This exploratory qualitative study aimed to evidence how community-based gardening groups can be used to support the psychological, physical and social health of those living with dementia. The views of people living with dementia in the community, care partners and group leaders were sought to better understand the benefits gained from gardening groups, as well as the features of gardening groups that are cited as enabling positive outcomes. Going beyond the existing single-group studies in this area, this research aimed to identify common themes across multiple gardening groups. Semi-structured interviews were conducted with six group leaders, three people living with dementia and ten care partners from seven gardening groups, either in person or remotely. Thematic analysis of the interview transcripts highlighted broad enablers – ‘the garden setting’, ‘features of activities’ and ‘organisational components’ – that were cited as facilitating a range of positive wellbeing outcomes, creating an environment that provides ‘physical and cognitive benefits’, ‘affirmation of identity’, ‘social connection’ and ‘benefits for care partners and others’. The wide-ranging benefits and enablers cited by participants within this research support the use of gardening groups as community-based interventions to reinforce positive psychological, physical and social outcomes for people with dementia. Themes also provide a clear framework for the design, implementation and evaluation of future gardening groups.

The COVID-19 pandemic and ensuing restrictions/lockdowns have caused significant physical and psychological consequences for people with cognitive impairment who are heavily dependent on their care-givers. However, little is known about the impact on care-givers, the factors that exacerbate their situation and what supports they need. The aims of this paper are threefold: (a) to examine the impact of COVID-19 physical restrictions on both formal and informal care-givers of people with cognitive impairment; (b) to identify attributing factors influencing this impact; and (c) to recognise their support needs. Further, this paper informs future research, policy and practice. Guided by the Joanna Briggs Institute framework, a systematic review was conducted using a mixed-methods convergent integrated approach. Eight databases were searched using keywords related to COVID-19 restriction, dementia care-givers, impacts and care settings, followed by a manual search. The study was limited to primary research published in English between January 2020 and December 2021. Of the 840 records identified, 30 met the inclusion criteria. Service withdrawal and social distancing has effectively led to the reprivatisation of care to the family, particularly women. Care-givers experienced negative impacts including reduced psychological wellbeing and physical health, increased care burden and financial difficulties. A number of clinical attributes and socio-demographic factors influenced the COVID-19 impact on care-givers. Consequently, counselling services, assistance with care and financial support were identified as support needs. Implementation of new support and the strengthening of existing services are recommended to enhance resilience, build capacity to support care-givers in any given situation and mitigate the effects of future outbreaks.

Informal care-givers play an important role, with health-care systems relying on the billions of hours of care they provide. Care-givers experience high levels of psychological distress and isolation; however, the efficacy of what support is the best for care-givers is unclear. The primary aim of this systematic review is to determine the effect of group creative arts interventions on informal care-givers of adults. The secondary aim is to understand the impact of group type, the primary outcomes and how they are measured. Given the heterogeneous nature of the included studies, a narrative synthesis approach was taken. Database searches identified 2,587 studies, 25 of which met the full inclusion criteria. Studies included group creative arts interventions for either care-givers only (N = 8) or for care-giver/cared-for dyads (N = 17). The majority of the participants in the studies were older Caucasian females. Group creative arts interventions are beneficial for care-givers and for the person being cared for; however, benefits differ depending on whether the group is for care-givers only or for care-giver/cared-for dyads. Future research will benefit from care-givers being involved in the design of the creative arts intervention to provide input regarding group type and relevant outcome measures. Future research should consider targeting their intervention to care-givers with a low baseline score to increase the ability of the study to demonstrate a significant difference.

This study aimed to understand stigma in relation to people living with dementia in São Paulo, Brazil. A critical narrative inquiry methodology was used. Home-based semi-structured interviews were conducted between January and March 2020 with six people living with dementia and 15 family carers. Data analysis was conducted using inductive and deductive techniques. The latter was informed by Link and Phelan's sociological theory of stigma. We found that dementia was commonly viewed by people living with dementia as part of ageing and carers reported low levels of knowledge and awareness about the condition. To avoid negative reactions from people, people living with dementia managed the negative views of dementia by minimising and normalising the condition, by expressing their ability to live an active life, and by emphasising the positive impacts of dementia in their lives. Fear of negative reactions appeared to lead to a selective disclosure of their diagnosis. Among carers, stigmatising attitudes coincided with a strong willingness to provide good care, to protect the person cared for, as well as to understand and validate their own caring experiences, rather than to cause any harm. In doing so, however, carers ended up depersonalising and infantilising people living with dementia, underestimating their capacities, demanding ‘obedience’ and restricting the person's freedom. There is a need to increase awareness about dementia and to provide support and training on person-centred and ethical care for carers in Brazil.

