This week Dawn Russo, Senior Program Manager of the National Multiple Sclerosis Society, will focus on cognitive changes in MS. Like depression, cognitive changes may be invisible to family and friends. But for the person experiencing them, the impact can be stressful and far-reaching.

Understanding the cognitive impact

Approximately 50% of people with MS will experience some cognitive impairment because of the MS. Impairments can include memory problems, difficulty with attention and concentration, processing information slower, and/or issues with problem solving, and organizing. For most, these issues will be mild to moderate. However, for a small percentage cognitive impairments can become severe and impact daily living.

Individuals can have many reactions to cognitive changes: embarrassment, frustration, depression, and/or anger. They may choose to ignore or minimize them.

Keeping control, but asking for help

I am currently working with Joe, a 55 year old man with MS, who wanted to apply for funding to have a stair lift installed in his house. Always independent, it was hard for Joe to ask for help. Despite offers of help from his friends, Joe insisted he could manage the application on his own.

Several weeks later, Joe had not completed the application and had lost one of the documents. It was difficult for Joe to admit he was struggling with the paperwork he could once do without help. Before offering help, I made sure Joe knew he would still be the decision-maker and have control over this process. Once we agreed how to work together, we were able to complete the application and approve his request without further delay.

Being aware of cognitive changes

Some possible signs of cognitive changes include: poor follow through of agreed upon action items; forgetting details of conversations; missing pre-scheduled appointments; etc. The impact can be far reaching, ranging from an inability to balance a checkbook to remembering to take medications to missing a deadline at work.

If unaddressed, cognitive impairments could lead to home safety issues, jeopardize a person’s employability and/or ability to live independently. Some people with MS fear they will be fired if co-workers learn about their cognitive changes, and they leave work prematurely. In other cases, family members may question the person’s ability to manage on their own or want to take away responsibilities.

A role for family and friends

Like other invisible symptoms, it may be easiest to deal with the issue once it’s out in the open. Engaging family and friends and educating them about MS may be the biggest strategy a person can implement.

Trying to support a person without knowing what kind of help they truly need is an uphill battle. In working with Joe, I didn’t know if he was facing challenges with reading the application, filling it out online, coordinating bids from contractors, or paying the balance.

In further conversations,, I learned he was overwhelmed by the process and struggling with organizing the supporting documents that were required to apply for financial assistance. He needed assistance breaking down the application in simpler steps and a plan for addressing each step. Once we created that plan, Joe felt less stress and successfully completed the application.

There are strategies and treatments options that can be explored to help manage these symptoms. Addressing cognitive issues may include rehab services, assistive technology, organizational strategies, and medication. The National MS Society has further information on cognitive resources on our website and in print.

I hope you will join us again next week when we look at the impact of invisible symptoms on caregivers.