The Penn Program on Precision Medicine for the Brain

This project seeks to adapt existing supported decision-making tools for use in AD/ADRD and to assess whether it is feasible to implement supported decision making in a clinical setting. This intervention development research will further our understanding of interventions that could be broadly implemented in clinical settings to promote effective dyadic- and triadic- communication and improve wellbeing for patients and their care partners. Principal Investigator: Dr. Emily Largent Funding: National Institute on Aging: R01-AG-077111

Alzheimer’s disease (AD) recruitment registries are common tools for accelerating enrollment into AD prevention trials, but registry enrollees are predominantly female and white. This perpetuates the lack of diversity among AD prevention trials participants. The STEP-UP project seeks to understand how to effectively communicate the importance of participating in AD prevention studies to men and minorities. Effective communication can result in increased enrollment of men and minorities into AD recruitment registries and greater diversity among AD prevention study participants. To accomplish these objectives, researchers are:

• identifying the psychosocial determinants for joining different AD recruitment registries
• assessing how these determinants vary by race/ethnicity and gender
• developing evidence-based, culturally relevant recruitment messages based on these findings
• deploying the evidence-based messages into a real-word testing environment and measure their impact on enrollment of men and minorities

Collaboration: This multi-site project is led by co-PIs Dr. Jessica Langbaum (Banner Alzheimer’s Institute) and Dr. Amy Bleakley (University of Delaware). Dr. Jason Karlawish leads the UPenn efforts for this work, and Dr. Rachel Nosheny leads the efforts for the University of California San Francisco.

Funding: National Institute on Aging: R01-AG-063954

Publications:

Bleakley A, Maloney EK, Harkins K, Nelson MN, Akpek E, Langbaum JB. An Elicitation Study to Understand Black, Hispanic, and Male Older Adults’ Willingness to Participate in Alzheimer’s Disease-Focused Research Registries. J Alzheimers Dis. 2022;88(4):1499-1509. doi: 10.3233/JAD-220196. PMID: 35811525; PMCID: PMC9720734.

Langbaum JB, Maloney E, Hennessy M, Harkins K, Karlawish J, Nosheny RL, Bleakley A. How intention to join an Alzheimer’s participant recruitment registry differs by race, ethnicity, sex, and family history: Results from a national survey of US adults. Alzheimers Dement. 2023 Dec;19(12):5399-5406. doi: 10.1002/alz.13126. PMID: 37204220; PMCID: PMC10657330.

Bleakley A, Maloney EK, Hennessy M, Hull S, Harkins K, Largent E, Ashford M, Kwang W, Byrd DR, Nosheny R, Karlawish J, Langbaum JB. Theory-Based Message Design for Recruitment of Underrepresented Racial/Ethnic Groups Into Alzheimer’s-Focused Research Registries. Health Educ Behav. 2025 Jun;52(3):257-265. doi: 10.1177/10901981241296124. PMID: 39562850; PMCID: PMC12084129.

Hennessy M, Bleakley A, Maloney E, Langbaum JB. Enrollment in Alzheimer’s disease-focused research registries: altruistic and egocentric motivations. Psychol Health Med. 2025 Jul;30(6):1212-1227. doi: 10.1080/13548506.2024.2430891. Epub 2024 Nov 20. PMID: 39566553; PMCID: PMC12089423.

Samuel L, Kuijpers K, Maloney EK, Langbaum JB, Bleakley A. What is older adults’ understanding of Alzheimer’s disease research registries? Findings from 20 focus group studies. Alzheimers Dement (N Y). 2025 May 27;11(2):e70111. doi: 10.1002/trc2.70111. PMID: 40438463; PMCID: PMC12117188.

