Respect for autonomy

The principle of respect for autonomy is founded upon the aspirational ideal of the autonomous agent. As an autonomous agent, one is entitled to act in accordance with a freely self-chosen and informed plan. Within the included literature, autonomy is mainly described as the right to self-determination (Illhardt, Reference Illhardt1992; Post, Reference Post1995; Feldkamp, Reference Feldkamp2003; Everett, Reference Everett2007; Reference Everett2008) and individual choice (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Post, Reference Post1995; Lichtenberg, Reference Lichtenberg1997; Kuhn, Reference Kuhn2002; Tenenbaum, Reference Tenenbaum2009). According to Illhardt (Reference Illhardt1992), sexuality expresses the human capability to shape one's own life. It therefore functions as a measuring standard for the degree of autonomy preserved amidst the physical and psychological deterioration accompanying the aging process.

Informed consent. Within clinical practice, the principle of respect for autonomy finds its reflection in the ethical concept of informed consent. Based upon our study of the included literature, this concept plays a key role in the debate on aged sexuality. Consent measures have been designed to enable autonomous choice by patients and to protect these patients from harm. The determination of an “all or nothing” global competence, however, is not likely to be a useful approach (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Lichtenberg, Reference Lichtenberg1997; Anonymous, 2001; Kuhn, Reference Kuhn2002; Metzger and Gillick, Reference Metzger and Gillick2002; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Everett, Reference Everett2007; Reference Everett2008; Tenenbaum, Reference Tenenbaum2009). A considerable number of authors therefore urge the recognition of partial (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Kuhn, Reference Kuhn2002), functional (Lichtenberg, Reference Lichtenberg1997; Everett, Reference Everett2007; Reference Everett2008; Tenenbaum, Reference Tenenbaum2009), or decision-specific competency (Metzger and Gillick, Reference Metzger and Gillick2002). A person who is incapable of giving informed consent for medical treatment, because of the complexity and the novelty of the information given, might be capable of giving informed consent to engage in a sexual relationship, a decision that is based more on old learning (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990). After all, according to Lichtenberg (Reference Lichtenberg1997, p. 6), sexuality is one of “the earliest learned behaviors.” As a result, determinations of incapability should always pertain to a specific area of a person's life (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Lichtenberg, Reference Lichtenberg1997; Anonymous, 2001; Kuhn, Reference Kuhn2002; Hajjar and Kamel, Reference Hajjar and Kamel2003; Gordon and Sokolowski, Reference Gordon and Sokolowski2004; Everett, Reference Everett2007; Reference Everett2008; Tenenbaum, Reference Tenenbaum2009). Lichtenberg and Strzepek (Reference Lichtenberg and Strzepek1990) identified three essential elements to assess a patient's competency to engage in an intimate sexual relationship. They especially focused on the assessment of institutionalized dementia patients. First of all, the patient has to be aware of the relationship. A second element is the patient's awareness of the benefits and risks associated with having a sexual relationship. Thirdly, the patient involved must not be physically or psychologically coerced in any way.

