Transforming Aging Through the Power of Reading
Mr. S, a gentleman living in a skilled nursing setting, shared that reading was the thing he missed the most since his diagnosis. I asked him to show me what happens when he tries to read. He chose a magazine article and attempted to read it aloud. His frustration and struggles were heartbreaking.
And I began to wonder... Can people living with dementia read? If not, why not? What exactly are their barriers to reading?
When you look into why we humans like to read, you find statements such as,
"We read to know we're not alone." "With reading, we slip into another's skin, another's voice, another's soul." "Books unfold new worlds, worlds that can sing to you, comfort you, quiet you." "Books help us understand who we are." What a shame that residents in long-term care cannot have these transporting, comforting, uplifting experiences in a time when they need them most. After all, as everyone knows, people living with degenerative conditions can no longer read in any meaningful way. Correct?
No; this assumption is not correct. And here's why.
The ability to read is stored in the long-term procedural memory. It's an automatic skill that most older adults retain, to some functional degree, until the late stages of dementia. Although people living with dementia experience declines in visual, cognitive, and sensory areas, the basic ability to read is relatively untouched by dementia.
For instance, most individuals in long-term care experience deficits in oculomotor control, working memory, simultaneous processing, and attention. These skill areas are related to reading, but are not reading itself. Decline in visual/cognitive skills dramatically impacts one's ability to read standard magazines, newspapers, and books, even when the actual skill of reading is intact.
Imagine being able to read, but all of the printed material around you is unreadable. What would that do to your self-esteem and your sense of connectedness?
The question is, can we adapt text in some way (eg, syntax, graphic layout, font) to compensate for the cognitive deficits that most long-term care residents experience? What if we could format the text in a way that brings forth elders' latent, preserved ability to read? It would have to be reading material that is accessible to this group, while retaining the integrity of adult literature. Age/dementia-friendly text needs to be ability-appropriate AND age-appropriate. What would that look like?
Accessible reading material for older adults should incorporate multiple print adaptations, such as:
Bright white paper and bold text for high visual contrast to help with selective attention.
Short, direct syntax, with simple sentence structure, to assist with working memory.
Wide margins for easier visual tracking.
Space between sentences to ease simultaneous processing.
Abundant, colorful images to draw the reader in and increase sustained education.
True dementia care is about compensating for individuals' deficits and nurturing their strengths. It's about maximizing their agency and minimizing their reliance on others.
The benefits of reading are invaluable for someone living with a neurodegenerative disease. Enabling residents to independently explore and wander through ability-appropriate and age-appropriate reading material, in their own way, at their own pace, shows respect for their past, present, and future selves. Reading brings vitality into their minds, helps them remember who they are, and gives them intimate experiences with others. Books remind them that they are not alone.
As UNESCO asserts, "Reading is a democratic, human right and necessity to quality of life." The International Publisher's Association states, "Reading is crucial for an individual's personal development and his/her focus on the outside world and on other people."
We in the field of senior care are severely underestimating and often ignoring the untapped reading capacities of adults living with cognitive changes. Entering a literary abyss should not be an inevitable part of aging. By creating our own adapted reading material, or acquiring books written for people with memory challenges, or training staff to facilitate resident-led reading programs, we can bring this simple, universal joy back to the elders in our care.
As residents, families, and staff attest, accessible reading melts away the confines of social isolation. It revives minds and voices, as was the case for Mr. S.
After a week of trial and error, Mr. S and I discovered a print format that enabled him to read an article on his own. He commented on the content with relevance and originality. The text tapped into Mr. S's prior knowledge and life-long experience. I asked him if he would like more highly readable, adapted articles. With a slight tremor, he answered, "Yes...I feel saved."
Susan Ostrowski, MA, MS, CCC-SLP