Where Person-Centered Care Falls Short: Toward an Approach That Tackles Othering and Stigmatization of People with Dementia

Abstract

This theoretical opinion article critiques person-centered dementia care (PCDC) for overlooking the structural dimensions of Othering and stigma. In response to these limitations, we propose three key conceptual shifts essential to overcoming Othering and stigma experienced by people with dementia. First, although PCDC emphasizes individual agency, it is constrained by institutional priorities and professional perspectives, which can unintentionally reinforce structural inequalities. Centering the lived experiences of people with dementia as essential knowledge can rebalance power and validate their expertise. Second, reducing stigma means moving beyond PCDC’s individualized focus to recognize the social conditions that perpetuate Othering. This requires inclusive interactions and professional reflection that challenge biomedical assumptions. Third, PCDC is often limited to formal care settings, neglecting how people with dementia maintain social roles and a sense of community belonging. Addressing stigma, therefore, requires extending support into everyday life through contextual, strengths-based approaches that sustain social roles.

1. Introduction

In recent decades, there has been a growing emphasis on person-centered care for people with dementia, an approach that prioritizes the individual’s needs, autonomy, and dignity (World Health Organization 2021). It emerged in response to critiques of the traditional biomedical model, which frames dementia solely through a disease-oriented lens and, in doing so, overlooks the person’s lived experiences and unique needs (see, e.g., Cotrell and Schulz 1993; Kitwood 1997; Lyman 1989; Whitehouse and George 2008). Unlike the biomedical approach, person-centered dementia care (PCDC) focuses on recognizing and valuing the individual beyond their diagnosis or impairments, and a respectful partnership between healthcare providers and the person receiving care (Manthorpe and Samsi 2016). The shift from a biomedical approach to PCDC is now widely recognized as a core commitment and guiding principle in policy and service provision. For example, PCDC is regarded as fundamental to the WHO’s Global Action Plan on the Public Health Response to Dementia 2017–2025, and is consistently highlighted as a key principle and a goal for an effective response (World Health Organization 2021).

While the shift from a biomedical model to one that recognizes and values individual needs is a positive development, an important limitation is that PCDC fails to address the asymmetries that characterize the provider-patient relationship (Bartlett and O’Connor 2007; Birt et al. 2017; Doyle and Rubinstein 2014; Guan et al. 2025; Katz and Leibing 2023; Warren and Wynia 2025). These power imbalances originate from the persistent Othering and stigma of people with dementia within healthcare and broader society (Hulko 2004; Milne 2010; Van Wijngaarden et al. 2019; The 2025), which in turn hinder the full realization of PCDC (Doyle and Rubinstein 2014; Milne 2010). For instance, in their study on how PCDC was defined and practiced by staff in a dementia care setting, Doyle and Rubinstein (2014) found that Othering and stigma prevented PCDC from being enacted. As a result, traditional biomedical approaches continued to dominate the care culture—despite strong organizational support for using PCDC.

Moreover, as argued by Katz and Leibing (2023), under the person-centered care model, care and support for people with dementia is inherently asymmetrical because the notion of their personhood is defined by those who do not have dementia. This renders their personhood dependent on how they are perceived and treated by others, thereby perpetuating an “us-versus-them” divide and intensifying the Othering of people with dementia (pp. 57–61). The language and imagery found in healthcare literature, public discourse, and policy reinforce this Othering view (Milne 2010; Mitchell et al. 2013; Putland and Brookes 2024).

In other words, PCDC aims to uphold the individual’s needs, autonomy, and dignity, but its delivery is impeded by Othering, stigma, and power imbalances within healthcare and broader society, leading to further disempowerment and marginalization of people with dementia. These issues are not systematically addressed within person-centered approaches; consequently, responses remain largely superficial and fail to address the foundational conditions through which Othering and stigma are reproduced.

