The need for personalization when sharing results of amyloid imaging for Alzheimer's disease: Insights from a randomized experimental study.

Objective: To study information needs after receiving abnormal amyloid-PET results, and how individual characteristics moderate effects of different communication strategies on information recall.

Methods: In an online video-vignette experiment, seven vignettes each depicted a consultation of a physician sharing abnormal amyloid-PET results with a patient with Mild Cognitive Impairment(MCI), using different communication strategies. Healthy individuals (N = 1017; age 64 ± 8, 808(79 %) female), instructed to imagine themselves as the video-patient, viewed a randomly-assigned vignette and completed questionnaires to assess information needs and test moderation effects of gender, age, care-partner experience, health literacy, and coping.

Computerized decision support is an effective approach to select memory clinic patients for amyloid-PET.

Background: The use of amyloid-PET in dementia workup is upcoming. At the same time, amyloid-PET is costly and limitedly available. While the appropriate use criteria (AUC) aim for optimal use of amyloid-PET, their limited sensitivity hinders the translation to clinical practice.

Impact of COVID-19 pandemic on mortality rate in memory clinic patients.

Introduction: We investigated whether mortality in memory clinic patients changed due to coronavirus disease 2019 (COVID-19) pandemic.

Methods: We included patients from the Amsterdam Dementia Cohort: (1)  = 923 pandemic patients (baseline visit: 2017-2018, follow-up: until 2021), and (2)  = 830 historical control patients (baseline visit: 2015-2016, follow-up: until 2019). Groups were well-balanced.

Predicting sojourn times across dementia disease stages, institutionalization, and mortality.

Introduction: Inferring the timeline from mild cognitive impairment (MCI) to severe dementia is pivotal for patients, clinicians, and researchers. Literature is sparse and often contains few patients. We aim to determine the time spent in MCI, mild-, moderate-, severe dementia, and institutionalization until death.

Clinical Effect of Early vs Late Amyloid Positron Emission Tomography in Memory Clinic Patients: The AMYPAD-DPMS Randomized Clinical Trial.

Importance: Amyloid positron emission tomography (PET) allows the direct assessment of amyloid deposition, one of the main hallmarks of Alzheimer disease. However, this technique is currently not widely reimbursed because of the lack of appropriately designed studies demonstrating its clinical effect.

Objective: To assess the clinical effect of amyloid PET in memory clinic patients.

Determinants of informal care time, distress, depression, and quality of life in care partners along the trajectory of Alzheimer's disease.

Introduction: We evaluated determinants associated with care partner outcomes along the Alzheimer's disease (AD) stages.

Methods: We included = 270 care partners of amyloid-positive patients in the pre-dementia and dementia stages of AD. Using linear regression analysis, we examined determinants of four care partner outcomes: informal care time, caregiver distress, depression, and quality of life (QoL).

Steeper memory decline after COVID-19 lockdown measures.

Background: During COVID-19 lockdown measures, memory clinic patients reported worries for faster cognitive decline, due to loss of structure and feelings of loneliness and depression. We aimed to investigate the impact of the COVID-19 lockdown on rate of cognitive decline in a mixed memory clinic population, compared to matched historical controls.

Methods: We included patients who visited Alzheimer Center Amsterdam 6 months to 1 week before the first Dutch COVID-19 lockdown, and had a second visit 1 year later, after this lockdown period (n = 113; 66 ± 7 years old; 30% female; n = 55 dementia, n = 31 mild cognitive impairment (MCI), n = 18 subjective cognitive decline (SCD), n = 9 postponed diagnosis).

Life satisfaction across the entire trajectory of Alzheimer's disease: A mediation analysis.

Introduction: We studied life satisfaction across Alzheimer's disease (AD) stages and studied mobility and meaningful activities as mediators of the associations between these AD stages and life satisfaction.

