Med Health Care and Philos DOI 10.1007/s11019-014-9545-1

SCIENTIFIC CONTRIBUTION

Eternal sunshine of the spotless mind? An anthropological-ethical framework for understanding and dealing with sexuality in dementia care Lieslot Mahieu • Luc Anckaert • Chris Gastmans

 Springer Science+Business Media Dordrecht 2014

Abstract Contemporary bioethics pays considerable attention to the ethical aspects of dementia care. However, ethical issues of sexuality especially as experienced by institutionalized persons with dementia are often overlooked. The relevant existing ethics literature generally applies an implicit philosophical anthropology that favors the principle of respect for autonomy and the concomitant notion of informed consent. In this article we will illustrate how this way of handling the issue fails in its duty to people with dementia. Our thesis is that a more inclusive philosophical anthropology is needed that also heeds the fate of this growing population. Drawing on the tradition of phenomenology, we will chalk out an anthropological framework that rests on four fundamental characteristics of human existence: the decentered self, human embodiment, being-in-the-world and being-with-others. Our

‘‘Eternal sunshine of the spotless mind’’ is taken from the ‘Eloise to Abelard’ poem written by Alexander Pope in the eighteenth century. The same line was borrowed in 2004 as title for a romantic science fiction film about a couple that (voluntarily) erased each other from their memories when their relationship went wrong. The story told raises questions as to whether (in)voluntary loss of memory pertaining to the realm of broken relationships and former partners is truly liberating or not? This liberating power is exactly what the original poem alludes to. Both the poem and the movie explore the complex relationship between love—the joy and perhaps also the pain it entails—, memory and identity. In doing so it makes you think about the impact dementia or involuntary loss of memory might have on love and relationships. L. Mahieu (&)
C. Gastmans Faculty of Medicine, Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium e-mail: [email protected] L. Anckaert Institute of Philosophy, Centre for Ethics, Social and Political Philosophy, KU Leuven, Leuven, Belgium

aim in this article is thus to tentatively put forward a broader perspective for looking at aged sexuality in institutionalized people with dementia. Hopefully the developed framework will mark the beginning of a new and refreshed ethical reflection on the topic at hand. Keywords Dementia
Ethics
Nursing home
Personhood
Philosophy
Sexuality

Introduction Despite the fact that sexuality is an intrinsic part of human existence, the sexual expression of geriatric residents remains an ethically sensitive issue for care facilities, caregivers and family members. Contemporary beliefs and understandings of later-life sexuality in our western society are burdened down with a long history of sociocultural stereotyping. The most pervasive stereotype rests on the perceived incompatibility of old age and sexuality, putting later-life sexuality under taboo. Sexual expression is usually associated with youth, health and beauty (Gott 2005). Alongside this, the images conjured up by older people range from the infantilized resident of a nursing home dependent on care (Archibald 1998) to parental authority figures whose sex lives are unmentionable by (their) children (Hodson and Skeen 1994). These facts together mean that older people are stigmatized as being either sexually inactive or highly inhibited. As a result, the sexual interest of older nursing home residents might easily be perceived to be a behavior problem rather than an expression of a basic human need for love and intimacy. This in turn can evoke feelings of embarrassment, disgust and fear on the part of caregivers and family members. As a consequence, health care providers and institutions often find themselves

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unprepared when confronted with the sexual longings of older residents (Tarzia et al. 2012). On the one hand, they have a duty to provide residents with the liberty to associate freely with others, which includes opportunities for intimacy and sexual expression. On the other hand, they also must protect residents from possible harm or abuse. Achieving the right balance is a profound ethical challenge, especially when people with dementia are involved as their level of competency slowly erodes. Argument-based ethics literature on sexuality expressed by geriatric residents strongly adheres to the dominant model of biomedical ethics by appealing to the principles of respect for autonomy, beneficence, non-maleficence and justice (Beauchamp and Childress 2009). The principle of respect for autonomy in particular is a predominating factor in assessing the moral permissibility of sexual behavior in institutionalized older people (Mahieu and Gastmans 2012). Respect for autonomy is mostly reduced to the protection of the individuals’ right to self-determination, most visibly expressed in the concept of informed consent. Whether or not sexuality is labeled as appropriate mainly depends on the resident’s capability to consent. This is not at all surprising, bearing in mind that the most common definition of sexual assault focuses on the non-consensuality of the sexual act in question (Rosen et al. 2010). While the principle of respect for autonomy generally leads to an argument in favor of sexual freedom for the elderly population in general, it definitely raises some issues when residents with dementia are involved. Because dementia is marked by progressive deterioration affecting reasoning capabilities, dementia patients fall short of the ideal of the autonomous agent that grounds the principle of respect for autonomy. This in its turn seems to negate their right to sexual engagement. According to Casta-Kaufteil (2004, p. 74), ‘‘the choice to partake in sexual intimacy is transformed and removed from the resident in being medicalized into the framework of supervised informed consent.’’ The current focus on informed consent not only runs the risk of leading us to an autonomy-focused discussion which gives rise to an absolutization of rationality and cognition (Lingler 2003), it also reinforces a divide between those who are suffering from dementia and the healthy others (Sabat et al. 2011). By focusing on their cognitive deficiency, dementia patients are reduced to their patient status and eventually even to the disease that slowly but certainly takes over their whole life. Behavioral changes after the onset of dementia are nevertheless often explained as a result of ‘‘the underlying disease or disturbances in the brain’’ (Widdershoven 2003, p. 103). Such a causal explanation seems to justify a total disregard of the person’s current values and wishes (Widdershoven 2003). In addition, the capacity of people with dementia to make decisions about their daily life and the expression of their own sexuality might easily be