Thus, in this theoretical opinion article, we advocate for an approach that confronts the Othering and stigma of people with dementia. Drawing on existing literature—including critiques of PCDC—we organize our discussion around three key conceptual shifts necessary to realize such an approach, namely: (1) Redefining expertise, (2) Recognizing the environment’s role, and (3) Sustaining social roles. In doing so, we argue that person-centered approaches to dementia, or any dementia care model, cannot be effective without systematically including these shifts within a practical approach. We present these arguments after briefly highlighting insights on Othering and stigma within the context of dementia.

2. Background: Othering and Stigma

As noted above, despite growing global attention to PCDC, the biomedical model continues to shape healthcare and public discourse. Beyond the influence of the biomedical model, Othering perceptions of people with dementia are reinforced by cultural stereotypes that strip away personhood and reduce individuals to something less than fully human (Behuniak 2011; Harvey and Brookes 2019; Latimer 2018; Low and Purwaningrum 2020; Milne 2010; Putland and Brookes 2024). The diagnosis of dementia is frequently viewed as a stigmatized condition by both those living with it and by others (Fletcher 2021; Milne 2010; The 2025; Van Wijngaarden et al. 2019).

Here, ageism creates a double stigma: the fear of aging combined with the fear of cognitive decline (Grenier and Phillipson 2023; Latimer 2018; Milne 2010). In public discourses, aging is often framed through ideals of “successful” or “active” aging, which emphasize ongoing productivity and independence. In the context of dementia, these expectations intersect with cognitive changes, leading to social rejection of people with dementia as those who have “failed” to age successfully in a society that values productivity (Latimer 2018). Thus, in both healthcare and broader society, stigmatizing language and visualizations of older people with dementia lead to social distance between those with and those without dementia (Doyle and Rubinstein 2014; Hulko 2004; Van Wijngaarden et al. 2019). In turn, people with dementia experience shame, exclusion, a diminished sense of self, and further isolation from society (Swaffer 2014; Van Wijngaarden et al. 2019; The 2025).

Inspired by person-centered approaches, there have been several developments in recent decades that seek to reduce Othering and stigma surrounding dementia. For instance, multiple dementia-friendly initiatives have emerged. These initiatives represent social and environmental approaches designed to foster social inclusion and normalize the lived experience of people with dementia (Hebert and Scales 2017), as well as initiatives to reduce stigma surrounding dementia (Bacsu et al. 2020).

However, an important limitation of such initiatives is that the perspectives of people with dementia are often underrepresented in both research (Snowball et al. 2024) and the development of the initiatives (Hebert and Scales 2017), which can reduce their credibility and relevance. The “living well with dementia” discourse, which underpins many dementia-friendly initiatives, has also been criticized for further marginalizing those with more severe forms of the condition (Fletcher 2021; Ward and Sandberg 2023) and for contributing to exclusion on the basis of a “dementia label” (The 2025). Moreover, while anti-stigma initiatives aim to reduce discrimination, they may unintentionally intensify internalized shame and fear of judgment among people with dementia (i.e., self-stigma), for instance, by foregrounding discrimination in ways that can signal to people with dementia that their social world is threatening and unwelcoming (Fletcher 2021).

In response to the limitations of person-centered approaches and related initiatives, we argue in the following sections for three key conceptual shifts that need to be implemented in practice to counter the Othering and stigma experienced by people with dementia. These insights are shaped both by existing socio-scientific literature and by decades of ethnographic research on people living with dementia; the latter of which has also informed the development of a practice-based approach designed and implemented in the Netherlands by the second author (The 2005, 2017, 2025).

