The Cognitive Conundrum
ALS, MS, SCI & Other Mobility-Related Conditions Often Result in Cognitive Dysfunction
- By Laurie Watanabe
- Apr 01, 2015
Not surprisingly, cognition usually isn’t the first focus of seating & wheeled mobility professionals as they start working with new clients diagnosed with a spinal cord injury, multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS) or even a traumatic brain injury.
Mobility, seating, positioning and learning new ways to perform activities of daily living can take most of a rehab team’s time and attention, particularly when clients’ stays in rehab facilities are shortened.
But a significant portion of clients you’ll see with these conditions do have cognitive impairments. And that can affect how successful they’ll be with the seating & wheeled mobility systems they eventually take home.
How Can Cognition Be Affected?
Part of the challenge with cognitive impact is that affected clients can present in so many different ways…even if they have the same basic diagnosis. Because these presentations are so varied, they can be difficult to identify.
As Magdalena Love, OTR, ATP, Permobil clinical education specialist, points out, “When a brain injury is severe enough, cognition is evaluated. But in mild traumatic brain injuries (TBI), multiple sclerosis, ALS or any injury where there might have been lack of oxygen or trauma to the brain, the cognitive deficits might be subtle and not expressed clearly in an in-patient setting or without diving deep into executive functioning. Most common mild impairments fall under the classification of executive functioning.”
That can translate into problems with “reasoning, judgment, sequencing, regulating emotions, planning and self-awareness,” Love explains.
Lois Brown, MPT, ATP/SMS, notes that certain types of cognitive effects have been linked to those mobility-related conditions.
For example, she says, “Frontotemporal dementia is a term associated with ALS that signifies changes in cognitive behavioral issues. If the patient is associated with an ALS or muscular dystrophy clinic, these issues will be a part of their comprehensive evaluation. But if the patient is not, we as part of the seating & mobility team may observe difficulties with memory, following multi-step commands, the ability to use direct-select vs. indirect-select wheelchair controls, changes in mood or frustration levels — and we should report those changes to the clinic or physician for further evaluation.”
In patients with MS, “In addition to demyelination, [they] can develop plaques in the brain that can alter cognitive and behavioral function,” Brown says.
For TBI, “Whether caused by anoxia (lack of oxygen) or shearing injury to the axons in the brain, a brain injury will likely alter cognition, behavior, short-term memory, sequencing, the ability to follow multi-step commands as well as frustration tolerance and vision — all of which will affect the evaluation for a safe, effective mobility solution,” Brown says.
And for SCI, Brown says, “Depending on the mechanism of injury that caused the SCI, it is likely that a patient may have sustained a traumatic brain injury as well. Many times, saving the patient’s life and the secondary complications of SCI may take precedent in emergency care, and cognitive impact may be overlooked. Other emergency centers have established screening for brain injuries, and diagnostic testing is administered to make a diagnosis.
“But to complicate matters, mild TBI and its symptoms do not always show up on diagnostic tests, so just because a study is negative does not mean the treatment team should not be looking for them. These cognitive issues may be noted more as the patient begins to work with the treatment team — so look for difficulty in following multi-step commands, short-term memory issues, and asking the same questions over and over again.”
To make the situation even more complex, Brown acknowledges, “It is also possible that some of these symptoms can be associated with depression associated with the injury, not as a manifestation of an injury itself.”
Regardless of how challenging these issues are to detect, research has shown that cognitive difficulties are common among patients with these diagnoses.
“In ALS or MS, there may be deficits in writing and speaking, so traditional tests might not catch cognitive impairments,” Love says. “Additionally, the neurodegenerative nature of the diseases make tracking the progression of cognitive changes difficult. A study by Phukan et al., 2012, found that dementia occurred in 14 percent of newly diagnosed clients with ALS. Forty percent of individuals with ALS were found to have cognitive or behavioral impairments, and 46 percent of cases had no impairment at all. In other injuries, especially when mechanical ventilation is required, there may be incidence of anoxic brain trauma, which again may affect the executive functioning skills as well as memory and language comprehension.”
The Effect on Seating & Wheeled Mobility Choices
So what does that mean to the seating & mobility assessment? Very likely that clinicians and ATPs need to evaluate the cognitive difficulties their clients are having, and then choose products, options and controls that their clients can effectively operate.
The decision-making process starts with the power wheelchair base.
“Different types of drive-wheel configurations may have different levels of intuitiveness for individuals,” Love says. “Some clients have difficulty learning the driving techniques of a front-wheel-drive power wheelchair, while others who are impulsive might respond better to front-wheel drive’s tight turning aspect.”
Brown says that powered positioning may be confusing, particularly if more than one positioning option is offered, or if the options need to be used in tandem. “Tilt with recline can be difficult, unless you use a system to help the client remember to ‘tilt before recline,’ for example. Otherwise, combinations can sometimes be too confusing to manage and to use them so that they do not cause displacement of upright posture or shearing.”
Even technology as relatively straightforward as a seat cushion can be difficult to manage for a client with cognitive impairment.
“An air-filled cushion can be challenging unless a caregiver is able to help,” Brown says. “It can be a cognitive challenge to follow the recommended procedure for maintaining optimal fill. While companies are being innovative with tools to help clients be more accurate with optimal fill, it would still require advanced cognitive skills to manage and likely would require a caregiver to perform proper maintenance.”
But electronics and driving systems are probably the topics that first come to mind as potential concerns, whether they’re being used to drive the wheelchair or operate powered seating functions.
“Electronics especially take a varying amount of cognitive load,” Love says. “As this industry and the technology progress, the capability of complex power wheelchairs is astounding. This complexity is not for nothing — it gives the clinicians and ATPs a great deal of choice when it comes to programming.
