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.

Stigma and discrimination in relation to dementia has a range of implications for people living with dementia and their families worldwide, including help-seeking, quality of life, social rejection and isolation. Few studies consider the perceptions and stigma towards dementia from multiple perspectives, such as people living with dementia, carers, general public and health-care workers. South Africa has limited evidence on the stigmatisation of people living with dementia, with responses to people living with dementia being driven by poor understanding of the condition, cultural beliefs about causes and social interaction problems associated with memory and cognitive impairment. This study explored the experiences of stigma among people living with dementia and their carers through understanding their own knowledge, attitudes and beliefs as well as those of the public and health-care workers. Qualitative data (N = 52) were collected across two provinces and in four languages (English, Afrikaans, Sesotho and isiZulu), with semi-structured interviews and focus groups with the following stakeholder groups: people living with dementia and their carers, the general public and health-care workers. Inductive thematic analysis generated themes across stakeholder groups. The study shows that people living with dementia and carers experienced high levels of internalised stigma, related to negative public attitudes, which were associated with high levels of isolation, health system unpreparedness and limited access to support. The study contributes to the evidence base needed in South Africa but also extends its relevance by contributing to a growing global evidence base on stigma and dementia in low- and middle-income contexts.

Age-related changes shape social connectedness, isolation and loneliness among older adults. Ageing often accompanies decisions about ageing in place or moving (i.e. senior living facility). Scant research compares these two living arrangements and even sparser research focuses on older women. This study, thus, poses the following questions: How do older women (aged 75+ years) experience social connectedness and perceived isolation? How does this experience vary between older women living alone in private homes and those living in assisted living facilities? Data include semi-structured interviews with women aged 75+ years who live alone in a private home or in an assisted living facility (N = 16). Findings revealed differences in three aspects of social connectedness: interactions, relationships and belonging. Private home participants' interactions underscored intentionality, with minimal investment in forging new or deeper relationships and an emphasis on belonging to the world through awareness, contribution and cognitive ability. The experiences of participants living in assisted living were characterised by availability of interactions and casual relationships. They emphasised belonging to the facility community, while positioning themselves between the status of resident and staff. Surprisingly, most participants in both groups did not express feelings of perceived isolation. Both had adapted their social connectedness expectations to reflect their current situation.

Over the past 40 years, positive ageing discourses that speak to an expectation of continued productivity have gained prominence within research and policy. Such discourses have been critiqued as placing disproportionate value on the extension of older adults' working lives, while obscuring other valuable forms of work performed by older adults. Despite the emergence of theoretical conversations about the expansion of conceptions of work, few studies have adopted an explicit focus on the work performed by older adults within their neighbourhoods. Informed by conceptions of work positioned at the intersection of critical gerontology and critical feminism, we drew upon qualitative data from a larger ethnographic study, generated from 17 participants aged 65 and older, to examine: (a) the various forms and contributions of unpaid work that older adults carry out at the neighbourhood level, and (b) the ways in which older adults' representations of this work relate to dominant notions of productivity. Specifically, each participant engaged in three types of qualitative interviews, including additional spatial and visual data generation: (a) completing a narrative interview; (b) carrying a small Global Positioning System (GPS) device to automatically log locations, completing an activity diary and a follow-up interview; and (c) participating in a go-along interview or a photo elicitation interview. Our findings highlight a range of unpaid work performed by participants in their neighbourhood, including formal volunteering, informal caring and informal civic participation. Although these forms of work were, at times, discussed by participants as enabling social inclusion, significant tensions arose from the general lack of discursive and social value assigned to them. In particular, participants described being subject to overwhelming expectations placed on older adults, and women in particular, to carry out this work, with little recognition or acknowledgement of their contributions to the neighbourhood. Taken together, our findings suggest the need not only to diversify understandings of the forms of work perceived as aligning with productive contributions to society in older age, but also to attend to the invisible work performed by older adults within their neighbourhoods. Additionally, we propose a variety of ways organisations and communities that benefit from older adults' unpaid labour may enhance accessibility, thereby reducing the work done by older adults to negotiate tensions between ableist expectations for productivity and their ageing bodies.