3. Redefining Expertise

People with dementia are often perceived as passive, dependent recipients of care rather than as individuals who can actively participate in their care planning and broader social life (Fetherstonhaugh et al. 2013; Swaffer 2014; Van Wijngaarden et al. 2019; The 2025). As a response to these perceptions, PCDC aspires to strengthen individual agency. Nevertheless, critics argue that PCDC can reinforce structural asymmetry because its application primarily relies on organizational policies and professional practices rather than on the perspectives of people with dementia (Katz and Leibing 2023; Manthorpe and Samsi 2016). This means that the lived experiences of people with dementia are interpreted by professionals according to institutional models, rather than structuring the model itself—thereby perpetuating unequal power relations between providers and care recipients (Manthorpe and Samsi 2016). Indeed, when more powerful groups hold the ability to define and Other people with dementia, this will lead to both explicit stigma and the exacerbation of self-stigma (i.e., internalization of negative stereotypes, as well as the fear and shame surrounding it) (Fletcher 2021).

A substantial body of literature highlights this issue by emphasizing the importance of incorporating knowledge derived from the lived experiences of people with dementia (see, e.g., Fetherstonhaugh et al. 2013; Fletcher 2021; Snowball et al. 2024; Steeman et al. 2013; Ward and Sandberg 2023; Warren and Wynia 2025; The 2025). Incorporating these perspectives is essential to challenge conventional understandings of dementia and support people with dementia in maintaining their sense of self and well-being (Fetherstonhaugh et al. 2013; Snowball et al. 2024; The 2025). Yet in reality, this is rarely put into practice (Lion et al. 2020. As highlighted by Fetherstonhaugh et al. (2013), the Othering perceptions of healthcare professionals and family caregivers, and even representatives from dementia organizations, can create obstacles to do so. Stigmatizing perceptions of dementia are found among general practitioners as well, potentially reinforcing societal stigma (Gove et al. 2016; Warren and Wynia 2025). Consistent with this marginalization, research has also been criticized for its neglect of in-depth accounts of the lived experiences of people with dementia (Fetherstonhaugh et al. 2013; Fletcher 2021; Lion et al. 2020; Snowball et al. 2024). Even where such accounts are included, such as in anti-stigma campaigns, critics (Fletcher 2021) have noted that they frequently privilege the voices of particularly articulate spokespeople, thereby constructing an “idealized” representation that Others those whose experiences do not fit this image. While idealized representations may initially emerge from practical selection biases, their repeated circulation within anti-stigma campaigns actively reinforces a structural process of benevolent Othering, whereby only articulate and socially palatable narratives are validated as legitimate (Fletcher 2021).

Thus, in line with other scholars (Birt et al. 2023; Fetherstonhaugh et al. 2013; Fletcher 2021; Snowball et al. 2024; Swaffer 2014; Ward and Sandberg 2023; Warren and Wynia 2025), we argue that combating dementia-related stigma requires recognizing lived experience as essential knowledge. This entails engaging with the diverse and in-depth experiences of every person with dementia, rather than occasionally highlighting a select few voices. Such experiences should guide the ways in which people with dementia wish to be supported, and must not be treated as secondary to professional or scientific expertise.

An illustration of how attending to the lived experience of a person with dementia can both support their individual needs and simultaneously challenge stigma is evident in Anne-Mei The’s story of Felix (The 2025). Following his Alzheimer’s diagnosis, Felix initially withdrew, displaying apathy and avoiding social contact by staying at home. The—a professor in the field of dementia—began spending time with him in a non-confrontational way, taking walks and sharing aspects of her own life. This encouraged Felix to re-engage, share stories and humor, which allowed rapport to develop without centering his condition. When she eventually raised the topic directly, Felix reacted angrily, perceiving The as yet another “expert” telling him what to do. In response, she reframed the interaction, asserting, “You are the expert, Felix, not me,” thereby validating his lived experience and redefining the power dynamic (p. 55). From then on, Felix led their conversations. Through shared presence and respect for his expertise, he regained confidence and voiced his needs, and gradually resumed activities he once valued, such as visiting the library, playing billiards, and reconnecting with his friends (p. 163).

