It Takes a Village: When Cognition Shifts Roles
Approximately 65% of individuals living with multiple sclerosis (MS) will experience cognitive change. This change can occur anytime in the disease. Approximately one-third of individuals experience cognitive difficulties even before they are officially diagnosed. The most common cognitive difficulty is slowed processing speed. This means that the brain takes longer to process, or sort, incoming information. This may also mean it takes longer to retrieve and express memories, thoughts, or words. Other thinking skills that can be impacted include: attention and concentration, the ability to quickly think of words, learning new information, or planning and organizing. Changes in cognition not only impacts the person living with MS, but can also impact family members or support partners. Below we will highlight the domains most commonly impacted by MS, how they can impact relationships, and a few tips for improvement.
Processing Speed is the speed at which you can take in and use/respond to information. In real life this may result in: being slow to make decisions or respond in conversations, taking longer to complete most tasks, or taking longer to get ready and leave the house. Support partners may need to slow down and give your family member more time to think about your questions/comments. Given them extra time to respond. A person with MS may need to ask their support partner to slow down, or let the person know you are thinking and need more time.
Attention and Concentration include being able to identify incoming information (basic attention), maintaining focus on something for a long period of time – such as a conversation or television show (concentration), and being able to multi-task (complex attention or divided attention). Attention difficulties may impact relationships because individuals with MS may appear to make careless mistakes, are easily distracted by their own thoughts or the environment, and may not always reliably follow through on plans or instructions. It may be helpful to reduce distractions during important conversations. Turn off the TV, put away the phone, or talk when the kids or pets are out of the room. The individual with MS may benefit from repeating back what they are hearing, asking questions, or taking notes.
Language is the ability to take in and understand verbal communication or to express one’s thoughts and emotions verbally. Word finding problems is the most common difficulty experienced by people with MS. Nearly 40 percent of individuals with MS demonstrate markedly reduced word-finding skills making it difficult to carry on a conversation. Two types of useful cues to improve word finding skills are phonemic cues (generating the first letter/sound of the missing word.) By hearing the initial sound of the word, it can help trigger memory. Secondly semantic cues (thinking of the category the word belongs within. i.e., foods, places, things in the kitchen, etc.) Describing or giving a background for the intended word also serves as a mechanism to trigger recall. Both techniques can be useful for the person with MS as well as their communication partner in improving word finding.
Memory involves learning, storing, recalling, and recognizing information. Individuals with MS often have difficulty learning new information. It may take them longer to learn the same amount of information as a person without MS. Even though a person is listening, they may not fully remember all parts of a conversation. Support partners may want to repeat important information or write down information that needs to be remembered. Persons with MS can use strategies such as spaced rehearsal, visual imagery, or testing to increase learning.
Executive Functioning is the ability to manage yourself and your resources to execute or perform a task. It involves things like time management, the ability to plan and prioritize, to initiate, recognize when you’ve gone off task (self-monitor), inhibit impulses, and use emotional control. Individuals with executive difficulty can appear disorganized, have trouble starting or completing a task, or they may have difficulty thinking creatively to solve a complex problem. They may also have difficulty switching tasks, and may tend to get “stuck” on problems or events that are emotionally distressing. External structure is very helpful for individuals with executive functioning difficulties. You may want to ask support partners to cue you to start, stop, or switch a task. Use a timer or tool such as a “timed timer” (timetimer.com) to get a better handle on time management.
Knowledge of the common cognitive difficulties can help persons living with MS and their support partners create a plan and approach for addressing common pitfalls. In the coming webinar, we will discuss each of these areas in more detail and provide a guide for overcoming these barriers as a team.