Article
Marie E. Leahy

Designing books for readers with early‑stage Alzheimer’s disease

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:

  1. What impact does early-stage Alzheimer’s disease have on an individual’s capacity to read for pleasure?
  2. 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.

Preliminary fieldwork

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 samples in each case were based on existing books and followed the typography and page design of traditional texts.

Diagram of the first layout used in the Participant interview study
Figure 1a: Diagram of the first layout used in the Participant interview study. The illustration is inserted after its point of reference in the text.
Diagram of the second layout used in the Participant interview study
Figure 1b: Diagram of the second layout used in the Participant interview study. The illustration is positioned opposite the reference in the text.
Fictitious text describing a portrait by Rubens
Figure 2a: Fictitious text describing a portrait by Rubens. Image reproduced by courtesy of the Royal Collection Trust/© Her Majesty Queen Elizabeth II 2022.
Fictitious text with added subheadings describing a portrait by Rubens
Figure 2b: Fictitious text with added subheadings describing a portrait by Rubens. Image reproduced by courtesy of the Royal Collection Trust/© Her Majesty Queen Elizabeth II 2022.
Pages of dialogue from Lynda La Plante’s The Little One
Figure 3a: Pages of dialogue from Lynda La Plante’s The Little One (pp. 10–11). Excerpt included by permission of Simon and Schuster Ltd.
Figure 3b: Pages of dialogue from Lynda La Plante’s The Little One (pp. 10–11) with added references to the speakers’ names. Excerpt included by permission of Simon and Schuster Ltd.
The opening page of Katherine Mansfield’s The Doll’s House
Figure 4a: The opening page of Katherine Mansfield’s The Doll’s House. From the anthology A Little, Aloud (Chatto & Windus, 2010). Excerpt included by permission of The Reader: A Little, Aloud, Chatto & Windus, 2010.
The opening page of Katherine Mansfield’s The Doll’s House with editorial changes
Figure 4b: The opening page of Katherine Mansfield’s The Doll’s House with editorial changes. From the anthology A Little, Aloud (Chatto & Windus, 2010). Excerpt included by permission of The Reader: A Little, Aloud, Chatto & Windus, 2010.

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:

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.

The list of characters positioned opposite the title page of Charles Dickens’s A Christmas Carol – the text is ranged left
Figure 5a: The list of characters positioned opposite the title page of Charles Dickens’s A Christmas Carol (1843). The text is ranged left.
The list of characters positioned opposite the title page of Charles Dickens’s A Christmas Carol – the text is centred horizontally
Figure 5b: The list of characters positioned opposite the title page of Charles Dickens’s A Christmas Carol (1843). The text is centred horizontally.
The plot summary positioned at the end of a chapter
Figure 6a: The plot summary positioned at the end of a chapter.
The plot summary facing the opening page of a new chapter
Figure 6b: The plot summary facing the opening page of a new chapter.

Book cover study: the samples tested memory-supporting additions to a work of fiction. The additions were:

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.

Bookmark, attached by a ribbon, providing a list of the characters in Robert Louis Stevenson’s Treasure Island

Figure 7: Bookmark, attached by a ribbon, providing a list of the characters in Robert Louis Stevenson’s Treasure Island (Cassell & Co., 1883).

Bookmark with a list of the characters in Treasure Island

Figure 8: Bookmark with a list of the characters in Treasure Island provided as a detachable strip printed on the front flap.

Alternative designs for a publicity sticker

Figure 9: Alternative designs for a publicity sticker, with (left) a book motif and (right) an elephant motif.

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 results

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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References

† published text used in the preparation of sample materials for the studies

Alzheimer (2021). Alzheimer’s Society. Dementia symptoms and areas of the brain. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/symptoms-brain

Bate, H.J. (2014). Too late to learn to drive: dementia, visual perception and the meaning of pictures. Pictures to Share Community Interest Company.

Bateman, J.A. (2014). Text and image. A critical introduction to the visual/verbal divide. Routledge.

Bayles, K.A. & Tomoeda, C.K. (2013). MCI and Alzheimer’s dementia: clinical essentials for assessment and treatment of cognitive-communication disorders. Plural Publishing, Inc. https://discover.libraryhub.jisc.ac.uk/search?title=MCI%20and%20Alzheimer%27s%20dementia%20%3A%20clinical%20essentials%20for%20assessment%20and%20treatment%20of%20cognitive-communication%20disorders&rn=1

Bower, G.H. (1976). Experiments on story understanding and recall. Quarterly Journal of Experimental Psychology, 28(4), 511–534. https://doi.org/10.1080/14640747608400579

Brooks, J., Savitch, N. & Gridley, K. (2017). Removing the ‘gag’: involving people with dementia in research as advisers and participants. Social Research Practice, 3–14. https://eprints.whiterose.ac.uk/112463

Creamer, S. & Schmitter-Edgcombe, M. (2010). Narrative comprehension in Alzheimer’s disease: assessing inferences and memory operations with a think-aloud procedure. Neuropsychology, 24(3), 279–90. https://doi.org/10.1037/a0018107