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underestimated (Archibald 2003) when focusing solely on the ideal of human autonomy as expressed in the notion of informed consent. More specifically, Lindsay (2010, p. 314) argues that it seems inappropriate to look upon sexual engagement in specific as a ‘strictly decision-making activity’ since ‘‘sex is not a decision most people make after carefully weighing the pros and cons or the biological implications of their decision.’’ The current focus on competency when dealing with the sexual engagement of geriatric residents not only disregards the sexual longings of people with dementia, it also fails to give an accurate picture of what sexuality entails whether one is competent or not. Sexual engagement is based on more than rational decisionmaking alone. To adequately address these concerns a broader, more inclusive ethical framework is needed. Ethical arguments, principles and frameworks are necessarily founded on a set of assumptions about fundamental human characteristics (Dekkers 2013; Van Heijst 2011). Such anthropology is not just a neutral assessment of what unites us all in humanity. It has clear ethical implications as its depiction of our human condition illustrates what we as human beings must become (Dekkers 2013). Within the ethics literature on sexuality as expressed by geriatric residents, explicit reflection on philosophical anthropology is exceptional (Mahieu and Gastmans 2012). Ethical arguments are offered without any attention being paid to the anthropological premises that ground them which in turn limits the potential area of disagreement. This can be of advantage if the main goal is the application of an ethical theory in practice (Holm 2013). However, such an ‘incompletely theorized agreement’, as Sunstein calls it (Sunstein 1995), also has its disadvantages. It clearly impoverishes the value-loaded content of the ethical debate in question. Providing concrete answers to particular cases of elderly sexuality in institutionalized dementia care practice is not a direct concern here. The aim of the present paper is to map out an explicit anthropology that does not resort to the absolute power of rational decision-making. Since an adequate understanding of human life cannot be attained by limiting one’s account of human activities to rational reflection, we will broaden our scope to other activities and experiences. In doing so we are inspired by the phenomenological tradition and its focus on lived experience. This tradition allows us to develop a broader account on human life by introducing a different perspective on space, time and the world as we ‘live’ them. It consequently offers a variety of concepts that might further enrich the current discourse allowing us to transcend the focus on human cognition and informed consent. We particularly draw our inspiration from authors like Heidegger, Merleau-Ponty, Leder, Levinas, Visker and Zaner. Their phenomenological way of thinking will be linked to the case of aged sexuality in dementia care by what Aristotle (1967) calls the

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methodology of abduction. This methodology has been further developed by Charles Sanders Pierce. By opting for this particular methodological approach, we recognize that there are also other ways to look upon the topic at hand. Abduction as such does not purport unapproachable truth claims. What it does offer however is an exploratory hypothesis for what might be called a ‘curious circumstance’ (Psillos 2011). The conclusions arrived at are adopted ‘‘on the basis that the premises offer some reason to accept [them] as plausible: were it not for the premises, the conclusion[s] would not be considered, even prima facie, plausible; [they] would have been a mere guess’’ (Psillos 2011, p. 125). We here choose to adopt the phenomenological way of thinking as a possible explanation for the current topic as it offers a thicker description of how situations are actually lived though. The explanation offered however has to be looked upon as more descriptive rather than causal. When it comes to the cases we use as illustrations of our way of thinking, no claims to typicality or generalization are made, although we do suspect some experiences to be shared by various dementia sufferers. Other aspects however might be idiosyncratic. As stated by Psillos (2011), abduction does not depend on generalizations. In line with Ashworth and Ashworth (2003, p. 185), we furthermore assume that throughout the different types and stages of dementia,1 people do retain at least a minimum level of intentionality: ‘‘This means that the person with dementia has a world to which their thoughts and actions (limited though they may be) relate.’’ In order to tentatively put forward a broader perspective for looking at aged sexuality in institutionalized people with dementia, we focus on four fundamental characteristics of human existence and their bearing on sexuality in the context of dementia. These characteristics are: the decentered self, human embodiment, being-in-the-world, and being-withothers.

The decentered self Despite the growing body of literature that fights rationalistic theories on personhood (Hughes 2013; Post 1995; Sabat 2005), some authors uphold the view that as dementia progresses a steady erosion of selfhood takes 1

Dementia is an umbrella term describing a wide range of symptoms associated with a decline in mental ability. There are many different types of dementia, each with their own specific disease trajectory, signs, and symptoms. The most common form of dementia is Alzheimer’s Disease (AD). Within this article, however, we choose not to distinguish dementia into its different types and stages unless otherwise mentioned. This however does not mean—in any way— that we wish to deny the variety of dementia types, stages and experiences.

