Longitudinal studies can provide insights into how family members negotiate the caring role and carer identity over time. The analyses of the longitudinal, qualitative interviews on ‘living well’ with dementia from the IDEAL cohort study aimed to identify the shifting, embedded narratives of family members of people with dementia as they negotiated the caring role and carer identity over time. Twenty semi-structured, qualitative interviews were conducted with family members of people with dementia and 14 were repeated one year later; these interviews were analysed using cross-sectional and longitudinal thematic and structural narrative analyses. Longitudinal, interrelated themes, including the care needs and decline of the person with dementia, relationship change and variable service support, framed the narrative types of family members. Six shifting narratives, apparent as dominant and secondary narrative types, characterized negotiating the caring role over time: absent/normalizing, active role adoption / carer identity, resistance, acceptance and resignation, hypervigilance/submergence and role entrapment, and foreshadowed future. The presence or absence of a carer identity was also evident from interviewees’ accounts, although, even where family members were overburdened by the caring role, they did not necessarily express a carer identity. Rather than considering transition into a carer identity, hearing different narratives within the caring role is important to understand how family members experience caring, whether they see themselves as ‘carers’, and when and how they need support. Timely and continued post-diagnostic support, where different caring narratives are recognized, is needed, as well as international initiatives for carer identification.

Extant literature shows that small conversations with strangers can help improve individuals’ wellbeing while reducing feelings of loneliness. Nevertheless, previous studies on talking to strangers tend to focus on young participants in controlled experimental settings, leaving a gap in understanding older adults’ experiences and their likelihood of adopting talking to strangers as part of their daily healthy ageing practices. Considering the problem of worsened social isolation and loneliness among older people during the Covid-19 pandemic, it is even more important to include them in the promotion of social inclusion through micro-conversations with strangers. To understand older adults’ attitudes and experiences of talking to strangers, this study interviewed 19 older people based on their trial of talking to strangers over a three-month period. Findings reveal that their willingness and confidence varied by age and gender, with retired individuals being more active in engaging with strangers. Time constraints and lack of self-efficacy were identified as barriers, particularly among those still working or with caregiving responsibilities. Rather than personal gains, the act of kindness towards others was emphasised as the key motive. These insights are valuable for policy makers and organisations supporting older people’s wellbeing, highlighting the potential for older individuals to serve as conversation initiators, promoting mutual kindness and wellbeing in communities.

Understanding how to improve the physical and cognitive accessibility of visitor economy businesses and organisations wanting to offer nature-based outdoor pursuits for people with dementia is key to supporting their inclusion and agency. The aim of this qualitative study was to understand the experiences, needs and preferences of people with dementia participating in nature-based outdoor pursuits in their leisure time. Semi-structured interviews were conducted with 15 people with dementia and 15 family members and subjected to thematic analysis. Four themes related to inclusion for people with dementia and their family members reflected diversity in individual needs and preferences for engaging with nature-based outdoor pursuits, their own adaptations to maintain access including accommodating risk, how cognitive and physical accessibility can be supported by businesses, and which practical and psychosocial barriers prevent inclusion. Learning from people with dementia and their family members has helped bridge the gap to their inclusion in nature-based outdoor pursuits. Their insights will inform the development of such pursuits by businesses and organisations as well as future work into risk decision-making.

There is a growing evidence base that identifying positive experiences in providing care can have a beneficial influence on carer wellbeing. However, there is a need to better understand what carers identify as the positive aspects of care-giving. The aim of this study is to explore the satisfying aspects of providing care to people with dementia. This study utilised Time 1 data from 1,277 carers of people in the mild-to-moderate stages of dementia taking part in the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort study. Responses from 900 carers who answered the open-ended question ‘What is your greatest satisfaction in caring for your relative/friend?’ were analysed using thematic analysis. From the responses, 839 carers detailed satisfactions. Eight themes were identified, pertaining to three groups of beneficiaries: carers, people with dementia and the dyad. Perceived benefits for carers included identifying aspects of personal growth, seeing glimpses of the person, feeling they were making a difference and doing their duty. For the person with dementia, these included retaining independence, receiving good quality care and being happy. Dyadic benefits concerned the continuation of the relationship between carer and person with dementia. The findings highlight the need to take a dyadic approach when conceptualising positive experiences in providing care. Further research is needed to understand the role these positive experiences play and to develop interventions. Professionals working with carers should identify and validate these experiences.

Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial ‘lockdown’ period in May and June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular ‘just checking’ phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to ‘live well’ with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively.

Short-term survival after paediatric cardiac surgery has improved significantly over the past 20 years and increasing attention is being given to measuring and reducing incidence of morbidities following surgery. How to best use routinely collected data to share morbidity information constitutes a challenge for clinical teams interested in analysing their outcomes for quality improvement. We aimed to develop a tool facilitating this process in the context of monitoring morbidities following paediatric cardiac surgery, as part of a prospective multi-centre research study in the United Kingdom.

We developed a prototype software tool to analyse and present data about morbidities associated with cardiac surgery in children. We used an iterative process, involving engagement with potential users, tool design and implementation, and feedback collection. Graphical data displays were based on the use of icons and graphs designed in collaboration with clinicians.

Our tool enables automatic creation of graphical summaries, displayed as a Microsoft PowerPoint presentation, from a spreadsheet containing patient-level data about specified cardiac surgery morbidities. Data summaries include numbers/percentages of cases with morbidities reported, co-occurrences of different morbidities, and time series of each complication over a time window.

