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

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.

To date, 74 semi-structured interviews have been completed with people with dementia (PWD) or cognitive impairment, family caregivers of PWD, and clinicians who care for PWD.

Preliminary analyses have been presented at the following:

Alzheimer’s Association International Conference, 2023

Society for Medical Decision Making Annual Meeting, 2023

American Neurological Association Annual Meeting, 2023

Penn Memory Center (PMC)

Alzheimer’s Association