place (den Hartogh 2013) until ultimately there is nothing left (Davis 2004). All individuals with dementia, then, eventually have to come to terms with the ‘‘unbecoming’’ of ‘self’ (Fontana and Smith 1989). In order to reclaim the self in dementia we will appeal to Rudi Visker’s exposition of the decentered self (Visker 1997, 2003, 2005a, b). The impossibility to fully understand ourselves Being unable to recognize yourself in pictures or videotapes is an experience we’re all familiar with. You know for a fact that it is an image of you but it nevertheless feels like you’re looking at someone else—a stranger. This stranger seems familiar and unfamiliar at the same time, it is not really you but it is not someone else either. This experience alludes to the puzzling paradox of our ‘own’ness. As human subjects, we are marked by an inherent strangeness we can never fully grasp. No matter how well we think we know ourselves there is always something that eludes the eye. As such, we are dissociated within ourselves rather than from ourselves or from our self (Visker 1997). Such dissociation ‘‘does not mean the death of the subject, but gives the subject its very structure: the dissociated subject may be a split subject but it is clearly still a subject, albeit one that is ‘decent[e]red’’’ (Visker 1997, p. 156). The self then is not something we can fully possess since it is ‘‘irremediably infected with an otherness’’ (Visker 2005a, p. 433) that despite its fundamental inaccessibility constitutes our ‘own’ness. What exactly then, is this otherness that bestows on us our particular singularity? Who we are as an individual depends on a wide variety of elements that differentiate us from others. Although we never completely coincide with our context, culture or characteristics, we are inescapably attached to them since they are what make us the particular individual that we are. They effect the set of personal values we live by and influence the way in which we experience reality and express ourselves to the outside world. Someone who grew up during the sexual revolution of the sixties probably has a totally different outlook on sexuality than someone who was born decades earlier. We cannot tear ourselves away from our context, culture and characteristics without losing (an essential part) of our singularity. We have no say over the family we grow up in, the dominant assumptions in our society, our skin color, sex, etc., but we still want them to be recognized since they are what make us the particular individual that we are. They are of great meaning to us without us knowing what they exactly mean. There is something about our ‘self’ that continuously escapes us: ‘‘[…] I do not own it, it is not something for me or of me, it is rather something ‘about’ me. It is too close

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for me to conceive or understand it: it is that about my being which makes it my being and not some-one else’s, it is the difference that differentiates me’’ (Visker 2005a, p. 438). As human subjects, we are haunted by lacking the full story of these unreadable inscriptions that at the same time singularize us. This is what Visker (1997, 2003) calls the ‘misery’ of our attachment: at the very core of our singularity we find ourselves attached to something profoundly unknowable. Even though the fact that ‘‘there is no ‘selfhood’ without ‘foreignhood’’’ (Visker 2005a, p. 433) troubles us, the human subject only fully becomes a self when he/she is confronted with this ‘foreignhood’ and shivers (Visker 2005b). As a consequence this otherness that occupies me is situated not only at the heart of human misery, it’s also the source of human dignity (Visker 2003). In order to make the confrontation with the apparent unfoundedness of what is proper to us bearable we need some kind of framework that allows us to localize it (Visker 2005a). We need a narrative, a story that enables us to bind it, to gain at least some ostensible control over it. Not that this very attempt to see a meaning, or do a placing-inperspective could ever lift the unreadability of our ‘own’ness. Integrating it into a world—at best—could help us to live with the intangible, with what is beyond human control but nevertheless shapes our being. The narrative provides a stage—so to speak-, a theater that allows us to sit down and ‘‘watch at a distance what otherwise would shake [us] up so profoundly that it could be the end of [us]’’ (Visker 2005a, p. 438). That’s why we turn to the symbolic frameworks and articulations that are already present within the community to which we (coincidentally) belong (Visker 1997); hoping that in these symbolic articulations our own narrative might strike root. Paul Ricoeur (1991) uses a similar line of reasoning stating that an individual’s self-identity enfolds by means of emplotment. By introducing the idea of narrative identity he clears the way for the mediation between permanence over time and change or as he calls it discordant concordance (Ricoeur 1991). He shows us how one’s identity is constituted by the stories told about oneself and those told by significant others such as family members. Self-knowledge is furthermore dependent on ‘‘larger group identities, which, similar to a personal identity, are partly chosen, partly inherited and constituted by the stories we tell about it’’ (Kaplan 2005, p. 464). As a consequence, the self can only be known indirectly ‘‘through the detour of cultural signs of all sorts, which articulate the self in symbolic mediations […]’’ (Ricoeur 1991, p. 80). We thus spend our life gravitating between two poles: the insusceptible strangeness that bestows on us our singularity on the one hand and its symbolic articulation on the other hand.

