Amyloid positron emission tomography candidates may focus more on benefits than risks of results disclosure

IntroductionGiven mounting calls to disclose biomarker test results to research participants, we explored factors underlying decisions by patients with mild cognitive impairment to receive amyloid imaging results.MethodsProspective, qualitative interviews were conducted with 59 participants (30 = mild cognitive impairment patients, 29 = care partners) from the scan arm of a randomized controlled trial on the effects of amyloid PET results disclosure in an Alzheimer Disease Research Center setting.ResultsSixty‐three percent of the participants were female, with an average age of 72.9 years, and most had greater than a high school level of education (80%). Primary motivations included: (1) better understanding one’s mild cognitive impairment etiology and prognosis to plan ahead, and (2) learning one’s brain amyloid status for knowledge’s sake, regardless of whether the information is actionable. Most participants demonstrated an adequate understanding of the scan’s limitations, yet instances of characterizing amyloid PET as a definitive test for Alzheimer’s disease occurred. Mention of potential drawbacks, such as negative psychological outcomes, was minimal, even among care partners.DiscussionFindings demonstrate a risk of disproportionate focus on possible benefits of testing among amyloid scan candidates and suggest a need to clearly emphasize the limitations of amyloid PET when counseling cognitively impaired patients and their families before testing. Future research should examine whether minimizing drawbacks at the pre‐imaging stage has adverse consequences on results disclosure.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/152635/1/dad2jdadm201805003.pd

Overcoming the COVID-19 Pandemic for Dementia Research: Engaging Rural, Older, Racially and Ethnically Diverse Church Attendees in Remote Recruitment, Intervention and Assessment

Background: Access to cognitive screening in rural underserved communities is limited and was further diminished during the COVID-19 pandemic. We examined whether a telephone-based cognitive screening intervention would be effective in increasing ADRD knowledge, detecting the need for further cognitive evaluation, and making and tracking the results of referrals. Method: Using a dependent t-test design, older, largely African American and Afro-Caribbean participants completed a brief educational intervention, pre/post AD knowledge measure, and cognitive screening. Results: Sixty of 85 eligible individuals consented. Seventy-percent of the sample self-reported as African American, Haitian Creole, or Hispanic, and 75% were female, with an average age of 70. AD knowledge pre-post scores improved significantly (t (49) = −3.4, p \u3c .001). Of the 11 referred after positive cognitive screening, 72% completed follow-up with their provider. Five were newly diagnosed with dementia. Three reported no change in diagnosis or treatment. Ninety-percent consented to enrolling in a registry for future research. Conclusion: Remote engagement is feasible for recruiting, educating, and conducting cognitive screening with rural older adults during a pandemic

P4‐564: Short‐Term Outcomes Of A Randomized Controlled Trial Of Amyloid Pet Results Disclosure In Mild Cognitive Impairment

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/152786/1/alzjjalz201908111.pd

Biomarker disclosure protocols in prodromal Alzheimer's disease clinical trials

IntroductionThe development of biomarkers for Alzheimer's disease (AD) has allowed researchers to increase sample homogeneity and test candidate treatments earlier in the disease. The integration of biomarker "screening" criteria should be met with a parallel implementation of standardized methods to disclose biomarker testing results to research participants; however, the extent to which protocolized disclosure occurs in trials is unknown.MethodsWe reviewed the literature to identify prodromal AD trials published in the past 10 years. From these, we quantified the frequency of biomarker disclosure reporting and the depth of descriptions provided.ResultsOf 30 published trials using positron emission tomography or cerebrospinal fluid-based amyloid positivity as an eligibility criterion, only one mentioned disclosure, with no details on methods.DiscussionPossible reasons for and implications of this information gap are discussed. Recommendations are provided for trialists considering biomarker screening as part of intervention trials focused on prodromal AD.HighlightsFew prodromal Alzheimer's disease (AD) trial papers discuss biomarker disclosure. Disclosure has implications for participants, family members, and trial success. Disclosure must be consistently integrated and reported in prodromal AD trials. Best practice guidelines and training resources for disclosure are needed

A randomized controlled trial of amyloid positron emission tomography results disclosure in mild cognitive impairment

IntroductionRecent studies suggest that Alzheimer’s disease (AD) biomarker disclosure has no discernable psychological impact on cognitively healthy persons. Far less is known about how such results affect symptomatic individuals and their caregivers.MethodsRandomized controlled trial of 82 mild cognitive impairment (MCI) patient and caregiver dyads (total n = 164) to determine the effect of receiving amyloid positron emission tomography results on understanding of, and perceived efficacy to cope with, MCI over 52 weeks of follow‐up.ResultsGains in the primary outcomes were not consistently observed. Amyloid negative patients reported greater perceived ambiguity regarding MCI at follow‐up, while moderate and sustained emotional distress was observed in patients, and to a lesser extent, caregivers, of those who were amyloid positive. There was no corresponding increase in depressive symptoms.DiscussionThese findings point to the possibility that both MCI patients and caregivers may need emotional support after the disclosure of amyloid scan results.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/163444/2/alz12129_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/163444/1/alz12129.pd

Attitudes Toward Advance Care Planning Among Persons with Dementia and their Caregivers

Objectives: To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race. Design: Cross-sectional survey. Setting: 13 geographically dispersed Alzheimer's Disease Centers across the United States. Participants: 431 racially diverse caregivers of persons with dementia. Measurements: Survey on "Care Planning for Individuals with Dementia." Results: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful. Conclusions: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP

F3‐01‐02: Development of a standardized approach to disclosing amyloid imaging results in MCI

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/152562/1/alzjjalz2012052119.pd

O4‐03‐05: Interprofessional Team Training For Early Identification Of Adrd

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/152936/1/alzjjalz2018062925.pd

O3–08–03: Disclosing amyloid imaging results in MCI: What do patients and families want, and why?

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/152549/1/alzjjalz201304281.pd

Engaging rural older minority adults in dementia research during a pandemic‐associated quarantine

Background Rural‐dwelling individuals are at heightened risk for dementia syndromes as they age. Recognizing that faith institutions are bulwarks in rural communities, we partnered with churches to design research that aims to improve knowledge of, and promote screening for, dementia. Since recruitment began just as COVID‐19 emerged, in‐person recruitment ceased. We developed a virtual protocol to train health educators and engage rural, racially diverse congregants. Method Guided by Schoenberg’s (2011) “Faith Moves Mountains” model, health educators were trained via videoconferencing, using Alzheimer’s Association online English/Spanish resources. Educators approached 35 congregants to administer telephone‐based teaching, pre‐post tests of dementia knowledge, and dementia screening. Results Thirty rural older adults responded to faith health educator tele‐recruitment and intervention. Pre‐post knowledge surveys showed significant improvement (r=.67, p=.04). Thirteen (43%) completed dementia screening, followed by referral to a memory telehealth clinic. Conclusion This faith‐based model shows promise for reaching isolated rural residents facing dementia risk