More than half of people with multiple sclerosis (MS) will experience changes in cognition — basic brain functions like remembering, focusing and speaking — that can significantly impact their daily lives. And while physical symptoms of MS such as vision loss or difficulty walking continue to be an important focus of care, research suggests patients are concerned with keeping their minds healthy, too.,
However, based on findings from a new survey conducted by the Multiple Sclerosis Association of America (MSAA) and sponsored by Celgene, many people living with MS don’t have a clear understanding of factors like brain atrophy, or loss of brain tissue, that could cause cognitive changes., Read on for more surprising findings from the survey and for reasons the brain should be top of mind:
1. Cognitive decline can affect basic functions.
Brain atrophy can contribute to cognitive decline in people living with MS, which can make simple tasks difficult., Twenty-nine percent of survey respondents reported that MS-related cognitive issues made a significant impact on their quality of life.
2. Cognitive changes may not be reversible.
According to the survey, maintaining cognitive function was the second most common concern for respondents (27 percent), following the prevention of physical disability progression (45 percent). Because cognitive changes are unlikely to dramatically improve once they’ve begun, it’s important for those living with MS to share any concerns with their doctor.
3. Family members may not know about cognitive problems caused by MS.
Despite being concerned with maintaining cognitive function, a striking 63 percent of survey respondents reported that they have never talked to any member of their medical team about brain atrophy. And, family members may not realize that MS can cause cognitive problems, a misunderstanding that can result in anger and confusion.
4. Brain atrophy is linked to disease progression in MS.
Brain atrophy is associated with disease progression in MS., But the survey results suggest that many doctors don’t discuss brain atrophy — or how lifestyle modifications can help slow it — with their patients. And while almost 90 percent of respondents report having an MRI at least every three years, only 20 percent said their doctors talked about brain atrophy when discussing their MRI results.
5. Research shows brain atrophy is a predictor of long-term disability.
A growing body of evidence suggests that brain atrophy is a major driver of disease activity and a predictor of long-term disability., Even so, there may not be enough educational materials on the topic for those living with MS. In fact, only 20 percent of survey respondents were either moderately or very satisfied with the amount of information available to them on the potential prevention of brain atrophy.
These survey results help reveal the need for more awareness and discussion between healthcare providers and people living with MS so they can play an active role in preserving what matters to them — both the body and the mind. If you or a loved one is concerned about brain atrophy and the debilitating effects of declining cognitive function, you’re encouraged to talk with a doctor to learn more.
About the survey
This survey examined participant’s knowledge about the effects of multiple sclerosis on the brain, including brain atrophy, and how this issue is being discussed between patients and their healthcare professionals. Participants in this self-administered online survey included 1,337 people with multiple sclerosis, or someone responding on their behalf.
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