Damian Sendler: There are many ways to think about the self, and each of these ways has a distinct impact on how we perceive ourselves and the world around us. Given that there are many “selves,” the current review suggests that seven fundamental self-processes can be identified to help us better understand the experience of having dementia. The embodied self is one that is manifest as physical awareness; the agentic self is one that is linked to acting as an agent and influencing life circumstances; the implicit self is one that is linked to non-conscious self-processing; the critical self is one that defines the core of self-identity; the surrogate self is one that is based on third-person perspective information; and the extended self is one that includes external objects or existences that are incorporated into the self. These are discussed in terms of self-awareness and how they can be used to understand the experience of dementia.
Damian Jacob Sendler: We can all grasp the idea of a “self,” despite the fact that it’s a difficult one to pin down. A first-person point of view is the lens through which most of us see the world on a daily basis. According to William James’s philosophy of mind and other works, we can only understand ourselves in relation to the person who is experiencing our thoughts and feelings. (1) This is a common philosophical approach to understanding the self (1, 2). First-person ontology is defined as a fundamental property of consciousness by Searle (1). Phenomenologically speaking, our first-person experiences attest to the existence of a subterranean construct, the self, which shapes our perception of the world.
Dr. Sendler: neurological and psychiatric conditions alter our perception of ourselves, providing further evidence for this property of our minds. Many different neural processes are implicated in the wide range of self-changes observed, and these have been found to be associated with specific brain regions, as evidenced by the variety and variety of these changes. It’s critical to remember that when we talk about “the self,” we’re talking about processes rather than something physical in our heads. This avoids the homunculus fallacy of reifying the concept (3). As will be shown in the following sections, these self-processes can be applied to a wide range of situations. An important point to note is that there is no infinite regress or circularity.
As a result, one’s self-perception is likely to be the result of a complex interplay of self-processes. Self-related abilities, such as bodily awareness, agency, and autobiographical memory, are the result of different brain networks in interaction with the environment, including interpersonal values and cultural norms (4). These various self-processes may have a hierarchical relationship, with some establishing themselves earlier and providing the framework for more advanced processes, according to some researchers (5). Certain aspects of the self are at the top of this nested hierarchy approach, responding to the essential processes that allow the emergence of more complex self phenomena (5).
Dementia research that focuses on the “self” has many important ramifications. Relatives and caregivers may find it difficult to see beyond dementia as a diagnosis and disease state because of its neurodegenerative nature. As a result, the term “malignant social psychology” has been coined to describe caregiving practices that diminish the personhood of dementia patients (6). People with dementia (PwD) are weakened and stigmatized by institutional and individual practices that have depersonalizing elements, and this could lead to an overabundance of disability (7).
Humanizing care practices by examining the impact of dementia on self-processes, relying on retained abilities, and fostering a sense of personhood in those with the condition may be possible with this research. Dementia-related impairments must be taken into account in order for this to work effectively. We can only provide better care for people with dementia and their families if we can identify which aspects of their personality are more adaptable to change and which are more vulnerable.
In light of this, the purpose of this article is to discuss how dementia can affect one’s ability to engage in self-processing. There will be a focus on seven distinct types of self-expression: embodied, agentic, critical, implicit, surrogate, extended, and emergent. Each of these will be examined in depth. A final concept, “the emergent self,” was created to fill in the missing notion that the various aspects interact to form emergent properties, the sum of which is greater than the sum of its parts; this was accomplished by selecting these seven aspects as the main constructs that explain totality of the self and that have been considered individually in relation to PwD. Using both a cognitive neuroscience and a social psychology/ethnographic approach, these aspects of the self will be examined. In the conclusion, future research directions and clinical implications are discussed.
A growing body of research suggests that our physical selves are fundamentally shaped by our physical selves (5). Rather than being part of the physical world, the body is seen as a vehicle that allows us to exist as a distinct individual in this world (8–10). In some studies, bodily capacities, such as multisensory integration, interoception, and agency (12–14), emerge as a unified experience of the body through perception and action. Studies have shown that the temporoparietal junction and the extrastriate body area are neural correlates of the embodied self, taking into account the various aspects of the embodied self (15, 16). Somatosensory representations are linked to visual and proprioceptive information by Piras et al. (17) in a resting-state functional connectivity study, which may influence individual self-attribution (17). Other kinds of selves, such as those that require higher levels of brain function, are said to be built on top of the grounded self (5, 18). Some cognitive abilities may be structured or preserved in the context of dementia because of the bodily processes that take place in the body (19).
