As the population ages and the prevalence of dementia increases, caring for a relative living at home with dementia has become a reality for many families worldwide. Studies have shown that families are confronted with diverse difficulties as they try to address the challenges involved in providing care. By understanding how they manage daily life, formal service providers become better equipped to meet the diverse needs of these families. Learning how families live with memory loss and cognitive changes calls for an understanding of the shared context surrounding the person, including the collective of people, and their connections. With the research method of ethnographic case study, we followed eight families living at home with dementia for two years. All participants had been placed on a waiting list for a specialised dementia day care programme. The analysis presented here is based on three cases which reflect widely different experiences and situations. We describe how these families dealt with their daily living at home, if and how they made use of the formal support available and what approaches they found helpful for improving their lives. The results show how the persons living with dementia and their care-givers drew on the collective of their backgrounds, surroundings and available support. With diverse arrangements, families tried to find ways to make their daily lives work out. But constant re-arrangement was necessary. This knowledge could be a central learning point for formal service to build on. While systematic or routine procedures in service provision can be helpful, time and space must be provided for professionals to understand families' different practices, so that they can provide family-centred support.

Care-giving to older adults with disabilities could lead to relatively high levels of care-giving burden and low levels of life satisfaction among their family care-givers. However, there is a lack of research examining the role of care-giver wisdom in the above stress process model. This study examined the moderator role of wisdom in the relationship between care-giver burden and life satisfaction among family care-givers of disabled older adults in urban China. A multi-stage quota sampling method was used to recruit 789 disabled older adult–family care-giver dyads in Shanghai in 2013. The average age of older adults and their family care-givers was 84 and 63 years old, respectively. Multiple-group path analysis was conducted to examine the proposed hypotheses. The results showed that care-giver wisdom played a moderator role in the association between care-giver burden and life satisfaction. Care-giver burden was found to only negatively affect life satisfaction among care-givers with relatively low wisdom levels. The findings highlight the influences of care-giver wisdom on the relationship between burden and life satisfaction in Chinese contexts. The concept of wisdom should be used in needs assessment among family care-givers of older adults with disabilities. Future social interventions should focus on promoting care-givers' capacities of reflective thinking, their understandings of reality and their feelings of compassion.

Little is known about the experiences of informal family care-giving for persons with ADRD in the context of Arab and Muslim communities. This paper offers fresh insight into the less-studied private sphere of the home, showing how families respond to the onset and long-term care of persons with Alzheimer's disease and related dementias (ADRD). It considers the extent to which sociocultural and religious influences are appropriated by family care-givers as coping mechanisms and motivators for care. Drawing upon interviews with 32 family care-givers for older persons living with ADRD in Qatar, findings reveal the intersectionality of the care-giving experience with various sociocultural, religious and emotional influences through seven emergent themes: (a) reasons and motivations for care-giving; (b) role of the extended family; (c) socio-demographic attributes of care-givers, their allocated responsibilities and how these intersect; (d) socio-religious attitudes towards care-giving of older persons; (e) social stigma; (f) personal knowledge of ADRD; and (g) coping mechanisms. The paper is concluded with key implications of these sociocultural insights for theory, policy and practice, which could inform Qatar's health and social care provision sector as well as other Arab and Muslim communities that share similar cultural and religious belief systems.

It is estimated that a third of people in the United Kingdom with signs of dementia are living without a formal diagnosis. In Wales, the proportion is nearly half. Some explanations for the gap between prevalence of dementia and number of diagnoses include living with a long-term partner/spouse and systemic barriers to diagnosis. This study recruited participants from the Cognitive Function and Ageing Studies-Wales (CFAS-Wales) cohort, randomly selected from people aged over 65 living in two areas of Wales, who met study criteria for a diagnosis of dementia and did not have a record of a formal diagnosis in general practice records. We aimed to understand more about the contexts and circumstances of people who live with and cope with cognitive difficulties without having a formal diagnosis of dementia. We conducted qualitative interviews with six participants and their spouses, and additionally with four family members of three invited people who were unable to take part. Themes were generated using thematic analysis. We present the argument that there is an adaptive response to low service levels and a complex interaction between the expectations of levels of service, perceptions of the legitimacy of cognitive problems and the right to make demands on services. This paper concludes that more could be done to address barriers to diagnosis and treatment services for those living with symptoms of dementia, but that the value placed on diagnosis by some individuals might be lower than anticipated by government policy.