Berger (Reference Berger2000) argues that the voluntariness to engage in a sexual relationship rests on the absence of undue influences and the authenticity of personhood. Similarly, Lichtenberg (Reference Lichtenberg1997) and Lichtenberg and Strzepek (Reference Lichtenberg and Strzepek1990) refer to the authenticity of choice. In the case of dementia, some of the included articles, however, make a clear distinction between the “then” self that existed prior to the onset of dementia, and the “now” self that lives almost entirely in the present, without any connection to the past (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Post, Reference Post1995; Reference Post2000; Reference Post2001; Lichtenberg, Reference Lichtenberg1997; Berger, Reference Berger2000; Kuhn, Reference Kuhn2002; Archibald, Reference Archibald2003; Gordon and Sokolowski, Reference Gordon and Sokolowski2004; Tenenbaum, Reference Tenenbaum2009). This distinction definitely calls into question the concept of authenticity of personhood for dementia patients. After all, who is the authentic self following the onset of dementia? In line with this question, two competing notions are offered that may guide the decision-making process in case of cognitive impairment (Berger, Reference Berger2000). These notions are discussed at length in six of the included studies (Post, Reference Post1995; Reference Post2000; Reference Post2001; Berger, Reference Berger2000; Gordon and Sokolowski, Reference Gordon and Sokolowski2004; Tenenbaum, Reference Tenenbaum2009). Precedent autonomy or critical interest, on the one hand, underlines the stewardship responsibility of the “then” self for the journey into forgetfulness. As a consequence, post-dementia decisions should be based on historical lifetime values and beliefs. If the former self is authentic, sexual behavior that does not comply with the identity-defining values of the past, may be deemed offensive to what is understood to be one's dignity (Berger, Reference Berger2000). Respecting prior values, however, could prevent the current disabled patient from having his/her needs met. Value histories, additionally, carry the risk of being biased by the own values and beliefs of family members and old-time friends. The concept of experiential interest on the other hand pleads for an autonomy grounded in the moral significance of the “now” self sensation. Contemporary preferences, needs and desires, coupled with the present well-being of the dementia patient should be the main focus area of substituted decision-making. Given the possible identity changes, decisions should be based on the patient's best interests (Tenenbaum, Reference Tenenbaum2009). This, however, poses a criterion problem as it is almost impossible for a substitute decision-maker to take his or her own values and beliefs out of the decision-making process (Tenenbaum, Reference Tenenbaum2009). Both competing notions are therefore accompanied by bias risks. According to Tenenbaum (Reference Tenenbaum2009), critical and experiential interests should be balanced against each other. Tenenbaum is in fact convinced that the value of an intimate relationship will generally outweigh the value of the critical interests affected.

Unlike most authors, Post (Reference Post2001, p. 84) finds it “utter nonsense to strongly bifurcate the self into ‘then’ and ‘now’,” as if no continuities are manifest. “While it is intellectually interesting as a ‘thought experiment’ to bifurcate the self into ‘then’ and ‘now,’ those who have wrongly asserted this radical discontinuity of personal identity in order to develop an ethics in the pure present that takes no account of past journey have been soundly refuted scientifically, metaphysically and morally”(Post, Reference Post2000, p. 316). As a consequence, the journey into forgetfulness does not undo the historical character of the “now” self. This shows why it is so important for caregivers to be aware of a patient's life story. Until the very advanced and even terminal stage of dementia, old memories may occasionally be stirred up leading to emotional moments of relational recollection. These moments of explicit residual continuity may arouse feelings of shame and regret as one becomes conscious of sharing an intimate relationship with a total stranger. According to Post (Reference Post2000; Reference Post2001), the apparent benefits of sexual intimacy make no odds against the risk of causing emotionally devastating shame or guilt. By the time the terminal stage of dementia is reached, the physical decay is so far advanced that it is no longer credible to speak of “sexual needs” (Post, Reference Post2000).

Howe (Reference Howe2000), for his part, encourages elderly persons to engage in discussing sexual advance directives prior to the onset of cognitive deterioration. Metzger and Gillick (Reference Metzger and Gillick2002) expect participation in an advance sexual directives initiative to be quite low, although it might help to determine the appropriateness of those sexual behaviors which could be easily categorized as a form of sexual disinhibition. Uninhibited sexual behavior is a rare but possible symptom of dementia. In common with Metzger and Gillick (Reference Metzger and Gillick2002), Berger (Reference Berger2000) points out that there is a fine dividing line between pathological and non-pathological sexual interest in dementia patients.

The authenticity of personhood, however, is not the only concern when a patient with cognitive impairment engages in a sexual relationship. Owing to a sudden decline in functional competence or disorientation, consent can become ambiguous (Berger, Reference Berger2000; Howe, Reference Howe2000; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Gordon and Sokolowski, Reference Gordon and Sokolowski2004; Tenenbaum, Reference Tenenbaum2009). In addition, the capacities of people with dementia are easily underestimated (Archibald, Reference Archibald2003). Based solely on the principle of autonomy one can easily jump to the conclusion that dementia patients are non-autonomous agents and therefore incapable of consenting to a sexually intimate relationship (Lingler, Reference Lingler2004). According to Andrew Casta-Kaufteil (Reference Casta-Kaufteil2003–2004, 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.”