The persistence of the self in PwD, despite cognitive decline, has been demonstrated by numerous studies. For instance, Kontos (20) demonstrates in an ethnographic study that people with severe dementia may retain aspects of their own selves. These findings may be explained by the idea that human existence is grounded ontologically on implicit processes (21), with the embodied self existing prior to cognitive forms of knowledge and not having to emerge from them as previously suggested (20). Such processes are more resistant to neurodegeneration because they are structured by interaction with the body’s control mechanisms.. Actions such as dancing, caring, and gestural communication can show this embodied dimension through the interplay between corporeal (i.e. physical movement) and social characteristics of the body (“social and personal meaning” associated with movement) [(20, 21); see also (22) for a summary].
When we communicate, our facial expressions, gaze, body movements, intonation and tone of voice are all examples of our embodied self’s natural expression of the body (8). When discussing dementia, gestures are an important topic because they offer a different perspective on how people with dementia (PwD) communicate. PwD who have lost their ability to communicate verbally are still able to communicate non-verbally through eye gaze, facial expressions, and movement (23, 24). Although PwD have shown impairments in facial expression recognition, several studies have suggested that facial reactivity to emotional stimuli, such as films (25), computer tasks (26), and faces, has been preserved, albeit attenuated, in PwD. (27). In these studies, participants’ responses were consistent with the emotional stimuli, suggesting that even in the most severe stages of the condition, bodily processes remain intact. Similarly, across the spectrum of dementia severity, facial expressions have been shown to be responsive to pain stimuli (28).
Artistry and creativity by drawing is another example of embodied self, which is often maintained in dementia. Even in the later stages of Alzheimer’s disease (AD), there have been reports of people with severe cognitive impairments who, despite their condition, are still able to draw (29, 30). Because it represents the expressiveness of the body despite or beyond cognition, the longer-lasting persistence of creativity is linked to one’s “embodied self.” Furthermore, the body is able to learn and transform its perceptions into meaningful and symbolic forms (31).
PwD’s appearance is a major consideration when examining the embodied self (20). Dementia sufferers may benefit from keeping their hair, clothing and cosmetics in line with their gender identity as a form of emotional support (32–34). According to Gove (35), stigmatization occurs when PwD appearance is deemed insufficient in certain social settings. PwD may become alienated from their appearance due to the loss of self-care autonomy in later stages of dementia, with family members or caregivers taking on these responsibilities and adopting their own ways or institutional norms to carry out these tasks (35). As a result of this, some authors have suggested that the process used to care for PwD appearance is more important than the final outcome in terms of shaping the self at this level (36, 37).
Interoceptive processing (i.e., awareness of visceral states) is impaired in dementia, but the embodied self is shown to be preserved. Remaining-state functional connectivity alterations in specific hubs of the brain’s frontotemporal-insular network (FTI) were found in people with Alzheimer’s disease (PwAD) and behavioral-variant FTD (bvFTD), which were associated with impairments in different interoceptive dimensions (accuracy, learning, and awareness). Using stethoscope feedback, both patient groups showed a decrease in interoceptive awareness and an overestimation of their ability to detect interoceptive changes (interoceptive learning). The AD group was found to have a distinct deficit in this type of learning, which may be linked to memory issues. Other interoceptive disturbances, such as altered pain and temperature processing, were also reported in bvFTD, with both hyper- and hypo-responsiveness observed (39). Gray matter volume changes in the right mid and posterior insula were found to be connected to these alterations (39, 40). It has been found that healthy people have similar neural correlates of interoceptive awareness. This includes the insular cortex.
“Sense of agency” refers to the sensation of being able to direct one’s own actions and thus have an impact on the course of external events (43). To understand this phenomenon, we must look at the subjective experience of a voluntary action, including the intention to act, decision-making about possible actions, and the actual act-starting itself (44, 45). Volition is a term that refers to experiences connected to a sense of ownership that occur concurrently with the activity of peripheral somatosensory receptors while the body is in motion. This is another aspect of the agency concept (43). Lastly, one’s sense of agency includes a connection between one’s subjective experience of one’s own actions and observed changes in the external world as a result of the one’s actions.
