Can those with dementia read? If not, why? Those two questions, tossed back and forth over three years formed the basis of an ambitious trial-and-error effort to understand the difficulties a person with dementia (PWD) can encounter when approaching a printed page.
Essex Meadows Health Center, Essex, Connecticut, (EMHC), became the test bed for a speech pathologist and a primary care physician as they grappled with the many interconnected aspects of reading among seniors with dementia. EMHC provided a changing cast of characters with varied backgrounds and disorders, many living with dementia. Person by person, they taught us that the reason reading was so difficult was that the print of most material was virtually inaccessible. Visual tracking, selective attention, working memory, light perception and manual dexterity are deficient at variable levels in this population. Every individual requires more of one than does the next, but a common print format can accommodate most of those requirements.
The ability to read is retained in most people with dementia (PWD). When the text is readily accessible, their reading capacity is apparent. Our methodology is successful in leading many PWD to read, on their own, not just for practical purposes (i.e., safety precautions, orientation, autobiographical information), but for personal enjoyment and enrichment. The vast majority of long-term care residents continue to want to learn new things just as they did when they were younger. With eager smiles they reach for our adapted reading material and read for the sheer joy of reading.
Early in our studies, we used five different prototypes and worked one-on-one with individual residents. As time went on with trial-and-error testing of many residents, we developed a specific format with high contrast, direct syntax and carefully lineated text which appealed to nearly all in easing the effort of reading.
Critical to this format were many precise print, language and content considerations including graphic layout, typeface, syntax, lineation, visual contrast, referential language and subject matter. For optimal acceptance, the integrity of the content and vocabulary had to be retained. If the writing did not reflect the strengths and experientially rich lives of this population, then the readers’ interest waned.
Not surprisingly, developing the accessible print modifications necessary to read led to the formulation of a series of books. It was clear most long-term residents wanted to read more than simple headlines or signage. However, due to selective and sustained attention difficulties and fatigue, holding the reader’s attention was a challenge. We discovered that interspersing clear, intriguing photographs reflecting the content of the corresponding page was instrumental in sustaining a reader’s focus. As our pages became books the concept of a title in bold print placed above a relevant photo on one page and 10-15 lines of text with ample margins on the facing page became the basis of our format. The text, photo and title drew from different areas of the mind and were synergistic in serving to focus and keep the reader’s attention.
EMHC activity staff and aides continued to assist us in sitting with individuals, putting into practice our Invitation to Read techniques and facilitating the self-directed, independent activity of reading. When family members came to visit they were coached on how to engage in interactive reading with their parents or spouses. Reading/enjoying books together made visiting a loved one with dementia far easier and more comfortable for both parties.
An accessible, thematic book provides scaffolding for conversation. Declarative information that is so difficult for PWD to recall is provided on the page and is permanent. With the support of the relevant vocabulary and images in front of them, photographs and words stimulate personal, episodic memories enabling PWD to more easily describe and share in conversation.
To see if our theories would work similarly at other long-term care sites, we arranged pilot tests at five skilled nursing facilities and memory care units within an hour’s drive. Persuading administrators unfamiliar with our work to listen to our story and to allow us to work with their staff was a challenge. Some were receptive but others were skeptical. Once we were invited into a facility, we modeled how to implement our protocol and how to enhance a resident’s independent reading by optimizing environmental, postural, lighting and book placement factors. Once on board, each facility’s administrator and staff were surprised and delighted to see their residents with dementia responding to the modified text/title/photo format and expressing deep appreciation for being able to read again.
We now had a book format enabling most (many) long-term care residents to read on their own for the sheer pleasure of reading.
In one of those unexpected flashes of insight, we gave one book to two patients sitting side-by-side, elbow to elbow in their wheelchairs. We asked each one to hold their respective half of the book. Almost effortlessly these two began to read to each other.
They decided who would read what. They commented about the subjects and the photos and they asked each other for clarification. They chuckled together at humorous parts of the book. What one said brought a memory back to the other and spontaneous conversation started, tangential to and independent of the book.
A spontaneous conversation between two individuals with dementia? Yes, a conversation—and smiles, gestures and the spark of interaction, friendship and collaboration.
When residents engage in text-based conversation, one sees genuine peer-to-peer dialogue demonstrated by topic maintenance, a relatively high degree of question initiations and on-target responses.