Making reading easier for people with dementia

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.

Within weeks of this observation, we had pairs, small groups and eventually large groups reading together. As the groups grew larger, people had to sit further from each other. A small voice amplifier was introduced to the reader of the moment. That led not only to louder and clearer reading voices (the group could now more clearly hear one another) but it also led to the concept of a leader amongst themselves. Fairness is important in all social groups and activity staff members would shift the voice amplifier from reader to reader every few pages.

As the residents’ interaction and initiation abilities developed, it became clear that the less staff members did, the more residents would do. The concept of minimizing staff’s assistance in these interactive reading activities was counter-intuitive. As staff members receded into the background, the residents became less dependent on them. Minimizing the role of staff led to more personal involvement, challenge, engagement and peer to peer interaction for PWD. What started as independent reading became in this group format a significant new form of spontaneous socialization.

With the continued support from the administrator and the therapeutic activities director, the reading2connect program has become an integral part of EMHC’s activities. We have witnessed how group reading, with age- and ability-appropriate materials, enables a kind of independence from staff leading to enriched enjoyment amongst long-term residents.

Continuing to build on patient feedback and potential, and with further involvement of EMHC’s activities staff, CNAs, families and volunteers, another element of our reading program, The Reading Café, was born. Taking place in a large room, The Reading Café promotes interactive and parallel reading. Residents come and go as they wish and participate in the various reading situations that are occurring simultaneously. In one part of the room, a few residents, each with a copy of the same book, are may sit in a circle, taking turns reading aloud, sharing stories and laughing. At a small table, there might be a few residents engaged in more parallel reading, each with a different book, reading quietly, occasionally sharing a picture or a comment. Two residents might be sitting together by the window, holding one book together, taking turns reading aloud. In another part of the room, one resident may be reading aloud to another resident who perhaps is unable to read due to low vision. Staff support these resident-led activities in a quiet, unobtrusive manner, providing book supports and back cushions as needed, making sure chairs and tables are positioned optimally, adjusting lighting, cleaning eye glasses, etc., and then receding into the background. Individuals can come and go allowing the group at large to continue reading.

Taking the context of social reading one step further, and with full participation from the staff, we began adapting scripts of plays written for and by seniors. The concept of theatre is stored in everyone’s long-term memory and readily retrieved. When given print adapted scripts, many residents read these brief, humorous skits with expression and enthusiasm, each person taking a role in the play. Once again, staff members remain behind the scenes as much as possible and residents take charge.

We’ve also incorporated our supportive reading methodology into the context of music. Requiring a small amount of coordination between staff and visiting musicians, we provide residents with adapted song lyrics, enabling them to sing and interact with musicians who come to entertain. Visiting musicians immediately notice the residents’ decreased passivity and increased engagement when reading is incorporated into their performances.

While facilities look for new materials, we continue to create more adapted books, skits and song lyrics. We have also developed an electronic template enabling staff and families to write their own books in our standardized format.

As reading becomes a bigger part of the lives of these individuals we have seen how reading a book can distract an agitated patient. A clinical study is now in development testing whether an aide sitting with an agitated patient and reading together can avoid the need for sedative medication for that patient. The outcome is unknown, but at the pre-pilot level we are seeing hopeful signs if reading can be initiated prior to escalation of agitation.

Is our reading program just about stimulating and engaging long-term care residents? To our surprise, No. Over time, we found that when staff learned and practiced the subtleties of our Invitations to Read concept, best care principles for PWD were clarified and reinforced. What started as staff training for a reading program has proven to be staff training on many levels. When we train staff on how to implement our reading program, we inevitably discuss and model the importance of respect and how to optimize resident independence and engagement in all situations. We demonstrate how to minimize staff direction during all recreation activities and contexts (eg, mealtime, social situations, ADLs). When learning how to facilitate independent reading, staff learn about the behavioral effects of factors such as distracting environmental stimuli, poor postural support, low lighting and use of materials that are not age- and ability-appropriate materials. We practice communication strategies that optimize functioning while respecting the individual. Current best practice dementia care principles are key components in our training program.

Without the Administrator, Recreational Therapy Director and staff at EMHC, and most importantly, without the many long-term residents there and nearby, we couldn’t have developed the accessible print format and the reading2connect program that brings to light the untapped reading and conversational potential of long-term care residents.

Our goals keep evolving but we dream of a time when every long-term care resident is afforded the opportunity to read together and every long-term community will have a continuously growing library of accessible reading material for their residents. As we continue to share our books, print methodology and reading program with new communities, we grow closer to the ideal of integrating reading—one of the most automatic, long-preserved, dignified human abilities—into the lives of all people living with dementia.

Topics: Alzheimer's/Dementia , Articles