Study Partners: Who are the Research Partners of Persons with Alzheimer's Disease and Does it Matter?


Aim 1: Describe basic demographic characteristics (i.e., age, gender, race, education, family structure, relationship to PwAD) and caregiving duties of SPs of PwAD and how their demographic features correspond to those of the PwAD. Covariates: PwAD’s cognitive function as measured by SP report on the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) and PwAD’s cognitive testing. Aim 2: To examine patterns between being an SP of PwAD and the demographic and caregiving correlates of these associations. Covariates: PwAD’s cognitive function and functional impairment. Hypotheses: (H1): In the group of SPs for whom the ADAMS interview is the first time a proxy reported on the PwAD, less than half will be concurrently identified as “caregivers” in the corresponding HRS interview (H2): Five years from that ADAMS interview, most will be concurrently identified as “caregivers.”  Aim 3: To describe how SP reports of PwAD’s cognitive symptoms do or do not differ based on the SP’s demographic characteristics. Covariates: PwAD’s demographic characteristics and cognitive function. Hypothesis: (H1): In analyses matched for PwAD characteristics, younger SPs will rate cognitive symptoms worse on the Blessed Dementia Ratings Scale (BDRS) than those who are relatively older.


Alzheimer’s disease (AD) is the most common cause of dementia, affecting 5 million older adults in United States and causing cognitive and functional impairments that limit the ability to carry out activities of daily living.1 As a result, other individuals usually become involved in the care of persons with AD (PwAD). These individuals serve as “study partners” who report on cognitive function and other outcomes of PwAD in research studies, including clinical trials, and as “caregivers” assisting PwAD with IADLs and BADLs and informing on the functioning and wellbeing of PwAD during medical visits. They have powerful roles in the safety, health, and quality of life of PwAD and in the feasibility and integrity of AD trials. Many prior studies have examined the characteristics and outcomes of caregivers of PwAD but little is known about study partners. Who are they and how does who they are impact how reliably they report on the cognition of PwAD? It is crucial we learn the answers to these questions. 

In this proposed study, we focus on characterizing study partners (N=532) of community-dwelling PwAD who were age 70 or older at the time of initial interview in Aging, Demographics, and Memory Study (ADAMS), a subsample of the Health and Retirement Study (HRS) that is nationally representative of older adults 70 and older. The purpose is to characterize study partners in nationally representative samples [specific aim (SA) #1], examine how being a study partner corresponds to caregiving duties (SA#2), and evaluate how characteristics of study partners correspond to how they report on cognition of PwAD (SA#3). Descriptive statistics and 95% confidence intervals will be used to describe and compare the demographic characteristics of study partners. Bivariate and multivariable generalized linear models will be used to examine the cross-sectional and longitudinal associations between study partner characteristics and each their engagement in caregiving duties and how they report on the cognition of PwAD. 

This study advances what is known about SPs of PwAD by describing their characteristics in a population-based subsample and how, if all, their characteristics associate with patterns between being an SP and caregiver for PwAD and how they report on the cognitive function of PwAD. What’s discovered will inform design of AD clinical trials and also inform education materials for use in clinical care. The findings from this study will develop important pilot data to be used in submission of multi-site cohort study to NIH NIA that will build upon the existing HRS framework in order to study the experiences of both persons with “preclinical AD” (cognitively unimpaired persons with biomarker evidence of AD) and their study partners.

Funded By: 
P30 Pilots
Award Dates: 
August 1, 2019 - June 30, 2021