thus, necessary to innovate and improve, in particular, home services, also through real formal and informal care integration.

Beyond the definition of formal care: Informal care arrangements among older swedes who are not family.

This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent-living men and women aged 67-93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.

Individualization and the Health Care Mosaic in Assisted Living.

BACKGROUND AND OBJECTIVES: Assisted living (AL) is a popular residential long-term care option for frail older adults in the United States. Most residents have multiple comorbidities and considerable health care needs, but little is known about their health care arrangements, particularly over time. Our goal is to understand how health care is managed and experienced in AL by residents and their care network members. RESEARCH DESIGN AND METHODS: This grounded theory analysis focuses on the delivery of health care in AL. Qualitative data were gathered from 28 residents and 114 of their care network members followed over a 2-year period in 4 diverse settings as part of the larger study, "Convoys of Care: Developing Collaborative Care Partnerships in Assisted Living." RESULTS: Findings show that health care in AL involves routine, acute, rehabilitative, and end-of-life care, is provided by residents, formal and informal caregivers, and occurs on- and off-site. Our conceptual model derived from grounded theory analysis, "individualizing health care," reflects the variability found in care arrangements over time and the multiple, multilevel factors we identified related to residents and caregivers (e.g., age, health), care networks (e.g., size, composition), residences (e.g., ownership), and community and regulatory contexts. This variability leads to individualization and a mosaic of health care among AL residents and communities. DISCUSSION AND IMPLICATIONS: Our consideration of health care and emphasis on care networks draw attention to the importance of communication and need for collaboration within care networks as key avenues for improving care for this and other frail populations.

Linking Formal Child Care Characteristics to Children's Socioemotional Well-Being: A Comparative Perspective.

Most research on formal child care and children's outcomes has focused on single countries. We, however, contend that policy context may moderate the association between formal child care characteristics and children's socioemotional well-being. We examined this by comparing the Netherlands, Finland and the UK; three countries that differ regarding family policies. Of these three countries, Finland was recently ranked highest (ranked 1st) with regards to quality of child care in a recent analysis by the Economist, followed by the UK (ranked 3rd) and then the Netherlands (ranked 7th). We hypothesized that children who attend child-care settings in countries with higher-quality formal child-care provision would generally show better socioemotional outcomes. Data from the comparative 'Families 24/7' survey were used, including 990 parents with children aged 0-12. We distinguished between two age groups in our analysis. Results indicated that, compared to the UK, longer hours in formal care were less beneficial in the Netherlands. Furthermore, spending time in formal care during nonstandard hours was more harmful for children in Finland compared to the UK. Lastly, receiving care from multiple caregivers was more disruptive for British children than for Dutch children. No differences were found between Finland and the Netherlands.

Maternal Employment, Community Contexts, and the Child-Care Arrangements of Diverse Groups.

Integrating family and child data from the Early Childhood Longitudinal Study-Birth Cohort with contextual data from the Census, this study examined associations among maternal employment, aspects of communities related to child care supply and demand, and the early care and education arrangements of 4-year-olds in Mexican-origin, black, and white families. Children with employed mothers were more likely to be in informal care arrangements than in early childhood education, regardless of racial/ethnic background. For children in Mexican-origin families, selection into informal care over early childhood education was more likely in zip codes with greater demand for care as measured by higher female employment. Utilization of parent care versus early childhood education was also more likely for children in Mexican-origin and black families in zip codes with higher female employment. Constraints associated with maternal employment thus hindered children from enrolling in early childhood education, and community contexts posed challenges for some groups.

Child-Care Instability and Behavior Problems: Does Parenting Stress Mediate the Relationship?

Child care instability is associated with more behavior problems in young children, but the mechanisms of this relationship are not well understood. Theoretically, this relationship is likely to emerge, at least in part, because care instability leads to increased parenting stress. Moreover, low socioeconomic status and single-mother families may be more vulnerable to the effects of instability. This study tested these hypotheses using data from the Fragile Families and Child Wellbeing study (n=1,675) and structural equation modeling. Three types of child care instability were examined: long-term instability, multiplicity, and needing to use back-up arrangements. Overall, findings showed little evidence that parenting stress mediated the associations between care instability and child behavior problems among the full sample. Among single-mother and low-income families, however, needing to use back-up arrangements had small positive associations with parenting stress, which partially mediated the relationship between that type of care instability and child externalizing behavior problems.

Care arrangements for community-dwelling people with dementia in Germany as perceived by informal carers - a cross-sectional pilot survey in a provincial-rural setting.

The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home-based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carer's perspective. A self-administered questionnaire (D-IVA 'Instrument for Assessing Home-Based Care Arrangements for People with Dementia') was developed and distributed in a provincial-rural setting in Germany as a cross-sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open-ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care-dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers' perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia (P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D-IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D-IVA should consider applying complementing quantitative measures as well as qualitative methods.

Community-based family-style group homes for children orphaned by AIDS in rural China: an ethnographic investigation.

As the number of children orphaned by AIDS (Acquired Immunodeficiency Syndrome) has reached 17.3 million, most living in resource-poor settings, interest has grown in identifying and evaluating appropriate care arrangements for them. In this study, we describe the community-based family-style group homes ('group homes') in rural China. Guided by an ecological framework of children's wellbeing, we conducted a series of ethnographic observations, in-depth interviews and group discussions in the rural areas of Henan Province, which has been severely impacted by the AIDS endemic through commercial blood collection. Based on our observations and discussions, group homes appear to provide stable and safe living environments for children orphaned by AIDS. Adequate financial support from non-government organizations (NGOs) as well as the central and provincial governments has ensured a low child-caregiver ratio and attention to the basic needs of the children at group homes. The foster parents were selected from the local community and appear to have adequate qualifications and dedication. They receive a monthly stipend, periodical evaluation and parenting consultation from supporting NGOs. The foster parents and children in the group homes have formed strong bonds. Both children and foster parents reported positively on health and education. Characteristics of community-based group homes can be replicated in other care arrangements for AIDS orphans in resource-poor settings for the optimal health outcomes of those vulnerable children. We also call for capacity building for caregivers and communities to provide sustainable and supportive living environment for these children.

Transnational migration, changing care arrangements and left-behind children's responses in South-east Asia.

Recent increases in the volume of labour migration from South-east Asia - and in particular the feminisation of these movements - suggest that millions of children are growing up in transnational families, separated from their migrant parents. Drawing on both quantitative and qualitative data collected in Indonesia, the Philippines, Thailand and Vietnam, the study seeks to elucidate care arrangements for left-behind children and to understand the ways in which children respond to shifts in intimate family relations brought about by (re)configurations of their care. Our findings emphasise that children, through strategies of resistance, resilience and reworking, are conscious social actors and agents of their own development, albeit within constrained situations resulting from their parents' migration.

Does Child Care Quality Mediate Associations Between Type of Care and Development?

Studies document that, on average, children cared for in centers, as compared to homes, have higher cognitive test scores but worse socioemotional and health outcomes. The authors assessed whether the quality of care received explains these associations. They considered multiple domains of child development-cognitive, socioemotional, and health-and examined whether mediation is greater when quality measures are better aligned with outcome domains. Using the Early Childhood Longitudinal Study Birth Cohort, they found that children in centers have better cognitive skills and behavioral regulation than children in homes, but worse social competence and generally equivalent health (N = 1,550). They found little evidence that quality of child care, as measured by standard instruments (e.g., the Early Childhood Environment Rating Scale-Revised), accounts for associations between type of care and child developmental outcomes.