Evidence Summary
The Role of Reading Classic Fiction in Book Groups for
People with Dementia is Better Understood through Use of a Qualitative
Feasibility Study
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
Reviewed by:
Joanne Muellenbach
Director, Jay Sexter Library
Touro University Nevada
874 American Pacific Drive
Henderson, Nevada, United
States of America
E-mail: joanne.muellenbach@tun.touro.edu
Received: 2 Feb. 2018 Accepted: 3 May 2018
2018 Muellenbach.
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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.
Commentary
This study highlights how people living with dementia
experience classic fiction in shared book groups. The findings build upon the
understanding of experiences identified by Billington
(2013), who found that engagement in reading-group activity appeared to produce
a significant reduction in dementia symptom severity. Her findings suggested
three themes for effective reading group engagement: its components; enjoyment,
and a renewed sense of personal identity; and enhanced listening and memory. Billington suggested that a randomized controlled trial
(RCT), along with a qualitative component, could further research in this area,
by addressing issues of individual differences amongst participants. In fact,
the investigators for this study have published five adaptations, based on
classic fiction, drama, and poetry, for a pilot RCT and linguistic analysis of
dementia-friendly book groups, in preparation for a 2018 multicenter,
international RCT. The findings of a systematic review by Latchem
(2014) on the role of reading on the health and well-being of people with
neurological conditions concluded that, while research in this area is limited,
a number of studies reported reduced agitation, and increased engagement, in
people with dementia. Latchem also suggested that
RCTs, along with qualitative research, are needed to provide an in-depth and
rich understanding of the effect of reading interventions for people living
with dementia.
This study had specific shortcomings – it explored the
experiences of just eight participants with a medical diagnosis of dementia, in
one location, the North Island of New Zealand, and at one particular point in
time. O’Cathain (2015) published a guide for
researchers who are assessing qualitative research within feasibility studies
for RCTs. She recommended that further qualitative, and quantitative, research
on how dementia is experienced by this population, in other health care
settings and countries, involving a larger, more diverse, sample, and over a
longer period of time, would strengthen the key findings and applicability of
the study. She also stressed the importance of having an experienced qualitative
researcher as a part of the feasibility study design team.
The findings of this research study have the potential
to assist programs in psychology, geriatrics, linguistics, and library and
information science to develop curricula on research study design. Study
results may also assist associations and organizations involved in educating,
preparing, and supporting health professionals at every career stage to develop
the actions, mindsets, and skills needed to facilitate and advance knowledge about
how people with dementia experience reading classic fiction. In addition, this
study could influence writers to create new adaptations of classic fiction, and
market it to day centres and care homes. Health
sciences or public librarians may be inspired to start a book group for people
with dementia. The findings may also serve to inform the design preferences in
printed education materials for people with dementia.
References
Billington, J., Carroll,
J., Davis, P., Healey, C., & Kinderman, P.
(2013). A literature-based intervention for older people living with dementia. Perspectives in Public Health, 133(3),
165-173. doi: 10.1177/1757913912470052
Latchem, J., &
Greenhalgh, J. (2014). The role of reading on the health and well-being of
people with neurological conditions: a systematic review. Aging & Mental Health, 18(6),
731-744, doi: 10.1080/13607863.2013.875125
O’Cathain, A., Hoddinott, P., Lewin, S., Thomas, K., Young, B., Adamson,
J., Jansen, Y., Mills, N., Moore, G., and Donovan, J. (2015). Maximizing the
impact of qualitative research in feasibility studies for randomized controlled
trials: guidance for researchers. Pilot
and Feasibility Studies, 1(32). https://doe.org/10.1186/s40814-015-0026-y.