Privacy. Respect for autonomy does not confine itself to the concept of informed consent. It also extends to specific autonomy-related rights, such as privacy (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Lichtenberg, Reference Lichtenberg1997; Mattiasson and Hemberg, Reference Mattiasson and Hemberg1998; Berger, Reference Berger2000; Howe, Reference Howe2000; Metzger and Gillick, Reference Metzger and Gillick2002; Archibald, Reference Archibald2003; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Feldkamp, Reference Feldkamp2003; Hajjar and Kamel, Reference Hajjar and Kamel2003; Gordon and Sokolowski, Reference Gordon and Sokolowski2004; Kamel and Hajjar, Reference Kamel and Hajjar2004; Tabak and Shemesh-Kigli, Reference Tabak and Shemesh-Kigli2006; Tenenbaum, Reference Tenenbaum2009). When it comes to sexuality within a nursing home environment, the general right to privacy can be subdivided into three different categories (Berger, Reference Berger2000): physical privacy (Berger, Reference Berger2000; Feldkamp, Reference Feldkamp2003; Gordon and Sokolowski, Reference Gordon and Sokolowski2004), privacy of information (Berger, Reference Berger2000; Feldkamp, Reference Feldkamp2003; Gordon and Sokolowski, Reference Gordon and Sokolowski2004), and privacy of association (Berger, Reference Berger2000; Kuhn, Reference Kuhn2002; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Feldkamp, Reference Feldkamp2003; Hajjar and Kamel, Reference Hajjar and Kamel2003; Kamel and Hajjar, Reference Kamel and Hajjar2004). A number of authors agree that every reasonable effort should be made to uphold these rights as long as it does not put residents at risk of unreasonable harm (Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Berger, Reference Berger2000; Anonymous, 2001; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Hajjar and Kamel, Reference Hajjar and Kamel2003; Kamel and Hajjar, Reference Kamel and Hajjar2004; Tabak and Shemesh-Kigli, Reference Tabak and Shemesh-Kigli2006; Tenenbaum, Reference Tenenbaum2009).

According to Archibald (Reference Archibald2003), family involvement is an important ethical issue when elderly people with dementia are seeking to engage in a sexual relationship. While most authors agree on the relevancy of this topic, there seems to be considerable disagreement on whether or not a resident's sexual behavior should be disclosed to family members. Metzger and Gillick (Reference Metzger and Gillick2002) sharply question the family's need to be acquainted with a resident's sexual behavior; since providing such information compromises the resident's right to autonomy. Concerning the role of health care proxies, Metzger and Gillick (Reference Metzger and Gillick2002) state that, as an agent, the proxy is authorized to make medical decisions with the patient's autonomy in mind. It is nevertheless doubtful whether informing health care proxies about the sexual longings of patients would still safeguard residents' autonomy. The same question is also raised by Kuhn (Reference Kuhn2002). According to him it is highly debatable whether surrogate decision-making also concerns the personal realm of sexual intimacy. Feldkamp (Reference Feldkamp2003), for his part, argues that the resident's consent is a necessary condition for informing family members about his/her sexual activities. Without consent, the resident's right to privacy of information should be honored. Four authors adopt a more moderate course stating that family members only have to be involved when the risk for potential harm outweighs the resident's right to privacy and confidentiality (Hajjar and Kamel, Reference Hajjar and Kamel2003; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Gordon and Sokolowski, Reference Gordon and Sokolowski2004; Kamel and Hajjar, Reference Kamel and Hajjar2004). In addition to this, some authors highlight the necessity of family involvement whether the resident is deemed competent to consent to a sexual relationship or not (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Lichtenberg, Reference Lichtenberg1997; Berger, Reference Berger2000; Tabak and Shemesh-Kigli, Reference Tabak and Shemesh-Kigli2006). According to Berger (Reference Berger2000), family members should be drawn into the picture to maintain at least a minimal level of personal commitment. As the resident's health deteriorates, this will enable the family to continue to act in the patient's best interests. Family members may furthermore provide “an additional perspective for advocacy”(Berger, Reference Berger2000, p. 312).