Given inevitable age-related decreases in physical or mental capacity, studies on health-related behaviour (HRB) clustering in older people provide an opportunity to reduce health-care costs and promote healthy ageing. This study explores the clustering of HRBs and transition probabilities of cluster memberships over time, and compares sociodemographic characteristics of these clusters among Chinese and Japanese middle-aged and older adults. Using the China Health and Retirement Longitudinal Study (CHARLS) from 2011 to 2015 (N = 19614) and the Japanese Study of Ageing and Retirement (JSTAR) from 2007 to 2011 (N = 7,080), Latent Transition Analysis was applied to investigate the clustering and change in clustering memberships of smoking, alcohol consumption, physical activity and body mass index. Multivariate logistic regression was used to explore the sociodemographic characteristics of these longitudinal HRB cluster members. We identified four common clusters in CHARLS and JSTAR: ‘smoking’, ‘overweight or obese’, ‘healthy lifestyle’ and ‘current smoking with drinking’, and an additional cluster named ‘ex-smoking with drinking’ in JSTAR. Although HRB cluster members were largely stable in both cohorts, participants in China tended to move towards an unhealthy lifestyle, while participants in Japan did the opposite. We also found that participants who smoked and drank were more likely to be male, younger, less educated and unmarried in both cohorts, but the overweight or obese participants were female, urban and higher income in CHARLS but not JSTAR. Our study not only contributes to the knowledge of longitudinal changes in health-related behavioural clustering patterns in an Asian elderly population, but may also facilitate the design of targeted multi-behavioural interventions to promote healthy lifestyles among older people in both countries.

Risk is an innate and integral part of everyday life and is present in simple, everyday occupations and complex actions. Age-related stereotypes can mean older people have little opportunity to engage in activities that present some degree of risk. The present study explores the discourse around risk and older people in the context of the COVID-19 pandemic. We investigated news media as a reflection of the dominant public discourse around older people's behaviour to identify how risk is represented in relation to occupational engagement. Texts relating to older people and COVID-19 were sourced from the West Australian newspaper for a period of two months. Seventy texts were subject to Foucauldian discourse analysis to identify subject positions, location of risk and discursive features. Findings indicate that older people were segregated from the rest of society, with their behaviours framed in mostly negative ways. We identified three areas of discourse: vulnerable, and in need of protection; recalcitrant, and in need of management; and resilient, deserving of respect. While we recognise competing representations, implicit within the dominant discourse was the premise that older people were not capable of mediating risks and required ‘management’. These findings highlight the role of surveillance in restricting occupational engagement for older people and carry implications for older people, the public and therapists.

Loneliness is linked to many negative health outcomes and places strain on the economy and the National Health Service in the United Kingdom. To combat these issues, the determinants of loneliness need to be fully understood. Although friendships have been shown to be particularly important in relation to loneliness in older adults, this association has thus far not been explored more closely. Our exploratory study examines the relationship between number of friends and loneliness, depression, anxiety and stress in older adults. Data were obtained from 335 older adults via completion of an online survey. Measures included loneliness (UCLA Loneliness Scale version 3), depression, anxiety and stress (Depression Anxiety Stress Scales DASS-21). Participants also reported their number of close friends. Regression analyses revealed an inverse curvilinear relationship between number of friends and each of the measures tested. Breakpoint analyses demonstrated a threshold for the effect of number of friends on each of the measures (loneliness = 4, depression = 2, anxiety = 3, stress = 2). The results suggest that there is a limit to the benefit of increasing the number of friends in older adults for each of these measures. The elucidation of these optimal thresholds can inform the practice of those involved in loneliness interventions for older adults. These interventions can become more targeted; focusing on either establishing four close friendships, increasing the emotional closeness of existing friendships or concentrating resources on other determinants of loneliness in this population.

