Exploring barriers and facilitators for the implementation of Alzheimer’s disease blood‐based biomarkers in primary care: The CANTATE‐Perspectives study.

Background: Adequately diagnosing Alzheimer’s disease (AD) in primary care can be challenging. Early symptoms often go unrecognized and other (neurodegenerative) diseases may be misdiagnosed as AD. AD blood‐based biomarkers could improve the diagnostic process for cognitive complaints in primary care.

The impact of tau‐PET in a selected memory clinic cohort: design and rationale of the TAP‐TAU study.

Background: Tau‐PET is a diagnostic tool with high sensitivity and high specificity for discriminating Alzheimer Disease (AD) dementia from other neurodegenerative disorders in well‐controlled research environments. The role of tau‐PET in “real‐world” clinical practice, however, remains to be established. We hypothesize that tau‐PET will lead to some changes of the pre‐PET clinical diagnosis and will improve diagnostic certainty and patient management in patients with considerable diagnostic uncertainty.

Feasibility and acceptability of APOE genotyping in Dutch Brain Research Registry participants.

Background: Participant recruitment for Alzheimer’s disease (AD) research and clinical trials is challenging. Online registries can be used to identify and pre‐screen eligible participants. Additional APOE genotyping has the potential to better identify individuals at‐risk for AD.

Amyloid‐PET disclosure in Subjective Cognitive Decline: patient experiences and outcomes over time.

Background: Communicating amyloid‐status and the subsequent risk of future cognitive decline to individuals with Subjective Cognitive Decline (SCD) is complex. Insight into how individuals with SCD evaluate the disclosure process and its impact could help optimize current practice. Therefore, the aim of our study was to examine experiences with, and outcomes of, amyloid‐PET disclosure in individuals with SCD over time.

Communicating with patients about the new disease‐modifying treatment(s) for Alzheimer’s disease: the perspective of memory clinic professionals.

Background: The first disease‐modifying treatments (DMTs) for Alzheimer’s disease (AD) have been approved in the USA, marking profound changes in AD‐diagnosis and treatment. This will bring new challenges in terms of clinician‐patient communication. We aimed to collect the perspectives of memory clinic professionals regarding the most important topics to address and what (tools) would support professionals and their patients and care partners to engage in a meaningful conversation on whether (or not) to initiate treatment.

Patients’ perceptions and considerations regarding DNA testing in a memory clinic: DNA‐ABOARD.

Background: Data‐driven criteria for DNA testing were implemented in routine care of Alzheimer Center Amsterdam. We aimed to explore patients’ perspectives and considerations regarding their decision to (not) be tested for a monogenic cause of their disease.

Methods: In this mixed method study, 150 of 519 new patients visiting Alzheimer Center Amsterdam who fulfilled the criteria were offered DNA‐diagnostics: 86(57%) accepted, 64(43%) did not.

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 to optimally funnel patients through the diagnostic pathway for dementia.

Background: The increasing prevalence of dementia and the introduction of disease-modifying therapies (DMTs) highlight the need for efficient diagnostic pathways in memory clinics. We present a data-driven approach to efficiently guide stepwise diagnostic testing for three clinical scenarios: 1) syndrome diagnosis, 2) etiological diagnosis, and 3) eligibility for DMT.

Methods: We used data from two memory clinic cohorts (ADC, PredictND), including 504 patients with dementia (302 Alzheimer's disease, 107 frontotemporal dementia, 35 vascular dementia, 60 dementia with Lewy bodies), 191 patients with mild cognitive impairment, and 188 cognitively normal controls (CN).

Transitions: Living With Young-Onset Alzheimer's Disease: A Qualitative Interview Study.

Introduction: Persons with young-onset dementia (YOD) are confronted with specific challenges. Due to the neurodegenerative nature of the disease, people diagnosed with YOD face many changes with different consequences, for example, regarding their life perspective. These changes can give rise to transition processes and strategies for coping, hopefully stimulating well-being and acceptance.

Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time.

Introduction: We disclosed amyloid positron emission tomography (PET) results in individuals with subjective cognitive decline (SCD) and studied patient experiences and outcomes over a 6-month period.

Methods: Fifty-seven participants from the Subjective Cognitive Impairment Cohort (SCIENCe) (66 ± 8 years, 21 [37%] F, Mini-Mental State Examination 29 ± 1, 15 [26%] amyloid positive [A+]) completed questionnaires 1 week prior (T0), 1 day after (T1), and 6 months after amyloid PET disclosure (T2). Questionnaires addressed patient-reported experiences and outcomes.

Capturing Usability Problems for People Living With Dementia by Applying the DEMIGNED Principles in Usability Evaluation Methods: Mixed Methods Study.

Background: Dementia-related impairments can cause complex barriers to access, use, and adopt digital health technologies (DHTs). These barriers can contribute to digital health inequities. Therefore, literature-based design principles called DEMIGNED have been developed to support the design and evaluation of DHTs for this rapidly increasing population.