For example, the feedforward intentional model by Heilman, Barrett and Adair (46), in which signals relating to intention to act are compared with kinesthetic action signals, regulates awareness of bodily action, and also provides the sense of agency for those suffering from anosognosia, which is an awareness of deficit. There are still many unanswered questions about the neural correlates of the sense of agency, but evidence suggests that agency may rely on the connectivity between frontal and prefrontal motor areas involved in movement initiation and the parietal cortex, which supports the monitoring of perceptual events. Neuroimaging studies have also shed light on the importance of resting-state activity in regions that prepare visual and motor information for integration. There is a general consensus that the brain’s resting activity in action-related perceptual and motor circuits must interact in order for the person to feel in command (17).
To put it another way, the concept of agency in social psychology refers to people actively participating in their own self-awareness as it evolves and changes over time. In Bandura’s (49) account of human agency, there are three fundamental aspects: (1) forethought, which is about adapting self-interest to past experiences and providing direction, coherence and meaning to one’s life; (2) self-reactiveness, which is about self-regulation and motivation of actions during the execution of a plan; and (3) self-reflectiveness, which is about the role of people not only as agents of actions but also as observers of their own actions and their own thoughts.
Many cognitive abilities, including language, deliberation, and purposeful action, are directly linked to the concept of agency, which is typically studied by focusing on decision-making and self-reflection capacities (49, 50). Schacter’s (51) dissociable interactions and conscious experience model, for example, holds that consciousness mediates the interaction between fundamental cognitive abilities. People with Parkinson’s disease (PwD) may have a reduced sense of agency due to a deficiency in decision making and self-reflection, according to the literature (52). The experiences of agency in people with cognitive difficulties may necessitate a broader definition of agency. The phenomenological perspective of models like Kontos (53), based on the understanding of agency in PwD as originating primarily from bodily information, action, and goal-directed behavior, respond to this demand (44, 45). Recognizing the social-emotional and cognitive foundations of reflexivity would enable the recognition of agency in PwD even at the most severe stages of the condition (54, 55). This is supported by current research. A recent study by Boyle (56) found that people with mild and moderate dementia were able to demonstrate a sense of agency through behavioral and emotional responses despite their limited decision-making capacity (56).
The literature also discusses the possibility of a link between agency and autonomy (57). Dementia patients have few options in their daily lives to practice and maintain a sense of agency and autonomy because of their decision-making impairments. Decision making, shared decision making, and pseudo decision making were all described in a systematic review by Bosco et al. (57) that examined the experience of agency in people with disabilities. A person with a disability’s ability to make decisions is affected by each of these pathways in a different way (57).
There have been a few studies that have looked at the impact of dementia on human agency. Some studies have examined whether people with severe dementia show emotional reflexivity in their interpersonal relationships, such as Boyle and Warren’s (55). (i.e., PwD and their spouses). Even though PwD’s abilities for deliberation, discourse, and social interaction were limited, they were able to demonstrate emotional reflexive abilities that were necessary for them to exercise agency in their daily lives, according to the researchers. As a result, it’s possible that people with disabilities communicate their thoughts and feelings through mechanisms other than verbal language (55). The strategies used by caregivers to promote and maintain PwDs’ autonomy and agency were also highlighted by Chung et al., reinforcing the significance of social factors for agency in this population (58).
For this reason and others, the findings emphasize the importance of assisting people with dementia (PwD) to practice and maintain a sense of agency, which is closely associated with their sense of self (59). By allowing patients to take part in meaningful activities, these practices give them a sense of agency, commitment, purpose, and community (60). There is evidence that lack of support can cause behavioral and psychological symptoms such as restlessness, wandering, depression and agitation if it is not provided (58).
