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April 2020

Alzheimer’s Disease & Behavioral Changes

One of the biggest issues in Alzheimer’s disease is the way it changes our behavior, for patients and their families and for doctors. At the Brain Health Registry, we are making efforts to understand these behavioral changes from a scientific viewpoint. From this understanding, doctors and researchers can diagnose Alzheimer’s disease more easily and make better recommendations for patients and their caregivers for how to manage symptoms.


Brain Health Registry Newsletter – April 2020, UCSF Brain Health Registry

When we think of Alzheimer’s disease, we often think of symptoms that affect memory and thinking, such as a decline in short term memory, attention, language skills, planning, and organizing.  However, a recent study by researchers at Johns Hopkins showed that in at least 30% of people with Alzheimer’s, the first symptoms are not cognitive, but rather behavioral or neuropsychiatric.

These neuropsychiatric symptoms can include changes in motivation and the ability to experience pleasure, or difficulty regulating worry, emotions and behavior, such as decreased frustration tolerance or irritability. It also includes changes in social behavior, such as losing one’s “filter”, or a loss of social graces, tact, sympathy or empathy, or unusual thoughts and perceptions, like suspicious or paranoid thinking, seeing things that aren’t there, or even hearing voices. In fact, the very first patient described by Dr. Alois Alzheimer over 100 years ago came to hospital with difficulty regulating her emotions and had suspicious thinking, which were then followed by a decline in memory and thinking.


Brain Health Registry Newsletter – April 2020, UCSF Brain Health Registry

Screening for new neuropsychiatric symptoms in older adults might help identify people at risk for dementia. This cluster of symptoms with onset late in life is a syndrome named Mild Behavioral Impairment (MBI), and one of the BHR collaborators, Dr. Zahinoor Ismail at the University of Calgary, in conjunction with scientists at the Alzheimer’s Association, have developed a rating scale to measure it. The Mild Behavioral Impairment checklist (MBI-C), is usually completed by a Study Partner, or close friend or family member of an older adult, since the Study Partner may see these behavioral changes over time in a different way or better than the person themselves. In the past, people who develop these symptoms might have been diagnosed with a psychiatric disorder, such as amnxiety disorder, major depressive disorder or schizophrenia. But now, we see these as a potential avenue to detect dementia risk earlier.

The MBI-C is now available for Study Partners of BHR participants! If you don’t yet have a Study Partner, we encourage you to invite someone today! If you are a BHR Study Partner and you’ve yet to complete this new questionnaire, please return to the Brain Health Registry to complete the MBI-C. We encourage all Study Partners to complete the MBI-C since it’s helpful to gather information on all types of people, including those who are healthy and not showing signs of behavioral or neuropsychiatric symptoms.  

Invite your Study Partner today by returning to the Brain Health Registry to complete study tasks!

By completing the MBI-C in Brain Health Registry, a Study Partner can help us better understand how behavioral and neuropsychiatric changes relate to memory, thinking, and the development of dementia – and we THANK YOU for this! Together we are increasing our knowledge about this disease.