Citizenship and dementia studies have, during the last 15 years, grown into a substantial body of research recognising the experiences and agentic powers of people living with dementia. This article aims to contribute to and extend this research field. We undertake the aim through a feminist posthumanist non-representational analysis of a diary written by a man with Alzheimer's disease to explore the diary's potential to enact citizenship. The first section of the article examines current approaches to democracy, citizenship and dementia, and advances the concept intra-active citizenship, an approach that extends the individual and understands citizenship as enacted in and through entanglements of human–more-than-human agents. The second section is a theory-informed analysis of the diary, in which events, relations, doings and affective resonances constitute the analytical categories. The third section discusses whether the diary and the writing of it might enact citizenship, and if so, what kind of citizenship. The article concludes with a reflection on how our posthumanist, non-representational approach might pave a new path for theorising and, hence, contribute to new understandings of dementia and citizenship.

There is evidence that perceived health status is relevant for older adults' wellbeing, and at the same time perceived health status can be influenced by self-perceptions of ageing. There is a lack of studies on the relationship between these variables. The aim of this study was to explore attitudes towards ageing and self-perceptions of ageing among Spanish middle-aged and older people, and to identify possible mediators in the relationship between self-perceptions of ageing on perceived health status. The sample comprised 1,124 individuals from 50 to 98 years old (mean = 64.84, standard deviation = 10.12) from the Ageing in Spain Longitudinal Study database, Pilot Survey (ELES-PS). Almost 70 per cent of the participants stated that old age begins at a specific chronological age and half of them considered that society treats older people with indifference. Self-perceptions of ageing, physical activity, cognitive functioning and age were significant predictors, and together these variables explained 15.9 per cent in the variance of perceived health status. The multiple mediation analysis revealed that self-perceptions of ageing predicted cognitive functioning (B = 0.848, p < 0.01) and physical activity (B = 2.9046, p < 0.001), and mediated the association between self-perceptions of ageing and perceived health status (B = 0.1144, standard error = 0.0147, p < 0.01). Results from this study highlight the importance of perceptions and attitudes towards ageing for older adults' health and wellbeing, thus this study contributes to a better understanding of how these variables are related. In this sense, results from this study can be useful for designing interventions for fostering wellbeing. Addressing negative self-perceptions of ageing and negative attitudes towards ageing can be particularly useful because they are associated with more pessimistic expectancies about the ageing process.

Driving is the preferred mode of transport for many older drivers, providing mobility to maintain independence and quality of life. The loss of driving privilege has negative psychosocial consequences, including depression. Early discussions and planning for driving retirement are therefore essential. Driving retirement, however, is typically a taboo topic for older drivers and their support networks. To understand why discussions and planning about driving retirement are avoided, 43 semi-structured interviews were conducted with older drivers in New South Wales, Australia. Drawing on Löckenhoff's ageing and decision-making framework, thematic analysis of transcripts offers insights into why discussions and planning for driving retirement are avoided or facilitated. The findings reveal most older drivers had not discussed or planned for driving retirement. Barriers to discussing and planning for driving retirement included: perceptions of loss, change, death and denial. Facilitators to discussing or planning for driving retirement included: declining health and driving confidence, medical advice, age or car accident. Driving retirement in car-dependent societies is a major life event, symbolising an end-of-life stage for many older people. This paper calls for strategies to encourage early and regular discussions about driving retirement with older drivers. To support older drivers’ transition to driving retirement, an understanding of the value and meaning placed on driving in the context of the individuals' identity and lifestyle is recommended.