According to Damasio, our sense of self is based in part on information that is stored in implicit states (18). Researchers have found that people have knowledge of themselves that isn’t accessible to them directly (e.g., unrecognized thoughts and feelings) but can be accessed indirectly (61). Clinical and experimental evidence shows that in a variety of neurological conditions, behavioral and emotional responses can be influenced by implicit information processing [for a review, see (62)]. Self-representations, preferences and attitudes that are implicit in nature are considered to be implicit in this context of the implicit self Implicit self-awareness has yet to be explained in the literature, but studies on neurological patients suggest that implicit processing involves more subcortical regions, such as the basal ganglia and the amygdala, than explicit processing. This supports more cortical regions (63, 64). Following these neural findings, authors suggested the existence of parallel routes, implicit and explicit cognitive mechanisms, for processing similar information (62, 65, 66).
A condition known as anosognosia, a neurological term for the inability of people with disabilities to recognize their own physical and mental changes, is common among people with diabetes (67). Self-report and clinician/informant opinion or task performance are frequently used to contrast awareness in people with disabilities (PwD) (68). PwD have been shown to be able to change their behavior and activities in response to their illness experience even when they are explicitly unaware (69, 70), and this has been incorporated into models of self-awareness (71). According to the cognitive awareness model (CAM; (71–73)), for example, implicit information about ability can be processed in a parallel manner (see also Piras et al. (74) for an extension of this model and an investigation into self-awareness in people with mild cognitive impairment). A clinical observation led to the development of this idea, which suggests that despite being unaware, there may be nonverbal signs of understanding or representation of difficulties (62). One way this can happen is through jokes, symbolic references to dementia-related disabilities that aren’t acknowledged, or compliance with treatment and caregiving practices even if such care isn’t deemed necessary to the person because of ignorance (62).
Other research into the emotional reactivity and behavioral changes in dementia supports the idea that these processes are linked to the implicit self.. It’s been found that people with dementia have an increased level of emotional reactivity when exposed to material about the disease. Dementia-related words were included in Martyr et al. (75)’s modified form of the Stroop test, with a bias toward such words indicated by slower responding. Response times to salient words were faster in PwD and their caregivers than they were to neutral words. Patients’ awareness of their condition had no effect on this effect (75). Emotional interference operates at an automatic unconscious level, and awareness may be retained at an implicit level, based on these findings.
Using emotional reactivity to film material in mild Alzheimer’s disease (AD), researchers have found further evidence of an implicit self in dementia (25). Film clips about dementia and cancer were shown in the negative material, as were neutral and positive ones. PwAD’s reactivity was consistent with the stimuli’s valence despite its reduced responses. Patients with reduced awareness exhibited a higher frequency of negative facial expressions, which is critical. Implicit self-processes, such as “leakage” of involuntary expressions or “reactivity” that bypasses voluntary control, were interpreted as a representation of implicit self-processes (25). In PwAD, emotional reactivity to failure in tasks has also been observed, despite reduced awareness (26).
Damian Jacob Markiewicz Sendler: Observational and experimental studies have yielded evidence of behavioral adaptation. Adaptations such as relying on co-pilots (77) and avoiding driving in unfamiliar environments (77) have been observed in PwAD (76), with self-imposed driving restrictions (78). Researchers studying metacognition found that even though they couldn’t accurately predict performance, PwAD still allocated their study time appropriately (decreasing the amount of time spent on repeated materials), according to Moulin, Perfect, and Jones (79). Effective use of study time suggests some strategic, albeit unnoticed, processing has taken place. According to Geurten et al. (80), despite the fact that PwAD suffers from impairments in explicit metacognition, implicit introspection may be preserved. However, despite a lack of explicit acknowledgement of poor performance, PwAD asked for cues more frequently after incorrect than after correct responses, at levels comparable to controls (80). As a result, tasks are more frequently terminated after a series of errors, suggesting that PwAD persistence in tasks is influenced by current performance (81).
In sum, these findings point to implicit processing of affect, preferences, and knowledge of one’s own self. Long-term implicit affective preference and behavioral change can be observed to what extent is still unclear. Despite the loss of declarative memory for the events that elicited the emotional response, some studies suggest that emotional responses persist in PwAD. In response to films (82), as well as music (83), this has been observed (83). A study by Bomilcar et al. investigated long-term task preferences by having participants perform tests that they’d previously completed either successfully or unsuccessfully a week prior (81). When the first session’s performance was included in statistical models, the second session’s task preference was only observed, suggesting that initial moments of awareness may boost long-term adaptation even if the content is no longer explicitly available.
