Deliver us from evil: carer burden in Alzheimer's disease

Abstract

Alzheimer's disease is the most common neurodegenerative disorder in today's developed world that is also increasingly picked out as a focal theme in fictional literature. In dealing with the subjectivity of human experience, such literature enhances the reader's empathy and is able to teach about moral, emotional and philosophical issues, offering the chance to see situations from a position otherwise possibly never taken by the reader. The understanding and insight so gained may well be unscientific, but the literary approach offers an insight into the whole person's perspective and the particularity and uniqueness of a situation that includes ethical conflicts. A key motif of fictional literature centred around dementia remains the burden the adult-child carer is confronted with, considering the parent's remorseless decline and personality change, the sudden demand for devoted and continuous care, and the constantly changing relationship with the declining parent. In the context of an ever increasing demand for a constructive public discussion regarding end-of-life treatment of demented patients, Christine Devars (Le Piano Désaccordé) and Andrés Barba (Ahora Tocad Música de Baile) illustrate how powerful and burdensome the impact of Alzheimer's disease is on both patient and carer and what extremes may be reached under such truly exceptional circumstances.

Integrating Medical Humanities into a Pharmaceutical Care Seminar on Dementia

“…17 However, the demands of time and objectively assessable learning outcomes preclude the students' thorough initiation to the use of, eg, metaphorical language in relation to dementia or the mythical formulation of caregiver experience (ie, as to why one narrator describes a "journey," while another emphasizes images of "battle"). 34,35 Compared with a discussion of narrative, a discussion of images is more easily achieved. Nevertheless, the ambivalence of some students to photo or painting interpretation only confirms that more time is needed to put such humanities considerations in context.…”

Carers’ responses to shifting identity in dementia inIrisandAway From Her: cultivating stability or embracing change?

“…In themselves, the perspectives of carers are a fully legitimate subject for cinematic treatment and exploration, with the potential for rich insights into how they may respond to the often intense dilemmas and pressures they face 29 30 . Iris and AFH can be read as the two husbands’ explorations of the shifting nature of their relationships as, having been thrust into the caring role, they attempt to navigate the changes they see in their wives.…”

Narrating stroke: the life-writing and fiction of brain damage

“…But while the narrative exploration of the degenerative chronicity of the Alzheimer's or Parkinson's type distinctly focuses on the patient's daily confrontation with incremental ‘loss’, remorseless ‘decline’ and inescapable ‘terminality’,3 stroke ‘victims’ necessarily speak from the position of having undergone very abrupt degeneration, being confronted with gradual relocation within their recovery.…”