‘This In-Between’: How Families Talk about Death in Relation to Severe Brain Injury and Disorders of Consciousness

These comments encapsulate some common themes in how people describe having a severely brain-injured relative in a coma-like condition, medically known as a ‘disorder of consciousness’. In the past it was highly unusual for such individuals to survive very long after the initial trauma that caused their injury. However, the emergence of modern medical technologies, and how they are deployed, has led to the creation of new long-term conditions including the ‘vegetative state’ (in which the patient shows no awareness at all) and the ‘minimally conscious state’ (in which the the patient displays some intermittent and minimal awareness). These conditions are modern phenomena — the vegetative diagnostic category was first created in the early 1970s (Jennett and Plum, 1972) and the ‘minimally conscious state’ [MCS] was only defined in 2002 (Giacino et al., 2002). Patients with disorders of consciousness disrupt previous ways of understanding life. The family may experience their vegetative or minimally conscious relative as ‘present but absent’, ‘living, but dead’, making comments such as ‘this is no life’ and ‘my son is gone’ — and experiencing a sense of loss and grief that may be ‘like a death’, although not a death

Dementie in Documentaire: Mam van Adelheid Roosen

Dit artikel vestigt de aandacht op het feit dat documentaires niet eenvoudigweg de werkelijkheid weerspiegelen die film en publiek delen, maar altijd een bepaalde kijk op die werkelijkheid presenteren. Dit heeft tot gevolg dat belangenverenigingen en opleidingen in gezondheidszorg die in toenemende mate documentaires aanraden om over dementie te informeren, in acht moeten nemen dat deze films negatieve stereotypen kunnen versterken die angst voor dementie in de hand werken. De analyse van de documentaire Mam van Adelheid Roosen illustreert dat het gedachtegoed van de personhood movement in dementie-onderzoek in een artistieke vorm gegoten kan worden. Door zijn performatieve vorm stimuleert de documentaire de kijker om de mens te blijven zien achter de ziekte. De oorspronkelijke en meer uitgebreide versie van dit artikel is door The Gerontologist online beschikbaar gemaakt op 26 april 2012

What you say and what I want : Priorities for public health campaigning and initiatives in relation to dementia

Objective To examine the overlap between priorities expressed by representatives from national and local campaigning organisations and the views of key voices in relation to dementia. Methods Semi-structured, in-depth telephone interviews were conducted with 19 representatives from campaigning organisations, including nine countries and six local community initiatives in Australia. Responses were categorised into nine priorities. Views were compared to the voices of people with dementia (n = 19), carers (n = 28), and health-care (n = 21), social work (n = 23) and service professionals (n = 20). Results Local groups prioritised user-led decision-making and community normalising agendas. National groups were influenced by service frameworks and increasing public awareness. Professional and carer groups focused on increasing understanding and communication skills while people with dementia valued being a normal part of society. Conclusion Future campaigning should use both national and local approaches to changing social relations, through interpersonal connections, advocacy and social mobilisation, to promote a normalising approach to attitude change.Peer reviewe