The felt obligation to return a benefit, termed reciprocity, has been identified as motivating care exchanges between older adults and their younger family members. Within the context of large-scale emigration of young adults from the Indian state of Kerala, this study examines how left-behind older adults and their family care-givers recognise, interpret and give meaning to reciprocal exchanges, expectations and obligations in their care relationship. Employing a social exchange perspective, we qualitatively explore the norm of reciprocity through in-depth interviews of 48 participants (older adults and their care-givers) from emigrant households. Older adults and their care-givers identified reciprocal notions in their care exchange relationship that provided an interpretive framework for describing expectations, motivations, obligations and experiences across care-giving relationships. Spousal care-givers derived reciprocal motives and mutual care obligations through the institution of marriage. Adult children recognised filial duties and responsibilities and were in principle prepared to provide care to their parents. Reciprocating the support received and the likelihood of intergenerational transfers motivated care exchanges from adult children to their older parents. Daughters-in-law executed transferred filial roles from their emigrant husbands and bore a larger burden of care. Primary adult care-givers relied on the ‘demonstration effect’, hoping that children observe the care-giving process and emulate it later. Imbalances and non-reciprocity in the care exchange led to frustrations and threatened the care relationships.

Art programmes have been shown to contribute to the quality of life of people with dementia. To understand how people with dementia benefit from art programmes it is important to evaluate them. ‘Unforgettable’ is an interactive museum programme for people with dementia and their care-givers in the Netherlands. This study examined how it is experienced and appreciated by its users. It also investigated whether the user experience and appreciation are linked to their specific background characteristics. In a single-group design, we used a ‘take-home’ survey to collect the participants’ background characteristics and their experience and appreciation of the programme. A before and after intervention measurement took place, using a smiley face scale, to measure the change in mood of participants. Participants evaluated the programme very positively. Social interaction proved a key factor in their appreciation. The mood of the persons with dementia (N = 95) and care-givers (N = 104) improved after participation in the ‘Unforgettable’ programme. The results of this evaluation may contribute to the quality of art programmes in museums.

Older male care-givers play an increasingly important role in informal care-giving, yet they have received little attention in the literature. The aim of this study was to explore the impact of care-giving on the experience of spousal intimacy for older male care-givers. Twenty-four older male care-givers, drawn from a region of the United Kingdom, participated in one-to-one interviews about their care-giving role. Thematic analysis was used to analyse data, and the study was underpinned by theories of masculinity. Three main themes were identified: (a) ‘Impact of care-giving on the experience of sexual intimacy’; (b) ‘Impact of care-giving on the experience of emotional intimacy’; and (c) ‘Not up for discussion’. When sexual intimacy declined, some older male care-givers prioritised emotional intimacy; some struggled with the decline; and some were reluctant to discuss the issue. Additionally, some care-givers reported that they had not received support from external support providers for declining sexual or emotional intimacy. Intimacy has been highlighted as important for care-givers given its link with care-giver wellbeing and quality of life. Results of this study suggest that sexual and emotional intimacy was an issue for older male care-givers, and that this issue should be considered by external support providers as part of a holistic assessment of need in order to tailor effective support.

Dementia, a term that describes a variety of brain conditions marked by gradual, persistent and progressive cognitive decline, affects a significant proportion of older adults. Older adults with dementia are sometimes perceived less favourably than those without dementia. Furthermore, compared to persons without dementia, those with dementia are often perceived by others as having reduced personhood. This study was aimed at investigating whether differences in attitudes towards dementia and personhood perceptions vary as a function of age group, care-giver status, attitudes towards ageing, dementia knowledge, gender and education. In total 196 younger, middle-aged and older adults were recruited. Findings revealed that being a care-giver as well as having less ageist attitudes were predictive of being more comfortable around persons with dementia, having more knowledge about dementia and ascribing greater personhood to people with dementia. Those with more dementia knowledge (prior to the study) were less comfortable around people with dementia. Finally, when controlling this prior dementia knowledge, older adults were more comfortable around people with dementia compared to younger and middle-aged adults. Gender and education were not associated with any of the variables under study. Findings contribute to a better understanding of the role of age- and care-giver-related factors in the determination of attitudes towards dementia.

The ageing population of Turkey has brought later-life care into question. Family care remains most prevalent, but institutional, paid and professional care are increasing. Literature in Turkey has focused on the medical or social policy aspects but not care-givers’ experiences, nor how the care is performed. This study aims to illuminate care-givers’ experiences using qualitative methods, through in-depth interviews in Ankara with 19 care-givers providing home care for people aged 65 and over. Commonalities and differences were revealed among unpaid family care-givers, paid care-givers and professional care-givers. First, whether paid or unpaid, the bodily and emotional aspects of care work are intertwined. To cope with the ‘negativities’ involved in the work, nurses usually medicalised bodily tasks, unpaid care-givers cited traditional responsibilities and employed infantilisation, while paid care-givers mostly informalised the relationship, infantilised the person cared for and underlined their asexuality. Secondly, care work is gendered; silenced, invisible and ambivalent; related to intimacy with older bodies; and performed in the home space, which blurs the distinction between the private and public field for paid care. Finally, it involves emotional work regarding managing the bodily aspects and navigating the relationships surrounding the older person; and it is labour-intensive with an exploitative character.

