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

Long-Term Outcomes of the Benefit-Finding Group Intervention for Alzheimer Family Caregivers: A Cluster-Randomized Double-Blind Controlled Trial

Objectives To examine the effects of the group benefit-finding intervention (BFT) for Alzheimer family caregivers up to 10-month follow-up. Design Cluster-randomized double-blind controlled trial. Setting Social centers and clinics. Participants 129 caregivers. Inclusion criteria were (a) primary caregiver aged 18+ and without cognitive impairment, (b) providing ≥14 care hours per week to a relative with mild-to-moderate Alzheimer's disease, and (c) scoring ≥3 on the Hamilton Depression Rating Scale. Exclusion criterion was care-recipient having parkinsonism or other forms of dementia. Interventions BFT (using cognitive reappraisal to find positive meanings) was evaluated against two forms of psychoeducation as controls—standard (STD-PE) and simplified (lectures only; SIM-PE) psychoeducation. All interventions had eight weekly sessions of 2 hours each. Measurements Primary outcome was depressive symptom, whereas secondary outcomes were global burden, role overload, and psychological well-being. Measures were collected at baseline, post-intervention, and 4- and 10-month follow-up. Results Mixed-effects regression showed that BFT's effect on depressive symptoms conformed to a curvilinear pattern, in which the strong initial effect leveled out after post-intervention and was maintained up to 10-month follow-up; this was true when compared against either control group. The effect on global burden was less impressive but moderate effect sizes were found at the two follow-ups. For psychological well-being, there was an increase in the BFT group at 4-month follow-up and a return to baseline afterwards. No effect on role overload was found. Conclusions Benefit-finding reduces depressive symptoms as well as global burden in the long-term, and increases psychological well-being in the medium-term

It's definitely not Alzheimer's: perceived benefits and drawbacks of a mild cognitive impairment diagnosis

Objectives. To understand the perceived benefits and drawbacks of a mild cognitive impairment (MCI) diagnosis from the perspective of those living with the label. Methods. Participants were included if they had recently (within 6 months) received a MCI diagnosis. We also recruited close family members to gain their perspectives. Each was interviewed separately with a semi-structured topic guide covering three areas: (1) experience of cognitive impairments and changes in the individual; (2) impact of cognitive impairment(s) on daily activities and social relationships; and (3) experience of the diagnosis process and living with the label. Transcribed interviews were stored in Nvivo". Grounded theory procedures of memo writing, open coding, constant comparison, and focused coding were used to derive conceptual themes. Results. Eighteen dyads were interviewed.The overarching themes surrounding diagnosis benefits and drawbacks were as follows: (1) emotional impact of the diagnosis; (2) practical benefits and limitations of the diagnosis, in terms of (a) understanding one’s symptoms and (b) access to clinical support. Although participants were glad to have clinical support in place, they expressed frustration at the lack of clarity, and the lack of available treatments for MCI. Consequently, living with MCI can be characterized as an ambivalent experience. Conclusion. As a clinical label,MCI appears to have little explanatory power for people living with cognitive difficulties. Work is needed to clarify how clinicians and patients communicate about MCI, and how people can be helped to live well with the label. Despite an emerging body of prognostic studies, people with MCI are likely to continue living with significant uncertainty

An Open-Label Study of Aripiprazole in Children with a Bipolar Disorder

The purpose of this open-label study was to describe the effectiveness of aripiprazole (APZ) in the treatment of children with bipolar disorders suffering from manic symptomatology

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

An Open-Label Study of Aripiprazole in Children with a Bipolar Disorder

Abstract Objective: The purpose of this open-label study was to describe the effectiveness of aripiprazole (APZ) in the treatment of children with bipolar disorders suffering from manic symptomatology. Method: Symptomatic outpatients (Young Mania Rating Scale [YMRS] score !15) meeting strict, unmodified, Diagnostic and Statistical Manual of Mental Disorders, 4th edition, diagnostic symptom criteria for a bipolar disorder, ages 4-9 years, were eligible. Subjects were treated prospectively with flexible doses of APZ (maximum daily dose of 15 mg/day), for up to 16 weeks or until a priori response criteria were met. Outcome measures included the YMRS, Clinical Global Impressions ScaleSeverity, Children's Global Assessment Scale (CGAS), and the Children's Depression Rating Scale-Revised (CDRS-R). A priori response criteria consisted of 3 of 4 consecutive weeks with (1) CDRS-R <29; (2) YMRS <10; and (3) CGAS >50. Results: Ninety-six children (62 males; mean age of 6.9 (SD ¼ 1.7), received APZ for an average length of treatment of 12.5 (SD ¼ 3.9) weeks. Significant improvements in YMRS, CDRS-R, CGAS, and Clinical Global Impressions Scale-Severity scores ( p < 0.001) were noted at the end of study participation. Sixty of the subjects (62.5%) met a priori response criteria at study's end. The most common side effects noted were stomachache, increased appetite, and headache. Two subjects were removed from the study due to side effects [epistaxis (n ¼ 1); akathisia (n ¼ 1)]. Subjects experienced an average weight gain of 2.4 (SD ¼ 1.9) kg. Conclusion: APZ may be effective in the acute treatment of symptoms of children with bipolar illnesses