While much attention has been paid to ‘traditional’ biomarkers, research into digital biomarkers for neurodegenerative diseases is rapidly growing. Because the cognitive and motor changes preceding clinically-measurable manifestations of neurodegenerative diseases are subtle, there is interest in leveraging technologies that could easily be or already embedded in individuals’ daily lives – such as smartphones, smartwatches, and tablets – to collect behavioral and physiological data. If validated, digital biomarkers may facilitate early detection, prediction of health-related outcomes, and longitudinal monitoring, but they also come with ethical challenges.

Funding: National Institute on Aging: P30-AG-073105

Publications:

Claire Erickson & Emily A. Largent, Monitoring (on) Your Mind – Digital Biomarkers for Alzheimer’s Disease, in Digital Health Care Outside of Traditional Clinical Settings: Ethical, Legal and Regulatory Challenges and Opportunities, 92-104 (I.G. Cohen, C. Shachar, D. Kramer, J. Adler-Milstein eds., 2024).

Claire M. Erickson, Anna Wexler, & Emily A. Largent, Digital Biomarkers for Neurodegenerative Disease, JAMA Neurology doi:10.1001/jamaneurol.2024.3533 (2024). PMCID: PMC11729353.

Claire M. Erickson, Anna Wexler, & Emily A. Largent, Alzheimer’s in the Modern Age: Ethical Challenges in the Use of Digital Monitoring to Identify Cognitive Changes, 49 Informatics for Health and Social Care 1 (2024). PMCID: PMC11001527.

Read about our prior work on returning biomarker and genetic results:

Largent EA, Grill JD, O’Brien K, Wolk D, Harkins K, Karlawish J. Testing for Alzheimer Disease Biomarkers and Disclosing Results Across the Disease Continuum. Neurology. 2023 May 23;100(21):1010-1019. doi: 10.1212/WNL.0000000000206891. PMID: 36720642; PMCID: PMC10238153.

Largent EA, Bhardwaj T, Abera M, Stites SD, Harkins K, Lerner AJ, Bradbury AR, Karlawish J. Disclosing Genetic Risk of Alzheimer’s Disease to Cognitively Unimpaired Older Adults: Findings from the Study of Knowledge and Reactions to APOE Testing (SOKRATES II). J Alzheimers Dis. 2021;84(3):1015-1028. doi: 10.3233/JAD-210675. PMID: 34602479; PMCID: PMC8629880.

Largent EA, Harkins K, van Dyck CH, Hachey S, Sankar P, Karlawish J. Cognitively unimpaired adults’ reactions to disclosure of amyloid PET scan results. PLoS One. 2020 Feb 13;15(2):e0229137. doi: 10.1371/journal.pone.0229137. PMID: 32053667; PMCID: PMC7018056.

Largent EA, Terrasse M, Harkins K, Sisti DA, Sankar P, Karlawish J. Attitudes Toward Physician-Assisted Death From Individuals Who Learn They Have an Alzheimer Disease Biomarker. JAMA Neurol. 2019 Jul 1;76(7):864-866. doi: 10.1001/jamaneurol.2019.0797. PMID: 31034041; PMCID: PMC6583872.

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.

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.

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.

To date, studies returning AD biomarkers have focused on amyloid PET. These studies demonstrate that disclosing such information can be done effectively and safely. There is, however, a notable absence of research on disclosure of tau PET. While the process for returning results will be similar for the two biomarkers, there are important distinctions in what these biomarkers mean and how they should be communicated. This study used a modified Delphi method to develop consensus recommendations on communicating tau PET results to patients and research participants.

Collaboration: This study was led by Dr. Claire Erickson during her time as a post-doctoral researcher in P3MB, under the supervision of Dr. Jason Karlawish and Dr. Emily Largent.

