Abstract
In this article, we argue that structural stigma is a fundamental and often overlooked factor contributing to carer inequalities globally and that interventions that solely target individual carer outcomes are therefore unlikely to be effective or sustainable without a systemic approach that considers the multilevel social issues that are the root causes of carer disparities. Recognising, redistributing and alleviating unpaid care are not only moral imperatives but also economic necessities. It is urgent to understand further how structural stigma related to dementia is conceptualised and operationalised, what its implications are for unpaid care, and strategies to end it globally.
Introduction
The vast majority of the 57 million people currently living with dementia globally rely on their family members for the care and support they need, particularly in low-resource settings (World Health Organization, 2021). Carers (often called ‘family carers’ in cases of kinship), who are mostly women, are therefore essential to individuals with care needs, health systems and societies. However, research systematically shows that caregiving can be detrimental to carers’ own well-being, fundamental rights and life opportunities (Fleitas Alfonzo et al, 2024; Lacey et al, 2024). Studies on carers are usually focused on understanding caregiving experiences and physical and mental health impacts and on designing and implementing strategies to improve quality of life at the individual level, failing to consider a more complex set of factors that are the root causes of negative carer outcomes. In this article, we argue that structural stigma is a fundamental and often overlooked factor contributing to caregiving inequalities globally. We examine how negative carer outcomes are linked to structural stigma related to dementia, leading to multiple carer inequities that, in turn, further contribute to negative outcomes and societal stigma in a cycle of disadvantage, poor health and limited life opportunities for carers. This is potentialised in contexts of intersectionality, leading to a heightened burden of stigma and social disadvantages. We argue that interventions that solely target individual carer outcomes are unlikely to be effective or sustainable without a systemic approach that considers the multilevel social issues that are the root causes of carer disparities.
Structural stigma related to dementia in political discourses and public policies
Stigma is established as a fundamental cause of health disparities among multiple stigmatised groups (Hatzenbuehler and Link, 2014; Bolster-Foucault et al, 2021). It is defined as the co-occurrence of labelling, stereotyping, separation, status loss and discrimination, through which power is exercised by the stigmatiser over stigmatised individuals (Link and Phelan, 2001). Stigma can occur or be identified/experienced in different forms and at different societal levels, such as at the public (for example, media content and broader societal views) and interpersonal levels (for example, how people see, describe or treat each other), all the way to structural forms of stigma, which are those embedded into institutional laws, policies, systems and services that create, facilitate, legitimise and perpetuate discriminatory practices, restricting the opportunities and the rights of stigmatised groups (Bolster-Foucault et al, 2021). While evidence of public and interpersonal forms of stigma exists, far less research has been undertaken on structural forms of stigma (Hatzenbuehler and Link, 2014).
The implications of structural stigma involve limited availability of services, the unfair distribution of resources, a lack of policies that consider the needs of stigmatised groups, undertreatment or poor care practices, the retention of services, and fragmented care (Livingston, 2020). It can also be seen in low-quality care practices, such as explicit and more subtle negative attitudes and inappropriate practices among health professionals (for example, not referring to the person during consultations and ignoring their reports of symptoms and needs), adverse health interactions and experiences (for example, dehumanised care and abuse of psychotropic medication), and the excessive use of coercive or paternalistic approaches (Livingston, 2020). In dementia, public and interpersonal forms of stigma prevent access to the diagnosis, care, support and other rights of individuals living with the condition (Alzheimer Disease International, 2019). However, research on structural stigma related to dementia is scarce.
It has been argued that structural stigma related to dementia is largely a result of the commoditisation of well-being, health or even life itself observed in recent decades as a global neoliberalist plan, leading dementia to be perceived as a social burden whose responsibility must fall on individuals and families and people living with dementia to be seen as having less value and being a fiscal weight and ‘disposable’ (Burke, 2017). The literature demonstrates, for example, how the discourse of what is considered ‘successful ageing’, fuelled by this neoliberal logic (that is, living a longer, productive and active life, being self-sufficient, and having mastery over information technologies), generates the notion that ageing is mouldable and avoidable and can be transformed or postponed and that those who do not reach this state of ‘success’ are somehow limited, irresponsible or of lesser value, causing dementia to be seen as a failure of the individual to ‘age well’ (Latimer, 2018).