Beneficence

The included literature generally circumscribes the principle of beneficence as the obligation to do and promote good (Post, Reference Post1995; Reference Post2000; Lichtenberg, Reference Lichtenberg1997; Mattiasson and Hemberg, Reference Mattiasson and Hemberg1998; Berger, Reference Berger2000; Kuhn, Reference Kuhn2002). Within the field of biomedical ethics, the duty to confer benefits especially holds an obligation to the patient's quality of life (Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Berger, Reference Berger2000; Kamel and Hajjar, Reference Kamel and Hajjar2004; Tabak and Shemesh-Kigli, Reference Tabak and Shemesh-Kigli2006; Everett, Reference Everett2007; Reference Everett2008), safety (Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Berger, Reference Berger2000; Metzger and Gillick, Reference Metzger and Gillick2002; Gordon and Sokolowski, Reference Gordon and Sokolowski2004; Tenenbaum, Reference Tenenbaum2009), and well-being (Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Berger, Reference Berger2000; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Feldkamp, Reference Feldkamp2003; Gordon and Sokolowski, Reference Gordon and Sokolowski2004; Kamel and Hajjar, Reference Kamel and Hajjar2004; Tabak and Shemesh-Kigli, Reference Tabak and Shemesh-Kigli2006; Everett, Reference Everett2008; Tenenbaum, Reference Tenenbaum2009). There seems to be a general consensus on the beneficial effects of intimacy and sexuality for older people. According to some authors (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Howe, Reference Howe2000; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Lingler, Reference Lingler2004; Everett, Reference Everett2007; Tenenbaum, Reference Tenenbaum2009), sexual activity is proven to have a positive effect on both the physical and psychological health of elderly residents. Ehrenfeld et al. (Reference Ehrenfeld, Tabak, Bronner and Bergman1997), for instance, reports that love coupled with sexual intimacy plays a major role in maintaining energy levels. It enriches the internal life of residents and might even be considered as an important factor concerning longevity (Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997).

The promotion of welfare is indeed important when dealing with aged sexuality, but equally important is the obligation to balance the possible benefits against the degree of harms and the probability of harm eventuating (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Howe, Reference Howe2000; Post, Reference Post2000; Reference Post2001; Anonymous, 2001; Kuhn, Reference Kuhn2002; Archibald, Reference Archibald2003; Everett, Reference Everett2007; Reference Everett2008). This is especially the case when people with dementia are involved. Their cognitive impairment places them at major risk of sexual abuse and mistreatment (Howe, Reference Howe2000; Archibald, Reference Archibald2003; Lingler, Reference Lingler2004). The degree of vulnerability in combination with the possible costs or risks might legitimize interference with a resident's sexual activity. This interference, however, has to comply with some basic conditions (Anonymous, 2001; Everett, Reference Everett2007; Reference Everett2008). Each intervention has to be effective to begin with. In addition to this, the intervention used always has to be the mildest one possible to reduce the foreseeable level of harm. Following naturally from this line of argument, each intervention must prevent greater harms than it might generate.

Nonmaleficence

Based on the included literature, we can say that the principle of nonmaleficence includes two slightly different imperatives. First of all there are the obligations to protect fellow human beings from evil or harm (Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Lichtenberg, Reference Lichtenberg1997; Mattiasson and Hemberg, Reference Mattiasson and Hemberg1998; Berger, Reference Berger2000; Howe, Reference Howe2000; Kuhn, Reference Kuhn2002; Metzger and Gillick, Reference Metzger and Gillick2002; Archibald, Reference Archibald2003; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Feldkamp, Reference Feldkamp2003; Hajjar and Kamel, Reference Hajjar and Kamel2003; Gordon and Sokolowski, Reference Gordon and Sokolowski2004; Kamel and Hajjar, Reference Kamel and Hajjar2004; Tabak and Shemesh-Kigli, Reference Tabak and Shemesh-Kigli2006; Everett, Reference Everett2007; Reference Everett2008; Tenenbaum, Reference Tenenbaum2009), and to prevent unreasonable harm from occurring (Post, Reference Post1995; Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Anonymous, 2001; Tabak and Shemesh-Kigli, Reference Tabak and Shemesh-Kigli2006; Tenenbaum, Reference Tenenbaum2009). According to Everett (Reference Everett2007; Reference Everett2008), the duty to protect should not be taken to the extreme as both capable and incapable persons are entitled to live at reasonable risk. Within the context of aged sexuality, this means that the duty to protect especially relates to the risk of unreasonable harm associated with the sexual behavior concerned (Everett, Reference Everett2007; Reference Everett2008).

