The Caregivers’ Experiences with and Perspectives on Communication with Persons with Dementia study examines how people with dementia and their caregivers communicate with one another in the late stages of the disease. We seek to systematically describe this communication and how it affects caregivers’ clinical and daily care decisions. Discovering how this communication unfolds can better prepare clinicians to respond to certain caregiving concerns and issues.
The current COVID-19 pandemic presents unique circumstances for persons living with dementia and their care partners. This project aims to characterize the practical, emotional, social, and behavioral effects of COVID-19 on care partners and persons with dementia; to compare the experiences of care partners when the person living with dementia resides in the home versus in a long-term care setting; and to document changes over time.
Research on this subject is important because it may expose vulnerabilities and flaws in existing systems for persons living with dementia and their care partners and offer insights into interventions that can improve or protect quality of life during times of non-emergency. Additionally, it may inform pandemic and emergency preparedness going forward.
Gender’s Impact on Cognition in Older Adults: The CoGenT3 Study
Here are some of the projects CoGenT3 Study students are working on:
- Advancing measurement of gender in aging and Alzheimer’s Disease research by evaluating data from one of the most prolifically used measures of gender today, the Bem Sex-Role Inventory (BSRI). Developed in 1974, the BSRI offers a unique opportunity to characterize how “gender” – as measured by the BSRI – has changed over time and to compare and contrast this construct in sociocultural groups defined by age, self-report sex, and race and ethnicity. The results of this study may help inform development of a measure of gender in older adults. Hannah Cao, BA, is student-lead on this project. Originally from Worcester, MA, Hannah is a second-year Master of Social Work student at the University of Pennsylvania’s School of Social Policy and Practice.
- Women are shown to have a higher prevalence of Alzheimer’s disease (AD) dementia than men despite recent studies that show the prevalence of AD biomarkers in the general population is relatively similar. The difference in prevalence is not fully explained by the greater longevity of women. Additionally, once diagnosed, women tend to suffer from a quicker progression of symptoms. The reasons for these differences are currently unknown. In this series of studies, we are examining how brain volume, a sexually dimorphic characteristic, might affect clinical manifestation of AD symptoms in men and women. Mehek Dedhia is an undergraduate student at Penn studying neuroscience. She is interested in researching sex differences in Alzheimer’s disease and plans to attend medical school in the future.
Students interested in learning about CoGenT3 research opportunities should send a cover letter and resume to firstname.lastname@example.org.
Impact of biomarker result disclosure on family and friends: REVEAL SCAN Study Partner Study
The discovery of Alzheimer’s disease (AD) biomarkers is transforming our understanding of AD to include a “preclinical” stage of AD in which individuals are cognitively and functionally unimpaired but have biomarkers that correlate with increased risk for developing AD dementia. At present, there is ongoing debate about the practical and ethical aspects of biomarker disclosure in the preclinical stage. Discussions typically focus on the effect on the cognitively unimpaired but at-risk individual. It is also essential, however, to understand how biomarker disclosure affects the at-risk individual’s family and friends. P3MB is gathering and analyzing data to see how biomarker disclosure affects participants and their study partners.
Emily A. Largent & Jason Karlawish, Preclinical Alzheimer’s Disease and the Dawn of the Pre-Caregiver, JAMA Neurology, doi:10.1001/jamaneurol.2019.0165 (2019).
Reactions to gene and biomarker results: The SOKRATES Studies
As Alzheimer’s disease (AD) secondary prevention trials require participants to undergo genetic or biomarker testing in order to enroll, researchers must address how to disclose the results of tests that foreshadow whether a healthy person may develop AD dementia as well as the implications of these disclosures. As interventions to prevent or delay symptoms move from research to clinical practice, so will these challenges surrounding disclosure.