The number of older parents ageing in tandem with their adult children with intellectual disability (ID) is increasing. This unique situation calls for greater research that investigates how older parents experience this extended care-giving role, including the extent to which they are engaging in futures planning. Participants were recruited via disability service providers in South Australia. Using the theoretical perspective of hermeneutic phenomenology to understand lived experiences, semi-structured in-depth interviews were carried out with older parents (N = 17, mean age 70 years). Six offspring were living in the family home while the remainder were in supported accommodation. Main themes to emerge from the data were: (a) perpetual parenting, (b) costs and rewards and (c) planning to plan. Parents were providing care across a range of areas, regardless of whether their offspring lived at home or in supported accommodation. While aware of the need to plan for the future, most did not have a firm plan in place. Parents are providing a high level of support to their adult children with ID regardless of whether they live in supported accommodation or the family home. While some have started to think about future care arrangements, most appear unclear over what the future holds.

Although there is much written on the emotional labour of nursing, there is little research grounded in the experience of so-called ‘unqualified’ care assistants. This paper is drawn from an ethnographic study conducted with care assistants on three dementia care wards in one mental health trust within the United Kingdom National Health Service (NHS). We describe the emotional labour carried out by care assistants in their attempts to provide personalised care for people whose cognitive degeneration renders conventional relationship-building very difficult, produces unpredictable ‘challenging behaviour’ and calls into question the notion of ‘feeling rules’. This context requires the ability to strike a balance between emotional engagement and detachment, and it is the complexities of this relationship that are the focus of this paper, arguing that a degree of detachment is a prerequisite to engagement in this context. In conclusion, we argue that the contribution of care assistants in this context needs to be better acknowledged, supported and remunerated.

The study reviewed coping and help-seeking behaviour among Hong Kong Chinese family care-givers of older people diagnosed with dementia. A convenience sample of those caring for family members with dementia (N=11) was recruited in Hong Kong. Semi-structured interviews were conducted, transcribed and analysed using NVivo. The study found evidence of distinct Chinese coping strategies that focused upon internal self-regulation, forbearance and family obligations. In terms of help-seeking behaviour, these care-givers expressed great concern about bothering their family members. When there is a desperate need for help, they turn to community services. Results are discussed in the context of both traditional Chinese cultural values as well as the modern transformations of the Chinese society. In particular, Eastern philosophical teachings tend to focus on changing personal inner perception and thoughts rather than attempting to change the environment. Although family obligations have been traditionally upheld, many modern Chinese societies are undergoing social and demographic changes, resulting in marked decline in multi-generational households. Our findings can have applications not only for Chinese cities but also may have implications to the West as strong well-established Chinese communities are widespread.

This paper considers developments in long-term care that are increasingly focused around the individual. Recent decades have seen massive changes in the way that care is understood and provided. Yet in Australia, as in Europe, North America and Asia, we are still a long way from a stable state of agreed services and provisions. Emphasising the social theory behind the shift, it is argued that understanding the individualisation of care cannot be reduced to a simple dichotomy of good or bad. Individualised care promises much, but the concept is applied to a wide range of phenomena, often in ways that conceal rather than reveal the character of the transactions involved. For individualisation to become meaningful it must be developed as a condition of recognition that is equally applicable to those who provide and those who depend on care. It is also important to distinguish individualised care finance arrangements from real attainments in the practice of providing care. These distinctions are necessary if we are to distinguish its use as an ideological justification for welfare cutbacks and the restructuring of care provisions as markets from the liberating potential that the approach can present when care practices are more truly based around the recognition of the individuals concerned: those who receive and depend on assistance as well as those who provide it.

The North American post-war generation, known as the baby-boomers, has challenged traditional family relations and the sexual division of labour. How do these challenges play out in the face of frail, ill or disabled family members? A study undertaken in Montreal, Quebec, with baby-boomer care-givers aimed to raise understanding of the realities of this group. We met with 40 care-givers for a one and a half-hour qualitative interview to discuss their identification with their social generation, their relationship to care-giving, their values regarding care-giving, and the reality of the care-giving they offer. The findings indicate that women, in particular, no longer identify themselves mainly in terms of family. For most, care-giving is not their only or even their dominant identity. They are actively trying to maintain multiple identities: worker, wife, mother, friend and social activist, alongside that of care-giver. They are also participating in the very North American process of individualisation, leading to what we call the ‘denaturalisation’ of care-giving. Notably, the women we met with call themselves ‘care-givers’ and not simply wives, daughters or mothers, denoting that the work of care-giving no longer falls within the realm of ‘normal’ family responsibilities. These care-givers thus set limits to their caring commitments and have high expectations as to services and public support, while still adhering to norms of family responsibility for care-giving.