The principle of nonmalificence secondly denotes the obligation not to inflict harm (Post, Reference Post1995; Reference Post2000; Reference Post2001; Anonymous, 2001; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Kamel and Hajjar, Reference Kamel and Hajjar2004; Everett, Reference Everett2007; Reference Everett2008). Everett (Reference Everett2007; Reference Everett2008) suggests that the permissibility of intervening in a resident's sexual behavior mainly depends on the involvement of harm to self (and anticipating others), harm to others, or offense to others. When harm to the self is at issue, Everett (Reference Everett2007; Reference Everett2008) distinguishes two major concerns: the capacity to consent and the reasonableness of the associated risks. Reasonableness can be determined on the basis of five primary factors: the probability of causing harm to oneself, the severity of the harm being risked, the chance to reach one's goal by taking the risk, the significance of that goal and how easily less risky alternatives can be obtained (Everett, Reference Everett2007; Reference Everett2008). As regards harm to others, interference is justified, if and only if, three basic conditions are met (Everett, Reference Everett2007; Reference Everett2008). First, the associated harm must have a high degree of gravity. Secondly, there must be a high probability of harm arising. Thirdly, the resulting harm must be anticipated to be greater than the social harm caused by not allowing people to do as they choose. According to Everett (Reference Everett2007; Reference Everett2008), the bar of non-interference is significantly higher when dealing with offense to other people. First, the offense has to be intense, durable and extensive. Secondly, it has to be impossible for the offended person to reasonably avoid the objectionable event. Thirdly, the gravity of the offence must outweigh the reasonableness of the resident's sexual behavior. Berger (Reference Berger2000) states that nursing staff have the right to nonparticipation in direct care if the resident's sexual behavior is unavoidable and morally or religiously offensive. As independent moral agents, caregivers should not be asked to compromise their own ethical values while providing patient care. Their inner conflict may endanger the quality of care provided to the resident in question. In such cases it might be advisable to reassign the given caregiver (Hajjar and Kamel, Reference Hajjar and Kamel2003; Tenenbaum, Reference Tenenbaum2009). Tabak and Shemesh-Kigli (Reference Tabak and Shemesh-Kigli2006) similarly underline the fact that the staff's sensitivities must be respected.

Justice

The included literature mainly specifies the principle of justice by referring to the wrongful act of age discrimination or ageism (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Berger, Reference Berger2000; Archibald, Reference Archibald2003; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Hajjar and Kamel, Reference Hajjar and Kamel2003; Lingler, Reference Lingler2004; Tabak and Shemesh-Kigli, Reference Tabak and Shemesh-Kigli2006; Tenenbaum, Reference Tenenbaum2009). Later-life sexuality, especially, has to contend with numerous myths, stereotypes, and ingrained prejudices (Dornberg, Reference Dornberg1992; Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997). Elderly people are considered to be unattractive and uninterested in sex (Tabak and Shemesh-Kigli, Reference Tabak and Shemesh-Kigli2006). As a consequence, aged sexuality is often ignored (Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Berger, Reference Berger2000; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Kamel and Hajjar, Reference Kamel and Hajjar2004; Lingler, Reference Lingler2004; Everett, Reference Everett2007; Tenenbaum, Reference Tenenbaum2009). Older people who, nevertheless, presume to express sexual interests expose themselves to the risk of infantilization (Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Berger, Reference Berger2000). As such, ageism often deters elderly people from sexual activity. Lingler (Reference Lingler2004) therefore questions the moral relevancy of age in discussing the sexual intimacy of patients with dementia. Everett (Reference Everett2007; Reference Everett2008) additionally, states that it is discriminatory “not to allow long-term care residents to use the private areas of their homes, like the rest of us can, as appropriate places to engage in sexual activity” (Everett, Reference Everett2008, p. 89).

The principle of justice furthermore concerns the assessment of possible interventions, such as demanding abstinence or the relocation of a resident. According to Everett (Reference Everett2007; Reference Everett2008), each intervention must be thought justifiable – if at all possible – by those upon whom it is imposed. Furthermore, an intervention can only be justified if there is no bias against a particular group of people (Everett, Reference Everett2007; Reference Everett2008).

Arguing strongly in favor of the right to sexual freedom for dementia patients, Howe (Reference Howe2000) draws on the Rawlsian sense of justice. He refers to the difference principle in which John Rawls states that social and economic inequalities must be to the greatest advantage of those who are worst-off. In line with this principle, Howe (Reference Howe2000) suggests that the plight of dementia patients is so wretched that the slightest elevation of their suffering might be warranted, as it would make them “less worse-off”.

