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Predictors of Who Serves As an Alzheimer's Disease Research Participant's Study Partner and the Impact of Their Relationship on Study Partners' Reports on Participants

Overview
Journal Res Aging
Specialty Geriatrics
Date 2022 Mar 24
PMID 35324354
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Abstract

Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) research typically requires participants to enroll with a "study partner" (SP). Little is known about what predicts who steps into the SP role or whether the SP's relationship to the participant affects their reports of disease severity. Health and Retirement Study data (HRS), collected prior to the Aging, Demographics and Memory Study (ADAMS), was used to identify sociocultural factors that predict who serves as a SP in ADAMS. SP-reported outcomes were compared between three types of participant-SP relationships: spousal, adult child, and other. Spouses (35%) and adult children (39%) were similarly likely to serve as SPs. Factors predicting who served differed. In multivariable analyses, adult children rated participants less impaired than spouses on measures of memory, judgment, and organizational abilities ( < .05). The participant-SP relationship has independent effects on the SP's reports of the severity of cognitive impairments.

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References
1.
Morris J, HEYMAN A, Mohs R, Hughes J, van Belle G, Fillenbaum G . The Consortium to Establish a Registry for Alzheimer's Disease (CERAD). Part I. Clinical and neuropsychological assessment of Alzheimer's disease. Neurology. 1989; 39(9):1159-65. DOI: 10.1212/wnl.39.9.1159. View

2.
Ayalon L . The IQCODE versus a single-item informant measure to discriminate between cognitively intact individuals and individuals with dementia or cognitive impairment. J Geriatr Psychiatry Neurol. 2011; 24(3):168-73. DOI: 10.1177/0891988711418506. View

3.
Manly J, Gilmore-Bykovskyi A, Deters K . Inclusion of Underrepresented Groups in Preclinical Alzheimer Disease Trials-Opportunities Abound. JAMA Netw Open. 2021; 4(7):e2114606. DOI: 10.1001/jamanetworkopen.2021.14606. View

4.
Jorm A . A short form of the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE): development and cross-validation. Psychol Med. 1994; 24(1):145-53. DOI: 10.1017/s003329170002691x. View

5.
Wilkins C, Schindler S, Morris J . Addressing Health Disparities Among Minority Populations: Why Clinical Trial Recruitment Is Not Enough. JAMA Neurol. 2020; 77(9):1063-1064. PMC: 7983552. DOI: 10.1001/jamaneurol.2020.1614. View