Methods: In this cross-sectional study, we included = 269 amyloid-positive patients with subjective cognitive decline (SCD), mild cognitive impairment (MCI), and AD dementia from the Amsterdam Dementia Cohort. Life satisfaction was measured with the satisfaction with life scale.

A more precise diagnosis by means of amyloid PET contributes to delayed institutionalization, lower mortality, and reduced care costs in a tertiary memory clinic setting.

Introduction: We aim to study the effect of a more precise diagnosis, by means of amyloid positron emission tomography (PET), on institutionalization, mortality, and health-care costs.

Methods: Between October 27, 2014 and December 31, 2016, we offered amyloid PET to all patients as part of their diagnostic work-up. Patients who accepted to undergo amyloid PET (n = 449) were propensity score matched with patients without amyloid PET (n = 571, i.

A longitudinal study on quality of life along the spectrum of Alzheimer's disease.

Background: Quality of life (QoL) is an important outcome from the perspective of patients and their caregivers, in both dementia and pre-dementia stages. Yet, little is known about the long-term changes in QoL over time. We aimed to compare the trajectories of QoL between amyloid-positive and amyloid-negative SCD or MCI patients and to evaluate QoL trajectories along the Alzheimer's disease (AD) continuum of cognitively normal to dementia.

Development of multivariable prediction models for institutionalization and mortality in the full spectrum of Alzheimer's disease.

Background: Patients and caregivers express a desire for accurate prognostic information about time to institutionalization and mortality. Previous studies predicting institutionalization and mortality focused on the dementia stage. However, Alzheimer's disease (AD) is characterized by a long pre-dementia stage.

Clinical applicability of quantitative atrophy measures on MRI in patients suspected of Alzheimer's disease.

Objectives: Neurodegeneration in suspected Alzheimer's disease can be determined using visual rating or quantitative volumetric assessments. We examined the feasibility of volumetric measurements of gray matter (GMV) and hippocampal volume (HCV) and compared their diagnostic performance with visual rating scales in academic and non-academic memory clinics.

Materials And Methods: We included 231 patients attending local memory clinics (LMC) in the Netherlands and 501 of the academic Amsterdam Dementia Cohort (ADC).

Identifying best practices for disclosure of amyloid imaging results: A randomized controlled trial.

Introduction: Empirical studies on effective communication for amyloid disclosure in mild cognitive impairment (MCI) are lacking. We aimed to study the impact of six communication strategies.

Method: We performed a randomized controlled trial with seven randomly assigned, video-vignette conditions: six emphasizing a communication strategy and one basic condition.

Psychosocial Effects of COVID-19 Measures on (Pre-)Dementia Patients During Second Lockdown.

Background: The COVID-19 pandemic poses enormous social challenges, especially during lockdown. People with cognitive decline and their caregivers are particularly at risk of lockdown consequences.

Objective: To investigate psychosocial effects in (pre-)dementia patients and caregivers during second lockdown and compare effects between first and second lockdown.

Identifying relevant outcomes in the progression of Alzheimer's disease; what do patients and care partners want to know about prognosis?

Background: Prognostic studies in the context of Alzheimer's disease (AD) mainly predicted time to dementia. However, it is questionable whether onset of dementia is the most relevant outcome along the AD disease trajectory from the perspective of patients and their care partners. Therefore, we aimed to identify the most relevant outcomes from the viewpoint of patients and care partners.

Dutch Brain Research Registry for study participant recruitment: Design and first results.

Introduction: The Dutch Brain Research Registry aims to facilitate online recruitment of participants for brain disease studies.

Methods: Registrants were primarily recruited through an online social media campaign. The registration process included a short questionnaire, which was subsequently used in the prescreening process to match participants to studies.

Biomarker testing in MCI patients-deciding who to test.

Background: We aimed to derive an algorithm to define the optimal proportion of patients with mild cognitive impairment (MCI) in whom cerebrospinal fluid (CSF) testing is of added prognostic value.