As clinical trials for Alzheimer’s disease (AD) seek to enroll individuals at the earliest stages of the disease, it has become increasingly important to examine the impact of learning AD risk in cognitively normal individuals. Researchers can use amyloid brain imaging methods to identify participants who have Alzheimer’s brain pathology but no cognitive impairment and enroll them in AD clinical trials. This project generated data on how to appropriately enroll these individuals and safely disclose risk to them, while measuring performance bias on crucial outcome measures. The aims of the study are: 1) to determine whether disclosure of elevated brain amyloid will bias ADCS-Preclinical Alzheimer Cognitive Composite (ADCS-PACC) test results; 2) to determine whether disclosure of elevated brain amyloid will cause psychological distress; and 3) to explore how learning amyloid imaging disclosure will impact preventative health behaviors, advance planning for health (e.g. long-term care insurance decisions) and well-being (e.g. stigma, quality of life and relationships). A supplemental study explored how participants’ study partners understood and reacted to the biomarker result.

Collaboration: This multi-site project is led by co-PIs Dr. Jason Karlawish and Dr. Robert Green (Brigham & Women’s Hospital). Site PIs include Dr. Scott Roberts (University of Michigan) and Dr. Kathleen Welsh-Bohmer (Duke University).

Funding: National Institute on Aging: RF1-AG-047866

Publications:

Largent EA, Abera M, Harkins K, Feldman SJ, Uhlmann WR, Roberts JS, Karlawish J; REVEAL-SCAN Team. Family members’ perspectives on learning cognitively unimpaired older adults’ amyloid-β PET scan results. J Am Geriatr Soc. 2021 Nov;69(11):3203-3211. doi: 10.1111/jgs.17362. PMID: 34252201; PMCID: PMC8595546

The Alzheimer’s Disease Neuroimaging Initiative (ADNI) is a longitudinal, multi-center, observational study. The overall goal of ADNI is to validate biomarkers for Alzheimer’s disease (AD) clinical trials. The latest iteration of ADNI (ADNI-4) allows return of amyloid PET results to participants across the cognitive spectrum. The P3MB team led the development of a pragmatic disclosure process, and the incorporation of measures to characterize the clinician experience and impact on participants. Participant measures include perceived risk of dementia, purpose in life, and satisfaction.

Collaboration: ADNI is led by Dr. Michael Weiner (University of San Francisco). Dr. Karlawish leads the return of amyloid PET results team.

More information about ADNI is available at: https://adni.loni.usc.edu/

Funding: National Institute on Aging: U01-AG-024904

Publications:

Erickson CM, Karlawish J, Grill JD, Harkins K, Landau SM, Rivera-Mindt MG, Okonkwo O, Petersen RC, Aisen PS, Weiner MW, Largent EA. A Pragmatic, Investigator-Driven Process for Disclosure of Amyloid PET Scan Results to ADNI-4 Research Participants. J Prev Alzheimers Dis. 2024;11(2):294-302. doi: 10.14283/jpad.2024.33. PMID: 38374735; PMCID: PMC10883638.

Disclosing Alzheimer’s disease (AD) genetic and biomarker information is becoming increasingly common but often resource-intensive, requiring a clinician to return results. As results become relevant for clinical care and more people want to learn their results, scalable approaches to disclosure are needed. We conducted a decentralized, randomized, non-inferiority clinical trial to evaluate self-directed scalable digital methods for returning APOE and plasma pTau-217 results.

Erickson CM, Langlois CM, Wood EM, Mim R, Howe S, Ofidis D, Egleston BL, Harkins K, Largent EA, Roberts JS, Reiman EM, Denkinger M, Ashton NJ, Karlawish J, Bradbury AR, Langbaum JB. Evaluation of self-mediated alternatives for risk testing education and return of results (eSMARTER) study: A randomized study of methods for returning APOE and pTau-217 results. Alzheimers Dement (N Y). 2025 Nov 16;11(4):e70177. doi: 10.1002/trc2.70177. PMID: 41250770; PMCID: PMC12620075.

Collaboration: This multi-site project is led by Dr. Jessica Langbaum (Banner Alzheimer’s Institute). Dr. Jason Karlawish leads the UPenn efforts for this work.

Funding: National Institute on Aging: R01-AG-058468

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 return 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 return of results.