Through research that includes the SOKRATES 1 (Study of Knowledge and Reactions to Amyloid TESting) and SOKRATES 2 (Study of Knowledge and Reactions to APOE TESting) studies, P3MB researchers are collecting data to understand the experiences of cognitively unimpaired individuals who learn the results of AD gene and biomarker tests. Topics explored include individuals’ emotional reactions to these results, including any psychological or emotional challenges, any changes in their relationships and sense of self, their health behaviors, and how they are thinking about and planning for the future.
To learn more about what we’re discovering:
Harkins K, Sankar P, Sperling R, et al. Development of a process to disclose amyloid imaging results to cognitively normal older adult research participants. Alz Res Ther. 2015;7:26.
Mozersky J, Sankar P, Harkins K, Hachey S, Karlawish J. Comprehension of an elevated amyloid positron emission tomography biomarker result by cognitively normal older adults. JAMA Neurol. 2018;75(1):44-50.
Harkins K. & Karlawish J. Disclosing amyloid status to a person without cognitive impairments: Anticipating a novel clinical practice. Practical Neurology, June 2018. http://practicalneurology.com/2018/06/disclosing-amyloid-status-to-a-person-without-cognitive-impairments/
Grill JD, Cox CG, Harkins K, Karlawish J. Reactions to learning a “not elevated” amyloid PET result in a preclinical Alzheimer’s disease trial. Alzheimers Res Ther. 2018 Dec 22;10(1):125. doi: 10.1186/s13195-018-0452-1.
Stigma of Alzheimer’s disease
The stigma of Alzheimer’s disease has notable impacts on patients, their families and society. It leads to lower quality of life of persons with dementia, can spillover to worsen health outcomes of caregivers and can discourage individuals from seeking appropriate care and participating in research. P3MB is gathering and analyzing data from varied sources to understand mechanisms of how stigma effects persons in varying stages of cognitive decline and how stigma associated with clinical stages of disease does or does not spill over to affect cognitively unimpaired people who learn they are at risk for Alzheimer’s disease through gene and biomarker testing.
To learn more about what we’re discovering:
Stites SD, Karlawish J, Harkins K, Rubright JD, Wolk D.: Awareness of Mild Cognitive Impairment and mild Alzheimer’s disease dementia diagnoses associated with lower self-ratings of quality of life in older adults. The Journal of Gerontology. Series B, Psychological Sciences and Social Sciences 72(6): 974-985, Oct 2017.
Stites SD, Johnson R, Harkins K, Sankar P, Xie D, Karlawish J.: Identifiable characteristics and potentially malleable beliefs predict stigmatizing attributions toward persons with Alzheimer’s disease dementia: Results of a survey of the U.S. general public. Health Communication 33(3): 264-273, Mar 2018. PMCID: PMC5898816
Stites SD, Rubright JD, Karlawish J.: What features of stigma do the public most commonly attribute to Alzheimer’s disease dementia? Results of a survey of the U.S. general public. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association 14(7): 925-932, Mar 2018.
Stites SD, Harkins K, Rubright J, Karlawish J: Relationships between cognitive complaints and quality of life in older adults with Mild Cognitive Impairment, mild Alzheimer’s disease dementia, and normal cognition. Alzheimer’s Disease & Associated Disorders Page: 276, 2018 Notes: doi: 10.1097/WAD.0000000000000262.
Stites SD, Rubright JD, Harkins K, Wolk D, Karlawish J.: Awareness of mild cognitive impairment and mild Alzheimer’s disease dementia diagnoses associated with decreased self-ratings of quality of life in older adults. Alzheimers Dementia 14(7): 599-600, 2018 Notes: doi:10.1016/j.jalz.2018.06.681
Stites SD.: Cognitively healthy individuals want to know their risk for Alzheimer’s disease: What should we do? Journal of Alzheimer’s Disease 62(2): 499-502, 2018.
Stites SD, Milne R, Karlawish J.: Advances in Alzheimer’s imaging are changing the experience of Alzheimer’s disease. Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring. doi: 10.1016/j.dadm.2018.02.006 10: 285-300, 2018.
