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Registration is open for the IOA’s May 5 Sylvan M. Cohen 2015 Annual Retreat: “Aging with Financial Security: Addressing the Challenges of Cognitive Aging and Impairment.” Poster submission is now open as well. Click here to submit your poster information. Deadline for poster submission is April 24.

A study has uncovered what causes people to experience stigmatizing reactions to persons with Alzheimer’s disease dementia.

Researchers –including Rebecca Johnson, M.A. Princeton University Department of Sociology, Jason Karlawish, MD, associate director of the Penn Memory Center, Pamela Sankar, PhD of the Department of Medical Ethics and Health Policy, and Kristin Harkins, research coordinator at the Penn Memory Center — presented these results at the American Public Health Association annual meeting in November 2014.

“This project on Alzheimer’s stigma was sparked by an observation,” says Johnson. “Although researchers, clinicians and the public often talk about how those with Alzheimer’s face stigma, there was a lack of clarity about what features of Alzheimer’s prompt stigmatizing reactions in others.”

The online experiment with 800 adults from the U.S. general population had participants read a story about a patient with symptoms that described mild stage dementia. Participants were randomized to one of nine unique stories that differed in two key features: the disease label (“Alzheimer’s” versus “traumatic brain injury” versus no label), and the prognosis (“symptoms will get better” versus “stay the same” versus “worsen”). Next, the participants answered questions about their attitudes towards the person in the story, such as what emotions they felt and whether they thought the patient’s friends would start to distance themselves from the patient.

All participants read a story about a man with mild stage dementia, but some read that his disabilities were caused by Alzheimer’s while others read that that they were caused by brain injury or they did not have a cause. And the prognosis varied as well. These variations in the label and the prognosis allowed the researchers to test whether the disease label or the prognosis drive stigmatizing reactions.

Learning that the dementia symptoms were caused by Alzheimer’s didn’t prompt more stigmatizing responses than from the other possible causes. In short, the disease label did not influence stigma. Instead, stigmatizing reactions were more likely from people whose story described that the patient’s symptoms would get worse.

The study suggests that one of the best ways to minimize stigmatizing reactions for Alzheimer’s patients is to emphasize the range of clinical outcomes and prognoses people may have. The researchers concluded that it is also important that public messaging around Alzheimer’s should reflect the broad range of levels of the disease rather than just the most severe cases. Most importantly, the results suggest the need to understand the potential for stigma in persons in the “pre-clinical” stage of the disease. This stage — which is still under study and not yet used in clinical practice — describes an asymptomatic person who has Alzheimer’s biomarker pathology. It is a stage defined by prognosis and if this study of stigma is correct, then people with the label may experience stigma.

To listen to a recording of the presentation at the APHA meeting, click here.

In a Wealth Matters column in The New York Times, stories from financial advisers illuminate the challenges for patients and their families. You can read the column here.

Watch the ‪Alzheimer’s‬ Research Summit live on Feb 9 and 10 at http://videocast.nih.gov/ and follow on Twitter @ADSummit15‬ for highlights.

On February, 23, 2015, the Penn Memory Center at the Perelman Center for Advanced Medicine will be moving down the hall to the new Penn Neuroscience Center.

Our address remains the same:

Penn Memory Center at the Penn Neuroscience Center
Perelman Center for Advanced Medicine
3400 Civic Center Boulevard, South Pavilion, 2nd Floor
Philadelphia, PA 19104

Join us on May 5, 11:30am – 5:00pm, for the Institute on Aging’s Sylvan M. Cohen 2015 Annual Retreat:  “Aging with Financial Security: Addressing the Challenges of Cognitive Aging and Impairment.” 

A rapidly aging U.S. population means older adults’ financial well-being and security is becoming an urgent public health concern.  The five million people living with Alzheimer’s disease dementia are vulnerable to financial abuse or exploitation, or bad financial decisions. In addition, age-related cognitive changes also put older adults at risk. These problems are especially significant as older adults may have limited time or capacity to recover financial losses. “Aging with Financial Security: Addressing the Challenges of Cognitive Aging and Impairment” will examine the nature and scope of the problem, its challenges, and possible solutions. Experts in adult protective service, academics, advocacy and government will present cutting edge research and innovative solutions to support the financial well-being of older adults.

For more information email Aging@mail.med.upenn.edu or call 215-898-7801.

The deadline to participate in the poster session is April 24, 2015.

Philly Voice recently published a feature about ARTZ Philadelphia’s program to connect dementia patients with art, and its partnership with the Penn Memory Center.  Felicia Greenfield, associate director for clinical and research operations at the Penn Memory Center, was interviewed for the article about funding issues in Alzheimer’s research and care.

To read the article, click here.

A New York Times article looks at the debate about whether people who develop dementia can use “voluntarily stopping eating and drinking” (VSED ) or other strategies to end their lives by including such instructions in an advance directive.

Dementia rates and numbers have begun a steep ascent, already afflicting an estimated 30 percent of those older than 85. Baby boomers are receiving a firsthand view of the disease’s devastation and burdens as they care for aging parents.

To read the article, click here.

Philadelphia Inquirer reporter Stacey Burling interviewed Penn Memory Center research participants and clinicians in her article about the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s (A4) Study, entitled “The risk of knowing: Alzheimer’s research volunteers.“

The A4 Study is a historic clinical trial to see if an experimental drug can protect healthy seniors whose brains harbor silent signs that they’re at risk.  Ms. Burling spoke with Myrna Roach and Donald Jackson about why they chose to enroll in the study. She also spoke with Jason Karlawish, MD, associate director of the PMC about his A4 sub study which measures how disclosure of study participants’ amyloid status impacts them.

You can read the article here.

Interested in enrolling in the A4 study? Click here for more information.

The Penn Memory Center has launched a new Brain Health Research Registry.  By enrolling in the Penn Memory Center’s Brain Health Research Registry you can play a vital role in research. The Registry serves as the research recruitment resource for investigators at the Penn Memory Center who are studying brain diseases such as Alzheimer’s disease, which affects over 5 million people in the US.

The Penn Memory Center Brain Health Research Registry is a confidential database that is made up of people like you who have volunteered to consider participation in research studies. We will contact you periodically with a list of research studies that you may consider joining. Participation is always optional and all information is kept confidential.

For more information, please contact Tigist Hailu, Coordinator for Diversity in Research, at tigist.hailu@uphs.upenn.edu or 215-573-6095. You can download a Brain Health Research Registry card here.