Ageing ‘badly’ has therefore been personified in the figure of the person who develops dementia and also serves as a justification for strategies to increase capital production through the extension of the number of years of productivity and employability. In other words, people living with dementia are seen as a social burden and inconvenient users of the resources of those who ‘contribute to the system’, which is often used to legitimise budget cuts in health and social care (Latimer, 2018). Further, laws and regulations often fail to protect older people living with reduced functional ability, ‘processing’ these individuals and their needs through the system efficiently and conveniently (Charmaz, 2020). Examples include establishing guardians assigned by the courts to manage the wishes, rights and resources of the vulnerable person in order to serve the purposes of the court, not the person, as the process often involves a superficial physical assessment, short-term hearings and minimal supervision of guardians, regardless of the well-being, autonomy and rights of individuals (Charmaz, 2020).
Such strategies have been considered as ‘political weapons of power’ to cause shame and guilt in people who need care and to justify the abandonment of vulnerable people by the state (Scambler, 2018). This also aims, directly or indirectly, to benefit industry and corporations, for example, in the way that ageing has become an object of business, consumption and profit for biomedicine that aims to ‘combat’ ageing and protect older people from the ‘failure to age’, that is, so that they do not become ‘demented’ (worst possible outcome), legitimising such a form of discrimination as an act of benevolence. As a result, successful ageing and dementia prevention are increasingly being individualised and reconstructed as a problem of self-care and self-management of risk, ignoring the primary and systemic causes that lead to this, for example, poverty, environmental pollution, pathological stress, violence and so on (Burke, 2017; Latimer, 2018). Such a ‘political strategy’ that uses people living with dementia as a ‘scapegoat’ then causes society to blame such a group of individuals for the ‘crisis’ installed, exempting governments, corporations and systems from responsibility (Friedman et al, 2021). It also generates a massive reduction in empathy and compassion for each other in society (Scambler, 2018), as it leads the media to portray people living with dementia and their families as being part of a costly generic group, with such collectivisation used as a dehumanising tool (Scambler, 2018; Siiner, 2019).
Many national policies and laws from multiple countries convey the notion of families as solely responsible for the care and support of their older relatives’ needs, exempting governments from their part in protecting vulnerable individuals, even in high-income nations (Arlotti et al, 2023). This limited accountability by governments results in a shortage of decent levels of dementia care and support. Alongside impacting people living with the condition, it leads to detrimental levels of burden and limits the life opportunities of carers, particularly women, who are often expected to care (Akinyemi et al, 2022). For example, when family carers are no longer able to care for people living with dementia themselves, they are shamed and shunned, particularly in collectivistic-oriented societies, as transferring the care responsibility to professionals is commonly seen as neglect and as the family carers failing their obligation (Scambler, 2018; Avdikou et al, 2019; Lopez et al, 2019; Hanssen, 2024). Worrying about shame and other forms of stigma then results in hesitation to seek help, which leads carers to continue to provide care in circumstances of burden (Hanssen, 2024). This is particularly more pronounced in low- and middle-income countries, where formal care is further limited and carers simply do not have a choice (Prince et al, 2015). Carers in such contexts frequently experience isolation, as dementia is often misunderstood and stigmatised within communities, leading to loneliness and a sense of helplessness (Lopez et al, 2019; Musyimi et al, 2021; Oliveira et al, 2021).
Structural stigma and inequalities in unpaid care
The home is the preferred place of residence for many individuals living with dementia throughout the disease trajectory (Roy et al, 2018). However, providing home-based unpaid care and support to a person living with dementia requires time, relevant competencies (attitudes, skills and knowledge), financial resources and/or support to afford essential care services and tools, a network of social support, close contact with responsive and timely health and social care systems inclusive of respite services, and good mental and physical health (World Health Organization, 2017). As dementia progresses, which can sometimes occur more rapidly following an acute health issue, the care routine intensifies considerably. In the absence of a strong formal support network, increases in care needs force many carers to put aside their own personal needs and opportunities in order to sustain the care of their family members with dementia, leading to isolation (Brimblecombe and Cartagena Farias, 2022) and impoverishment (Kröger, 2022). Although care at home is often advocated as the least costly route, research shows that this may not necessarily be the case (Wittenberg et al, 2019); it is just less costly for governments as families bear the bulk of it. The economic burden of care placed on families is indeed substantial and is further exacerbated in low-resource settings where access is limited even to basic services, such as education and food, aggravating the burden on carers (Thrush and Hyder, 2014).
