Background: There is an international trend for frail older adults to move to residential care homes, rather than ageing at home. Residential facilities typically espouse a person-centred philosophy, yet evidence points to restrictive policies and surveillance resulting in increased loneliness and diminished opportunities for intimacy and sexual expression. Residents may experience what has been termed social death, rather than perceive they are related to by others as socially alive. Aim: To consider how the loss of intimacy and sexuality in residents’ (...) lives contributes to iatrogenic loneliness experienced in residential care, and the importance of considering these issues together. Research design: The study utilised a constructionist methodology, investigating the meanings associated with intimacy, loneliness, and ageing. Participants and research context: Qualitative data used in this study are drawn from a larger dataset of a mixed-methods study. Interviews were completed as follows: staff, 21 individual interviews, and two groups with a total of 13 additional people; residents, 26 interviews with 28 people; and family members, 12 interviews with 13 people. Findings: Five key themes were identified in the data analysis: loneliness and relational identity, loneliness and functional relationships, loneliness and disrupted intimacy, loneliness and liminality, and loneliness and the built environment. Ethical considerations: The study was approved by a University Human Ethics Committee. Participation was voluntary. Consent was gained and confidentiality upheld. Discussion: Residents’ expression of intimacy and sexuality can be compromised through paternalism, ageism, restrictive policies, care-rationing and functional care, alienating residents from sustaining and developing significant relationships. Attitudes and cultural beliefs of staff and family members about ageing and intimacy, compounded by architectural design, may intensify loneliness. Conclusions: Nurses have a pivotal role in ensuring policies and practice enhance social citizenship. (shrink)

This contribution sets out to criticize the prominent metaphor of “death while alive” in the context of dementia. We first explain the historical origin and development as well as the philosophical premises of the image. We then take a closer look at its implications for understanding dementia and societal attitudes and behaviours towards those affected. In doing so, we adopt a life course perspective that seeks to account for the ethical significance of the temporal extension and structure of human life. (...) According to this perspective, individual existence in time is characterized by normative standards of age-appropriate behavior, evaluative standards of a good life, and teleological notions of successful development which require theoretical analysis and ethical discussion. Such a perspective can contribute significantly to spelling out the implications of the metaphor of death while alive and to criticizing their problematic aspects. Indeed, it makes clear that this metaphor aligns dementia with a different point in the human life course, thus ultimately framing it as a kind of deviation from the biographical norm, a disruption in an assumed temporal order of existence. At the same time, the life course perspective can help to understand why this conception involves ethically problematic distortions and blind spots. The resulting considerations allow conclusions with regard to medical and care ethical debates about self-determination, surrogate decision making, and advance directives in the context of dementia. Furthermore, on a theoretical-conceptual level, they also illustrate the importance of a biography- and culture-sensitive approach to philosophical and ethical reasoning in biomedicine and the life sciences. (shrink)

Background To investigate attitudes of staff, residents and family members in long-term care towards sex and intimacy among older adults, specifically the extent to which they conceptualise sex and intimacy as a need, a right, a privilege or as a component of overall well-being. Methods The present study was a part of a two-arm mixed-methods cross-sectional study using a concurrent triangulation design. A validated survey tool was developed; 433 staff surveys were collected from 35 facilities across the country. Interviews were (...) conducted with 75 staff, residents and family members. Results It was common for staff, residents and family members to talk about intimacy and sexuality in terms of rights and needs. As well as using the language of needs and rights, it was common for participants to use terms related to well-being, such as fun, happiness or being miserable. One participant in particular described receiving intimate touch as a ‘kind of care’—a particularly useful way of framing the conversation. Conclusion While staff, residents and family frequently used the familiar language of needs and rights to discuss access to intimate touch, they also used the language of well-being and care. Reframing the conversation in this way serves a useful purpose: it shifts the focus from simply meeting minimum obligations to a salutogenic approach—one that focuses on caring for the whole person in order to improve overall well-being and quality of life. No data are available. (shrink)

The aim of our research is to explore how Alzheimer’s disease and dementia are represented in the Slovak media. Data consisted of text documents from the Newton media database. Search criteria included TV, radio, print and web sources that mentioned the words “Alzheimer” and “dementia” between 2015 and 2018. A thematic discourse analysis was applied in order to identify the themes and their mutual semantic relations. The analysis was focused primarily on the headlines (n = 227). The results show that (...) the biomedical perspective currently dominates at the expense of a socio-psychological one. Persons with Alzheimer’s disease and dementia are represented as tragic cases and victims of a cruel disease. Responsibility for care and prevention is individualized. Our findings suggest that a new perspective is needed. Such an approach should recognize the dignity and humanity of persons with Alzheimer’s disease and dementia despite their cognitive deficits and respect their socio-psychological needs. (shrink)

Unsere Sicht der Demenz ist von kulturellen Metaphern geprägt. Sie ziehen Analogien zu vertrauten Erfahrungsbereichen und eröffnen so ein Verständnis von einem ansonsten schwer fassbaren und letzten Endes unergründlichen Geschehen. In zeitgenössischen Diskursen über die Demenz spielen insbesondere zwei biographische Metaphern eine maßgebliche Rolle: die der,Rückkehr in die Kindheit‘ und die des,Todes bei lebendigem Leib‘. Der Beitrag unterzieht beide Vorstellungen einer kritischen Reflexion. Er erläutert zunächst die kulturgeschichtliche Herkunft und Bedeutung der Kindheits- und Todesmetapher. Im Anschluss geht er ihren Implikationen (...) für das Verständnis von Demenz und die Einstellungen und Verhaltensweisen gegenüber den Betroffenen nach. Dabei kommt eine Lebensverlaufsperspektive zum Tragen, die die Bedeutung der zeitlichen Erstreckung und Verlaufsstruktur des menschlichen Lebens für die ethische Theoriebildung systematisch zu berücksichtigen sucht. Auf diese Weise lässt sich verdeutlichen, dass beide Metaphern die Altersdemenz letztlich einem anderen Punkt des menschlichen Lebens angleichen und sie damit in je unterschiedlicher Weise als eine Art biographischer Normabweichung auffassen. Die Auseinandersetzung erlaubt Schlussfolgerungen mit Blick auf medizin- und pflegeethische Debatten um Selbstbestimmung, Stellvertreterentscheidungen und Vorausverfügungen im Kontext der Altersdemenz. Auf einer theoretisch-konzeptionellen Ebene verdeutlicht sie darüber hinaus auch die Bedeutung einer biographie- und kultursensiblen Perspektive für die ethische Theoriebildung im Allgemeinen. (shrink)