Our work was characterised by a very high level of interaction with potential users of the tool, enabling us to promptly account for feedback and suggestions from clinicians and data managers. The United Kingdom centres involved in the project received the tool positively, and several expressed their interest in using it as part of their routine practice.

Current policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1–0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.

The relationship between living alone, loneliness and social isolation, and how they are associated with health remain contentious. We sought to explore typologies based on shared experiences of loneliness, social isolation and living alone using Latent Class Analysis and determine how these groups may differ in terms of their physical and mental health. We used Wave 7 of the English Longitudinal Study of Ageing (N = 7,032; mean age = 67.3) and responses to the University of California, Los Angeles (UCLA) loneliness scale, household composition, participation in social/societal activities plus frequency of contact with friends, family and relatives for the Latent Class Analysis. The optimal number of groups was identified using model-fit criteria. The socio-demographic characteristics of groups and health outcomes were explored using descriptive statistics and logistic regression. We identified a six-cluster typology: Group 1, no loneliness or isolation; Group 2, moderate loneliness; Group 3, living alone; Group 4, moderate isolation; Group 5, moderate loneliness, living alone; and Group 6, high loneliness, moderate isolation (with high likelihood of living alone). Groups experiencing loneliness and/or isolation were more likely to report poorer physical and mental health even after adjusting for socio-demographic confounders, this was particularly notable for Group 6. Our results indicate that different typologies of living alone, loneliness and isolation can be identified using data-driven techniques, and can be differentiated by the number and severity of issues they experience.

This article tests the fit of a social support network typology developed for collectivist cultures to six migrant populations living in England and Wales. We examine the predictive utility of the typology to identify networks most vulnerable to poor quality of life and loneliness. Variables representing network size, and the proportion of the network classified by gender, age, kin and proximity, were used in confirmatory and exploratory latent profile analysis to fit models to the data (N = 815; Black African, Black Caribbean, Indian, Pakistani, Bangladeshi and Chinese). Multinomial logistic regression examined associations between demographic variables and network types. Linear regression examined associations between network types and wellbeing outcomes. A four-profile model was selected. Multigenerational Household: Younger Family networks were most robust with lowest levels of loneliness and greatest quality of life. Restricted Non-kin networks were least robust. Multigenerational Household: Younger Family networks were most prevalent for all but the Black Caribbean migrants. The typology is able to differentiate between networks with multigenerational households and can help identify vulnerable networks. There are implications for forecasting formal services and variation in networks between cultures. The use of a culturally appropriate typology could impact on the credibility of gerontological research.

Objectives: The majority of patients in India access private sector providers for curative medical services. However, there is scanty information on the cost of treatment of critically ill patients in this setting. The study evaluates the cost and extent of financial subsidy required for patients admitted to an intensive care unit (ICU) in India.

Methods: Data on direct medical, direct nonmedical, and indirect cost were prospectively collected from critically ill patients admitted to a tertiary teaching hospital in India. Willingness-to-pay (WTP) amount was obtained from the next-of-kin following admission and the actual cost paid by the family at discharge was recorded.

Results: The main diagnoses (n = 499) were infection (26 percent) and poisoning (21 percent). The mean APACHE-II score was 13.9 (95 percent confidence interval [CI], 13.3–14.5); 86 percent were ventilated. ICU stay was 7.8 days (95 percent CI, 7.3–8.3). Hospital mortality was 27.9 percent. Direct medical cost accounted for 77 percent (US$ 2164) of the total treatment cost (US$ 2818). Indirect cost and direct nonmedical cost contributed to 19 percent (US$ 547.5) and 4 percent (US$ 106.5), respectively. Average total and daily ICU cost were US$ 1,897 and US$ 255, respectively. Although the family's WTP was 53 percent (US$ 1146; 95 percent CI, 1090–1204) of direct medical cost, their final contribution was 67.7 percent (US$ 1465; 95 percent CI, 1327–1604).

Conclusions: The cost of an ICU admission in our setting is US$ 2818. Although the family's contribution to expenses exceeded their initial WTP, a substantial subsidy (33 percent) is still required. Alternate financing strategies for the poor and optimization of ICU resources are urgently required.

In recent years, there has been an increasing interest in researching ageing ethnic minority populations in the West. However, older people from such minority communities have received comparatively little attention in wide-ranging discussions on appropriate research methodologies. By a process of critically reflecting on our experiences of undertaking fieldwork for our Economic and Social Research Council New Dynamics of Ageing study of ‘Families and Caring in South Asian Communities', this paper maps out the key methodological and ethical challenges we faced and, in the process, highlights the importance of developing socially appropriate research methodologies and ethical frameworks for research with such populations. With a reflexive approach, we specifically explore the significance of gender, age, time and space to the fieldwork processes and the ‘field’ relationships formed at various stages of the research process. In particular, we explore three key emergent issues which conflicted with our formal research protocols and presented particular challenges for us and our older Pakistani Muslim participants: (a) structuring of time in daily life; (b) gendered use of public and private spaces; and (c) orality of informal social contexts and relationships. Using illustrations from our fieldwork which reveal the particular significance of these issues to our fieldwork experiences and performativities of public/private identities, we highlight important tensions between formalised ethical and methodological dimensions of conducting funded research and the realities of being in ‘the field’. We conclude the paper by emphasising the need to explore further not only the ways in which researchers can adopt more socially and culturally sensitive data collection processes and methodologies at the micro level of their interactions with research participants, but also contextualising the particular challenges experienced by researchers and their participants in terms of the wider research frameworks and agendas as well as the broader social contexts within which they live and work.