Care as an ethical concept

According to Lichtenberg and Strzepek (Reference Lichtenberg and Strzepek1990) and Lichtenberg (Reference Lichtenberg1997), caring is a useful ethical concept for dealing with the sexual behavior of people with dementia. Repeated references are hereby made to the caring concept developed by Nel Noddings (Reference Noddings1984). In accordance with her line of reasoning, caring is founded upon and rooted in the receptiveness, relatedness, and responsiveness of the caregiver to the one cared for. As a consequence, one could state that morality is eventually grounded on the affective foundation of human existence. Howe (Reference Howe2000, p. 297) partially concurs, noting that dementia patients warrant “much more than moral sanctions”; they call for compassion. While Howe (Reference Howe2000) ardently pleads for allowing sexual activity in the context of dementia on the basis of compassion, Lichtenberg (Reference Lichtenberg1997) clearly states that the concept of caring does not give blanket approval to all possible types of sexual behavior that dementia patients might display. Mattiasson and Hemberg (Reference Mattiasson and Hemberg1998) highlight the fact that taking care of a fellow human being is never a “right”; it is always a trust, a “privilege” given by the patient. To care is an ethical responsibility characterized by reciprocity. It can only be given and received; enforcing or seizing it is therefore out of the question (Mattiasson and Hemberg, Reference Mattiasson and Hemberg1998). Within this line of reasoning, care mainly attests to the principle of respect. As a result it can never be interpreted as a justification to act against the wishes of the patient. This, however, does not mean that caregivers should give full rein to dementia patients with regard to their sexual behavior. Archibald (Reference Archibald2003), additionally, warns about the thin dividing line between care and control.

The notion of care is intrinsically interwoven with notions such as dignity and vulnerability. Although a considerable number of the included articles agree upon the fact that the dignity of elderly people has to be preserved as far as possible (Post, Reference Post1995; Ehrenfeld et al., Reference Ehrenfeld, Tabak, Bronner and Bergman1997; Mattiasson and Hemberg, Reference Mattiasson and Hemberg1998; Berger, Reference Berger2000; Anonymous, 2001; Kuhn, Reference Kuhn2002; Metzger and Gillick, Reference Metzger and Gillick2002; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Feldkamp, Reference Feldkamp2003; Gordon and Sokolowski, Reference Gordon and Sokolowski2004; Kamel and Hajjar, Reference Kamel and Hajjar2004; Tabak and Shemesh-Kigli, Reference Tabak and Shemesh-Kigli2006; Tenenbaum, Reference Tenenbaum2009), we must admit that they generally just scratch the surface as far as the concept of human dignity is concerned. Some authors seem to confine themselves to notions such as self-worth and self-esteem without grounding them on the basis of the universal dignity of humankind. Post (Reference Post1995), by contrast, states that the value of a human being can never be diminished by the onset of forgetfulness; though he does not pursue the matter any further. For the sake of protecting residents' dignity, Kuhn (Reference Kuhn2002) states that public masturbation should be forbidden within a nursing home context. Metzger and Gillick (Reference Metzger and Gillick2002) similarly suggest that privacy and dignity are somehow interrelated. Yet no further explanation is given. Although some authors mention the increased vulnerability accompanying old age (Lichtenberg and Strzepek, Reference Lichtenberg and Strzepek1990; Dornberg, Reference Dornberg1992; Howe, Reference Howe2000; Kuhn, Reference Kuhn2002; Archibald, Reference Archibald2003; Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Hajjar and Kamel, Reference Hajjar and Kamel2003; Lingler, Reference Lingler2004; Tenenbaum, Reference Tenenbaum2009), ethical considerations regarding human vulnerability hardly extend beyond the principle of nonmaleficence.