Evidence on post-diagnostic support for people with young onset dementia is scarce. Previous studies have employed a problem-focused approach; however, evidence on ‘what works’ in real-life practice is essential to develop recommendations for service design and delivery. This study aimed to provide insight into ‘what works’ from the perspectives of people with young onset dementia and their supporters. We gathered free-text responses on positive service experiences via a UK cross-sectional survey. Inductive thematic analysis was used to identify the objectives of positive services and the needs these met. Follow-up interviews enabled in-depth insights from people with diverse diagnoses, ages and social situations. These were analysed using a template drawn from the survey. The 233 survey respondents gave 856 examples of positive support. Analysis of 24 follow-up interviews led to 16 themes clustered under three superordinate themes: ‘maintaining autonomy’, ‘being myself’ and ‘togetherness’. We found that positive services address the disruptions to sense of agency, selfhood and meaningful relationships that are experienced by those with young onset dementia. The study provides an in-depth understanding of the needs met by positive services for younger people with dementia. Our nuanced findings on good practice can inform age-specific guidelines for young onset dementia and indicate how personalisation can work in practice to help people with young onset dementia to maintain identity, autonomy and connections.

Despite a large body of research on the effects of widowhood on health, little is known about whether spousal loss is related to functional impairment in widowed persons. This study examines the trajectories of functional impairment (sensory and masticatory functions) before and after spousal loss. This study also investigates whether the temporal changes in functional impairment of widowed people are gendered. Using data from the Korean Longitudinal Study of Ageing over seven waves (42,967 person-observations), this study estimated fixed effects regression models to account for unobserved individual-level heterogeneity. Gender-stratified fixed effects regression models were used to determine whether changes in functional impairment associated with spousal loss differ by gender. The results of this study indicated that the vision of widowed people began to decrease within the first year following spousal loss and persisted through the fourth and subsequent years. By contrast, mastication deterioration occurred only among widowers. Masticatory impairment began during the first year of spousal loss and lasted the entire survey period. No statistically significant reduction in hearing loss was found for both widowers and widows. The results of this study suggest that spousal loss has a long-term effect on functional impairment, particularly in vision and masticatory functions. This study also documents gender heterogeneity in the trajectories of functional impairment before and after spousal loss. Vision impairment was found to be universal among widowers and widows, whereas masticatory impairment was significant only among widows. To address the physical and psychological vulnerability of widowed people, policies should be developed early in the process of adjusting to widowhood.

Recent public and policy interventions aim to recognise formally the contributions of family care-givers to long-term residential care in Canada, with some arguing family carers are more than visitors and should be recognised as essential care-givers. These developments call for reconsidering how family care roles are understood and operationalised. Drawing on ethnographic research conducted in three care homes in Ontario, Canada, we present an in-depth feminist rhetorical analysis of the narrated lives and work practices of 12 unpaid family carers. Specifically, we explore how unpaid family carers themselves draw on broader discursive ‘ruling metaphors’ to interpret their roles and activities (e.g. as essential care-givers, visitors, team members), and how these metaphors invoke, organise and/or give rise to particular practices, responsibilities and relations. We contrast the stories of a family member who positioned herself as an essential care-giver and expressed a more onerous sense of individual responsibility with the stories of people who enjoyed the pleasures of visiting, who contributed as team members in ways that went beyond caring for their own relatives' care needs, and who embraced the possibilities that came with volunteering and with being able to influence change. Our analysis situates and contextualises participants' stories of their involvement and unpaid work in relation to their everyday material conditions and circumstances. We elaborate how different ways of understanding caring roles shape the nature of carers' unpaid work, as well as their options to share responsibility or set limits on that work. We also raise questions about the organisational conditions needed to help enact care as a shared collective responsibility.

Suicide in later life is a pressing public health concern, which has likely been exacerbated by the COVID-19 pandemic. Many older adults who need mental health treatment do not have access to necessary services and training for mental health providers to support older adults experiencing suicidality is limited. One solution is developing interventions based in a public health approach to suicide prevention, whereby natural helpers who provide community services are mobilised to respond to older persons-at-risk. Home-delivered meal (HDM) services, for example, are one effective means to reach older adults who are isolated due to being homebound and may be instrumental in preventing suicide. This study examined the experiences of 20 HDM volunteers who received Applied Suicide Intervention Skills Training (ASIST), an evidence-based suicide intervention programme. Phenomenological analysis yielded findings centred on three areas demonstrating the impact of the ASIST training on HDM volunteers: putting asist skills into practice; response to ASIST skills; and role transformation. Implications for integrating suicide prevention efforts with HDM services and directions for future research are discussed.

