Shared Decision Making about Your Emotional and Cognitive Health

Introduction

The current recommendation is for everyone with MS to have a brief cognitive screening and a brief screening for depression on a regular basis. Unfortunately, this may not happen as often as it should – or ever. However, these are important symptoms of MS that need careful attention. They have an impact on your self-esteem, relationships, communication, employment, and quality of life.

Some Tips for Sharing Decision Making in These Key Areas:

1. Give your MS care provider a heads-up about any challenges you are experiencing with your mood and/or your thinking and memory at home or at work.  
2. Be as specific as you can about your mood – describing what you are feeling and when, how it is affecting your daily routines (sleeping, working, caring for your home and family, eating).
   • • If you can’t find the words to describe the feelings, that’s OK.  
     • You can say things like “I feel sad or down,” “I’m just cranky and irritable all the time,” “I don’t want to do anything or go anywhere,” “I’m anxious or worried all the time,” or “I just don’t feel like me right now.”
3. Be as specific as you can about your difficulties with thinking or memory. Let the provider know if you are: 
   • • Forgetting conversations, appointments, tasks.
     • Having difficulty multi-tasking or completing multi-step tasks.
     • Having difficulty keeping up with conversations.
     • Having trouble completing work assignments on time.
     • Getting distracted easily while driving.
     • Getting lost in familiar places 
     • Losing track of book or TV plot lines 
4. Ask for a depression and/or a cognitive screening to be done during the appointment or request a referral to a mental health professional who can do those screenings. 
5. If either your mood or your cognitive issues are impacting other aspects of your treatment (e.g., taking your medications as prescribed, getting to rehabilitation appointments, or taking care of your overall health), let your MS care provider know. 
6. If you screen positive for depression or cognitive difficulties, and would like a referral for ongoing treatment, ask your MS care provider to assist you. If your MS care provider is unable to provide a referral, the National MS Society (1-800-344-4867) can assist you.
   1. • When looking for a mental health professional (psychiatrist, psychologist, social worker, counselor), it’s important to be clear about what your priorities are for the treatment. Making sure from the beginning that your goals align with their style of treatment will help the process be more successful. So, think about whether you are looking for help with depression and anxiety, stress management, sleep problems, relationship and communication issues, or something else. It may take time to find the mental health professional with whom you can engage comfortably and effectively in the shared-decision making process.  
      • Cognitive evaluations and cognitive remediation may be done by neuropsychologists, psychologists, speech/language pathologists, and occupational therapists. It’s important to be clear about your goals for treatment. If you have concerns about your work performance and ability to continue working, it’s important to get a full neuropsychological evaluation by a neuropsychologist. The test battery they provide is comprehensive, and the only type of cognitive evaluation that is recognized for applications for Social Security Disability applications.  
7. As with all other collaborative decisions you make with your healthcare providers, the input you provide about your cognitive concerns, priorities, and goals will help guide the work.

Summary

We hope these tips will help you participate more comfortably and effectively in the shared decision making process with mental health providers and cognition specialists. Combining their expertise with your personal goals, values, and priorities is the optimal way to make your treatment work for you.