Implications for Behavioral and Social Research of Preclinical Markers of Alzheimer's Disease and Related Dementias Proceedings of a Workshop–in Brief (2021) / Chapter Skim
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Implications for Behavioral and Social Research of Preclinical Markers of Alzheimer's Disease and Related Dementias: Proceedings of a Workshop - in Brief
Implications for Behavioral and Social Research of Preclinical Markers of Alzheimer's Disease and Related Dementias: Proceedings of a Workshop - in Brief
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From page 1... ...
The data on race and ethnicity are scarce, said Sperling, but the findings thus far suggest that biomarker associations with genetic factors and risk of future cognitive decline may also be heterogeneous with respect to race. She stressed that once people become symptomatic with mild cognitive impairment or AD dementia, tauPET imaging reveals rapid change, and it may be too late to intervene.
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Given the capability of detecting AD early, Sperling listed several of the potential reasons to disclose increased risk to individuals with preclinical markers: there are a number of therapeutics in the pipeline that may delay or prevent AD; there are ongoing trials studying primary and secondary prevention of AD; and lifestyle and other health interventions (e.g., physical activity) may be protective against cognitive decline though they may have differential effects depending on biomarker status.
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She emphasized the importance of representative sampling and said that oversampling of some groups is often necessary to have sufficient power to detect differences across groups. Manly identified recruitment approaches that she considers ineffective for inclusive research, including recruiting through clinics or patient registries, ads or fliers, talks in churches by White researchers, cognitive screens in primary care, relying on diverse trainees to create a diverse cohort, and using inclusion/exclusion criteria that differentially exclude diverse populations (e.g., hypertension, English speaking)
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RISK OF OVERDIAGNOSIS The goal of using preclinical biomarkers is to identify individuals with pathology but normal cognitive function to better target effective therapies to delay or prevent the onset of dementia, said Ken Langa (University of Michigan)
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IDEAS uses amyloid PET scans to gather more information on patients with an unclear diagnosis, and CARE uses surveys and interviews to examine why these patients and their care partners sought a definitive diagnosis of cognitive defects, how they reacted to the results, and what impact the results had on their future plans. The qualitative data, said Mor, showed that when PET scan results were in line with the care partner's perceptions of the patient's cognition (e.g., a positive scan for a patient with cognitive impairment)
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On the first day she was onsite, she had a "huge TV camera" in her face, and a news reporter asked her "How does it feel to have a death sentence? " DeCoste said that she does not feel like she has a death sentence: "Having one part of the disease does not mean that I have the whole disease and does not mean that I will have it." DeCoste was motivated to join the study because her mother died from AD, and her sister was "on the path" from mild cognitive impairment to full-blown Alzheimer's.
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Grill said that there are several ethical concerns with disclosing genetic or biomarker status to patients, which include the risks of clinical depression, anxiety, and suicide. Given the ethical challenges of studying the reactions to disclosure, said Grill, the evidence has come almost exclusively from interventional trials in which participants receive biomarker results prior to randomization as a function of learning eligibility.
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(Milne) ECONOMIC IMPACT OF PRECLINICAL DIAGNOSTICS The economic implications of preclinical biomarkers are massive, said Julie Zissimopoulos (University of Southern California)
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If the predictive value is high, it allows a patient to make plans and select appropriate caregivers, as well as to optimize choices in employment, consumption, and bequest plans. A good preclinical diagnostic could also allow researchers to identify ways to prevent AD by examining behaviors and other characteristics that affect risk.
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Trials that are integrated into practice settings allow researchers to leverage electronic health records to identify potential study participants, study real-world patients and primary care providers, and reach a more diverse and generalizable population. "The time is right for these efforts," said Burns; primary care practitioners "need answers to the questions that they're getting all the time as our population ages." Burns explained that his research focuses on the impact of exercise on cognitive decline, and he noted that previous studies suffered from nonrepresentative participants, high burden interventions, and long duration.
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She said that research has shown that advanced directives are not well-suited to dementia care and that preclinical disclosure presents an opportunity to think about alternative support structures for patients and families that promote autonomy while also protecting the vulnerable. Sperling and other committee members noted that the workshop discussion was very valuable in highlighting the need for additional data collection and analyses, particularly in more diverse populations, to inform plans for disclosure in both ongoing studies and eventually in clinical care.
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. Implications for Behavioral and Social Research of Preclinical Markers of Alzheimer's Disease and Related Dementias: Proceedings of a Workshop -- in-Brief.
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