Literary Alzheimer’s: A qualitative feasibility study of dementia-friendly book groups

Despite the estimated 47 million people living with dementia and despite reading being our mostpopular cultural activity, there is lack of research around how people with dementia experiencereading and what tools can be used to help them to enjoy a good read. Current IFLA Guidelines forLibrary Services to Persons with Dementia are unhelpful, as they encourage the stigmatisation andinfantalisation of the adult with dementia. There have been few strategic efforts by New Zealandlibraries to engage those living with dementia to continue reading. Nelson and Canterbury librariesare some exceptions, providing ‘dementia-friendly’ book groups.This report summarises the findings of a qualitative study, which asks how people living withdementia experience reading literary fiction and how such activity is best facilitated for creativityand enjoyment. The findings of the study refute Ribot’s ‘regression hypothesis’ of dementia. Whatwas striking in both focus groups was the preserved command and appreciation of language, andthe stimulation of sharing the “wonderful words” of the featured author Charles Dickens. To supportmemory deficits, while preserving the stimulation of the original language, the following modificationswere found to be helpful: providing a cast of characters, reducing the amount of text, andregularly repeating referents.据估算，全球现有约4700万痴呆症患者，而阅读本是最普及的大众文化活动，但目前针对痴呆症群体的阅读体验、以及可辅助他们享受优质阅读的相关工具的研究仍较为匮乏。 现行的《国际图书馆协会联合会（IFLA）痴呆症群体图书馆服务指南》并无实际助益，因其反而助长了对痴呆症成年患者的污名化与婴儿化对待。新西兰的图书馆极少推出系统性举措，以吸引痴呆症群体坚持阅读，尼尔森图书馆与坎特伯雷图书馆便是少数例外，它们开设了“痴呆症友好型”读书小组。 本报告总结了一项质性研究的成果，该研究旨在探究痴呆症群体的文学小说阅读体验，以及如何通过最优方式推动此类活动，以激发创造力并提升愉悦感。 该研究的结论驳斥了里博特（Ribot）提出的痴呆症“退行假说”。两组焦点小组访谈均呈现出一个显著发现：痴呆症患者对语言的掌控力与鉴赏力得以保留，而分享核心作者查尔斯·狄更斯（Charles Dickens）的精妙文辞则进一步强化了这种阅读体验。为弥补记忆缺损，同时保留原汁原味的语言刺激，研究发现以下调整方式颇具助益：提供角色表、缩减文本篇幅，以及定期重复指代性表述。