A Word from Two Turtles

Abstract

time when there is a growing advocacy movement around the world by people with dementia (PWiDs, rhymes with kids). Turtle-like in our cognition, we PWiDs can draw on our emotional and spiritual resources to function. Over the past decade, earlier diagnosis, anti-dementia drugs, support groups and counselling have empowered early-stage highfunctioning persons with dementia and we have been able to initiate an international advocacy movement. We are able to share our experience with you of the trauma of a diagnosis of dementia, of the feelings of confusion, and the ebbs and flows of our functioning. We feel honoured to be able to contribute this editorial to the second issue of a new journal, which validates these experiences. As PWiDs we seek inclusion in the debate between our world and yours, for we know both intimately, having left your world at the moment of diagnosis. Let us introduce ourselves. Morris was a sociology professor in the US who studied colonization and marginalization, such as women's experience in western culture, but his personal acquaintance with these issues was little more than academic. After being diagnosed with Alzheimer's disease in 1998, he found himself transmogrified into a woman. He was supposed to be weak at sustained attention ('flighty'), poor at logic and long-range planning, but great at living in the moment, at smelling the flowers and at appreciating the warmth of touch. It was not his fault, but just an inevitable outcome of biology. What an opportunity for participant-observation research into marginalization! Christine was a senior public servant responsible for advising the Australian government on science and technology, and managing a large funding program before being diagnosed with fronto-temporal dementia in 1995. Throughout her career she fought against the stereotype of womanhood, by analysing, organizing, planning and exercising strong de men tia d e m e n t i a ©   

Versorgungsnahe Demenzforschung ermöglichen – Fragestellungen im Deutschen Zentrum für Neurodegenerative Erkrankungen an der Universität Witten/Herdecke

“…Menschen mit Demenz drücken eher das Gefühl aus, dass sie im Moment der Diagnosestellung die Welt der Nicht-Demenzkranken verlassen haben und nur noch über sie gesprochen wird und fordern explizit eine Einbeziehung in Forschungsprojekte [21,68]. Mittlerweile gibt es auch in Deutschland zunehmend Erfahrungsberichte und autobiographische Schilderungen [69][70] und eine Dissertation mit einem theoAbb.…”

Editorial

“…Enhanced potential for creativity, aesthetic pleasure and spiritual strength in people with dementia (Friedell & Bryden, 2002;Stuckey & Gwyther, 2003) can promote and maintain valuable relationships between individuals with deteriorating cognition and their families. They represent 'micro and meso system' avenues for future psychosocial intervention research and practice.…”

Editorial

“…For instance, whilst advocacy for people with dementia remains in its infancy in both the UK and the USA, a recent report by Cantley, Steven and Smith (2003) has suggested that it is one important means by which people with dementia can articulate their needs and downplay the stigma and discrimination that so often accompanies a diagnosis of dementia (see also : Dunning, 1997;Gordon, 2003). Additionally, people with dementia continue to express their agency on a local/national/international platform through their contribution to research studies; scientific conference participation (see for example: Ashley, 2003;Bahr, Cahill, & Howell, 2003); and involvement in peer reviewed journals (Friedell & Bryden, 2002;Sterin, 2002;Truscott, 2003), amongst other outlets.…”