Still Traveling the Road
Six years ago The ASHA Leader published “Side By Side: Traveling the Road—and Sharing the Load—of Alzheimer’s Disease.” In this article, I described how I established a social communication system using newspaper articles for my husband, Dave, who had been diagnosed with Alzheimer’s disease at the age of 54. When we first began using the newspaper to augment verbal language, Dave’s communication skills were limited to echolalic responses. These responses were his attempts at turn-taking behavior, characteristic of conversational sequences.
In this early stage of the disease, although Dave’s expressive language was compromised, his receptive language was still intact—thus, he was able to answer yes/no questions and read short phrases. Based on the research of Bourgeois on memory wallets and cuing systems, I designed an advanced memory wallet system, pairing retained abilities with prior interests. In a three-ringed leather portfolio, I preserved newspaper articles that Dave had selected during the day and scanned them into the computer, each accompanied by a short phrase Dave read orally. These articles became the basis for our after-dinner conversations. “Let me put words into your mouth” took on a whole new meaning.
Because he was unable to initiate or engage in conversation in the conventional manner, using the newspaper allowed him to engage in a most important activity of daily living, one that connected Dave to his loved ones and friends as well as to the outside world. I continually adapted this communication technique to meet Dave’s ever-declining functional communication, and he remained able to socialize with family and friends for a year and a half.
- provide a description of the disease progression over a five-year time frame, with the unique and ironic advantage of both the personal and clinical perspectives
- discuss the linguistic deficits experienced by my husband
- explain a functional meaningful communication intervention designed to allow Dave to communicate at an adult level
- review Medicare coverage guidelines for Skilled Maintenance Programs (SMP)
Seeking New Answers
After Dave could no longer communicate on a social level, could not answer yes/no questions, and had no executive function, the newspaper portfolio was no longer an effective communication tool. At seven years post-diagnosis and in the middle stage of the disease, it was time to find a different way for Dave to communicate. The goal changed from communicating at the conversational level to making basic needs known.
As a careful observer, I noted that Dave had head and hand movements that appeared to be rudimentary gestures. He used a simple hand-to-mouth gesture when hungry, a head-forward movement to indicate a kiss, and stomach patting while bending at the waist when toileting was needed. At first these movements were crude and inconsistent, but through the principles of conditioning theory purported by B. F. Skinner—with positive reward each time the gesture was used—the once seemingly random movements became established as meaningful gestures. All of Dave’s caregivers were then trained to recognize and respond to these gestures.
As the disease continued to advance and previous individualized programs were no longer appropriate, the ability to provide meaningful communication became an increasing challenge. Now that Dave is in end-stage Alzheimer’s, it is difficult to assess his linguistic/cognitive status in a conventional manner, since no stimulus elicits a consistent response. Almost on a weekly basis I note glimmers of comprehension, as demonstrated by occasional facial expressions and/or inflected sounds. In keeping a diary of these occurrences, I found that they usually occur during small social gatherings when two or three people are conversing.
One such occasion happened recently when our children came in for a visit. Our grandson Joey, 2 1/2, was playing on the floor. Dave, seated in his wheelchair and positioned in direct view of his grandson, painfully extended his right arm towards Joey, hand trembling, fingers quivering, and made what sounded like a breathy and garbled directive—“cumere.” Given the pragmatics involved, we all interpreted the moment as Dave asking his grandson to “Come here.” When I tried to put Joey on Dave’s lap, our grandson recoiled and began to cry. Reading the pain in my husband’s eyes, I empathetically felt the rejection. The hurt I felt through Dave motivated me to find a way for grandson and grandfather to communicate.
That evening, while reading a Winnie the Pooh story, Joey became fixated on the character of Eeyore, a blue donkey, sad because he lost his tail. I suggested to Joey that he kiss Eeyore and “make the donkey feel better.” I explained that, like Eeyore, Dave too had lost an important part of himself and that Dave looked sad because he could no longer walk or talk. Thus was born the concept of “Dave’s Tale.”
I created a PowerPoint presentation using pictures of Dave when he was well and looking happy, engaging in a variety of activities—hiking, biking, swimming, horseback riding, speaking at meetings, etc.—and inserted the tag line “Dave used to…” on each page.
In the presentation of “Dave’s Tale,” I explained that although Dave could no longer do these things and had an outer sad expression, he had an inner happiness when he was with Joey. At the end of the “tale” I suggested ways in which Joey could help Dave find his inner smile, including a visit, a phone call, saying “I love you,” giving hugs or kisses. On the last page of the story, when Dave’s sad image appears, Joey is instructed to “kiss the sad picture.” As he kisses the picture, the sad face “magically” fades out, replaced by a happy-faced Dave. I also created a printed version of “Dave’s Tale”—a spiral-bound and laminated hands-on book.
I encourage speech-language pathologists to think creatively, exploring the ever-advancing technology available and use it to create innovative client-centered skill maintenance programs—such as “Dave’s Tale”—for patients with dementia at all levels of impairment. When properly documented, such programs are billable under Medicare Parts A and B.
The outcomes have been positive for both Joey and Dave. Joey now asks, “How’s Dave?” He says “I love you, Dave,” over the phone and is no longer afraid to approach his grandfather. These simple acts have elicited Dave’s smiles, increased alertness when Joey visits, and an improved quality of life.
Gail Neustadt, was president of GKN Healthcare Consulting. A specialist in geriatric cognitive/communicative disorders, she owned and operated a private rehabilitation practice and has been a clinical educator for a national rehabilitation corporation.