Reflecting on sustained calls for patient-centredness and culture change in long-term care, we evaluated the relative importance of personal and organisational predictors of palliative care, hypothesising the former as weaker predictors than the latter. Health-care employees (N = 184) from four Canadian long-term care homes completed a survey of person-centred care, self-efficacy, employee wellbeing and occupational characteristics. Using backward stepwise regression models, we examined the relative contributions of these variables to person-centred palliative care. Specifically, blocks of variables representing personal, organisational and occupational characteristics; palliative care self-efficacy; and employee wellbeing were simultaneously regressed on variables representing aspects of person-centred care. The change in R2 associated with the removal of each block was examined to determine each block's overall contribution to the model. We found that occupational characteristics (involvement in care planning), employee wellbeing (compassion satisfaction) and self-efficacy were reliably associated with person-centred palliative care (p < 0.05). Facility size was not associated, and facility profit status was less consistently associated. Demographic characteristics (gender, work experience, education level) and some aspects of employee wellbeing (burnout, secondary trauma) were also not reliably associated. Overall, these results raise the possibility that humanistic care is less related to intrinsic characteristics of employees, and more related to workplace factors, or to personal qualities that can be cultivated in the workplace, including meaningful role engagement, compassion and self-efficacy.

How to meet the demands of long-term care is a pressing issue in ageing societies. In most countries, care systems depend on the capability and willingness of family members to fill the gap between existing needs and formal service provision. Understanding the motivations of adult children to engage in parent care is, therefore, of central importance. The existing research literature offers different explanations, and here we concentrate on two key perspectives: normative and affectual commitments. Based on longitudinal data from two waves of the Norwegian Life Course, Ageing and Generation Study (2007 and 2017), we investigate to what extent adult children's previous attitudes towards filial responsibility norms and their perceived quality of the relationship to parents (in 2007) are associated with subsequent care-giving to ageing mothers and fathers (in 2017). The analyses show no evidence of a correlation between support of general filial responsibility norms and provision of help and care 10 years later. Perceived quality of the relationship, on the other hand, is associated with subsequent help and care-giving. The patterns are similar for daughters and sons. We conclude that within the context of a comprehensive welfare state, like the Norwegian, care-giving seems to be more of an individual choice than a societal prescription.

Research concerning the reciprocal influence of relationships and dementia largely focuses on dyadic relationships despite evidence that whole families are affected. Furthermore, such research generally considers more common forms of dementia such as Alzheimer's disease. Behavioural variant fronto-temporal dementia (bvFTD) primarily although not exclusively affects people below the age of 65 and is distinctly different in its impact from more common forms of dementia, affecting social cognition and therefore relational functioning. We aimed to develop a detailed understanding of intergenerational family experiences of bvFTD over time. We adopted a social constructivist and pluralist approach, using Narrative Thematic Analysis and Grounded Theory. We interviewed seven families in their own homes, including the person with bvFTD, at up to three time-points every six to nine months from 2012 to 2014, resulting in 46 interviews with 19 family members. Three super-ordinate themes were identified: Theme 1: We before bvFTD: cohesive and connected – disconnected and distant; Theme 2: Challenges experienced by us; and Theme 3: Relational outcomes: a changing we – an entrenched we. Results emphasise bvFTD brought early and significant disruption to family relationships. The interplay of prior relational functioning, involving the nature of the relationship for family members, the specific impact of bvFTD on these relationships and family member's understanding of bvFTD was critical to how each family fared over the duration of the research, and the relational outcomes they experienced. These findings suggest health-care practice could enhance its support for families living with bvFTD, through the development of tailored, family-oriented approaches to assessment and practice. Such approaches are necessary to understand how families work together and identify interventions that address the family-specific challenges bvFTD brings. The provision of tailored, relational-focused and specialised information concerning the experience of living with bvFTD is needed to flexibly address families' needs and expectations.