An holistic approach

Dornberg (Reference Dornberg1992) and Illhardt (Reference Illhardt1992) both, in their own way, plead for an holistic approach to elderly care and later-life sexuality. According to Illhardt (Reference Illhardt1992), sexuality in its broadest sense bears upon all aspects of life, links them together and grants a certain unity. As a consequence it should be integrated in the life of elderly people. Moreover, caregivers must become aware of the fact that sexuality is of great significance for people of all ages. Dornberg (Reference Dornberg1992) additionally states that, within the field of biomedical ethics, issues must be discussed in their broadest contexts, not just the biological. In terms of aged sexuality, this means that not only should biological aspects be considered but also the social and recreational function of sex, along with the individual's personal history and the social tendency to intervene in sexual relationships and to curtail them. Without further explanation, Ehrenfeld et al. (Reference Ehrenfeld, Tabak, Bronner and Bergman1997) support both Dornberg and Illhardt in their plea for an holistic approach to elderly care.

Singularity and historicity

The singularity of every human being finds its reflection in the multiplicity of ways in which people experience their own sexuality. Dornberg (Reference Dornberg1992) clearly mentions the wide variety of ways in which people manage their own sexual needs and desires. Not only has each person his/her own way of dealing with sexuality, the heterogeneity of a disease such as dementia makes it even more complicated to assess ethically the sexual behavior of elderly patients with cognitive impairment (Casta-Kaufteil, Reference Casta-Kaufteil2003–2004; Hajjar and Kamel, Reference Hajjar and Kamel2003; Kamel and Hajjar, Reference Kamel and Hajjar2004). Post (Reference Post2000), Casta-Kaufteil (Reference Casta-Kaufteil2003–2004), Hajjar and Kamel (Reference Hajjar and Kamel2003) and Kamel and Hajjar (Reference Kamel and Hajjar2004) therefore argue that each case has to be individualized. Similarly, Kuhn (Reference Kuhn2002, p. 169) finds it unrealistic to adopt a “cookie-cutter” approach since such an approach counteracts “the uniqueness of each resident, each relationship and each family situation.”

Consistent with the notion of singularity, Lingler (Reference Lingler2004) advances the historical dimension of human existence. According to her, the historical contingency of a sexual relationship plays a crucial role in the ethical analysis of aged sexuality. The sexual activity in a couple with mixed cognitive capacities should be evaluated based upon whether or not the more powerful partner is relying on dementia-related qualities in the impaired one to secure sexual engagement. To put it differently, if the life story of a patient with dementia testifies to the fact that this patient had always dissented to sex and only since the onset of dementia had begun to assent to, or even initiate, sexual activity, then it would be morally impermissible for the more powerful partner to give his or her assent to such activity.

Relationality and intersubjectivity. Lingler (Reference Lingler2004) is the only author who addresses the complexity of sexual ethics in the context of cognitive impairment from a contextual relationship-centered perspective. By applying Baier's moral conceptualization of trust relationships (Baier, Reference Baier1986), Lingler develops a new framework to morally assess sexual activity between partners with mixed cognitive capabilities. According to this framework, “sexual activity is morally impermissible if either the truster dissents or the trusted is only able to engage the truster in such activity as a result of the truster's vulnerability” (Lingler, Reference Lingler2004, p. 98). It is not the truster's cognitive impairment in itself that has to be scrutinized, but the trusting relationship that is transformed by it. To establish whether sexual activity is morally acceptable, three aspects have to be taken into consideration: (1) the nature of the relationship, (2) the historical context, and (3) the extent to which the truster's and the trusted's interests coincide. Lingler (Reference Lingler2004) thus disassociates herself from the oppressive nature of hypercognitivism and moves away from autonomy-focused discussions which tend to bear out the absolute power of rationality.

Post (Reference Post2001) and Tenenbaum (Reference Tenenbaum2009) wonder whether or not the covenant of marriage is a morally relevant factor in considering the ethics of sexual engagement within a dementia context. Owing to their cognitive deterioration, dementia patients may be totally unaware of their marital status or they may misidentify a perfect stranger as their beloved husband or wife. Post (Reference Post2001) states that any kind of sexual intimacy with a partner other than the own spouse has to be prevented at all costs. The reality of deep forgetfulness does not nullify the everlasting lovers' vows, nor does it undo the consequential pledge of bodily exclusiveness. Conversely, Tenenbaum (Reference Tenenbaum2009) states that there is no reason to hold dementia patients to a higher standard than everyone else given that adultery is a commonplace within society. As a consequence, nursing staff should never deprive a dementia patient of extra-marital sex based solely on the spouse's request to preserve the nuptial bond and its attendant conjugal fidelity. This, however, has no bearing on those situations in which a patient mistakes a fellow resident for his or her own spouse.