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’ reactions to these results, including any psychological or emotional challenges, any changes in their relationships and sense of self, their health behaviors, how they are thinking about and planning for the future, and how they perform on cognitive testing. Additionally, we have undertaken studies to understand how learning a biomarker result affects the at-risk individual’s family and friends, and to design scalable approaches for returning these results.

New diagnostic tests for Alzheimer’s disease are rapidly becoming available, but there is little information on how these tests will impact clinical practice. This project aims to understand clinician perspectives on use of blood-based, or plasma, tests for markers of Alzheimer’s disease and determine how these tests might impact patient care. We aim to identify factors that may influence use of these tests in clinical care and determine in which medical specialties (such as primary care, neurology, or geriatrics) they may be used. Additionally, we will assess how plasma Alzheimer’s disease biomarker results might impact aspects of patient care, such as disclosure of a diagnosis and medical management. Understanding how these tests might be used will inform efforts to translate these tests into clinical practice.

Principal Investigator: Dr. Kyra O’Brien

Funding: Penn Institute on Aging

Publications:

O’Brien K, Coykendall C, Kleid M, Harkins K, Chin N, Clapp JT, Karlawish J. Determinants of Plasma Alzheimer’s Disease Biomarker Use by Primary Care Providers and Dementia Specialists. J Gen Intern Med. 2024 Jul;39(9):1713-1720. doi: 10.1007/s11606-023-08583-9. PMID: 38169023; PMCID: PMC11255148.

Erickson CM, Largent EA, O’Brien KS. Paving the way for Alzheimer’s disease blood-based biomarkers in primary care. Alzheimers Dement. 2025 Jan;21(1):e14203. doi: 10.1002/alz.14203. PMID: 39740121; PMCID: PMC11772723.

O’Brien K, Coykendall C, Harkins K, Wang X, Perelman A, Zhang M, Karlawish J. Study of the utility and impact of a plasma p-tau181 Alzheimer’s biomarker (SUITABLE). Alzheimers Dement TRCI. doi: 10.1002/trc2.70207 (in press)

Jason Karlawish writes STAT’s Neurotransmissions column. His essays draw on stories from his clinical practice, the latest research, interviews with experts, and historical and cultural studies to examine the personal, local, and national solutions we need to tackle the vast problem of dementia.

Cognitive impairment, including dementia, often goes undetected. Early detection of cognitive impairment is important because it enables patients and their families to access appropriate care supports and research opportunities. The majority of patients seeking evaluation of cognitive symptoms begin their diagnostic journey in primary care, but it is particularly challenging to detect cognitive impairment in primary care due to a number of factors. This study is piloting a digital cognitive screening tool and a cognitive assessment pathway in Penn Medicine primary care practices. Findings from this study will help us develop better care pathways for early detection of cognitive impairment.

Principal Investigator: Dr. Kyra O’Brien

Funding: Lilly USA, LLC; Davos Alzheimer’s Collaborative

Publications:

O’Brien KS, Harkins K, Peifer M, Kleid M, Coykendall C, Shea J, Karlawish J, Burke RE. Designing an intervention to improve cognitive evaluations in primary care. Implement Sci Commun. 2025 Jan 16;6(1):9. doi:

O’Brien K, Burke R, Karlawish J. A Roadmap for Modifying Clinician Behavior to Improve the Detection of Cognitive Impairment. J Gen Intern Med. 2023 Feb;38(2):508-512. doi: 10.1007/s11606-022-07824-7. PMID: 36163531; PMCID: PMC9905516.

Patients and their caregivers face barriers when navigating the anti-amyloid therapy eligibility evaluation and when deciding whether to start treatment. Specialized care navigators, or brain health navigators, could support patients and their families through this process, helping them navigate logistical challenges and make treatment decisions. In this study, we are implementing a brain health navigator care model to evaluate the impact on patient  and caregiver satisfaction with the anti-amyloid therapy evaluation process and efficiency of healthcare delivery. We will also design and test a shared decision-making tool to help patients and caregivers understand the risks and benefits of treatment and consider what is most meaningful to them.