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The self in dementia: a tense interplay between continuity and discontinuity Reading Visker’s description of the subject as ‘‘a misplaced note, that doesn’t ring true neither for the other nor for itself—[…] like the person in the picture who is not not myself but also not myself’’ (own translation Visker 2005b, p. 25); we couldn’t help thinking about the resemblance this depiction bears to the lack of recognition and reminiscence that often goes hand in hand with dementia. The fading, mixing up and eventually the loss of remembrances might have a huge effect on everyday lives of people living with dementia and their surroundings. The sexual interest of nursing home residents with dementia might for example stem from mistaking a co-resident or staff member for a spouse (Berger 2000) or from the mere fact that their married life has slipped their mind. As their struggle with memory becomes a persistent companion in their life, the world in which they live turns more and more into an unknown one. Disentangled from the symbolic frameworks and articulations that once enabled them to live with the foreignness of their selfhood, anxiety creeps in. The diagnoses of dementia often forces people to acknowledge that their self-image no longer ties in with reality (Steeman et al. 2006). This awakening makes people worry about their ability to hold on to their personal identity throughout the dementia process. As the disease progresses the insusceptible strangeness that bestows on us our singularity appears to be the only gravitation pole that maintains. As if a veil is being cast over the self, which draws it back into absolute ‘concealment’. This veil however does not shield our foreignness by inscrutable darkness since until the very advanced stage of dementia, old memories may occasionally be stirred up leading to moments of explicit residual continuity (Post 2000). As the disease progresses the darkness nevertheless seems to intensify until the point where the ‘own’ness of the subjects appears to be utterly submerged. As a result dementia leads to a lack of readiness-to-hand not only of the environment but also of oneself.

Human embodiment Within our western society the dementia syndrome in general tends to be seen as an ‘‘irreversible decline in cognitive abilities that causes significant dysfunction’’ (Post 2003, p. 634). Within such a line of reasoning the experience of dementia is explicitly not a bodily one (Phinney and Chesla 2003). Reflecting the Cartesian dualism of mind and body, this perspective fails to offer us a factual picture of how people with dementia experience

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their illness in daily life (Phinney and Chesla 2003). By recognizing how our bodies are ‘‘mentalized through and through’’ (Leder 1990, p. 114) and considering the vital importance of human embodiment, we can reach a more adequate understanding of how the progressive deterioration of reasoning capacities is experienced in and through the lived body. The embodied nature of human experience also relates to intimacy and sexuality. Several studies for example have illustrated the close ties between body, bodyimage, sexuality and intimate relationships (Carpentier and Fortenberry 2010; Cleary and Hegarty 2011). Recent research on the sexual experiences of institutionalized older people with and without dementia furthermore highlights the importance of optimal physical appearance and personal grooming (Bauer et al. 2012). The lived body and its tacit knowledge From the earliest stirrings of human fetal life through old age, individuals find themselves embodied. Whether their bodies are beautiful or arouse social prejudice, whether they are healthy or sick, injured, maybe even faced with a heavy burden, individuals experience the outside world by means of a particular body that they can call their own (Zaner 2003). This subjectively experienced body forms their only access to the outside world. As Merleau-Ponty (2002, p. 192) argues, it is by means of the lived body that the individual can exist in itself. As each of us develops a habitual way of patterning existence, the lived body acquires its own ‘tacit knowledge’ about the world (Merleau-Ponty 2002, pp. 112–170, 175–177). The incorporation of skills into the bodily ‘I can’, leads to the construction of bodily schemes that guide our everyday actions. One of these bodily schemes specifically relates to human sexuality for the simple reason that sexuality counts as a manifestation of personal existence: to be embodied is to be embodied with a certain sex. The character of this patterning is subject to the concrete setting in which our embodiment is shaped. As a consequence, our freedom to engage in a certain activity or project is always limited to our ‘‘social history and, in the wake of this, [our] bodily tolerance to the present situation’’ (Diprose 2002, p. 92). This however does not subvert the fact that the sexual scheme is essentially individual (Merleau-Ponty 2002, p. 180). The various bodily schemes that structure our responses are integrated into a harmonious operation by an intentional arc which, according to Merleau-Ponty (2002, p. 157), ‘‘projects round about us our past, our future, our human setting, our physical, ideological and moral situation […]’’. It is this intentional arc which brings about a common style of bodily actions characteristic to the person in question. This original intentionality does not require cognitive reflection, but rather takes place at a prereflective

level. Consciousness is in the first place not a matter of Cartesian ‘I think’ but of the bodily ‘I can’ (Merleau-Ponty 2002, p.159); this means intentional embodied actions— such as sexual orientation—are not of the order of cognitive understanding (Merleau-Ponty 2002, p. 181) nor can they be reduced to automatic and unconscious biological processes (Slatman et al. 2010). Instead, the ‘I can’ implies a successful dialogue with one’s situation or environment. The intentional arc which in a certain sense subtends our individuality, however, might get disorientated by illness (Merleau-Ponty 2002, p. 157). This might occur, for example, in context of dementia. The body as an obstinate force in times of illness As human beings we do not just ‘have’ a body, we exist through it. In this sense we could argue that our body is ‘‘the most abiding and inescapable presence’’ in our lives (Leder 1990, p. 1). The fact that it is always there, however, does not necessarily imply that we are—without any interruption—consciously aware of its presence. The exact opposite seems to be true: as long as our body functions as it is supposed to, we’re inclined to take it for granted. In the case of health our body seems to quietly disappear as our attention is primarily oriented towards the outside world. This, nevertheless, changes as soon as illness sets in. Insofar as a person’s body tends to disappear when functioning as he/she expects it to, it particularly seizes their awareness at times of disturbance (Leder 1990, pp. 69–99, 126–148). At moments of breakdown, the body appears as a thematic focus, precisely because it is experienced as the very absence of a desired or ordinary state. The sick body may, consequently, be experienced as that which stands in the way, ‘‘an obstinate force interfering with our projects’’ (Leder 1990, p. 84). All of a sudden, our own corporeality gives voice to a foreign will preventing us from muting it with the mundane. As a consequence, the image we have of ourselves is painfully thrown into question, especially when dealing with an illness as intrusive as dementia. The disruption that causes the body to manifest itself as bearing the imprint of otherness does not have to be actual. The body might also emerge as alien with the realization of potential future disruption (Leder 1990, p. 141). It goes without saying that this might also cover the experience of people receiving an early diagnosis of dementia. The body, furthermore, does not only surface as an obstinate force in the face of illness or pain. The same thematic focus also appears in puberty and old age as both phases in life include significant alterations regarding one’s body structure, appearance and abilities (Leder 1990, pp. 89–90). Although old age is in itself not dysfunctional, the accompanied physical changes render problematic what was previously a matter of course.