The intersection of structural stigma related to dementia with other stigmatising identities, such as being female, ethnically diverse and socio-economically disadvantaged, leads to and worsens disadvantages and inequalities in these groups of carers (Gilmore-Bykovskyi et al, 2018; Brimblecombe and Cartagena Farias, 2022). Women assume the majority of unpaid care globally due to such issues as entrenched societal norms (for example, women being naturally more caring and nurturing than men) that create societal expectations of caregiving as a woman’s work (Gilmore-Bykovskyi et al, 2018; Stewart et al, 2021). This gendered division of care limits women’s opportunities and reinforces their socio-economic disadvantages, often resulting in significant personal and professional sacrifices (Ferrant et al, 2014). Female carers tend to provide more intense care for longer periods and are likely to experience higher levels of stress, anxiety and depression than male carers (Pinquart and Sorensen, 2006). Care inequities are particularly a risk for carers with multiple stigmatised identities, as they bear the brunt of caregiving duties without equitable access to support, struggling to afford necessary care services and medical treatments (Sluder, 2020; Giebel et al, 2021; Hengelaar et al, 2023).
Even though dementia is the first cause of death in many countries and the first cause of functional impairment in older people globally, the lack of investment in long-term care infrastructure for individuals living with the condition clearly shows that dementia is not a public health priority in most settings (World Health Organization, 2017; Musyimi et al, 2020; Costa-Font and Raut, 2022). Carers are left to navigate complex caregiving responsibilities with minimal support and training, leading to burnout and decreased quality of life for both carers and care recipients (Wang et al, 2014). Despite women’s contribution to healthcare, it remains underappreciated, and there are very few gender-sensitive policies to enable them to integrate their social and occupational roles and express their full potential (The Lancet Public Health, 2024). Unpaid care is far from being recognised as a key long-term care workforce issue that requires public investments, particularly as it involves serious gender-equity issues (The Lancet Public Health, 2024).
Despite the key role that structural stigma can play in carer inequities, most carer interventions still mainly (and usually only) target the burden and mental health of these individuals at the individual level (Spiers et al, 2024), neglecting the broader social and root causes of such outcomes. While these interventions can provide some relief, they fail to address the underlying structural issues that generate and perpetuate caregiving inequities. Without addressing the root causes of structural stigma and inequities, these interventions are limited in their effectiveness and sustainability, as indicated in two recent analyses of several systematic reviews (Kirvalidze et al, 2023; Oliveira et al, 2023). If we really want to address the root causes of negative outcomes among carers, we must better understand and address the key structural elements that lead to inequities in this population, thereby shifting from individual-level interventions to systemic solutions that tackle structural stigma. This involves rethinking public health priorities and recognising caregiving as a public responsibility rather than a private/individual burden. Policymakers must ensure an equitable distribution of resources and support services, particularly in low-resource settings where the need is greatest. By addressing the root causes of caregiving inequities, including structural stigma, we can create a more just and supportive environment for carers, ultimately improving the quality of care for individuals with dementia.
Conclusion
Without the significant contribution of carers, long-term care systems would collapse, particularly in low-resource settings. The economic value of unpaid care is immense, estimated at billions of dollars annually in terms of the cost of replacing these services with paid care. Recognising, redistributing and alleviating unpaid and unsupported care are not only moral imperatives but also economic necessities. In this article, we have argued that carer inequities are often a product of how dementia is seen and considered (or not) in political discourses and public policies and that current individual strategies to mitigate carer burden are unlikely to be sufficient. To effectively address this challenge, it is crucial to implement systemic changes that prioritise carer support and challenge the societal attitudes that undermine or devalue carer contributions. By doing so, we can ensure that carers receive the recognition and resources they need to continue providing essential care while reducing the negative impacts that this role can have on their health and life opportunities, particularly on women. We urge the research community to focus their attention on further understanding how structural stigma related to dementia is conceptualised and operationalised, its implications for unpaid care, and strategies to end it globally.
Funding
This work was not funded.
Conflict of interest
The authors declare that there is no conflict of interest.
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