Principal Investigators: Kyra O’Brien, Justin Clapp, Catherine Auriemma

Funding: Lilly USA, LLC

Over the last century, the way we age has changed dramatically. Millions of us are living into our 70s, 80s, and even 90s. This longevity revolution presents us with a new challenge: How can we live well with an aging brain?

From personal stories of dementia to cutting-edge science, global innovations in aging care, and real strategies for navigating memory loss, The Age of Aging covers it all. Each episode tackles timely topics at the intersection of aging, identity, memory, and care.

The Age of Aging is recorded and produced at the Michael Naidoff Communications Hub at Penn Memory Center.

Anti-amyloid treatment for Alzheimer’s disease has recently entered clinical use. The ability of anti-amyloid drugs to slow the progression of dementia is unprecedented. However, it is unknown how patients and their caregivers value a delayed course of cognitive impairment and how they weigh its significance against the burdens posed by anti-amyloid treatment. In this study, we are interviewing and observing patients, caregivers, and clinicians as they make decisions about anti-amyloid treatment and interpret its effects. We will use our findings to advance the ethical usage of anti-amyloid drugs and inform how clinicians communicate about these drugs with patients and families.

Principal Investigator: Justin Clapp

Funding: Greenwall Foundation

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.

Media Coverage:

• ‘Typical Day’ featured in American Journal of Public Health
• Picture This: “What’s a Typical Day” project presentation – Penn Memory Center
• Penn Medicine cares for local community through CAREs grant – Penn Memory Center
• Living with mild cognitive impairment – Penn Memory Center

Publications:

Hailu T, Cannuscio CC, Dupuis R, Karlawish J. A Typical Day With Mild Cognitive Impairment. Am J Public Health. 2017 Jun;107(6):927-928. doi: 10.2105/AJPH.2017.303752. PMID: 28426296; PMCID: PMC5425906.

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 has gathered and analyzed 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. 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. http://practicalneurology.com/2018/06/stigma-of-alzheimers-disease-dementia/

Research shows that people have different experiences, opportunities, and challenges depending on their background and life circumstances. These factors can be important social and structural determinants of health (SSDoH) that may help explain heterogeneity in cognitive, functional, and interventional outcomes in Alzheimer’s disease and related dementias (ADRDs). The National Institute on Aging (NIA) has set as a priority collecting SSDoH data. The Penn Alzheimer’s Disease Research Center (ADRC) is working to routinely collect measures via a REDCap survey that asks questions about childhood, adulthood, and current living status. This information may help elucidate disease mechanisms and modifiers as well as aid discovery of disease modifying treatments that are effective across socioculturally diverse populations.

Establishing a Framework for Gathering Structural and Social Determinants of Health in Alzheimer’s Disease Research Centers (The Gerontologist)

From 5 to 95: The Impact of Life Experiences on Brain Health (Penn Memory Center)

The COVID-19 pandemic presents unique circumstances for persons living with dementia and their care partners.  This project sought to characterize the practical, emotional, social, and behavioral effects of COVID-19 on care partners and persons living 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. Our team identified 3 trajectories of caregiving relationships in the pandemic: (1) continuity in caregiving between the pre-pandemic and pandemic period; (2) disruption in caregiving characterized by isolation with a PLWD in the community; and (3) disruption in caregiving characterized by isolation from a PLWD in a LTC facility. Caregivers on the two “disrupted” trajectories reported negative consequences for their wellbeing, the PLWD’s wellbeing, and their dyadic relationship.

