For us, narrative care is grounded in pragmatist philosophy and focused on experience. Narrative care is not merely about acknowledging or listening to people's experiences, but draws attention to practical consequences. We conceptualize care itself as an intrinsically narrative endeavour. In this article, we build on Lugones' understanding of playfulness, particularly to her call to remain attentive to a sense of uncertainty, and an openness to surprise. Playfulness cultivates a generative sense of curiosity that relies on a close attentiveness not (...) only to the other, but to who we each are within relational spaces. Generative curiosity is only possible if we remain playful as we engage and think with experiences and if we remain responsive to the other. Through playfulness, we resist dominant narratives and hold open relational spaces that create opportunities of retelling and reliving our experiences. Drawing on our work alongside older adults, as well as people who work in long‐term care, we show the possibilities of playfulness in the co‐composition of stories across time. By intentionally integrating playfulness, narrative care can be seen as an intervention, as well as a human activity, across diverse social contexts, places and times. (shrink)

Social death is apparent when people are considered unworthy of social participation and deemed to be dead when they are alive. Some marginalized groups are more susceptible to this treatment than others, and one such group is people with dementia. Studies into discrimination towards older people are well documented and serve as a source of motivation of older people’s social movements worldwide. Concurrently, theories of ageing and care have been forthcoming in a bid to improve the quality of responses to (...) older people in times of need. Included in this theorizing has been the analysis of values and approaches that paid carers convey to citizens who require their help. In this article, the values and approaches of social workers and mental health nurses bring to people with dementia are considered within the context of social life and social death. It is based on a small study that undertook to critically examine how participation of people with dementia was facilitated. A thanatological lens was used to interpret inclusive and exclusive practices which potentially create opportunity for participation or reinforce the loss of citizenship for older people with dementia. (shrink)

This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, (...) with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more. (shrink)

Background:Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy.Objective:To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy.Setting:Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with intellectual disabilities.Methods:Ethnographic field study.Ethical considerations:The boards (...) representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients’ assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee.Findings:Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being “watched.”Conclusion:Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices’ presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach. (shrink)