Centering the lived experiences of people with dementia as foundational knowledge about their individual needs can help combat both self-stigma and societal stigma that portray individuals as passive, dependent care recipients (Birt et al. 2023; Fetherstonhaugh et al. 2013; The 2025). For Felix, self-stigma was addressed by taking his lived experiences seriously, which helped him regain the confidence to voice his needs and engage in activities he could still do rather than withdraw from society. As expressed in a study on decision making for people with dementia (Fetherstonhaugh et al. 2013), such involvement affirms “I am still a person” and counters the sense of being marginalized. This validation empowers individuals to express their needs, such as Felix’s desire for guidance “rather than just being treated” (The p. 55). Societal stigma was challenged by listening to his wishes to remain part of the community, which was achieved through social support that allowed him to reclaim his agency. Here, top-down models like PCDC and similar initiatives fall short because they are designed and implemented primarily by professionals. We thus advocate for an approach that centers the lived experiences of people with dementia as foundational knowledge, thereby redefining traditional notions of expertise.

4. Recognizing the Environment’s Role

As previously noted, much of the stigma faced by people with dementia stems from dominant negative perceptions embedded in society (Birt et al. 2023; Fletcher 2021; Milne 2010; Van Wijngaarden et al. 2019; The 2025). Care professionals, family members, and society at large all contribute to this marginalization, which often arises from subtle, insensitive behaviors rather than overtly harsh language (Birt et al. 2023; Van Wijngaarden et al. 2019; The 2025). For instance, questions about a person with dementia may be directed to their spouse or others instead of to the person themselves (Birt et al. 2023; Van Wijngaarden et al. 2019; The 2025). Similarly, the subtle, inquisitive, or disapproving gazes of others can cause people with dementia to feel patronized and denied full recognition as complete human beings (Van Wijngaarden et al. 2019).

While the lens of personhood, which underpins PCDC, offers a humanistic perspective that may—to some extent—challenge the stigma associated with dementia (Cotrell and Schulz 1993; Kitwood 1997), it has been criticized for being an individualized concept, primarily focused on psychological and health matters such as spirituality and wellbeing (Bartlett and O’Connor 2007). In doing so, it risks offering only a partial account of what it means to live with dementia. Bartlett and O’Connor (2007) argue that this fundamental limitation results in dementia practice and research manifesting mainly at an individual level rather than addressing social dimensions, including ingrained cultural beliefs, structural issues, and the viewpoints of immediate social networks (Van Wijngaarden et al. 2019; The 2025). Consequently, PCDC lacks the necessary language and frameworks to confront the pervasive stigmatizing perceptions held by professionals, family, and the wider community (Bartlett and O’Connor 2007; Birt et al. 2017; Doyle and Rubinstein 2014; Guan et al. 2025; Katz and Leibing 2023; Milne 2010; Van Wijngaarden et al. 2019; Warren and Wynia 2025).

Therefore, in this section, we argue that tackling Othering and stigma related to dementia requires shifting social networks’ perceptions to recognize how strongly the environment shapes the lived experience of dementia (Van Wijngaarden et al. 2019; The 2025. This goes beyond simply acknowledging the “person behind the disease,” as PCDC seeks to do. Those supporting people with dementia must actively work to restore their recognition as full and valued persons by challenging stigma. In the following, we highlight two aspects essential for such a paradigm shift.

First, in daily social life, direct interactions with individuals living with dementia are crucial to move beyond stigmatizing views—as consistently emphasized by scholars in the field (see, e.g., Behuniak 2011; Birt et al. 2017, 2023; Doyle and Rubinstein 2014; Fetherstonhaugh et al. 2013; Putland and Brookes 2024; Swaffer 2014; Van Wijngaarden et al. 2019; Warren and Wynia 2025; The 2025). Here, it is important to recognize that the very idea of dementia—and how others might perceive it—can cause individuals with dementia to fear negative social interactions, even in the absence of direct discrimination (Fletcher 2021). As argued by Fletcher (2021), this can exacerbate self-stigma. To help alleviate this, we argue that interactions should be integrated naturally into everyday society, shifting the focus away from the condition itself. In the following, we highlight an example of the impact of such interactions.

