The Role of Reading Classic Fiction in Book Groups for People with Dementia is Better Understood through Use of a Qualitative Feasibility Study

Abstract

A Review of:

Rimkeit, B.S. and Claridge, G. (2017). Peer reviewed: literary Alzheimer’s, a qualitative feasibility study of dementia-friendly book groups. New Zealand Library & Information Management Journal, 56(2), 14-22. https://figshare.com/articles/Literary_Alzheimer_s_A_qualitative_feasibility_study_of_dementia-friendly_book_groups/5715052/1

Abstract

Objective – To explore how people living with dementia experience reading classic fiction in book groups and what benefits this intervention provides. 

Design – Qualitative feasibility study.

Setting – Day centre within a care home in the North Island of New Zealand.

Subjects – Eight participants with a medical diagnosis of dementia – four community dwellers who attend day centers, and four residents of a secure dementia unit in a care home.

Methods – Investigators used surveys, focus groups, and interpretative phenomenological analysis (IPA), for ideographic analysis of the data. 

Main results – Following analysis of the focus book group data, three superordinate, with related subordinate, themes were found: 1) the participant as a lively reader. The participants shared childhood memories of reading and when they became adults, how they encouraged reading within the household and with their own children. Subordinate themes included: recall, liveliness of discussion, and interest in reading and book clubs; 2) the participant as guardian of the voice of Dickens. Participants believed that, when the language is simplified, the beauty and rich imagery of Dickens is lost. Subordinate themes included: oversimplifying “loses the voice of Dickens”, familiarity, and continued play on words; and 3) the participant as a discerning book reviewer. The participants offered a number of ‘dementia-friendly’ suggestions, including the use of memory aids and simplifying text. Subordinate themes were expressed as four recommendations: use cast of characters; illustrations pick up the energy of the story, but balance quantity with risk of being childish; the physical quality of the text and paper; and chunk quantity of text while keeping the style of the original author. The choice of using classic fiction that was already well known was validated by the participants, who had some preconceptions about Ebenezer Scrooge, and described him by using epithets such as mean, an old bastard, and ugly. The participants found the investigators’ adapted version to be oversimplified, as short excerpts of the original Dickens seemed to evoke emotional and aesthetic responses of appreciation. Therefore, when creating adaptations, it is important to preserve the beauty of the original writing as much as possible.

Conclusion – This qualitative feasibility study has provided a better understanding of how people living with dementia experience classic fiction in shared book groups. For individuals with Alzheimer’s disease, language skills may be well-preserved until later in the disease course. For example, the focus group participants demonstrated an appreciation and command of language, as well as enthusiasm and excitement in the sharing of the original Dickens with others. They suggested the use of memory aids, such as including a cast of characters, and repeating the referent newly on each page. Participants also suggested that the adapted version be shortened, to use a large font, and to include plenty of pictures. The choice of using classic fiction was validated by the participants, as they found these tales comforting and familiar, particularly when they included such colorful characters as Ebenezer Scrooge. Finally, people living with dementia should be encouraged to enjoy books for the same reason other adults love to read – primarily for the creative process. Classic fiction may be adapted to enhance readability, but the adaptation must be done in a thoughtful manner. While memory deficits occur in Alzheimer’s disease, an appreciation of complex language may be preserved until the later disease stages.