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By Meghan McCarthy 

The U.S. Census Bureau reports that 59.3% of the United States population are white individuals. Yet, a recent analysis of preclinical trials related to Alzheimer’s’ disease and related dementias (ADRDs) found that 85.9% of the 59,455 research participants involved where white.

ADRDs disproportionally impact ethnic minorities, and researchers around the country are working to understand why.  

Historically, African Americans, Hispanic, and Asian Americans are substantially underrepresented in AD research populations. The Alzheimer’s Disease Sequencing Project (ADSP), which uses multi-ancestry study groups, aims to bridge this gap.  

“We know the problem and have to do the work,” said Li-San Wang, PhD, a leader of the Penn Alzheimer’s Disease Research Center and co-director of the Penn Neurodegeneration Genomics Center.

On June 14, the Penn Memory Center (PMC) held “A Celebration of Hope” to raise dollars for expanded dementia research and care and to honor PMC patients, families, and clinicians.

The celebratory event, held at the Pennsylvania Horticultural Society (PHS) Pop Up Garden, featured a cabaret performance by Eddie Bruce and the Tom Adams Trio with special guest Michael Pedicin and a live auction that included an exclusive golf outing, private dinners, a limousine experience, and more.

By Alison Lynn, Penn Memory Center Director of Social Work

Diane’s daughter holding a picture of her and her mother. Credit: McNair Evans for The New York Times

A Story of Dementia: The Mother Who Changed

Katie Engelhart (whose book, “The Inevitable: Dispatches on the Right to Die,” I also highly recommend) explores the complexities of selfhood, decision-making capacity, and caregiving in her heartbreaking story on the Norelius family.

Engelhart traces the story of Diane Norelius, whose diagnosis of dementia led to a years-long financial and legal conflict between her daughters and her new romantic partner. Diane’s personality changed, which led her to start a relationship with a man who her daughters allege was financially manipulating her and neglecting her care. Her partner, of course, accused her daughters of the same thing.

By Meghan McCarthy and Cait Kearney

In a study by the American Psychological Association, 76% of participants reported they experienced negative health impacts due to stress in the prior month, and 34% said their stress was “completely overwhelming” most days.   

Stress can harm memory, mood, and cognition, and cause a variety of other health problems. Greater mental well-being, on the other hand, is connected to better cognitive health and reduced dementia risk. 

Luckily, there are a number of ways you can manage your stress and boost your brain health and well-being.

AARP’s Global Council on Brain Health (GCBH) has identified six key points regarding stress management to help you promote mental wellness in your life:

• You can conquer your stress
• A stable daily schedule promotes calm
• Physical activity can ease stress
• Social ties boost positive feelings
• Stay tuned into your stress level
• Laughter keeps balance in your life

Check out this Mental Wellness Quick Sheet for more practical tips to increasing well-being and reducing stress.

By Cait Kearney

PMC Luncheon at the Sheraton University City Hotel

After a three-year hiatus, the Penn Memory Center (PMC) Research Participant Thank You Luncheon was held in May to recognize the dedication and efforts of PMC research participants and their study partners.  

“Without you all, we wouldn’t be here today,” PMC Co-Director Jason Karlawish, MD, told the audience in his opening remarks. “All of you should feel like this is a celebration of the work you did because being in research is work.” 

Over 200 people attended the event, held at the Sheraton Hotel in University City.  

“We left feeling hopeful, knowledgeable, and well taken care of in this difficult journey,” said Susan Henderson, research study partner. 

Dear PMC Care Partners,

Do you remember the day you and your loved one learned about a dementia diagnosis? Whether the diagnosis the doctor delivered was mild cognitive impairment, Alzheimer’s disease, Lewy body dementia, or another cognitive impairment, it’s always described as a scary moment for both the patient and the care partner.

As executive director of the Penn Memory Center (PMC), I have a background in social work that helped me develop, deliver and grow the robust support system we have been providing to families in our care since 2008. From counseling and coaching to classes for caregivers, support groups, memory cafes, Time Together, and the many other ways we support families living with dementia, our goal is to bridge the gaps in dementia care and help families cope with changes, navigate the complexities of managing these progressive illnesses, and tend to their social and emotional wellbeing.