Publishers have so far paid little attention to readers who have dementia. The few books that are available tend to be large format, highly illustrated hardbacks with limited text and a strong accent on reminiscence. Books like these may be ideal for shared reading with family and carers (Bate, 2014), but anecdotal evidence suggests that experienced readers with a relatively recent diagnosis might welcome more adventurous texts. The research outlined below describes the studies I carried out in order to investigate whether adjusting the design of books could help readers with a memory impairment (Leahy, 2021).
Why Alzheimer’s disease can affect reading
Alzheimer’s disease is the most commonly occurring form of dementia (Zahn & Burns, 2017, p. 2). It is a progressive condition and is characterised by a particular form of memory loss that is due in part to a deterioration in the functioning of the hippocampus, a part of the brain that plays a vital role in working memory and in the formation of new memories (Alzheimer, 2021). Since reading relies on the synchronous functioning of many aspects of memory, individuals with Alzheimer’s tend to experience a number of specific difficulties which include retaining new information (Lleó & Blesa, 2017, p. 28), grasping the gist of a text (Hudon et al., 2006), and inferring meaning from an author’s words (Creamer & Schmitter-Edgcombe, 2010). Research suggests that the hippocampus also plays a part in binding together the experience of time, space and memory (Eichenbaum, 2017), which would explain the general feeling of disorientation caused by its malfunctioning.
There is good evidence, however, that individuals who have a lifelong habit of reading may have preserved literacy skills (Snowdon, 2003). Stern (2012) refers to this capacity as cognitive reserve and suggests that it “provides an explanation for differences between individuals in susceptibility to age-related brain changes or pathology related to Alzheimer’s disease” (p. 1006). It is also possible that reducing the cognitive load (Sweller, 1988) placed on memory by the demands of reading might be beneficial. Building on the reader’s learned skills would certainly be a positive step since habits which rely on procedural memory are not affected in the early stages of the disease (Bayles & Tomoeda, 2013, p. 60).
What needed to be investigated?
There is little academic literature on reading continuous prose with dementia, so my research questions were exploratory. They were:
- What impact does early-stage Alzheimer’s disease have on an individual’s capacity to read for pleasure?
- What can be done by book editors and designers to mitigate these effects?
The first of these questions was problematic since Alzheimer’s is known to affect the individual’s capacity to communicate and to initiate action. Moreover, there are increasingly frequent references in the literature to “gatekeepers” — the carers and members of the medical profession who seek to maintain the privacy and wellbeing of those in their charge (Brooks et al., 2017). Academic research involving direct contact with informants therefore requires compliance with Health Research Authority protocols in order to meet their strict ethical requirements.
The second question involved studying the published literature in a wide range of areas including psychology, gerontology and vision research, and combining it with the applied research in information design and design for accessibility. There is a growing literature on the potential for ICT to support individuals who develop dementia, but Alzheimer’s disease is defined by specific memory impairments, and longitudinal research is lacking on the benefits of e-readers in this context. I chose therefore to focus my own research on the practical advantages of the printed book.
The academic literature suggested that adding documentary illustrations might be a way of guiding the reader’s attention (Bateman, 2014; Tatler et al., 2010; Yarbus, 1967) and help to reinforce the ideas expressed in a text. Work by Embree et al. (2012) suggests that individuals in the early stages of Alzheimer’s can remember illustrations better than words (the picture superiority effect). Reinforcing information by presenting it simultaneously in two different modes – words and images – may therefore be a way of supporting an impaired memory. The use of headings as advance organisers might be a way of reducing cognitive load; Hartley and Trueman (1983) suggest that headings can enhance recall, while Lorch (1989) proposes that they help focus attention and thus support comprehension. Limiting the need for inference might be achieved by building in redundancy (Bower, 1976) or deliberate superfluousness (Mollerup, 2013), and by using explicit punctuation (Ritter, 1992). Perhaps most significantly, research led by the University of Liverpool suggests that imaginative content and rich vocabulary continue to be appreciated by readers with a cognitive impairment (Davis et al., 2016). The pleasure derived from reading is undoubtedly subjective, but personal observation suggested that poorly presented and badly structured text would be likely to result in reader error.
How I organised the research
Progress in my research was gradual and incremental. Some informal fieldwork was necessary initially, and I followed this with three formal user-centred studies.
I carried out the fieldwork study with a wide range of volunteers who had dementia. The study involved having informal conversations about reading with both individuals and large groups, including members of the Dementia Engagement and Empowerment Project (DEEP). I also listened to the opinions of family members and carers, although the research was focussed exclusively on the views of readers with dementia – the experts by experience.
The fieldwork suggested that the volunteers wanted to continue to read despite the extra effort of concentration that was required; they were frustrated at not being able to remember a plot and who the characters were in a story; they tended not to blame the publisher if they found books difficult to read and were interested in the idea that designers could adjust the layout of a text so that it might be easier to follow.
The research method I chose
On the basis of these initial findings, I chose a qualitative approach for the three formal studies with the parameters of the investigation being narrowly defined. The participants for each study were self-declared habitual readers with a recent diagnosis of Alzheimer’s disease, and the research focussed exclusively on private reading for pleasure. I decided to draw on methods used in design ethnography as a way of supplementing the information that participants themselves might be able to supply (Wasson, 2000). I made audio-recordings of conversations – with the participants’ consent – and I transcribed their comments word for word in order to ensure transparency. I also wrote up detailed notes on each encounter using the thick description approach favoured by Geertz (1973, p. 6) in an effort to capture the participants’ full meaning.