Autobiographical memory is a critical component of our sense of self, as it is the explicit records of information we have about ourselves. When someone asks us who we are, we frequently turn to our own past experiences for an answer. It’s possible that memory is responsible for the self’s ability to maintain its identity. As such, it is not surprising to learn that a number of theories have emphasized its role in maintaining one’s sense of self. Locke’s original philosophical structure suggests a reciprocal relationship between long-term memory and the self, with memory constraining the self’s structure and the self’s self-modulating encoding and retrieval of long-term memory (84). (85). To better understand the fundamental forms of the self, Damasio proposes an autobiographical self, which is comprised of both past and future thoughts about one’s life (18, 86). Rather, the memory records themselves provide a sense of one’s own autobiographical self, which eliminates the need for any further reification and thus prevents an endless loop from forming.
Damian Sendler
Anosognosia comes in a variety of forms, with primary, executive, and mnemonic anosognosia all being included in the Cognitive Awareness Model (CAM) (71–73). Mnemonic anosognosia may be the most common form of inadvertence in Alzheimer’s disease (AD). As part of the model, a personal data base (PDB) is created to store and update personal information. Normally, experience updates the PDB, but in PwAD, memory impairments prevent this. The concept of a “petrified self” has been proposed when looking at the relationship between the self and memory from the perspective of memory changes and the loss of self-awareness in dementia (4, 87). The term “loss of self-awareness” was coined as a metaphor to describe two key aspects of Alzheimer’s disease (AD) memory loss. Due to the damage to medial temporal lobe structures and anterograde amnesia, the updating of self-concepts would be limited, with PwD incorporating only a limited amount of new information about themselves. Secondly, a core identity in PwD would be supported by long-established autobiographical information, particularly semantic memory, which has been consolidated and has become hippocampal independent. That’s why we came up with the metaphor, which was meant to capture a PwD’s sense of self based on personal history, but one that was less able to adapt to new autobiographical information.
We’ll be looking at the second part of that statement, which refers to a core of self-identity that was formed prior to the onset of the disease and serves as a foundation for one’s self-concept even when memory is impaired. Autobiographical information, including recent and distant memories, is retrieved via a diffuse network of brain regions, including the hippocampus, medial prefrontal and parietal cortexes, as well as other parts of the brain (88, 89). An analogy with the concept of developmental apex points is used to describe this critical self. Consistent across cultures, it has been found that autobiographical memory has a recency effect (a better recall of recent information, as observed in other memory processes) (85). There is also a “reminiscence bump,” which is characterized by higher recall of autobiographical memories from adolescence and early adulthood. Neurobiological and social explanations have been offered for this phenomenon, stressing an early critical phase of the self’s development around early adulthood, which draws on memories from this time period (91, 92). These two levels of explanation are likely to interact.
A temporal gradient for episodic and semantic autobiographical memory has been observed in AD, with better recall of distant vs. recent material (93–96). Some studies have found no differences in memory retrieval across life stages in AD [e.g., Irish and colleagues (97)]. According to Barnabe and colleagues, the method used to solicit memories may have an important impact when there is reminiscence bump (98), with the autobiographical interview (99) leading to lower temporal gradients due to memory allocations across more life periods.
Damien Sendler: Semantic dementia appears to reverse the pattern of autobiographical memory, with better recall of recent as opposed to distant memories (100). This reveals the different neural substrates for memories depending on the degree of their consolidation. An extensive review by Lenzoni and colleagues (87) suggests that episodic memory relies on the hippocampus to be impaired early in AD and to show a steeper gradient than semantic memory, which is only affected in later stages of the condition. Personal semantics, the cognitive store of personal information, appears to be the foundation of the critical self in AD. As a result, childhood and adolescent memories play a significant role in shaping the identity of people living with dementia (PwAD) (100).