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The lived body in dementia Our body has a strong hold over our personal existence. But what does this all mean in the case of dementia? Does the idea of the lived body have any bearing at all on people with dementia? According to Wim Dekkers (2004) it certainly does, given that Merleau-Ponty’s way of thinking about the lived body has to be first of all situated at the ontological level of being human, regardless of whether the human beings involved are healthy or sick, rationally intact or cognitively challenged. As a consequence, the notion of the lived body definitely makes sense when talking about (and to) people with dementia. The only presumption we have to make, according to Dekkers (2004), is that dementia does not effect the outright scattering of selfhood until nothing is left. As the disease progresses, not only the mind of someone with dementia but also their physical body gradually deteriorates. Their existence as an embodied person gets affected at its core, but their lived body nevertheless remains their only way of being-to-the-world, their only access to what is outside. In people with dementia, cognitive capabilities gradually decline until the moment when they are no longer competent to make rational decisions. This loss of cognitive capabilities, however, does not necessarily involve the disappearance of the tacit knowledge the body has collected throughout the person’s life. This is exactly why the Dutch foundation, Stichting Humanitas, has set up memories museums where older people can relive their youth surrounded by furniture, appliances, tools, images, scents and noises from last century. The confrontation with old-time domestic objects helps people with dementia to open up tacit knowledge they collected. Reengaging people with dementia in old hobbies or former activities often has a soothing effect as well for the same reason that it allows them to reconnect with what is (still) familiar. An old man with dementia who worked in post office for more than 40 years, for example, might find it very reassuring to spend his day sorting letters and other documents. Since bodily intentional actions are not of a cognitive order, they may weather the storm brought on by dementia. That is why, every now and then, family members or other significant others can catch a glimpse of who the person with dementia used to be. Until the very advanced stages of dementia, former characteristics of the person concerned might occasionally emerge by as simple a gesture as putting on one’s old hat, humming a familiar tune etc. Even when people with dementia might no longer be able to initiate a song, they might be able to join in the singing and recall the text. This however does not necessarily mean that the past and the emotions attached to it are evoked as well. In singing along people with dementia clearly manage to retain at least some intentionality/

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agency. Ashworth and Ashworth (2003) illustrate how someone with AD might get caught up in a bodily intention. According to them the clearest examples of this pertain to the social realm in which dexterous actions are called forth. A person whose arms are held out for dancing [or hugging] for example might receive a ready response (Ashworth and Ashworth 2003). Despite this continuity, there is no denying that the intentional arc that suspends a person’s identity might become affected by the disease, causing a sudden change in behavior. Even though the body’s capacity to build up a new repertoire of routine actions disappears as the body’s capacity to incorporate new information gradually diminishes, some routine actions might remain stored in the lived body of people with dementia. Within this line of reasoning Lichtenberg argues that the decision to be sexually intimate is primarily based on ‘old learning’. According to him it is one of the earliest learned behaviors (Lichtenberg 1997).

Being-in-the-world The materiality of our human embodiment necessarily locates us in space. In as much as we are embodied beings, our being is a ‘being-from-the-earth’ (Verhack 2000). The fact that we as human beings are not merely objects amidst other determinate objects nevertheless indicates that our being cannot be reduced to its mere materiality as ‘being-from-the-earth’. Our body is not just in space; it inhabits space and relates to it (Merleau-Ponty 2002, p. 161). As a consequence our being is not merely a ‘being-from-the-world’ (‘being-from-theearth’), but a ‘being-in-the-world’ (Verhack 2000, p. 53). The mineness of my being-in-the-world Since we are more than merely objects, our being-in-theworld should not be considered a present-at-hand property (Heidegger 2001, pp. 52–62). As one of our characteristics of being, being-in-the-world has to be defined in terms of existentiality as a possible way for us to be (Heidegger 2001, p. 54). Our being is always ours to be in one way or another and not someone else’s. Because every human existence is characterized by what Heidegger calls mineness [Jemeinigkeit], a personal pronoun has to be used addressing it: ‘I am’, ‘you are’ (Heidegger 2001, p. 42). In each case my being, my existence, is mine to be and beingin-the-world is one of its fundamental characteristics. It is its engagement, its opening-out-onto-the-world (Zaner 1964). As we already indicated before, it is by means of our body that we are able to manifest ourselves to the outside world, a world that is always already there. By using the term ‘world’, we do not refer to the planet earth or the total sum of all things in existence. When we

