by Nancy Reinhardt
So, here’s the case that prompted the fascination: I had a cognitively intact patient who admitted to my nursing home with Progressive Supranuclear Palsy (for those of you who don’t know, this is a disease that results in the gradual deterioration of the brainstem and results in, among other things, decreased speech intelligibility along w/ decreased coordination- for more information, I recommend visiting www.psp.org). On admit, this gentleman was able to verbally communicate, although speech intelligibility was markedly impacted to unfamiliar listeners. As the disease progressed (I had the pleasure of working with him over approximately 3-4 years), I found myself having to develop a completely new communication method approximately every 6 months! This became quite the exercise in not only creativity for me, but resulted in a significant amount of staff training and instruction on a regular basis in order to reduce staff and patient frustration.
Initially, when his speech was still > 50% intelligible in context, I was able to supplement in pretty simple ways- encouraging staff to set context by asking yes/ no questions or providing choices when possible, supplementing with a picture board, encouraging the patient to point to facilitate context. As his disease progressed, not only did his speech deteriorate, but he also presented with decreased overall motor movements resulting in decreased upper extremity range of motion, decreased vision (due to decreased ocular movement), and increased need for assistance. He was falling frequently because he still had the wherewithal to know when he needed something, but lacked the patience to wait for the assistance that isn’t always swift in arriving. I received cognitive referrals for this man approximately every (2-3) months- every time he was able to pass any measure administered.
I was able to obtain an AAC for this particular patient with both touch screen and scanning button access. This method was successful for a while in the mid- later disease stages; however, multiple tiers of screens were required as only (4-6) choices were able to be on the screen at once, he lacked the coordination to use the keyboard, and, despite multiple in-services provided, the device was often on the other side of the room and/or turned off. All of these obstacles led to increased frustration on the patient’s behalf and also resulted in increased falls.
Finally, toward the end of his disease process, he was only able to utilize his fingers effectively, but did not have the range of motion to lift his hand to use the AAC, nor the coordination to time the pressing of the scan button despite reprogramming the switch to varying delays/ controls. His speech was diminished to moans, grunts, and completely unintelligible verbalizations at this point; however, communicative intent was evident. At this point, I was at a loss. I could tell he was frustrated, but was unsure how to help. Finally, as a last resort, I tried teaching him the ASL alphabet. He was able to imitate and copy the signs with a reasonable degree of accuracy and was able to learn enough over (2-3) sessions to be able to spell novel words and communicate. The best moment as an SLP is when you are able to “unlock” your patient and allow them to communicate. This moment, for this particular patient, occurred when he was able to finger spell “It’s nice to talk to you” in response to my comment that it was nice to be able to communicate with him again. Coupled with his huge smile, it was the best reward I could ask for.
Being in a skilled nursing setting, you are faced with a variety of limitations with regard to your communicative options. Not every facility (or at least none that I know of) has the budget to provide patients with access to iPads or other technology that is available that may increase patient communication, and patients are often on limited budgets and cannot afford to purchase a device for themselves. In addition, you have to remember that these people have generally used speech to communicate their entire life. A communication/ picture board can be very limiting and frustrating for patients when what they need is not available, and it is impossible for us to include every possibility. Even when speech is limited (in the case of aphasia), or limited with decreased intelligibility (in the case of dysarthria or apraxia), patients will continue to attempt to communicate verbally as this is ingrained behavior. Always keep limitations of the devices/ supports in mind to decrease frustration and improve carryover with use- if a patient becomes discouraged because they are limited and/ or can’t communicate what they want to say, all of your hard work has gone to waste.
Finally, staffing is always an issue. While I am well aware of how busy aides are and how many patients they have to attend to, I always try to educate on how my communication methods can make their job easier. For instance, if a patient is able to communicate that they need to use the restroom, the aides won’t have to transfer them back to bed to clean them up, or if they are able to communicate that they need pain medications, they won’t be crying out and potentially disturbing other residents.
If you find yourself in this situation, here are some things you can try:
- Establish a yes/ no response that is consistent for your patient, and train staff in carryover and use
- Educate nursing staff to direct context, use closed ended questions (i.e. yes/no, establish choices- instead of asking “what do you want for dinner?” ask “do you want chicken or beef for dinner?” or “do you want chicken for dinner?”)
- Trial low tech devices, such as picture boards, ABC boards, yes/ no boards, and communication books- however, always keep patients and family involved in creating individualized books/ boards whenever possible to decrease frustration
Additional information for nursing staff/ education is provided in a convenient hand out here: http://www.patientprovidercommunication.org/article_2.htm