“But there is an inverse relationship at work. The more simple the system must appear to the end user, the more programming is needed prior to trialing. Limiting profiles, seat functions, access to screens/buttons, etc., may be necessary to ensure success and decrease frustrations when someone is getting used to a wheelchair.”
Brown gives an example of an alternative driving control scenario.
“Let’s say a head array has forward, left and right, but to go backward, you need to hit a switch so the backpad switches from forward drive to reverse,” she says. “That is a one-step command to make that change, but it continues to get more complicated to move from driving to power seating to communication devices, etc., regarding how many multi-step commands it takes to accomplish that task. This should be evaluated as the electronics are chosen for the final chair.
“Of course, that decision involves what can and should be ‘integrated’ versus left as a separate toggle or switch to access functions, such as power seating as a direct select versus through the joystick. That is also dependent on to how many access points the patient has available to them. An increased number of steps or complexity of a system can cause frustration tolerance issues that can occur with brain injury.”
Brown agrees that simplification can be the best route for some of these clients.
“Sometimes less is more when it comes to simple versus more complex,” she says. “Just because we can combine accessing of features through the joystick, for example, doesn’t mean we always should.”
Compensating for Cognitive Deficits to Create the Best Solutions
The conundrum, of course, is that these clients typically need more complex seating & mobility systems. They typically need powered positioning to perform weight shifts and keep them more comfortable and functional in their wheelchairs. Loss of upper-extremity strength or control could require alternate driving and positioning options. But due to cognitive impairments, clients might find it difficult to remember how to operate those controls or how to maintain their equipment.
Members of the seating & mobility team can therefore find themselves stuck between an otherwise “ideal” solution and a client who can’t reliably operate it.
That’s one reason, Brown says, that she “always encourages family members or caregivers who know the patient the best to help us work through the decision-making process. They know the patient’s prior behaviors, as well as the new ones.”
Love points out that it’s important to try to facilitate a good outcome for the client from the beginning.
“Setting the client up for success and managing expectations is a critical step in the process,” she says. “Sometimes when driving skills are still needing refinement and the process is getting very frustrating and the client is giving up, I may limit the forward and reverse speeds and allow the client to move 360° using left/right and allow for seat function use. That way, they still have control over their environment and body position, can clear out a space to turn in, and get used to the drive controls. Once that is mastered, the forward and reverse can be worked on at a less frustrating time.”
Love agrees that family members and caregivers can be a very important part of the client’s support system.
“Supervision or assistance might be needed when clients have difficulty — getting stuck in tight places, navigating unfamiliar places, etc. Providing extra time for decision-making if possible is a best practice, especially if written materials can be provided to ensure carryover. Allowing a home trial of equipment for families that are unsure is also another critical aspect of helping this process.”
But as with most other factors of seating & mobility prescription and provision, Love says every client’s situation is different and needs to be approached and managed on a case-by-case basis.
“Family members or caregivers are often a critical step in the process,” Love says. “If the client is having a hard time making decisions and is comfortable deferring decisions to loved ones, identifying a primary caregiver can be a critical step — so that you don’t end up with 17 voices and opinions when it comes to tough decision-making time. Depending on the dynamics of the family, they may or may not be helpful.”
Fine-Tuning to Your Client’s Needs
Fortunately, power wheelchairs can also be fine-tuned to help compensate for cognitive impairments.
“The complex power chairs coming ‘out of the box’ may not be perfect for individuals with cognitive dysfunction,” Love says. “There are ways to slow down the speed and acceleration to increase safety. There are also options on certain chairs to reduce the power and torque to allow for the motors to cut out when hitting obstacles — so they don’t drag the coffee table across the room. Additionally, when dealing with alternative controls, one can limit movement in certain directions while the learning process is occurring.”
But Love cautions about reducing the power chair’s abilities too far.
“Any adjustments must still allow the chair to be responsive — otherwise frustration will occur,” she points out.
Tools can also help clients manage their powered positioning systems more efficiently.
“Regarding seat function control, there are a few options as well,” Love says. “Utilizing memory seating can be useful.” She refers to a Permobil system called the Independent Repositioning Mode (IRM).
“This allows the therapist to program the client’s ideal pressurerelief position, and the actuators move to achieve that position with only one joystick input. For example, if the therapist wants the client to be in 25° tilt, 85° legrest elevation and 120° recline: The client could activate their IRM setting on the joystick (M3), and the wheelchair would tilt the chair first, elevate the legs and recline the back. There is also the ability to program a starting position for these clients so the therapist could program their most comfortable driving position. When returning from their weight shift, no additional positioning is needed.”
To simplify those actions even more, Love suggests, “An Alternative Control Switchbox allows for up to eight individual buttons to be connected to the seating system, so now I could get a switch mounted to the headrest and connect it to that M3 mode. Every time they utilize that switch, they go into the pressure relief movement. I refer to this as the ‘easy button.’”
Slow & Steady Progress
Ultimately, working successfully with clients who have cognitive impairments is a process, one that starts with observing and noting difficulties that might not have been caught earlier, then building a seating & mobility system that is not only functional and clinically helpful, but also one that can be efficiently used by the client and caregivers or family members.
And as with so many processes, Love suggests that patience and planning can go a long way toward ultimate success.
“Don’t talk down to clients or assume that because they utilize a wheelchair they are unable to make decisions,” she says. “Provide written instructions whenever possible. Extra education may be needed, so plan on following up. And don’t assume that because you stated how this chair works once, the client and caregivers will remember.”
This article originally appeared in the April 2015 issue of Mobility Management.