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talk about the ‘world’, we relate to a dynamic set of meaning-giving relations. Essential to these relations is the significance accrued to things by their relatedness to human interests and possibilities (Heidegger 2001, pp. 63–110). As a consequence a wide variety of worlds is called into existence given that each set of relations constitutes its own world. These worlds may overlap but they all address an arena of the individual’s concerns and interests. ‘‘To act on the world is to disclose the world as a contexture of possible ways-to-be […]’’ (Zaner 1964, p. 182). Opened out onto the world, the lived body establishes a tacit knowledge of its surroundings. It comprehends the world without depending on rational cognition and representations (Merleau-Ponty 2002). ‘‘The world is not what I think, but what I live through’’ (Merleau-Ponty 2002, p. xviii). Our basic way of engaging in the world is through smooth flow habits and everyday practices that embody our concerns and commitments and are based on our body’s silent knowledge. This profound—often unconscious—familiarity renders the outside world into a world with which I dwell in intimacy. As I go through the day and everything goes as it is supposed to, I do not notice my body neither do I notice the bed in which I sleep, the clothes I wear, the office I sit in to do my work …. As a consequence, it is not only our body that disappears from thematic awareness during everyday life; entire regions of our world seem to fade away. Bodily change as well as a change of scenery might necessitate the acquirement of new habits. The ailments of old age and admission into a nursing home, might challenge the way in which individuals organize daily life. It urges them to readjust. The renewal of habitual bodily schemes involves an alteration of the significance attached to things in the outside world. This change in significance is based on ‘‘the interplay of human interests, the relations that they generate, and the availability of material’’ (Sheehan 2005, p. 359). According to Merleau-Ponty (2002, p. 166), getting used to a hat, a car or a stick is ‘‘to be transplanted into them, or conversely, to incorporate them into the bulk of our own body.’’ For someone who walks with difficulty, the cane he/she ends up using might grow into an extension of his/her own body regardless of their former routines. Living with dementia: a trip into ‘‘no-man’s-land’’ What happens when both our body and our world become obtrusive as a result of dementia? How does dementia affect our way of being-in-the-world? Although relatively little research has been devoted to the way in which dementia is experienced in and through the lived body that constitutes our way of being-in-the-world, there are some studies that address this topic by illustrating the

experienced breakdown of embodied habits and practices. According to Phinney and Chesla (2003), Alzheimer’s is experienced as the breakdown of bodily smooth flow; a breakdown which eventually brings about the disruption of one’s taken-for-granted way of being-in-the-world. Familiar entities no longer appear as ready-to-hand. By becoming merely present-at-hand the entire Umwelt gets stripped of its everyday meaning. The lack of readiness-to-hand of oneself (body as well as mind) and the environment carries an awkward feeling of estrangement in its wake. The world that we can call our own is constituted by the meaningful presence of ourselves and other entities within the realm of our own experience. When this meaningful presence disappears, it seems to tear our world apart making it virtually impossible to sustain our habitual way of acting. As a consequence, people with dementia might experience their world as being shattered. The everydayness of ready-tohand things that grounded their previous engagement to the world seems to make room for a profound uncanniness. As Schillmeier (2009, p. 149) describes it, their world ‘‘is becoming lost within the spell of uncertainty’’. Living with the plain presence of present-to-hand objects they feel displaced, alienated, out of tune…lost. This experience of being lost comes about in different areas of human existence. Empirical research conducted by Phinney and Chesla (2003), illustrates how people with AD find themselves in a world that does not make sense. ‘Being lost in the world of space’ is the obvious example: As the neighborhood loses its familiarity, the fear of getting lost emerges. But people might also experience ‘being lost in the world of equipment’. They find themselves acting ‘‘(with)in a very real present-at-hand environment, which, precisely because it is just present, means nothing’’ to them (Schillmeier 2009, p. 149). This loss of meaning might result in loss of function of everyday objects. This means that if a person with AD or another form of dementia looks for an object to fulfill a specific function, they may not be able to find it even if they see it right in front of them (Phinney and Chesla 2003). The experience of being lost in the unknown furthermore manifests itself in the world of activity. Our involvement in the world of practical activity is always characterized by some kind of outer-directed concern ‘‘which propels and organizes the body’s activity, making it purposive’’ (Phinney and Chesla 2003, p. 291). In the case of dementia, however, the lived body might lose its sense of purpose, leading to actions that from an observer’s point of view no longer appear smooth, but confused (Phinney and Chesla 2003). The behavior of people with dementia may be construed as sexually explicit and inappropriate by outsiders, when in fact it may have a completely different purpose or meaning (Kuhn et al. 1998). In addition, people with dementia may become confused or disoriented during sexual activity (Berger

