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An Alzheimer's Disease Research Center

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Dementia and gender roles: How to use stereotypes positively and start a conversation

By Meghan McCarthy 

Adobe Stock

Life is a cycle of ever evolving roles. These roles can be that of a child, student, teacher, spouse, parent, or friend. Regardless, norms, expectations, and stereotypes help to define them. For patients with Alzheimer’s disease or related dementias (ADRDs), their diagnosis marks a shift in roles where individuals become patients and their spouses become caregivers.    

Gender roles are defined as the behaviors or actions that society associates with one sex. They are dynamic, meaning they shift as culture evolves. Common tasks associated with gender roles are caregiving, cooking, cleaning, yardwork, and managing finances.  

Due to cognitive and functional impairments associated with dementia, a person may have more difficulty completing a task that they used to do with ease.  A key aspect to this involves shifts in gender roles between spouses and loved ones.  

Women, for example, who have raised children may struggle with needing to be cared for by others. Men who have made careers as builders and electricians may have difficulty asking for help with home maintenance.  

These are examples of how gender roles, and stereotypes or expectations associated with them, can compound problems associated with AD dementia. But, they can also be used positively to better understand the experience of a loved one, patient, or caregiver.  

To fully support a loved one or patient after diagnosis, acknowledging a change in gender roles is key.  

It starts with a conversation.  

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PMC researchers advancing equity for Black and African Americans in the study of Alzheimer’s

Discrimination, mistrust of medical professionals, and other barriers have caused Black and African Americans to be underrepresented among Alzheimer’s disease and related dementias (ADRD) researchers and research participants.

Increasing the representation of Black and African Americans in ADRD research is essential to developing treatments and providing quality care.

Learn more about three featured researchers at PMC who are breaking boundaries and working to advance equity in ADRD research.

Estevana Isaac

Estevana Isaac, MD
Role at PMC: Clinical fellow
Research interest: Disparities in health outcomes for patients with diverse cultural backgrounds

“As a clinical doctor, in addition to providing medical and social support to meet daily needs, I will continue to educate the public, patients, and caregivers to ensure safer environments. As a health services researcher, I intend to focus on solutions to better coordinate care and decrease costs for vulnerable patient populations as such. As a Black woman, I expect that my presence in these arenas continues to decrease biases and open more doors for diverse persons and perspectives, ultimately changing the face of healthcare.”

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PMC Clark Scholar Earns National Award

PMC Clark Scholar Brianna Morgan, MSN, CRNP, ACHPN®, was among 30 clinicians to be named a 2022 Hospice and Palliative Nurses Foundation (HPNF) Emerging Leader.

The HPNF Emerging Leader award celebrates hospice and palliative care nurses who have exhibited leadership and made unique contributions early in their careers.

“I am honored to be among a group of such phenomenal clinicians, educators, and scholars,” said Morgan.

Morgan worked as a geriatric and palliative care nurse practitioner prior to attending Penn. Now, she is a third-year doctorate student in the Penn School of Nursing.

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Students Reflect on our Aging Summer Research Internship

This past summer, Penn’s Alzheimer’s Disease Research Center (ADRC) held its inaugural session of the Aging Research Summer Internship.

Interns experienced hands-on research in laboratories across the ADRC and day-to-day activities and projects in various areas of the Penn Memory Center, such as communications, social work, clinical care, and neuropsychological testing.

“[The Aging Summer Research Internship] has been so enriching. It will help me towards my goal of becoming a psychiatrist,” said student intern Lorette Thomas.

Interns were paired with a mentor — a faculty member who provided support and guidance throughout the program — and assisted the mentor with their research.

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Aduhelm for Alzheimer’s disease: too risky to say yes; too desperate to say no. Medicare has a plan to help patients choose wisely.

By Daniel Gibbs, MD, retired neurologist and author, and Jason Karlawish, MD, co-director of the Penn Memory Center, geriatrician, and author

Both of us are physicians dedicated to the care of persons living with Alzheimer’s disease. We’ve heard thousands of moving stories from persons struggling with a fading capacity to exercise their free will and their friends and family members devoting time, effort, and resources to care for them. We feel their desperation.  

