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John Witzman (left) was always by his wife Jacqueline’s side as she participated in a clinical trial at the Penn Memory Center. Jacqueline has Alzheimer’s disease. (Photo by Terrence Casey)

By Joyce Lee

In the world of clinical research, Alzheimer’s disease (AD) studies stand out due to their requirement of study partners: often a spouse, child, or close friend who provides support for the patient undergoing memory testing, MRI brain scans, and trial drug infusions.

But the importance of study partners also extends to the preclinical setting. As researchers start to study and identify individuals at high risk of developing Alzheimer’s disease with genes and biomarkers, study partners can help reduce participants’ anxiety and distress, report to researchers how participants are doing, and ensure findings of these studies have practical applications.

This is why Penn Memory Center Co-Director Jason Karlawish, MD, and University of California, Irvine Professor Joshua Grill, PhD, argue that study partners should be required in all preclinical Alzheimer’s disease studies. Their review article was published in Alzheimer’s Research and Therapy.

By Erin Alessandroni

Research suggests that cognitive complaints are associated with greater self-reported negative psychological feelings. This relationship could have implications on Alzheimer’s prevention trials and management of clinical populations in research.

PMC Co-director Jason Karlawish, MD; PMC Scholar Shana Stites, PsyD, MS, MA; PMC Senior Research Coordinator Kristin Harkins, MPH; and Manager of Psychometrics for the National Board of Medical Examiners Jonathan Rubright examined the relationship between self-reports of cognitive complaints and quality of life in people with varying degrees of cognitive impairment. Their findings were published in the Alzheimer’s Disease & Associated Disorders International Journal.

Dawn Mechanic-Hamilton, PhD, ABPP/CN

By Erin Alessandroni

Penn Memory Center Director of Cognitive Fitness Programs and Neuropsychological Services Dawn Mechanic-Hamilton, PhD, ABPP/CN, recently received an Institute on Aging (IOA) pilot grant for a project focused on apathy in patients with neurodegenerative disease. The grant for her project, titled “Development of a Goal-Directed Behavior App: Changing Apathy into Action in Neurodegenerative Disease,” began on July 1.

In dementia patients, apathy, or impairment of goal-directed behavior, is a symptom that has a significant negative impact on a patient’s ability to engage in everyday activities and can increase care partner burden. The project aims to develop a mobile app that will increase goal-directed behavior and decrease apathy by targeting behaviors like motivation, planning, and initiation, with an emphasis on individualized patient goals. The app will measure progress and outcomes for both the patient and care partner.

Adapted from an Alzheimer’s Association statement.

There are no universal, multidisciplinary guidelines for clinicians in Alzheimer’s (AD) care, often leading to symptoms going unrecognized or misattributed.

In response, the Alzheimer’s Association convened a group dedicated to creating best practices for clinicians. This group, which includes PMC Co-Director Jason Karlawish, MD, intends for these guidelines to improve timely and accurate diagnosis and disclosure of AD and other dementias, according to an Alzheimer’s Association press release.

Shana Stites, PsyD, MA, MS

Adapted from Alzheimer’s Association press release.

Many individuals worry that an Alzheimer’s disease diagnosis will lead to discrimination in the workplace and exclusion in the medical setting, according to Penn Memory Center research. These perceptions may prevent someone from going to the doctor to get the care they need, or from participating in clinical trials needed to advance Alzheimer’s disease research and care.

At PMC, clinical psychologist and researcher Dr. Shana Stites led a team to look at responses from a general public survey featuring descriptions about a man named “Mr. Andrews.” In one version of the survey that went to 317 randomly selected respondents, Mr. Andrews went to the doctor’s office complaining of memory problems and was diagnosed with Alzheimer’s disease. (Other versions had Mr. Andrews diagnosed traumatic brain injury, or not diagnosed with anything at all.)

Respondents were then asked questions about Mr. Andrews. More than half of respondents expected him to face workplace discrimination (55.3%) and to be excluded from medical decision-making (55.3%). Nearly half also thought his health insurance would be limited due to information about his diagnosis being placed in his medical record (46.6%) or based on the result of a test, such as a brain imaging scan (45.6%) or genetic test (44.7%).

Penn Memory Center patient Carl Duzen and his wife Susan Jewett were featured on 6abc news channel last week for copper art, which Mr. Duzen creates from taking apart old electronics. This was a hobby he adopted as a coping mechanism after his Alzheimer’s disease diagnosis at PMC a few years ago. What started out as just a hobby of taking apart discarded TVs turned into an art exhibit after Ms. Jewett, who is also an artist, began to frame the work Mr. Duzen created. 

Mr. Duzen and Ms. Jewett with PMC Co-Directors Dr. David Wolk and Dr. Jason Karlawish at his exhibition opening. (Terrence Casey / Penn Memory Center)

Mr. Duzen’s copper art is currently featured in PMC’s ‘Art of the Mind’ exhibition. The grand opening was in early May when a group of the couple’s close friends and members of the PMC community gathered to celebrate his work.

“Carl Duzen: Shaping Copper, Making Meaning” will be on display outside the Penn Memory Center clinic until late October. Guests can view the exhibition during regular business hours by entering the Perelman Center for Advanced Medicine through the main doors, taking the elevator to the second floor, and following the hallway to the South Pavilion.