Principal Investigator: Dr. Emily Largent

Funding:

Thomas G. Roberts Jr, MD and Susan M. DaSilva, DNP Giving Fund

NIA IMPACT Collaboratory (U54-AG-063546)

Publications:

Largent EA, Peterson A, Harkins K, Coykendall C, Kleid M, Abera M, Stites SD, Karlawish J, Clapp JT. “A Raw Blessing” – Caregivers’ Experiences Providing Care to Persons Living with Dementia in the COVID-19 Pandemic. J Law Med Ethics. 2023;51(3):626-640. doi: 10.1017/jme.2023.99. PMID: 38088630; PMCID: PMC10827343.

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. We found that, despite these benefits, the study partner requirement is also a barrier to participation. We identified at least two ways in which the requirement can limit participation. First, some prospective participants are unwilling to ask anyone to fill the study partner role; second, even if prospective participants are willing to ask someone to be their study partner, many anticipate that individual will decline. We found that prospective participants were willing to ask one or two people to be their study partner, on average. Thus, a prospective participant confronted with one or two ‘no’s might quickly exhaust their pool of potential study partners, rendering them unable to participate.

Principal Investigator: Dr. Emily Largent

Funding:

National Institute on Aging: K01-AG-064123

Publications:

Largent EA, Grill JD, Karlawish J, Bleakley A. Characterizing the Research Participant Recruitment Funnel for Alzheimer’s Secondary Prevention Trials: Results from A National Survey of U.S. Adults. Alzheimers Dement Behav Socioecon Aging. 2025 Sep;1(3):10.1002/bsa3.70035. doi: 10.1002/bsa3.70035. PMID: 40937435; PMCID: PMC12422305.

Largent EA, Bhardwaj T, Clapp JT, Sykes OS, Harkins K, Grill JD. You’ve Got a Friend in Me: How Cognitively Unimpaired Older Adults Select a Study Partner to Participate with Them in Alzheimer’s Disease Research. J Alzheimers Dis. 2022;90(3):1021-1033. doi: 10.3233/JAD-220061. PMID: 35311710; PMCID: PMC9482665.

Largent EA, Karlawish J, Grill JD. Study partners: essential collaborators in discovering treatments for Alzheimer’s disease. Alzheimers Res Ther. 2018 Sep 27;10(1):101. doi: 10.1186/s13195-018-0425-4. PMID: 30261910; PMCID: PMC6161465.

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.

Principal Investigators: Dr. Jason Karlawish & Dr. Andrew Peterson

Funding: National Institute on Aging: R21-AG-069805

Publications:

Karlawish J, Peterson A, Kleid M, Harkins K, Largent EA, Stites SD, Coykendall C, Clapp JT. Caregiver Accounts of Lucid Episodes in Persons With Advanced Dementia. Gerontologist. 2024 Jun 1;64(6):gnad170. doi: 10.1093/geront/gnad170. PMID: 38134428; PMCID: PMC11102005.

Peterson A, Clapp J, Harkins K, Kleid M, Largent EA, Stites SD, Karlawish J. Is there a difference between terminal lucidity and paradoxical lucidity? Alzheimers Dement. 2022 Mar;18(3):540-541. doi: 10.1002/alz.12579. PMID: 35102707; PMCID: PMC10911068.

Peterson A, Clapp J, Largent EA, Harkins K, Stites SD, Karlawish J. What is paradoxical lucidity? The answer begins with its definition. Alzheimers Dement. 2022 Mar;18(3):513-521. doi: 10.1002/alz.12424. PMID: 34338400; PMCID: PMC8807788.

Ney DB, Peterson A, Karlawish J. The ethical implications of paradoxical lucidity in persons with dementia. J Am Geriatr Soc. 2021 Dec;69(12):3617-3622. doi: 10.1111/jgs.17484. PMID: 34628640; PMCID: PMC9924090.

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 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.

Karlawish J. Desktop Medicine and the Practice of Wealth Care. JAMA Intern Med. 2021 Feb 1;181(2):227-228. doi: 10.1001/jamainternmed.2020.6441. PMID: 33252637.