Meaningful engagement in activity is associated with the maintenance of health and wellbeing, but reduced activity participation is common among persons with dementia. Family care-givers play an important role in engaging their relatives with dementia in activities but little is known about their perception of occupational engagement. This study aimed to examine care-givers’ perception of occupational performance of their relatives from three aspects: person, occupation and environment. Adopting a qualitative methodology, semi-structured and in-depth interviews were conducted with 14 family care-givers. Care-givers were also asked to document the activity patterns of their relative, using the Activity Card Sort Hong Kong version (ACS-HK). The ACS-HK findings suggested that high-demand leisure activities were mostly retained (61%) while instrumental activities of daily living were the least retained (37%). Qualitative analysis revealed that care-givers’ perception of activity participation was intertwined with their motives and behaviours to get their relatives engaged in activities. Care-givers acknowledged occupational engagement as a means of maintaining wellness and used various strategies to encourage their relative's activity participation. Apathy and passivity, however, are difficult to deal with. Also, activity decisions appear to depend on the availability of support resources and a balance between safety concern and risk-taking. Clinical practitioners could assist care-givers by suggesting activity strategies and providing support resources for continued engagement of their relative in activities.

Quality of life and wellbeing in nursing homes are becoming more important in research and practice. One of the main influences on residents' wellbeing is the interaction with their professional care-givers. The purpose of this study was to explore to what extent care-givers support the residents' needs of relatedness, autonomy and competence, and how this need support is related to wellbeing. Residents and their professional care-givers of four nursing homes in the Netherlands participated in an observational and questionnaire study. Three video-observations of each resident (with different care-givers) were made during morning care. Additional data were collected by means of questionnaires. The results show that the needs of residents were, on average, moderately fulfilled during care interactions. More need support by care-givers was related to higher resident wellbeing. Care-givers provided more need support to residents with stronger functional impairments. More need support was provided by higher-educated care-givers and care-givers in higher job functions. The results show the importance of need support for situational wellbeing, but the contribution to the general subjective wellbeing of residents remains unclear. Further (longitudinal) research is needed to investigate changes in wellbeing over time. Possible differences between subjective ratings and observations of need support and wellbeing should be taken into account.

The epidemiological health transition in Indonesia has lead to a substantial ageing of its population and a rapid increase in the prevalence of chronic progressive illnesses in advanced age that, in most cases, require some sort of care. This shift from ‘cure’ to ‘care’ necessitates new paradigms in both health-care delivery and research on older people in less-developed countries. Care involves both attitudes and practice, and is a dynamic interaction between giver and recipient. The vulnerability of frail older people is strongly related to the resources, capability and willingness of kin and non-kin to act as care-givers for extended periods. Normative filial piety and kinship obligations are no longer undisputed. This paper reports a study of the care and support received by chronically ill older people in urban areas of North Sulawesi, Indonesia. The majority rely on close family members, most often a wife or a daughter (or both), to provide treatment, care and support. The main care activities are support with ‘activities of daily living’ and therapies for specific illnesses. Care-givers experience manifold burdens when providing care for frail older people, and tend to reduce their support as the severity and duration of their relative's illness increases. It is shown that an older person's vulnerability to inadequate care provision, or its withdrawal, is associated with marital status and gender (unmarried women and widows being most at risk), poverty, weak support networks, and having care-givers who are themselves vulnerable.

This paper uses qualitative data from a cross-national study of ‘cash for care’ schemes in five European countries (Austria, France, Italy, The Netherlands and the United Kingdom) to consider the concepts of empowerment and independence in relation to both care-users and care-givers. The paper locates the schemes along two axes, one of regulation/non-regulation, the other whether relatives can be paid or not. Each of the schemes has a different impact both on the care relationship and on the labour market for care. In The Netherlands where relatives can be paid, for example, a fully commodified form of informal care emerges; but in Austria and Italy with low regulation, a mix of informal and formal care-givers/workers has emerged with many international migrant workers. In the UK, direct payments allow care-users to employ local care-workers who deliver care for various lengths of time; while in France a credentialised system means that care-work is delivered by qualified workers but for very short intervals. The main conclusion is that none of these schemes have a simple outcome or advantage, and that the contexts in which they occur and the nature of their regulation has to be understood before drawing conclusions about their impact on empowerment and independence on both sides of the care relationship.