Care for older people with regard to intimacy and sexuality: A clinical-ethical study with special attention to institutionalized people with dementia.

CARE FOR OLDER PEOPLE WITH REGARD TO INTIMACY AND SEXUALITY: A CLINICAL-ETHICAL STUDY WITH SPECIAL ATTENTION TO INSTITUTIONALIZED PEOPLE WITH DEMENTIA The sexual expression of geriatric residents remains an ethically sensitive issue for both nursing staff and relatives. Contemporary beliefs and understandings of aged sexuality weighted down with a long history of sociocultural stereotyping. Old age and sexuality are often perceived as incompatible, putting a taboo around aged sexuality. As a result, the sexual interests of older residents are often ignored or perceived to be a behavior problem rather than an expression of a basic human need for intimacy. Because of the pivotal role of nursing staff within institutionalized care, the knowledge and attitudes of nurses have a major impact on residents sexual expression. Ethically dealing with expressions of sexuality in institutionalized elderly care is extremely difficult, especially since adequate ethical support and guidance are lacking, putting a burden on nursing staff, residents and relatives.The overall objective of this dissertation was to develop a clinical-ethical framework for understanding and dealing with issues of aged sexuality in institutionalized care. Special attention was paid to older people with dementia. Meeting this aim required insight into (1) clinical care practices and (2) ethical reasoning about older residents sexual expression. Clinical care practices in terms of nursing staff s knowledge, attitudes and experiences toward aged sexuality were investigated and formed the central focus of a first, empirical research line. Philosophical argumentations and principles that guide ethical reasoning in the field of aged sexuality were explored in a second, normative research line. Rather than actively integrating both research lines, they were conducted separately and in their own right.Nursing staff s knowledge, attitudes and experiencesOur empirical research line started off by reviewing the quantitative and qualitative literature on nursing staff s knowledge, attitudes and experiences toward aged sexuality in general and in institutionalized care. While most quantitative studies indicated nursing staff to be moderately knowledgeable and holding rather positive attitudes toward aged sexuality, the qualitative studies indicated that, in practice, nursing staff seem to display more conservative attitudes toward residents sexual expression. Factors suggested to influence nursing staff s reactions toward residents sexual behavior were amongst others the behavior displayed itself, its sexual explicitness and perceived appropriateness, the involvement of residents with dementia, the individual s comfort level addressing sexuality-related issues and the overall organizational ethos regarding aged sexuality.In a second stage, an existing English questionnaire measuring knowledge and attitudes regarding aged sexuality in institutionalized care i.e. the Aging Sexual Knowledge and Attitudes Scale or ASKAS was translated into Dutch. The Dutch translation of the ASKAS was subsequently validated by a team of experts and an exploratory study. Test results indicated the shortened Dutch version of the ASKAS to be a user-friendly, valid and reliable instrument for measuring the knowledge and attitudes of nursing staff regarding aged sexuality in institutionalized care.The empirical research line was concluded in the implementation of the Dutch version of the ASKAS in 43 geographically dispersed nursing homes in Flanders, Belgium. Nursing staff at these facilities were invited to fill out the questionnaire anonymously. A careful analysis of the included data (for 1166 participants) suggested moderate levels of knowledge about aged sexuality and moderately positive attitudes toward sexual expression by institutionalized older people. Age proved to be an important predictor of both knowledge and attitudes. Younger people in particular seemed to be less knowledgeable and more conservative about aged sexuality in institutionalized care. Attitudes were also influenced by the participant s religious affiliation.Ethical reasoningA review of argument-based ethics literature addressing issues of aged sexuality in general and in institutionalized care formed the point of departure for the philosophical-ethical research line. Based on the included literature, we identified two major categories of ethical values and arguments. While some values and arguments clearly referred to what are often called the standard principles of bioethics (i.e. respect for autonomy, nonmaleficence, beneficence and justice), others appeared to be more care-related (e.g. relationality, responsiveness, compassion, ). The principle of respect for autonomy especially seemed to play a prominent role in discussing sexual morals in institutionalized elderly care settings. Since this principle was often identified with obtaining and respecting the resident s informed consent to sexual engagement, questions were raised about its appropriateness for ethically addressing the sexual longings and expressions of nursing home residents with dementia.In a next step, a philosophical ethical framework was developed for understanding and dealing with expressions of aged sexuality in institutionalized (dementia) care. This framework sought to enrich the current ethical debate on aged sexuality by transcending the current focus on informed consent and thus cognition. Based on phenomenological writings, certain concepts rose to the fore: the decentered self, human embodiment, being-in-the-world, and being-with-others. The framework in its entirety highlights the elusiveness of human existence giving the concept of ambivalence a central place in the understanding of aged sexuality within dementia care. It demonstrates the ethical complexity of dealing with the sexual longings and expressions of residents with dementia and illustrates how a flat and unnuanced disfavoring of these longings and expressions would be ethicallyinsensitive.To conclude this second researchline, the abovementioned framework was translated to a more practical level by the formulation of clinical-ethical considerations. These considerations were oriented toward three spheres: the individual sphere, the partnership sphere and the organizational sphere. Empowerment proved to be the key concept that interweaves these three spheres and in a certain sense unites them.Recommendations for further researchOur results definitely contribute to the search for an ethical, clinically useful answer to the question that stands at the heart of this research: How should expressions of intimacy and sexuality in institutionalized elderly care be dealt with? But it is only a first step in the direction of clinically useful guidelines. A next step would be the refinement of the philosophical ethical framework so that it reflects the experiences of those closest to the issue addressed, and actually succeeds in convincing them to act accordingly in their dealings with older people. This might be achieved by in-depth multi-perspective qualitative research of (a) nursing staff, (b) residents and (c) relatives. We recommend special attention be paid to those types of sexual behavior that seem to propose an extra challenge because they are still surrounded by deeply ingrained stigmas. We particularly think of sexual expression by older gay, lesbian and bisexual people and older people with dementia. Such research would bring us a step closer to integrating empirical and normative ethical research.nrpages: 256status: publishe