In recent studies, the AD patient’s critical self has been examined. People with mild Alzheimer’s disease (AD) rely more on their autobiographical memory than healthy controls to maintain their sense of self continuity when concerned about potential threats to continuity, as demonstrated by El Haj et al (101). People with dementia (PwD) who have a sense of subjective continuity are more likely to have poorer mental health than those who don’t (102). Tippett and colleagues point out that despite deficits in episodic memory (which support phenomenological continuity), self-continuity can be preserved in AD by using semantic memory to construct life narratives (semantic continuity) (103). Better semantic continuity, according to their findings, may be particularly relevant for explanations of self-continuity, while self-persistence confidence may be linked to more general and simplistic continuity explanations (103).
According to extended cognition, human minds and cognitive systems are built on the interaction of embodied agents with the environment. This theory contends that the environment plays a significant role in driving cognition, which is broadly defined to include processes that extend beyond the brain (127). Material vehicles of cognition such as numbers, words and symbols are used to represent environmental processes in this context (128, 129). Media such as photos and films, multi-sensory environments, and evocative objects are all examples of extended cognition that help people remember their past. This includes the PwD’s home environment, where familiarity with objects and architecture may provide support for action, for example.
An extended self can be deduced from this perspective by looking at the relationship between external objects and oneself. McClelland emphasizes agency and sense of control for the incorporation of objects into the self, whereas James suggests that we consider external objects as part of ourselves if they are able to induce affective states (2). (133). Rather than focusing on objects as mere extensions of the self, Belk proposes that they may define one’s sense of identity (134). Individual (e.g., jewelry, car, make-up, and clothing) and family (e.g., home and furnishings) are the first two levels of the extended self, while community (e.g., neighborhood) is the third level (134).
Damian Jacob Sendler
Heersmink (135, 136) argues that the extended self is linked to the autobiographical memory in this sense. To create a narrative self, it is necessary to remember personal memories, and the environment, including objects and people, aids this process. Consequently, we can speculate that the extended self may support and interact with the medial prefrontal and parietal cortices as well as the hippocampus (88, 89).
For people with Parkinson’s disease (PwD), the concept of extended cognition may be particularly relevant. In a classic thought experiment, Clark and Chalmers describe Otto, a man with Alzheimer’s disease, using a notebook as a memory system (128). A person without memory impairments can have access to memories “stored” in a properly functioning semantic memory system and use them to guide their actions, and Otto has this access through his notebook. As an integral part of Otto’s overall memory system, Otto’s notebook serves as both a physical object and an active agent in his thoughts (128, 129).
According to a number of studies, the use of assistive technology can improve memory and other cognitive abilities in people with disabilities (137), as well as summarize results in relation to electronic devices (138). Studies have shown that even in the most severe cases of dementia [e.g., (139)], improvements in various abilities can be seen, but it has been suggested that the focus of the studies should be broadened. A lesser emphasis is placed on enhancing quality of life, addressing behavioral issues, fostering social interaction, and engaging in recreational activities when it comes to most electronic devices (138, 139). Assistive technologies are advocated for PwD in order to promote social interaction and decision-making, both of which have a significant impact on a person’s sense of self in dementia (140).
PwD’s sense of self was examined in depth by Crete-Nishihata et al (130). PwD and mild cognitive impairment (MCI) were used in this study to examine the effects of personal memory technologies (such as multimedia biographies, photos, and home movies). It was found that these external aids facilitated the recall of personal memories. Participants’ self-esteem and apathy were both raised and decreased as a result of the interventions that used external sources as memory triggers (130).
The literature on awareness of cognitive changes provides additional evidence of extended self-processes in dementia. Cross-cultural studies have explored the role of values and contextual factors in self-appraisal of ability, tapping into community and group levels of the extended self (134). People with dementia (PwD) in India are less aware of their memory issues than their relatives, according to a study by Mograbi et al. (141). (142). According to previous studies, dementia and its symptoms in this region are less commonly understood as a health problem, and are more likely to be viewed as a normal part of aging by people with dementia (PwD) and their caregivers (143, 144). This supports the idea that people’s self-reflection, which can be considered an extension of their self, is influenced by the meaning they assign to aging based on external sources (such as culture).
PwD clinical management could benefit greatly from the framework and model proposed in this article, which also points to promising directions for future research. PwD can be better understood in terms of its representation and experience if we consider the role of the body and embodied practices in PwD. A new perspective on caregiving and services can be gained by understanding the continuity of the self in dementia through bodily embodiment. In this view, even in cases of impaired verbal ability (146) and cognitive decline (20, 147–149), the body is seen as capable of experiencing and communicating desires. Every dementia patient is an individual who expresses themselves through and through their body, and the embodied self concept affirms the need for person-centered perspectives that support personhood in this disease (6).