Davis, P., Magee, F., Koleva, K., Tangeras, T.M., Hill, E. & Baker, H. (2016). What literature can do: an investigation into the effectiveness of shared reading as a whole population health intervention. The Guy’s and St Thomas’s Charity. https://research.gold.ac.uk/id/eprint/18847/

† Dickens, C. (1843). A Christmas Carol. A Ghost Story of Christmas. https://www.gutenberg.org/files/46/46-h/46-h.htm

Eichenbaum, H. (2017). On the integration of space, time, and memory. Neuron, 5, 1007–1018. https://doi.org/10.1016/j.neuron.2017.06.036

Embree, L.M., Budson, A.E. & Ally, B.A. (2012). Memorial familiarity remains intact for pictures but not for words in patients with amnestic mild cognitive impairment. Neuropsychologia, 50(9), 2333–2340. https://doi.org/10.1016/j.neuropsychologia.2012.06.001

Geertz, C. (1973). Thick description: towards an interpretive theory of culture. In C. Geertz, The interpretation of cultures (pp. 3–30). Basic Books, Inc. https://web.mit.edu/allanmc/www/geertz.pdf

Hartley, J. & Trueman, J. (1983). The effects of headings in text on recall, search and retrieval. British Journal of Educational Psychology, 53(2), 205–214. https://doi.org/10.1111/j.2044-8279.1983.tb02551.x

Hudon, C., Belleville, S., Souchay, C., Gély-Nargeot, M.C., Chertkow, H. & Gauthier, S. (2006). Memory for gist and detail information in Alzheimer’s disease and mild cognitive impairment. Neuropsychology, 20(5), 566–577. https://doi.org/10.1037/0894-4105.20.5.566

Kempler, D., Almor, A. & MacDonald, M.C. (1998). Teasing apart the contribution of memory and language impairments in Alzheimer’s disease. An online study of sentence comprehension. American Journal of Speech–Language Pathology, 7(1), 61–67. https://doi.org/10.1044/1058-0360.0701.61

† La Plante, L. (2012). The Little One. Simon & Schuster UK Ltd.

Leahy, M. (2021). Reading with early-stage Alzheimer’s disease. Modifications to book design as a way of supporting preserved memory skills. [Doctoral thesis, University of Reading.] Central Archive at the University of Reading. https://doi.org/10.48683/1926.00100747

Lleó, A. & Blesa, R. (2017). Clinical course of Alzheimer’s disease. In G. Waldemar & A. Burns (Eds), Alzheimer’s disease (2nd ed., pp. 27–41). Oxford University Press.

Lorch, R.F. (1989). Text-signaling devices and their effects on reading and memory processes. Educational Psychology Review, 1, 209–234. https://doi.org/10.1007/BF01320135

† Mansfield, K. (2010). The Doll’s House. In A. Macmillan (Ed.), A Little, Aloud (pp. 25-35). Chatto & Windus. (Original work published 1922)

Mollerup, P. (2013). Wayshowing > Wayfinding: Basic and interactive. (2nd ed.). BIS Publishers.

Patterson, K.E., Graham, N. & Hodges, J.R. (1994). Reading in dementia of the Alzheimer type: a preserved ability? Neuropsychology, 8(3), 395–412. https://doi.org/10.1037/0894-4105.8.3.395

Ritter, R.M. (1992). The Oxford manual of style. Oxford University Press.

Snowdon, D.A. (2003). Healthy aging and dementia: findings from the Nun Study. Annals of Internal Medicine, 135(5), 450–455. https://doi.org/10.7326/0003-4819-139-5_Part_2-200309021-00014

Stern, Y. (2012). Cognitive reserve in ageing and Alzheimer’s disease. Lancet Neurology, 11, 1006–12. https://dx.doi.org/10.1016%2FS1474-4422(12)70191-6

† Stevenson. R.L. (1883). Treasure Island. Cassell & Co. https://www.gutenberg.org/files/120/120-h/120-h.htm

Sweller, J. (1988). Cognitive load during problem solving: effects on learning. Cognitive Science, 12(2), 257–285. https://doi.org/10.1016/0364-0213(88)90023-7

Tatler, B.W., Wade, N.J., Kwan, H., Findlay, J.M. & Velichkovsky, B.M. (2010). Yarbus, eye movements, and vision. i-Perception, 1, 7–27. https://doi.org/10.1068/i0382

Wasson, C. (2000). Ethnography in the field of design. Human Organization, 59(4), 377–388. https://doi.org/10.17730/humo.59.4.h13326628n127516

Yarbus, A.L. (1967). Eye movements and vision. Plenum Press.

Zahn, R. and Burns, A. (2017). Dementia disorders: an overview. In G. Waldemar & A. Burns (Eds), Alzheimer’s disease (2nd ed., pp. 1–7). Oxford University Press.

Zeman, A.Z.J., Dewar, M.T. & Della Sala, S. (2016). Reflections on aphantasia. Cortex, 74, 336–337. https://doi.org/10.1016/j.cortex.2015.08.015

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