In her book, Anne-Mei The (2025, pp. 60–63) recalls a symposium on living with dementia that was unexpectedly attended by people with dementia. Initially unsure how to address them, she invited them to speak instead of following the planned program. One man described how he experienced deep loneliness and exclusion, shifting the focus from biomedical symptoms to social pain. When asked about the hardest part, he replied: “It is my environment.” His words, and the words of the other attendees with dementia, challenged stigmatizing views of people with dementia as “zombies” (Behuniak 2011) or a “piece of wood” (Fetherstonhaugh et al. 2013, p. 148). By engaging in a normal social setting and hearing firsthand accounts, the audience (professionals and stakeholders) was compelled to recognize the humanity of the speakers. Their words prompted the audience to see the whole person—not just the condition—and reflect on the social roots of dementia-related stigma.

Second, professionals must be adequately supported in the process of critically reflecting on unconscious stigmatizing attitudes toward individuals with dementia, which includes unlearning the dominant biomedical paradigm. As noted earlier, professionals (including physicians, nurses, and care staff) often rely on a traditional biomedical model that prioritizes task completion and disease-centric views (Doyle and Rubinstein 2014; Guan et al. 2025). Thus, despite the widespread attention to PCDC, stigmatizing attitudes among professionals working with people with dementia and their families continue to exist (Bacsu et al. 2020; Bartlett and O’Connor 2007; Birt et al. 2017; Doyle and Rubinstein 2014; Guan et al. 2025; Katz and Leibing 2023; Warren and Wynia 2025). Education can help professionals recognize that even well-intentioned approaches may inadvertently dehumanize individuals with dementia (Doyle and Rubinstein 2014; Guan et al. 2025). This demands more than simple awareness-raising; it calls for critical self-reflection on personal discomfort, fears, and biases. The insights gained from this process can then be extended to the families and informal networks of individuals with dementia (The 2025).

In conclusion, addressing Othering and stigma requires attention not only to individual needs, as emphasized in PCDC, but also to the social and structural attitudes that perpetuate stigma. The two highlighted key aspects for such a paradigm shift—inclusive interactions and professional reflection—should be understood as closely interconnected. Inclusive interactions, such as the symposium, bring lived realities to the forefront. These experiences can fuel critical self-reflection among professionals and help them move beyond the assumptions of the biomedical model. Recognizing and confronting these social dimensions is essential for fostering a more inclusive mindset.

5. Sustaining Social Roles

In theory, PCDC aims to consider the person within their personal context (Cotrell and Schulz 1993; Kitwood 1997). However, in practice, PCDC is often implemented primarily within healthcare or institutional care settings. As a result, the focus tends to remain within the boundaries of formal care environments (e.g., nursing homes, hospitals), with limited attention to how individuals can remain engaged in society, maintain community roles, or sustain social relationships beyond care (Katz and Leibing 2023). This is a significant shortcoming of PCDC models, since moving away from stigmatizing narratives of deficit requires actively supporting people with dementia to remain a valued part of social and community life—a point emphasized by several scholars (see, e.g., Birt et al. 2017, 2023; Katz and Leibing 2023; The 2025). Thus, this section highlights the importance of sustaining social roles for people with dementia.

Everyday practices and familiar environments can play a crucial role in how people with dementia assert their identities and remain or restore a sense of social presence. In their ethnographic work, Birt et al. (2023) show how people with mild to moderate dementia draw on familiar roles, routines, and objects to maintain social identity and resist being seen as “absent in place.” For example, one participant used church routines to assert his presence and agency beyond his diagnosis; another sustained her identity as a writer by sharing her work in a writing group and receiving feedback which objectively confirmed her skills; and a former builder reinforced his narrative of being “good with his hands” by assembling wooden kit ornaments (p. 1323).