As a result of excessive focus on self-reflectiveness, the notion of diminished agency in PwD may have led to important implications in care for the condition, including in how clinical decision making is allowed and supported… Enhancing PwD’s ability to express their preferences, act, and take responsibility can be achieved in part by helping them develop a stronger sense of agency. To emphasize the importance of caregiver training in assisted autonomy, which enables them to recognize the various stages of dementia and accurately recognize the functional level of PwD (57). Family members will be given formal training in support of PwD activity engagement at home (58). Other methods of assessing the sense of agency in dementia, such as those that engage with individual intersubjectivity directly and explore personal meanings, should be investigated in future research (58).
The concept of a “implicit self” has an effect on how dementia patients are assessed and treated. Implicit processes may be more complex than previously thought, indicating the need to consider this dimension in our interactions with people with disabilities (62). Complex stimuli such as social judgments and decision-making may be affected by PwD’s implicit awareness according to this perspective. If you look at it from the point of view of clinical assessment, this shows how tailoring it can help prevent overly negative emotional reactions or exposure to potentially traumatic experiences. Patients with dementia may benefit from rehabilitative paradigms that rely on their implicit abilities (150). PwD’s implicit preferences, knowledge, and nonverbal behavior are critical in both situations. Testing the effectiveness of new care paradigms and better understanding long-term behavioral changes in dementia are research priorities.
It has been found that core aspects of identity are maintained, which may help to maintain selfhood in dementia, while also pointing to possible interventions that could be implemented. In the case of reminiscence therapy, for example, the past history of a person is taken into consideration. A delicate balancing act between the need for PwD to learn new information and associations and the desire to keep them safe must be done (151). Neuroimaging studies may help predict which individual profiles may have difficulties with declarative aspects of identity through further research into memory consolidation, which may reveal which elements gain hippocampal independence sooner. Consider how autobiographical memory interacts with other self-processes in dementia, such as implicit preferences (like music) and motor habits embodied in procedural memories (e.g., dancing).
Patients with dementia can benefit from the presence of surrogate self-processes. A third-person perspective on one’s own information can be used to foster self-awareness and improve clinical outcomes, for example If interventions are sensitively implemented, they may have important clinical consequences, such as reducing risk-taking and treatment compliance, as well as increasing caregiver stress and burden (152–155). In addition, the preservation of general semantic knowledge could be used to support treatment decisions. Using vignettes in clinical settings, for example, can be expanded to provide additional information and aid in decision making. An in-depth examination of the ways in which perspective-taking and related abilities, like theory of mind and empathy, are impacted by PwD is necessary before these tools can be developed.
Researchers should look into how dementia patients process external stimuli as part of their internal processing. By using multimedia tools (130) and environmental stimuli (131), empirical studies found that external objects can improve memory retrieval in people with Parkinson’s disease (PwD) (131). Future studies should investigate the impact of external aids on selfhood, even though extended cognition theories are routinely used in neuropsychological rehabilitation, for example, compensatory strategies. Dementia patients’ external sources of self-identification should also be considered, to avoid unnecessary losses that could weaken their self-identity (e.g., moving from their own home to a nursing home) (129, 135). Other factors that may have an effect on a person’s sense of personhood in dementia, such as social connectedness and agency, should be included in current research, as previously mentioned (137, 138, 140). Programs aimed at raising public awareness about dementia are especially important in light of the increased importance of the extended self and its ties to social networks.
Finally, the concept of a “emergent self” emphasizes the importance of helping people with disabilities maintain their sense of self by promoting compensation and continuity. There must be room for multiple expressions of self, whether bodily, agentic, implicit or identity-based, and compensation for losses must be sought through surrogate and extended processes. Dementia’s seven forms of self are, of course, not what is being discussed here. We, on the other hand, emphasize the fact that these processes are fueled by a variety of sources for each individual with dementia. The uniqueness of each individual emerges from the combination of these multiple selves and others beyond, making it easier to take a person-centered approach.