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2000) or a moment of clearness may overcome them leading to the realization that they are sharing their bed with a total stranger (Post 2000). Amidst the unfamiliar, people with dementia might feel utterly disorientated whereby anxiety creeps in. Their experience of loss potentially touches upon so many aspects of human life that some of them might find themselves faced with, what Schillmeier (2009) calls, a crisis of existential orientation. The profound feeling of uncanniness coupled with the resulting anxiety might lead people with dementia to eventually become closed in on themselves. According to Schillmeier (2009, p. 152), the individualizing effect this causes, is ‘‘not only a disturbing fact of individual and social life but also, at the same time, a creative moment that opens up the possibilities (and limits) of the potentiality-of-being’’. The often devastating experience of being totally and utterly lost does not have to reflect the end of the human self; safeguarding diversity it might also present itself as a possible moment of change. Even in the case of dementia, ‘‘meaning-making remains the vehicle for people to orient themselves and to find their way in life’’ (Widdershoven and Berghmans 2006, p. 180). Cut-off from social routines and their taken for granted way of being-in-the-world, people with dementia are often perceived by others as inhabiting their ‘own world’. The breakdown of a shared life-world of actions and reactions might bestow a certain strangeness upon the behavior of people with dementia since it no longer seems to fit in with its surroundings (Widdershoven and Berghmans 2006). Within their own world they seem to live highly ‘independently’ as contact with their surroundings seems to be anything but self-evident. At the same time they appear extremely vulnerable, helpless and in need of care (Schillmeier 2009). Being totally oblivious for their surroundings, people with dementia might masturbate or strip in public areas without realizing that for a lot of outsiders this behavior is considered to be unacceptable exactly because it does not occur in privacy. Living within his/her ‘own world’, the location might seem to be totally irrelevant to the person with dementia. Ashworth and Ashworth (2003), illustrate how some places may be experienced as ‘boundariless’ by people with AD elevating all possible constraints of modesty or privacy.

Being-with-others Human existence at first is not a sort of individualized way of being-in-the-world (Groenhout 2004). From conception till after death human existence genuinely manifests itself as being-in-the-world-with-others. As Joseph Selling (1998, p. 101) states: ‘‘No human person springs into existence spontaneously but is always born into a culture

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that consists of other human persons.’’ As such every human person is basically a ‘person-in-relation’ (Selling 1998), both to concrete other fellow human beings and socio-cultural communities/groups. The most personal relation however is the one we have with other individuals since it is in these relationships that culture is mediated to us. The alterity of the other and its ethical appeal to care To be human is to find oneself always already embedded in a complex web of unchosen relationships one cannot define nor control. We always already find ourselves connected to others who, ‘‘while like me in their humanity, are fundamentally […] other than me’’ (Groenhout 2004, p. 80). The other is not someone I can define or know by prior experience nor can I assume him/her to be identical to me. The other remains, as Levinas (1961, pp. 44–49, 168–194) calls it, infinitely foreign. This irrefutable feature of human existence is far from normatively neutral. It entails an ethical demand that precedes our own freedom. The fact that every human life is presented in interdependence bestows upon us a kind of moral responsibility that is not freely chosen; it entails a moral obligation that is not a product of self-consciousness or deliberate human endeavor (Nortvedt 1996). It is, instead, the actual and concrete physical appearance of the other that calls us to moral responsibility. The human body thus functions as a means of communication and human encounter. Having a body means that we as human beings can meet the eye of our fellow human beings. It is through our corporeality that we relate to the world and to others. Being embodied, however, also makes us susceptible to objectification by other persons. According to MerleauPonty (2002, p. 193), saying ‘‘that I have a body is […] a way of saying that I can be seen as an object and that I try to be seen as a subject’’. Sartre (1943, pp. 310–364) illustrates this by referring to the experience one has of being caught in the act of looking at someone through a keyhole. The noise of approaching footsteps, a vague prelude to impending doom, makes me aware of the vulnerability of my embodiedness to the look of the other. My experience of objectification by the gaze of the other is accompanied by my experience of the other as being a subject instead of an object. This does not mean that my initial gaze was not objectifying the person at the other side of the door. The body’s susceptibility to the objectifying looks of others is a constant threat to the individual’s freedom and autonomy. In his chapter on The Body in its Sexual Being, Merleau-Ponty (2002, pp. 178–201) clearly links sexuality to the ambiguity of being both object and subject; for sexual activity allows us to acquaint ourselves ‘‘with the human lot in its most general aspects of

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autonomy and dependence’’ (Merleau-ponty 2002, p. 184) The other as such is always a being at risk. Our body does not only make us vulnerable to physical harm it also places us at the risk of objectification. The embodied other appears as a being who can be killed or destroyed at any given moment (Levinas 1961, pp. 44–49, 168–195, 233–244). This very vulnerability is the source of our moral responsibility towards the other, who is just like me in his/her humanity. Called to an infinite ethical responsibility we are doomed to fail (Levinas 1961, pp. 195–225; 1977, pp. 122–148). That is exactly why the ‘is’ and the ‘ought to’ can never fully coincide. The finiteness that characterizes human existence enables us to realize heaven on earth but it does not have to paralyze us either. Sexual relationships can only be situated within and out of the ethical demand for responsibility entailed by the other’s otherness. Ethics consequently does not only precede social questions; it also precedes eroticism (Levinas 1977, pp. 122–148) raising a potential case against for example indiscriminate sexual behavior. The struggle of maintaining relationships in dementia In the case of dementia, human intersubjectivity is severely challenged even though one gets more and more dependent on the help of others as the disease progresses. Especially in advanced dementia the notion of intersubjectivity might be experienced as problematic because of ‘‘the irreducible asymmetry of such relationships’’ (Groenhout 2004, p. 97). But even people living with early-stage dementia often struggle with the loss of meaningful relationships as their communication skills slowly deteriorate (Phinney and Chesla 2003). This however does not wipe out the ethical demand that follows from their concrete bodily presence. The mere presence of another human person urges us to recognize the other as a unique, irreplaceable existence at risk of utter destruction. I have to first recognize the humanity of the other and the moral demands it bestows upon me, in order to distance myself from it. The finiteness of human existence renders our endless moral responsibility towards the other into a horizon for us to pursue within the bounds of possibility. As a consequence, caring for a fellow human being does not entail boundless self-sacrifice. As Tove Pettersen (2012, p. 377) puts it, mature care is situated between two extremes: ‘‘The excessive extreme is selflessness, the deficient selfishness’’. It seems as if mature morality can only be reached when one is able to consider both his/her own interests and the interests of the other. Taking this into consideration some authors plead for the right to opt out from daily care when the sexual behavior of a resident is inevitable and morally or religiously offensive (Berger 2000; Hajjar and Kamel 2003). This opting-out right, however, should not be seen as an easy way of escaping one’s responsibility.