How Information Affects Patients with Parkinson's Disease: A Scoping Review of the Literature.

Background: Patients with Parkinson's disease (PD) need to receive adequate information to manage their disease. However, little is known about how information provision affects patients.

Objective: To conduct a scoping review of the literature on the relationship between content, timing, manner of delivery, and source of PD-specific information on the one hand, and patient outcomes on the other.

Predicting Cognitive Decline in Amyloid-Positive Patients With Mild Cognitive Impairment or Mild Dementia.

Background And Objectives: Cognitive decline rates in Alzheimer disease (AD) vary greatly. Disease-modifying treatments may alter cognitive decline trajectories, rendering their prediction increasingly relevant. We aimed to construct clinically applicable prediction models of cognitive decline in amyloid-positive patients with mild cognitive impairment (MCI) or mild dementia.

Socio-Cognitive Determinants of Lifestyle Behavior in the Context of Dementia Risk Reduction: A Population-Based Study in the Netherlands.

Background: Unhealthy behavior increases the risk of dementia. Various socio-cognitive determinants influence whether individuals persist in or alter these unhealthy behaviors.

Objective: This study identifies relevant determinants of behavior associated to dementia risk.

Use of a digital tool to support the diagnostic process in memory clinics-a usability study.

Background: Both memory clinic professionals and patients see value in digital tools, yet these hardly find their way to clinical practice. We explored the usability of a digital tool to support the diagnostic work-up in daily memory clinic practice. We evaluated four modules that integrate multi-modal patient data (1.

The expectations and experiences of patients regarding the diagnostic workup at a specialized memory clinic: An interview study.

Background: Because of the shift towards earlier diagnosis of dementia and/or Alzheimer's disease (AD), increasing numbers of individuals with subjective cognitive decline (SCD) and mild cognitive impairment (MCI) are seen in memory clinics. Yet, evidence indicates that there is room for improvement when it comes to tailoring of the diagnostic work-up to the needs of individual patients. To optimize the quality of care, we explored patients' perspectives regarding the diagnostic work-up at a specialized memory clinic.

Caregivers' attitudes toward blood-based biomarker testing for Alzheimer's disease.

Introduction: We aimed to evaluate informal caregivers' attitudes toward undergoing and future implementation of blood-based biomarkers (BBBM) testing for Alzheimer's disease (AD).

Methods: We explored caregivers' perspectives, by combining an online survey ( = 107) with a subsequent focus group ( = 7). We used descriptive statistics and thematic content analysis to identify common themes in answers to open-ended survey questions and focus group data.

Interest in genetic susceptibility testing and disclosure of AD dementia risk in cognitively normal adults: a survey study.

Background: Apolipoprotein-E (APOE) genetic testing for Alzheimer's disease is becoming more important as clinical trials are increasingly targeting individuals carrying APOE-ε4 alleles. Little is known about the interest in finding out one's genetic risk for Alzheimer's disease in the general population. Our objective was to examine this in a sample of cognitively normal (CN) adults within a population-based online research registry with the goal to implement APOE-ε4 status for trial recruitment.

Family Members' Experiences of Young-Onset Dementia: Becoming Responsible Yet Feeling Powerless.

Purpose: Dementia is often associated with old age but can also occur in midlife. The latter is commonly referred to as young-onset dementia (YOD). The diagnosis not only has an impact on the persons with YOD but also on their family members.

Communication about diagnosis, prognosis, and prevention in the memory clinic: perspectives of European memory clinic professionals.

Background: The paradigm shift towards earlier Alzheimer's disease (AD) stages and personalized medicine creates new challenges for clinician-patient communication. We conducted a survey among European memory clinic professionals to identify opinions on communication about (etiological) diagnosis, prognosis, and prevention, and inventory needs for augmenting communication skills.

Methods: Memory clinic professionals (N = 160) from 21 European countries completed our online survey (59% female, 14 ± 10 years' experience, 73% working in an academic hospital).

Impact of sharing Alzheimer's disease biomarkers with individuals without dementia: A systematic review and meta-analysis of empirical data.

Introduction: We conducted a systematic literature review and meta-analysis of empirical evidence on expected and experienced implications of sharing Alzheimer's disease (AD) biomarker results with individuals without dementia.

Methods: PubMed, Embase, APA PsycInfo, and Web of Science Core Collection were searched according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Results from included studies were synthesized, and quantitative data on psychosocial impact were meta-analyzed using a random-effects model.

Rationale and design of the ABOARD project (A Personalized Medicine Approach for Alzheimer's Disease).

Unlabelled: The key to stopping Alzheimer's disease (AD) lies in the pre-dementia stages, with the goal to stop AD before dementia has started. We present the rationale and design of the ABOARD (A Personalized Medicine Approach for Alzheimer's Disease) project, which aims to invest in personalized medicine for AD. ABOARD is a Dutch public-private partnership of 32 partners, connecting stakeholders from a scientific, clinical, and societal perspective.

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).