Stites SD & Karlawish J.: Stigma of Alzheimer’s Disease Dementia: Considerations for Practice. Practical Neurology Jul 2018 Notes: http://practicalneurology.com/2018/06/stigma-of-alzheimers-disease-dementia/
Barriers to research participation: Study Partner Availability Limitations Study (PALS)
Study partners are essential to assuring the scientific validity and social value of preclinical AD research. The participant-study partner pairing is known as a “dyad.” Study partners report on participants’ cognitive status, which serves two important purposes. First, before enrollment, study partners assist investigators in establishing that participants are eligible to enroll. Second, post-enrollment, study partners provide information to evaluate the experimental intervention’s efficacy. Although it is conceivable to design AD trials that don’t require dyads, there would be significant limitations of such trials. To successfully engage broad segments of the American public in preclinical AD research, we must understand and address the disparate effects of the study partner requirement on trial participation and representativeness. P3MB is collecting data to understand barriers to the identification and engagement of study partners in research and to identify promising means of reducing these barriers.
Emily A. Largent, Jason Karlawish, Joshua D. Grill, Study Partners: Essential Collaborators in Discovering Treatments for Alzheimer’s Disease, Alzheimer’s Research and Therapy, doi: 10.1186/s13195-018-0425-4 (2018).
The inability to continue managing one’s finances is one of the earliest signs of cognitive decline in an aging brain. This intersection between brain health and wealth is what P3MB Director Jason Karlawish describes as Whealthcare. These changes in financial capacity may lead to errors, bad decisions, fraud, or abuse among older adults, who are often already experiencing a loss of wealth during retirement. To address this junction, Dr. Karlawish and his team are working with banking and financial industries to develop strategies to protect elder financial management and prevent abuse. Bank and financial partners are seen as instrumental partners in providing cognitive screening, financial monitoring, and education and empowerment to older adults. Whealthcare aims to bring together healthcare teams and financial institutions to make this partnership happen.
Mild cognitive impairment (MCI) is much more than a condition in which people have more memory or thinking problems than normal for their age. For some, MCI may mean lifestyle or hobby changes, while for others it may mean a heavier reliance on current routines. Either way, MCI is a personal experience that is much larger than the original diagnosis from a doctor. People can learn a lot from others just by asking the question “what’s a typical day?”
“Typical Day,” founded by Tigist Hailu, MPH, is a photography project that allows older adults living with MCI to document and communicate their lives after their diagnosis. Through photography and stories, Hailu hoped her work would add more humanity into how people think about dementia. Often challenging to portray through words, the people featured in this project show readers their world through photography of people, places, and objects that define their daily lives. These photos serve as a tool to facilitate conversations with researchers and community members as a way to raise awareness of cognitive impairment.
Patients, normal controls, and other research participants who have been well evaluated over time by the Penn Memory Center.
The brain is removed by experienced autopsy technicians through an opening created low on the back of the skull. All other tissue is then properly repositioned and carefully sewn in place, with the stitches hidden. There are no visible indications of the procedure, should open casket viewing be desired.
No. The next-of-kin of the registered brain donor simply contacts our autopsy telephone service, operating 24 hours a day, 7 days a week and holidays, immediately after the registered donor’s death. Our service pays your designated funeral provider for transport of the body to the University of Pennsylvania for the brain donation procedure, which requires approximately two hours to perform, and to then transport the body to your funeral facility. There is no charge to a family for any aspect of the brain donation process.
The brain is examined by neuropathologists at Penn’s Center for Neurodegenerative Disease Research (CNDR), and the donor’s family receives a report. Tissue is used in current research and banked for future study. Samples may also be shared with researchers worldwide who can add to and advance our knowledge.
Organ and tissue donation, for medical diagnosis and to advance research that can help provide a healthier future for generations to come, is compatible with nearly all world religions. If you have concerns, please discuss this issue with your spiritual advisor to learn how your religion interprets brain donation.