As the ageing population in China continues to grow, more people will be living with long-term health conditions and require support from family care-givers. This scoping review therefore aims to explore sources of stress and coping mechanisms adopted by care-givers of older relatives living with long-term conditions in mainland China. Literature searches were conducted in English (CINAHL, EMBASE, MEDLINE, PsycINFO and SCOPUS) and Chinese (CNKI, WANFANG DATA, CQVIP and CBM) databases between October and November 2019. The searches focused on the stressors and coping mechanisms utilised by family care-givers residing in the community. Narrative synthesis was used to identify themes within the data. Forty-six papers were included: 20 papers from English and 26 from Chinese databases. Six themes captured stressors: care-giving time (N = 22), financial resources (N = 17), role and personal strains (N = 42), preparedness (N = 4), social roles (N = 10) and lack of adequate formal support (N = 22); and one theme captured coping (N = 14). Unmet needs of care-givers of older relatives in mainland China were found to be extensive. Only a few studies had attempted to explore the causal link between stressors, coping and the influence of culture. Findings underscore the significance of adequately capturing intricacies around care-givers’ unmet needs, rather than generalising on the basis of culture. Qualitative studies are critical to providing a better understanding of the relationship between stressors, coping and resources afforded to care-givers by their cultural environment. Having such understanding is crucial to inform the development of competent care, which promotes self-efficacy and self-actualisation in care-givers in mainland China.

In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the ‘client’. Rather than focusing on the HCWs’ work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered ‘character’ and ‘innate’ caring abilities to be more important than those derived from training. The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.

Community health-care services for older, home-dwelling persons with dementia tend to be underutilised. Family care-givers provide substantial care, and they often arrange for and co-ordinate health-care services on behalf of persons with dementia. The aim of this study was to examine family care-givers’ knowledge of unused services and their self-reported reasons for non-use of such services. We gathered cross-sectional survey data from 430 family care-givers of older persons with dementia in Northern Norway. Multinomial logistic regression analysis was used to identify predictors of family care-givers’ knowledge of unused services. An open-ended question regarding reasons for non-use of services was analysed by thematic text analysis. Characteristics of family care-givers (e.g. education level) and factors related to the care-giving circumstances (e.g. negative impact of care-giving) predicted family care-givers’ knowledge of unused services. Reasons for non-use of services were multifaceted and complex, and were related to attributes of the person with dementia and/or the family care-giver (e.g. reluctance to use services) and/or the health-care services (e.g. low quality). Although services were unused, several family care-givers indicated substantial needs for the services. Strategies aimed at addressing the non-use of services should emphasise individuals’ and families’ needs and the adaptation of information about available services and their benefits for both care recipients and family care-givers. A relationship-centred care approach is thus recommended in dementia care.

Family care-givers are increasingly expected to find, understand and use information to meet the complex needs of older adults in their care. A significant number of studies, however, continue to report that care-givers’ information needs are unmet. Following Arksey and O'Malley's scoping review framework, I examined 72 articles for the range and extent of available research on the information work done by family care-givers of community-dwelling older adults living with dementia. To untangle the complex relationship between information and care, this scoping review maps out (a) the ways scholarly literature conceptualises the informational components of family care-givers’ work and (b) the degree to which scholarly research acknowledges these components as work. An institutional ethnography inflection enhanced the scoping review framework, enabling the privileging of lived experiences, questioning of assumptions of language used, attending to authors’ positioning and highlighting care-givers’ information work made invisible throughout the processes of academic research.

In the United Kingdom (UK), an ageing population met with the reduction of social care funding has led to reduced support for older people marked with an increased demand on family care-givers. Assistive telecare (AT) devices are viewed as an innovative and effective way to support older people. However, there is limited research which has explored adoption of AT from the perspectives of family care-givers. In-depth, semi-structured interviews were conducted with 14 family care-givers of patients who used the Assistive Telehealth and Telecare service in Cambridgeshire, UK. Family care-givers were either the spouse (N = 8) or child of the patient (N = 6). The patients' age ranged from 75 to 98, and either received a telecare standalone device or connected service. Framework analysis was used to analyse the transcripts. This study revealed that family care-givers play a crucial role in supporting the patient's decision to adopt and engage with AT devices. Knowledge and awareness, perceived responsibility, usefulness and usability, alongside functionality of the equipment, were influential factors in the decision-making process. AT devices were viewed positively, considered easy to use, useful and functional, with reassurance of the patient's safety being a core reason for adoption. Efforts to increase adoption and engagement should adapt recruitment strategies and service pathways to support both the patient and their care-giver.

This qualitative study aimed to gain insight into the experience of hospitalisation from the perspectives of the older person with dementia, their family care-giver and other patients sharing the ward (co-patients). Non-participant observation of care on 11 acute hospital wards was supplemented by 39 semi-structured interviews with 35 family care-givers and four co-patients following discharge. Constant comparative analysis produced the core problem facing all those involved: disruption from normal routine meaning that the experience of hospitalisation was disrupted by the presence and behaviour of the person with dementia. Disruption adversely affected the person with dementia, triggering constructive, disengaged, distressed and neutral behaviours. Using Kitwood's model of person-centred care, these behaviours were interpreted as attempts by the person with dementia at gaining a sense of control over the unfamiliar environment and experience. Family care-givers' lives and experiences both inside and outside the hospital were disrupted by the hospitalisation. They too attempted to gain a sense of control over the experience and to give a sense of control to the patient, co-patients and staff. Co-patients experienced disruption from sharing space with the person with dementia and were left feeling vulnerable and sometimes afraid. They too attempted to gain a sense of control over their situation and give some control by helping the person with dementia, the family care-giver and the staff.