The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE (Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life Under Physical Distancing on People with Dementia and Carers) component of the IDEAL (Improving the Experience of Dementia and Enhancing Active Life) cohort study, the overall aim of this subtle realist qualitative study was to explore the perspectives of people with dementia on living through the COVID-19 pandemic within the context of the ‘post-vaccine’ period and the national lockdowns in England and Wales; and to determine perceived challenges to and facilitators of ‘living well’ during the COVID-19 pandemic and beyond as restrictions were eased. In addition, the study findings are considered in relation to understandings of identity in dementia which the broader accounts of living through the pandemic have highlighted. Seven people with mild-to-moderate dementia were interviewed and themes were derived using framework analysis. Themes suggest interviewees' stoic acceptance of the pandemic and social restrictions but also fear of decline related to the temporality of their condition as well as loss of self-confidence to re-engage with the world. Interviewees managed threats to social identity by striving to maintain social and emotional connections, where the importance of a shared, social identity, particularly for people with young-onset dementia, was also apparent. Unlike in previous studies during the pandemic, the relevance of occupation for identity was observed, where maintaining previous or new activities or occupations was important to facilitate identity as well as to keep a sense of purpose. Therefore, as well as supporting people with dementia as the pandemic eases, future research into occupation and identity in dementia is of potential value.

South-East Asian refugees have lived in the United States of America for nearly four decades, with early refugee immigrants experiencing ageing and later life within the refugee context. As refugees age, health concerns of this older population grow, highlighting the need for ongoing assessment of refugee health and health-seeking behaviours. This study builds on previous literature that assessed the health and health-seeking patterns of South-East Asian refugees in the early years following resettlement, exploring how health and health-seeking is understood among older refugees 40 years after immigration. This paper includes a subset of 37 older refugees from a larger, community-based participatory, mixed-methods intergenerational study of Cambodian and Laotian refugee families conducted over four years (quantitative N = 433; qualitative N = 183). Thematic analysis of 34 semi-structured interviews with these older refugees in coastal Alabama revealed trends in health and health-seeking practices. Older refugees reported high rates of diabetes and hypertension within their generational cohort, and indicated a shift in health-seeking behaviours, whereby Western biomedicine is sought first for such chronic concerns, followed by traditional medicines for mild ailments such as headaches or colds. Older refugees underscored barriers of language, finances and transportation as limiting access to Western health care. Implications for engaging in community health practices and incorporating services to specifically meet the needs of the ageing refugee population are discussed.

Previous studies have found negative ageing narratives in the media during the COVID-19 pandemic. However, few have focused on compassionate ageism and how the news responded to the progression of the COVID-19 pandemic. We investigated (a) media themes of negative and compassionate ageism and (b) their relationships with COVID-19 parameters and the public health response. The sample included 1,197 articles relevant to COVID-19 and older people in Hong Kong published between January and December 2020. We used thematic analysis to identify themes from the news articles and structural equation modelling to explore these themes' relationship with the number of older people infected, effective reproduction number, number of COVID-19 deaths and public health response parallel in time. Pandemic-related variables were lagged for a day – the time needed to be reflected in the news. Two negative ageism themes portrayed older people as vulnerable to COVID-19 but counterproductive in combating the pandemic. Two compassionate ageism themes depicted older people as a homogenous group of passive assistance recipients. The theme blaming older people was associated with the number of confirmed infections (β = 0.418, p = 0.002) but vulnerability of older people was not associated with pandemic-related variables. The theme helping older people was negatively associated with the percentage of older people in confirmed infections (β = −0.155, p = 0.019). The theme resources available was negatively associated with confirmed infections (β = −0.342, p < 0.001) but positively associated with the Containment and Health Index (β = 0.217, p = 0.005). Findings suggested that negative and compassionate ageism were translated into narratives about older people in the media as the pandemic evolved but did not address the actual risk they faced. Media professionals should be aware of the potential negative and compassionate ageism prompted by the news agenda and promote adequate health behaviours and responses.