For one of us, this feeling isn’t simply professional. It’s intensely personal. Nine years ago, Dan retired from practicing neurology because of mild cognitive impairment (MCI) caused by Alzheimer’s disease.   

We wish we could have celebrated in June, when the Food and Drug Administration (FDA) approved Biogen’s drug aducanumab, marketed as Aduhelm, for the treatment of Alzheimer’s disease. We wish we were now condemning the Centers for Medicare and Medicaid Services (CMS) for its recent proposal to limit coverage of the drug to patients enrolled in a clinical trial of Aduhelm, known as “coverage with evidence development.” Instead, we weren’t celebrating in June, and now we thank Medicare for its courageous and reasonable proposal.  

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PMC Community Discussion on Aduhelm Coverage Proposal

by Cait Kearney

Penn Memory Center (PMC) Co-Director Jason Karlawish, MD, and Medicare expert and Penn faculty member Allison Hoffman, JD, led a community discussion regarding the Centers for Medicare and Medicaid Services (CMS) proposal for the coverage of Aduhelm (aducanumab).

Aduhelm was granted approval by the Food and Drug Administration (FDA) via its accelerated approval pathway in June 2021 — a decision that sparked notable debate and controversy. Following the approval, CMS became responsible for determining how the drug would be covered by Medicare, if at all.

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Register for our Spring programs

For the Spring of 2022, the Penn Memory Center is offering a wide range of programs for patients, caregivers, and families. All programs are free, virtual, and require registration. Tap on the title of the program to register and for more information.

These programs are free to patients/families seen at the Penn Memory Center and made possible from the philanthropic Caring Difference fund. Please consider making a donation so that we are able to continue offering support programs such as this.

If you are not affiliated with the Penn Memory Center, you are welcome to join this class/program if you make a donation of any amount to the Caring Difference fund.

Tap here to donate. 

PMC Community Discussion on CMS Aduhelm Proposal

Insights on FDA's controversial approval of Alzheimer's drug | Hub

On January 11, the Centers for Medicare and Medicaid Services (CMS) released a plan for Medicare coverage of Aduhelm (aducanumab). Aduhelm was FDA-approved in June 2021 for the treatment of Alzheimer’s disease (AD). The CMS plan is a program called Coverage with Evidence Development (CED). This evidence will be developed using a randomized controlled trial.

The CMS proposal is open to public comment for 30 days. The public can submit comments on the proposal on the CMS website.

Please join us for a virtual community discussion about this proposal at 4 p.m. Wednesday, January 19. Penn Memory Center (PMC) Co-Director Jason Karlawish, MD, and UPenn Medicare expert Allison K. Hoffman, JD, will review the proposal and its potential impact on PMC, our research participants, and our patients.

Please submit questions anytime before the event via this form.

Register for Community Discussion

If you have limited internet access, please email Terrence Casey at terrence.casey@pennmedicine.upenn.edu for more information on attending the event via telephone. This event will be recorded and uploaded to the PMC YouTube channel. 

How can Alzheimer’s disease test results be disclosed ethically?

In a recent article, Emily Largent, PhD, JD, RN, member of the Penn Program on Precision Medicine for the Brain (P3MB), argues that Alzheimer’s disease testing and results disclosure should be brought into the 21st Century Cures Act (Cures Act). Here are some key takeaways from Dr. Largent’s article:

  • Tests that show either the risk of developing Alzheimer’s disease (AD) or the presence of AD pathology are becoming more frequent and are predicted to become a regular aspect of health care in the near future.
  • The Cures Act requires patients to be able to receive these test results immediately and electronically, without certainty that a clinician will be there to explain the result or that the patient received educational materials about the nuances and uncertainties of AD testing.
  • Patients and families can understand AD gene and biomarker test results with the appropriate education.
    • Reports of test results should use plain and easy to comprehend language, not an abundance of medical jargon.
    • Educational materials should be evidence-based and be made widely available.
    • There should be increased access to expert postdisclosure education and counseling.

Dr. Largent’s full article is in JAMA Neurology. There is a paywall.

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