From my vantage point as a speech pathologist, the first time I walked into a skilled nursing setting I almost lost my composure. The residents appeared half asleep, detached, silent. Their days were an unsettling mix of over-stimulation—meaningless noise and movement—and under-stimulation. Their minds were not engaged. At that moment, I made a pledge to find some way to contribute to changing the culture of aging.
One day, while conducting a cognitive evaluation with a resident, Mr. S, I watched as he failed the reading subtest and became despondent. It was typical for nursing home residents to fail standardized tests’ reading sections, but for some reason this time it struck me. I thought, “Well, why can’t he read? He has functional use of spoken language, why not written language?”
Mr. S shared that one of the things he missed most was reading. With Mr. S in the lead, we set out to identify his barriers to reading and ways to get around those barriers. We experimented with modifications to the text of an article, making sure to retain its integrity and level of intelligence. Eventually, it worked!
With applied text adaptations, Mr. S was able to read comfortably and talk enthusiastically about what he had read. When I asked him if he would like me to share this with his family so that they could produce more accessible articles for him, he said, “Yes … I feel saved.”
Reading and Dementia
Reading is a stubborn skill. It is deeply rooted in our procedural, long-term memory. There’s an automaticity to reading that keeps it alive, like a pilot light. Nonetheless, most people living with cognitive changes, due to age or dementia, can no longer read typical books, newspapers and magazines.
‘Brief but impactful is the necessary writing style for this readership.’
The reason has to do with the cognitive deficits that occur on the outskirts of the actual skill of reading. For example, simultaneous processing, working memory, sustained attention, symbolic processing, selective attention, organizational skills, and eye muscle control. The diminishment of these reading-related skills freezes up, in a sense, one’s capacity to read.
Reading2Connect is the only organization that has done an in-depth analysis of how to compensate for the cognitive disruption that hinders older adults’ use of their intact, preserved reading skills.
Here are a few of the successful adaptations we use at Reading2Connect:
- Direct syntax and short sentences to decrease simultaneous processing demands.
- Phrasing, with mid-sentence line breaks, to help with organizational thought and slow down the reading process. We read vertical writing (e.g., poetry) more thoughtfully than we read horizontal writing.
- Abundant, colorful, easy-to-discern images to enhance language comprehension, deepen the emotional response to the text and stir personal expression.
- Repeated vocabulary and frequent main theme references to compensate for working memory limitations.
- Spiral binding and heavy paper to allow for independent handling of the book. Bright white paper makes for high visual contrast.
Content is also critically important. Reading takes a lot of energy for older adults. If the material does not intrigue, delight and challenge, the older reader will put it right down. Brief but impactful is the necessary writing style for this readership.
Reading2Connect has produced more than 50 age/dementia-friendly books and we have more coming down the pike. Our books are available in multiple languages and are printed on washable, tear-resistant paper for infection control and durability. We also produce age/dementia friendly eBooks and Audiobooks.
What does independent, leisurely reading mean to an individual relying upon the care of others?
Depth of thought and conversation: With memory decline, one’s ability to think deeply is at risk. It’s difficult to keep track of one’s train of thought as details and recollections pop up and fade away.
However, print is patient; it’s not going anywhere. An accessible book is a set of visual scaffolding that provides organizational support and word-finding assistance. With an adapted book, an older reader can hover over a topic, dwell on the memories that surface, and make conceptual connections, all at their own pace, while staying grounded in the main idea.
For years, older adults and their staff/partners have excitedly reported more authentic conversation and more genuine emotional connections when sharing an accessible book, as evidenced by the reactions we hear, like this from Ann Rowthorn, whose mother has dementia: “I am just crazy to help my mother communicate, and as far as I can see, reading is virtually the only vehicle that works for her.”
Learning and growth: Aging is a developmental stage of life. A time of loving, growing and learning, like all life stages. A quality book for people living with dementia must have elements that are deeply familiar and affirming, as well as elements that are surprising, fresh and challenging. Most people living with dementia will lose interest in a book made up of “things I already know.” When the book has the right degree of novelty, we receive feedback like, “I didn’t know that!” and, “That’s interesting!”
To learn is a need, a desire and a source of joy. Memory impairment does not dampen our innate sense of curiosity and exploration. As Melinda, a memory care resident said, “I love the books! And visiting with everyone, seeing everyone and talking about what we learn.”
Beverly, another resident shared, “Very interesting. I’m not able to read print, but this was nice because I learned quite a bit about some of these dogs. Very good. Nice clear print and understandable.”
For quality of life, we must feel that we can contribute to the betterment of our social environment. Accessible books give older adults a platform to help others and to lead others. Elders can read to small children (e.g., with our “Night Before Christmas” book). With older children, elders can share personal experiences around a historic topic (e.g., our “Korean War” book). They can read to their peers living with low vision or with significant language challenges. With accessible print, adults living with dementia can lead singing groups, prayer groups, comedy hours, trivia and rituals like pledging to the flag and saying grace.
‘To learn is a need, a desire and a source of joy.’
“I’ve known these residents for years and they are people who don’t usually communicate. And yet, with the books, they were talking and reading ... and to each other! I’ve never seen this before, ever,” said Ann Marie Denegre, an RN in a skilled nursing facility.
More importantly for all of us, when sharing and discussing literature, older adults express their unique views, backgrounds and voices that one would not hear from other age groups. We can all benefit from the quiet, contemplative thoughts of those with the most life experience. The voices of our eldest citizens are worthy of our attention.
“The Reading2Connect books respect the culture of the elderly, rather than forcing the culture of children on them. The residents’ minds were churning; they were alive in every sense of the word,” said volunteer John Katz.
In 2014, Reading2Connect began as a research project. It has since expanded into a robust, highly effective, elder care program appropriate for a variety of settings, such as skilled nursing, assisted living, adult day centers and home care.
We have developed an array of accessible books ranging from high interest topics (e.g., dogs, fishing) to more culturally specific books (e.g., “Rosa Parks,” “Jewish Reflections”). When a care community acquires the Reading2Connect program, they receive a large collection of books, online coach training, subscriptions to micro-learning courses for staff, and ongoing customer support. Our high-quality materials and training make for an effective, sustainable program with benefits that extend to the whole community.
To learn more go to Reading2Connect.com or email Susan Ostrowski at Susan@Reading2Connect.com.
Susan Ostrowski, MA, MS, CCC-SLP, is a speech-language pathologist and the co-creator and president of Reading2Connect in Connecticut.
Photo: Woman shown engaging with a Reading2Connect book.
Photo Courtesy Reading2Connect.