Methods: MCI patients were selected from the Amsterdam Dementia Cohort (n = 402). Three-year progression probabilities to dementia were predicted using previously published models with and without CSF data (amyloid-beta1-42 (Abeta), phosphorylated tau (p-tau)).

Psychosocial Effects of Corona Measures on Patients With Dementia, Mild Cognitive Impairment and Subjective Cognitive Decline.

The recent COVID-19 pandemic is not only a major healthcare problem in itself, but also poses enormous social challenges. Though nursing homes increasingly receive attention, the majority of people with cognitive decline and dementia live at home. We aimed to explore the psychosocial effects of corona measures in memory clinic (pre-)dementia patients and their caregivers.

Clinicians' communication with patients receiving a MCI diagnosis: The ABIDE project.

Background: We aimed to explore clinicians' communication, including the discussion of diagnosis, cause, prognosis and care planning, in routine post-diagnostic testing consultations with patients with Mild Cognitive Impairment (MCI).

Methods: Thematic content analysis was used to analyze audiotaped consultations in which 10 clinicians (eight neurologists and two geriatricians) from 7 memory clinics, disclosed diagnostic information to 13 MCI patients and their care partners. We assessed clinician-patient communication regarding diagnostic label, cause, prognosis and care planning to identify core findings.

Selection of memory clinic patients for CSF biomarker assessment can be restricted to a quarter of cases by using computerized decision support, without compromising diagnostic accuracy.

Introduction: An accurate and timely diagnosis for Alzheimer's disease (AD) is important, both for care and research. The current diagnostic criteria allow the use of CSF biomarkers to provide pathophysiological support for the diagnosis of AD. How these criteria should be operationalized by clinicians is unclear.

Applying the ATN scheme in a memory clinic population: The ABIDE project.

Objective: To apply the ATN scheme to memory clinic patients, to assess whether it discriminates patient populations with specific features.

Methods: We included 305 memory clinic patients (33% subjective cognitive decline [SCD]: 60 ± 9 years, 61% M; 19% mild cognitive impairment [MCI]: 68 ± 9 years, 68% M; 48% dementia: 66 ± 10 years, 58% M) classified for positivity (±) of amyloid (A) ([F]Florbetaben PET), tau (T) (CSF p-tau), and neurodegeneration (N) (medial temporal lobe atrophy). We assessed ATN profiles' demographic, clinical, and cognitive features at baseline, and cognitive decline over time.

Assessment of the appropriate use criteria for amyloid PET in an unselected memory clinic cohort: The ABIDE project.

Introduction: The objective of this study was to assess the usefulness of the appropriate use criteria (AUC) for amyloid imaging in an unselected cohort.

Methods: We calculated sensitivity and specificity of appropriate use (increased confidence and management change), as defined by Amyloid Imaging Taskforce in the AUC, and other clinical utility outcomes. Furthermore, we compared differences in post-positron emission tomography diagnosis and management change between "AUC-consistent" and "AUC-inconsistent" patients.

Biomarker-based prognosis for people with mild cognitive impairment (ABIDE): a modelling study.

Background: Biomarker-based risk predictions of dementia in people with mild cognitive impairment are highly relevant for care planning and to select patients for treatment when disease-modifying drugs become available. We aimed to establish robust prediction models of disease progression in people at risk of dementia.

Methods: In this modelling study, we included people with mild cognitive impairment (MCI) from single-centre and multicentre cohorts in Europe and North America: the European Medical Information Framework for Alzheimer's Disease (EMIF-AD; n=883), Alzheimer's Disease Neuroimaging Initiative (ADNI; n=829), Amsterdam Dementia Cohort (ADC; n=666), and the Swedish BioFINDER study (n=233).

ABIDE Delphi study: topics to discuss in diagnostic consultations in memory clinics.

Background: Information given to patients and caregivers during the clinician-patient encounter varies considerably between memory clinic professionals. Patients and caregivers express a clear desire for more information. It is unclear what information patients and caregivers value most during the diagnostic process and whether this is concordant with professionals' opinion.