The study materials
I drew up a detailed brief for each of the three small-scale user-centred studies and commissioned the test materials from two professional designers. In each case the designers prepared pairs of contrasting sample materials so that participants would only have to choose between alternative treatments.
Participant interview study: four pairs of layouts were prepared showing alternative treatments of four design issues. The issues were:
- the positioning of an illustration in the text (see Figure 1a) or on the facing page (see Figure 1b) in a work of fiction
- the addition of subheadings in a piece of explanatory prose (see Figures 2a and 2b)
- the addition of speakers’ names in a page of dialogue (see Figures 3a and 3b)
- the simplification of language in a page of a literary fiction (see Figures 4a and 4b)
The samples in each case were based on existing books and followed the typography and page design of traditional texts.
Textual additions study: the layouts addressed the issue of forgetting the characters in a story and forgetting the events described in previous chapters. The layouts showed:
- alternative presentations of a list of characters in the prelims (see Figures 5a and 5b)
- a plot summary at the end of a chapter (see Figure 6a)
- a plot summary at the start of a new chapter (see Figure 6b)
The samples again adopted the design of traditional works of fiction with the plot summaries added in a sans serif typeface and on a grey background.
Book cover study: the samples tested memory-supporting additions to a work of fiction. The additions were:
- a bookmark attached to a ribbon and providing a list of characters (see Figure 7)
- a list of characters provided as a detachable strip printed on the front flap (see Figure 8)
- two suggestions for a publicity sticker for the front of the book (see Figure 9)
The design of the book covers was deliberately fresh and simple with a strong reliance on typography to ensure the legibility of both the book title and the flap copy.
The participants and what they did
The first study had ten participants and involved talking to people on a one-to-one basis in their homes. The second and third studies were held as part of monthly DEEP meetings. Here the numbers were small – three participants for the first study and four for the second – but each participant had chosen to attend the meeting knowing that user research into book design was on the agenda. At each of the two DEEP meetings I asked simple, verbal questions addressed to the group as a whole. By showing the participants alternative designs I hoped to reduce the need for participants to formulate their answers as complete sentences. I also hoped that handling the materials would prompt them to make additional observations.
The three studies together with the preliminary fieldwork highlighted a number of the issues raised in the published literature on reading with dementia and confirmed recommendations made by current design research. The studies also provided several new and perhaps unexpected findings.
Confirmed: participants generally appreciated a familiar page layout with clear type, generous line-spacing and conventionally placed signposting in the form of chapter headings and page numbers. Readers favoured positioning illustrations just after their point of reference in the text and noted the extra burden on memory caused by temporarily leaving a paragraph of text to look at an image on the facing page. Several readers noted that illustrations could also act as useful place-holders in a long text. Readers acknowledged that structuring information so that it could be presented beneath headings might help comprehension, although they were aware that the result might appear childish. Similarly, some readers were able to infer who was speaking in a piece of dialogue and felt that repeating the speakers’ names too often could appear heavy handed. In keeping with published research, readers did not appear to struggle with vocabulary (Patterson et al., 1994) or with straightforward syntax (Kempler et al., 1998). A number of participants appreciated the simplifying of literary texts while others felt that engaging with the author’s writing style contributed to the satisfaction of reading.
The idea of including a list of characters at the start of a text was welcomed. A plot summary included at regular intervals in a text was thought to be helpful, with a preference shown for a “The Story So Far” paragraph to be inserted at the start of each chapter.
Participants appreciated the size and feel of the sample cover. They found the idea of providing a list of characters on a bookmark too fussy and preferred to see the list printed on the front flap. They had no objection to adding a publicity sticker to the front of the cover and including the words “memory-supporting features” was not thought to be insensitive.
Also noted: experienced readers showed a continued interest in engaging with demanding texts despite their memory impairment. When pressed for an opinion, they were not particularly critical of the layout and typeface used in the samples but viewed the invitation to suggest changes with interest. Participants’ main concern was with the content of a text, and many expressed a willingness to struggle with poor design if the narrative was sufficiently interesting. Perhaps rather surprisingly, participants referred to their ability to visualise people and events “in their mind’s eye”. They also continued to appreciate humour both in conversation and on the page.
What the results suggest
Taken together, the fieldwork and the formal studies suggest that there are a number of adjustments which might facilitate errorless reading. Substantial typographical modifications do not appear to be necessary for the habitual readers who go on to develop Alzheimer’s disease. However, it would seem to be essential to avoid any obstacles that might interfere with a correct understanding of the text. Readers are likely to benefit from a well-defined typeface and a page layout that is familiar and offers prominent, conventionally positioned running heads and page numbers. Space should be used to connect and to separate; identical and contrasting colours may be used to indicate similarity and difference; unnecessary decorative features may cause distraction and need to be avoided.
Finding that informants retained their ability to visualise scenes and people was surprising given the wide range of losses that can be caused by strokes and brain injuries (Zeman et al., 2016). Research into the commissioning of texts for readers with early-stage dementia would need to explore this aspect of imagination, which lies at the heart of the author/reader collaboration.
The way forward
Publishing is a multidisciplinary exercise and producing books for any readership requires effective teamwork. The studies showed me that designers and editors can make useful adjustments to the content and presentation of texts, but that the contribution of user experience is vital when producing books that will appeal to readers with early-stage Alzheimer’s disease.
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† published text used in the preparation of sample materials for the studies
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