Moving to the perspective of older people with dementia, empirical research has shown that nursing homes are often experienced as being unconductive to residents’ sexual expression (Bauer et al. 2012). Important barriers to sexual expression noted by residents are the potential gaze of staff, family members and residents, the overall lack of privacy and the latent presence of social prejudice against aged sexuality.

A new anthropological perspective for looking at sexuality in dementia care Ethical reflections on the intimate life of people with dementia focuse primarily on their presumed lack of sexual decision-making capacity. This focus seems to stem from an anthropology that concentrates too strongly on human cognition. Within this article we argue that such a focus is too narrow and attempt to broaden the scope of the ethical discourse on sexuality in dementia by exploring different anthropological features and their bearing upon both human sexuality and dementia. The four features we discussed—namely the decentered self, human embodiment, being-in the world and being-with others—all seem to have one common denominator. They all allude to the inherent strangeness or unreadability that marks our human existence. Not only is our selfhood marked by an inaccessible otherness, the same goes for our body which in times of dysfunction appears to be fully mine and nevertheless utterly foreign. When the bodily smooth flow is interrupted, the body is experienced as an obstinate force that although it constitutes the very medium whereby I can manifest myself to the outside world stands opposed to my‘self’. The paradoxical nature of our embodiment is further reinforced by the close intertwining of the body-subject and the body-object. The strained relationship between the body as an object for others and a subject for myself, points us to the fundamental ambiguity that grounds human relationality in general and sexual relationships in particular. Because of this close intertwining our body is always a body at risk. Like me in his/her humanity, the other necessarily confronts me as a being at risk. This very vulnerability is the source of our moral responsibility towards the other who—despites his/her humanity—remains infinitely foreign. The breakdown of bodily smooth flow might also bring about the disappearance of the world as it loses its meaning. Amidst this crisis of existential orientation the fundamental elusiveness of the world’s reality (re)surfaces. Despite of what we as human beings like to believe—and maybe even need to believe—, we are not in full command of the world, others, our body and eventually even ourselves. Our immanent vulnerability urges upon us the need of mastering contingency. To feel secure we need to

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have—at least—the impression that we are in control of our lives, we need some kind of order to grasp the uncontrolled and make it comprehendible to reason. The current focus on negative freedom and decision-making capacity when it comes to the sexual behavior of people with dementia perfectly illustrates this deep human longing to overcome contingency. The anthropological framework we sketched illustrates how grasping the world, the self [body and mind], and the future is not quite the whole story. As Dekkers (2001, p. 190) states, real autonomy stands for ‘‘being aware of the fragility of human existence and for accepting one’s own mortality [as well as one’s lived through reality] without feeling the necessity to try to actively influence the future’’. Being truly independent then has to do with incorporating the elusiveness of human existence in daily life. It is walking the thin line between ‘own’ness and ‘other’ness, meaning and disorientation, continuity and discontinuity. Applied to dementia care, this results in the fact that the sexual behavior of people with dementia should not be primarily considered a medical or behavioral problem stemming from a lack of cognitive capacity but as a lived expression of being a decentered and embodied being-in-the-world with others. Sexual expression in the context of dementia often prompts a protective response. An intense focus on maintaining safety, however, might result in disregarding forms of sexual intimacy that are in essence consistent with what is considered to be normal interpersonal behavior for people without dementia. Not only is the human body always a body at risk, intimacy and sexuality furthermore are an essential part of human existence from cradle to grave. It consequently seems appropriate not to overestimate the vulnerability of people with dementia and to raise the threshold for safeguarding when dealing with issues of intimacy and sexuality in dementia care. In future research, this alternative anthropological framework needs to be translated into practical considerations that might assist caregivers in adequately dealing with the sexual longings of institutionalized people with dementia. The developed framework offers us a secure foundation to thoroughly investigate the practical meaning of a wide variety of ethically relevant concepts such as embodiment, singularity, vulnerability, relationality, responsibility, ambiguity, etc. without lapsing into the vagueness of anthropological implicitness. In doing so, this framework will hopefully mark the beginning of a new and refreshed ethical reflection on sexuality expressed by institutionalized older people with dementia. Acknowledgments The authors would like to express their gratitude to Prof. dr. Yvonne Denier and the anonymous reviewers for their guiding assistance in bringing this paper to higher level.

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