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1	Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement) Gove, Dianne M., Diaz-Ponce, A., Georges, J., Moniz-Cook, E., Mountain, Gail, Chattat, R., Øksnebjerg, L., The European Working Group of People with Dementia 17 May 2017 (has links) Yes / This paper reﬂects Alzheimer Europe’s position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and beneﬁts associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group ‘Dementia Outcome Measures - Charting New Territory’. Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research. / European Union's Health Programme (2014-2020), grant number 707934. This work received funding under an operating grant from the European Union's Health Programme (2014-2020), grant number 707934. / European Union's Health Programme (2014–2020), grant number 707934.
2	Äcklet, Äcklet : En äckelstudie om doft, kroppsvätskor och skriftliga spyor samt att äta sig själv och andra i Aliide, Aliide, Parfymen, Nekrofilen, Våtmarker och Tid för kärlek / Disgust, Disgust : A disgusting study about scent, bodyfluids, writing vomit and eating oneself and others in Aliide, Aliide, Parfymen, Nekrofilen, Våtmarker and Tid för kärlek Guldbacke Lund, Linnéa January 2021 (has links) This essay explores and examines disgust in five literary figures and books based on scent, bodyfluids and abjection. Together with Julia Kristeva's Powers of Horror: An Essay on Abjection and Sara Ahmed's "The Performativity of Disgust" in The Cultural Politics of Emotion, I analyze these books, and my position as a researchsubject. The questions I ask are: What does disgust mean? How do the subject's boundaries shift when things penetrate the body? How are scents, body fluids and disgust expressed in relation to power and the female body? And what does it mean that I stick my reading experiences on the texts I read? The analysis begins in Mare Kandre's novel Aliide, Aliide and how gaze, power and girlhood are made, as well as how abjection takes place in the intake of milk and larvae. Body in body and body against body are analyzed based on Aliide's disgust in the novel. I discuss how something growing inside is experienced as disgusting and frightening and connect it to the pregnant body and the fetus as abjection. In the second chapter of the analyze, it is Parfymen: berättelsen om en mördare by Patrick Süskind that focuses on the scent of the female body that Grenouille, the main character tries to extract and master. The gaze on the female body and the extraction of fragrance is in focus here and in Nekrofilen by Gabrielle Wittkop, Lucien's desire for the dead body is examined. The body fluids, such as the vomit that the bodies excrete can be read as limits to life and death. In the third and final analysis section, I read these books with affect. I reconnect to my introduction where Ulf Lundell's poems made me feel disgusted. I use Ahmed's concept of performativity to discuss how cannibalism - reading - eating body fluids are connected, and how writing about disgust, is a form om vomiting. I examine my own writing subject and what an affective reading does to literary studies and the research position. In conclusion, I discuss how the universal and the subjective making of disgust effect research. Disgust Abjection Scent Bodyfluids Cannibalism Vomit Research position Reading Writing Subject borders female body gaze power power relations Ahmed Kristeva repulsive effects affective performativity äckel abjekt doft lukt kroppsvätskor spy kräkas kannibalism forskarsubjekt gränser läsandesubjekt skrivandesubjekt affektiv performativitet makt kvinnokropp död motstånd effekt General Literature Studies Litteraturvetenskap

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Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)