However, sustaining this sense of identity and visibility is not straightforward. As noted earlier, a tension exists between how people with dementia wish to be seen—by society, family, and social networks—and how others perceive and position them (Birt et al. 2023; Swaffer 2014; Van Wijngaarden et al. 2019; The 2025). In other words, the actions and behaviors of others significantly impact the success of individuals’ efforts to present themselves as “a person beyond dementia” (Birt et al. 2023). This depends on a supportive environment that recognizes an individual’s background while fostering meaningful relationships (Birt et al. 2023; Steeman et al. 2013, The 2025). In what follows, we illustrate this through The’s story of Lucia (The 2025, p. 164).

After her dementia diagnosis, Lucia was advised to close her antique shop. Financial tasks like handling payments became challenging, causing her shame and self-stigma, and making her anxious about customers scrutinizing her memory problems. With support from the author’s network, she partnered with Patrick, a social worker who helped with these tasks and gave her the confidence to be open about her condition. Patrick also coordinated a network of students and gap-year volunteers to offer additional support. This contextual assistance enabled Lucia to continue running her shop for another year and a half, delaying institutionalization. It also helped her maintain her identity as a business owner and mentor until she and Patrick eventually worked together on a planned closure of the shop.

The above example highlights the importance of shifting focus from a person’s condition to their capabilities in order to support core social roles. The biomedical approach centered on Lucia’s deficits—her difficulty managing financial tasks—resulting in instructions to close her shop. This reduced her to the status “patient,” which is defined by limitations (Birt et al. 2017, 2023; The 2025). In contrast, by recognizing what Lucia could still do and introducing supportive, non-medical assistance, she was seen as a capable individual with meaningful contributions. In other words, rather than simply “caring for” people with dementia, the goal should be to support them in restoring or reshaping their lives. This can be achieved by building on their strengths, interests, and roles—so they remain valued members of the community (Birt et al. 2017, 2023; Katz and Leibing 2023; The 2025).

6. Conclusions

According to the World Health Organization (2021), the number of people living with dementia is expected to reach 78 million by 2030 and 139 million by 2050, highlighting the urgent need for supportive and inclusive systems. However, persistent Othering and stigma continue to marginalize people with dementia in healthcare and society. This article highlighted how PCDC often overlooks these issues, limiting its impact on systemic change. As a response to these limitations, we argued for three key conceptual shifts that are essential to overcoming Othering and stigma.

First, although PCDC seeks to enhance individual agency, it is constrained by institutional priorities and professional perspectives, which can unintentionally reinforce structural inequalities. Recognizing and centering the lived experiences of people with dementia as foundational knowledge can disrupt these power imbalances, validate individuals as experts in their own lives, and reduce both self-stigma and societal marginalization. Second, beyond the individualized focus of PCDC, effectively addressing Othering and stigma requires engagement with the broader social and cultural contexts that sustain marginalizing perceptions. Stigma is perpetuated not only through explicit discrimination but also through subtle behaviors and assumptions by professionals, families, and communities that undermine personhood. Combating this requires critical awareness of the environment’s powerful role in shaping the lived experience of dementia. This should be driven by meaningful social interactions with people with dementia and by critical reflection among professionals to unlearn ingrained biases rooted in biomedical models. Third, the practical application of PCDC is often confined to formal healthcare settings, limiting attention to how people with dementia sustain meaningful social roles and community connections. Thus, to truly counter stigma and Othering, support must extend into everyday environments, enabling individuals to maintain or restore their identities through contextual, strengths-based support.

Our three proposed shifts are interdependent and cannot be considered in isolation. For example, Shift 3 (‘sustaining social roles’) depends on recognizing a person’s capabilities and experiences (Shift 1, ‘redefining expertise’), which can only succeed with a supportive social environment (Shift 2, ‘recognizing the environment’s role’). Together, these interconnected shifts offer a comprehensive framework for addressing stigma and Othering of people with dementia.