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Projects | In Progress

Investigating Measures of Survival and Residence among persons with Dementia (I-MEASURED)

Research Areas

Principal Investigator

Headshot of Catherine Auriemma
MD, MSHP

Catherine Auriemma

PAIR Center Research Team

Headshot of Jason Karlawish
MD

Jason Karlawish

Headshot of Scott Halpern
MD, PhD

Scott Halpern

PhD, MPH

Tamar Klaiman

Headshot of Jasmine Silvestri
MPH

Jasmine Silvestri

Headshot of Paola Rosa
BA

Paola Rosa

Headshot of Carolyn Chow
MD

Carolyn Chow

Topics

Overview

Alzheimer’s Disease and Related Dementias (ADRD) affect upwards of 6 million Americans. This number is expected to rise to 13 million by 2050. Recently, treatments that may slow the progression of the physical and cognitive impairments associated with ADRD have been developed. However, the cornerstones of treatment remain supportive interventions designed to mitigate the impacts of progressive cognitive and functional decline. These interventions also aim to reduce acute care hospitalizations and long-term-care placement, and alleviate the physical, emotional, and social burdens for family caregivers.

To design treatments for persons living with dementia (PWD), we need to develop better ways of measuring their well-being. This includes finding methods of collecting data from patients whose abilities to complete questionnaires and report symptoms changes over time, making sure we measure aspects of health that are important to PWD and their caregivers, and identifying approaches that are statistically efficient even with limited sample sizes.

The I-MEASURED study seeks to identify and design novel patient- and family-centered outcomes for dementia trials. Our goal is to empower PWD, their family care partners, and dementia clinicians to contribute to the development of these outcomes. In this study, we are engaging these key stakeholders in a mixed methods study using qualitative interviewing and a discrete choice experiment to understand both stated and revealed preferences.

Results & Impact

Data collection for this study is complete. We conducted 74 semi-structured interviews among people living with cognitive impairment (PWCI), family caregivers of PWCI, and clinicians who care for PWCI. We also conducted a discrete choice experiment with 201 PWCI and family caregivers of PWCI.

We have presented preliminary findings at:

  • Alzheimer’s Association International Conference, 2023
  • Society for Medical Decision Making Annual Meeting, 2023
  • American Neurological Association Annual Meeting, 2023
  • Gerontological Society of America Annual Scientific Meeting, 2024
  • Penn Department of Medicine Research Day, 2025
  • Alzheimer’s Association International Conference, 2025

Based on feedback from study participants, our team applied for and received funding from the Penn Alzheimer’s Disease Research Center for a new project. Using the I-MEASURED discrete choice experiment instrument as a starting point, we will develop a conversation tool to help older adults with memory impairments talk about aging in place with their loved ones and clinicians. We have also applied for funding to develop a shared decision-making tool for Alzheimer’s treatment.

We shared a summary of results with participants via email. Download a copy below.

I-MEASURED Study LetterDownload PDF
  • Figure showing the relationship between themes of preferences to age in place and proactive and reactive decision-making.
    Figure 1. Relationship between themes of preferences to age in place and proactive and reactive decision-making. (Auriemma CL, et al. J Am Geriatr Soc. 2024. doi:10.1111/jgs.19140)
  • Figure for Theme 1: Patients and their families wish that new treatments could cure memory problems, but these hopes often feel unrealistic.
    Figure 2. During interviews, we asked: Imagine a new treatment was to come out for memory problems. What would you hope it might achieve? We identified three themes in participants’ responses and shared a summary of results with participants via email. (Chow C, et al. JAMA Netw Open. 2025. doi:10.1001/jamanetworkopen.2025.17452)
  • Figure for Theme 2: Some patients and their families would find it helpful if a new treatment could slow down or stop the worsening of memory problems.
    Figure 3. During interviews, we asked: Imagine a new treatment was to come out for memory problems. What would you hope it might achieve? We identified three themes in participants’ responses and shared a summary of results with participants via email. (Chow C, et al. JAMA Netw Open. 2025. doi:10.1001/jamanetworkopen.2025.17452)
  • Figure for Theme 3: But, some families worried about slowing down or stopping the worsening of their loved one’s memory problems. They felt this could extend their loved ones’ suffering or cause distress for family members.
    Figure 4. During interviews, we asked: Imagine a new treatment was to come out for memory problems. What would you hope it might achieve? We identified three themes in participants’ responses and shared a summary of results with participants via email. (Chow C, et al. JAMA Netw Open. 2025. doi:10.1001/jamanetworkopen.2025.17452)
  • Figure 1. Relationship between themes of preferences to age in place and proactive and reactive decision-making. (Auriemma CL, et al. J Am Geriatr Soc. 2024. doi:10.1111/jgs.19140)
  • Figure 2. During interviews, we asked: Imagine a new treatment was to come out for memory problems. What would you hope it might achieve? We identified three themes in participants’ responses and shared a summary of results with participants via email. (Chow C, et al. JAMA Netw Open. 2025. doi:10.1001/jamanetworkopen.2025.17452)
  • Figure 3. During interviews, we asked: Imagine a new treatment was to come out for memory problems. What would you hope it might achieve? We identified three themes in participants’ responses and shared a summary of results with participants via email. (Chow C, et al. JAMA Netw Open. 2025. doi:10.1001/jamanetworkopen.2025.17452)
  • Figure 4. During interviews, we asked: Imagine a new treatment was to come out for memory problems. What would you hope it might achieve? We identified three themes in participants’ responses and shared a summary of results with participants via email. (Chow C, et al. JAMA Netw Open. 2025. doi:10.1001/jamanetworkopen.2025.17452)

Partnering Health Systems

Penn Memory Center (PMC)

Sponsors

Alzheimer’s Association

Related Publications

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