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

ALZHEIMERS & DEMENTIA (2023)

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Article Gerontology

Reactions to Amyloid PET Scan Results and Levels of Anxious and Depressive Symptoms: CARE IDEAS Study

Emmanuelle Belanger et al.

Summary: This study explored the reactions of care partners to amyloid PET scan results and found that care partners reported relief and gratitude when scan results aligned with their expectations. However, care partners of individuals with mild cognitive impairment had higher odds of anxiety after receiving elevated amyloid PET scan results.

GERONTOLOGIST (2023)

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Article Clinical Neurology

Prediction of Longitudinal Cognitive Decline in Preclinical Alzheimer Disease Using Plasma Biomarkers

Niklas Mattsson-Carlgren et al.

Summary: Plasma P-tau217 can predict cognitive decline in patients with preclinical AD, suggesting it may be used as a complement to CSF or PET for participant selection in clinical trials.

JAMA NEUROLOGY (2023)

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Article Medicine, General & Internal

Analysis of Psychological Symptoms Following Disclosure of Amyloid-Positron Emission Tomography Imaging Results to Adults With Subjective Cognitive Decline

Camilla Caprioglio et al.

Summary: Individuals who are amyloid-positive with subjective cognitive decline (SCD+) are at higher risk of developing dementia. The disclosure of a positive amyloid-PET result might have psychological risks, but such change did not reach the threshold for clinical concern.

JAMA NETWORK OPEN (2023)

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Article Ethics

How to derive ethically appropriate recommendations for action? A methodology for applied ethics

Sebastian Schleidgen et al.

Summary: Researchers in applied ethics aim to develop concrete recommendations for moral action in real-world situations. However, even with the same ethical principle, different and contradictory recommendations can arise. By examining contingencies in ethical reasoning and the role of bridge principles, it is possible to ensure that these recommendations are not arbitrary.

MEDICINE HEALTH CARE AND PHILOSOPHY (2023)

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Article Clinical Neurology

Impact of Amyloid and Tau PET on Changes in Diagnosis and Patient Management

Sho Shimohama et al.

Summary: This study evaluated the clinical impact of combining amyloid and tau PETs on diagnosis, treatment, and management in a memory clinic cohort. It found that tau PET had a stronger association with changes in management and diagnosis than amyloid PET.

NEUROLOGY (2023)

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Article Public, Environmental & Occupational Health

Motivations of patients and their care partners for visiting a memory clinic. A qualitative study

Leonie N. C. Visser et al.

Summary: This study investigates the motivations of patients and care partners for visiting a memory clinic and whether these motivations are expressed in consultations. The findings show that many patients seek a cause for symptoms or confirmation/exclusion of a dementia diagnosis, and about a quarter of patients express different motivations during consultations compared to what they reported in the questionnaire. Therefore, it is important to encourage clinicians, patients, and care partners to discuss motivations for visiting the memory clinic as a way to personalize (diagnostic) care.

PATIENT EDUCATION AND COUNSELING (2023)

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Article Clinical Neurology

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

Ingrid S. S. Van Maurik et al.

Summary: This study aimed to investigate the impact of a more precise diagnosis through amyloid PET on institutionalization, mortality, and healthcare costs. Results showed that patients who underwent amyloid PET had a lower risk of institutionalization and mortality, as well as lower healthcare costs, compared to those who did not undergo PET.

ALZHEIMERS & DEMENTIA (2023)

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Article Clinical Neurology

Brain-derived tau: a novel blood-based biomarker for Alzheimer's disease-type neurodegeneration

Fernando Gonzalez-Ortiz et al.

Summary: Blood-based biomarkers for amyloid beta and phosphorylated tau show good diagnostic accuracies and agreements with their corresponding CSF and neuroimaging biomarkers, while the blood-based neurodegeneration marker neurofilament light is not specific to Alzheimer's disease. A newly developed blood-based assay for brain-derived tau has shown equivalent diagnostic performance as CSF total-tau, accurately distinguishing Alzheimer's disease from other neurodegenerative diseases.

BRAIN (2023)

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Editorial Material Pharmacology & Pharmacy

Blood-Based Alzheimer's Biomarkers

[Anonymous]

CLINICAL PHARMACOLOGY & THERAPEUTICS (2022)

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Article Public, Environmental & Occupational Health

The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma: A vignette-based experiment

Shana D. Stites et al.

Summary: The stigma of dementia spills over into preclinical AD, and the availability of treatment does not alter that stigma.

SOCIAL SCIENCE & MEDICINE (2022)

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Review Clinical Neurology

Considerations regarding a diagnosis of Alzheimer's disease before dementia: a systematic review

Jetske van der Schaar et al.

Summary: The study provides an overview of considerations regarding the disclosure of AD pathology before the onset of dementia, categorizing them into clinical, personal, and societal contexts. The literature on this topic is diverse and contradictory, with a focus on harmful effects.

ALZHEIMERS RESEARCH & THERAPY (2022)

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Article Ethics

Moral motivation regarding dementia risk testing among affected persons in Germany and Israel

Zumrut Alpinar-Sencan et al.

Summary: The study examines the moral motivations of individuals in accepting or rejecting predictive testing and early diagnosis, identifying four ethical categories. Cultural parallels are evident, with variations mainly observed in openness to suicide, skepticism about test validity, and emphasis on personal autonomy. The importance of counselling for life-planning issues and informing test candidates about test validity problems and test result ambiguity is emphasized.

JOURNAL OF MEDICAL ETHICS (2022)

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Article Biochemistry & Molecular Biology

Amyloid and tau PET-positive cognitively unimpaired individuals are at high risk for future cognitive decline

Rik Ossenkoppele et al.

Summary: Abnormal amyloid and tau PET in cognitively unimpaired individuals is strongly associated with short-term cognitive decline and subsequent development of dementia.

NATURE MEDICINE (2022)

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Article Neurosciences

The Clinical Use of Alzheimer's Disease Biomarkers in Patients with Mild Cognitive Impairment: A European Alzheimer's Disease Consortium Survey

Camilla Caprioglio et al.

Summary: This study investigated the clinical use of main AD biomarkers in patients with mild cognitive impairment (MCI) by surveying professionals of the European Alzheimer's Disease Consortium (EADC). The results showed that MTA is the most frequently used biomarker, while CSF is considered the most valuable biomarker in terms of additional diagnostic value.

JOURNAL OF ALZHEIMERS DISEASE (2022)

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Review Biochemistry & Molecular Biology

Disclosure of Genetic Risk Factors for Alzheimer's Disease to Cognitively Healthy Individuals-From Current Practice towards a Personalised Medicine Scenario

Samantha Galluzzi et al.

Summary: Alzheimer's disease is a genetically complex disorder with multiple risk loci, including the Apolipoprotein E gene. While genetic testing for AD susceptibility is not recommended for cognitively healthy adults, clinical trials and direct-to-consumer testing provide opportunities for individuals to learn about their genetic risk profile for AD.

BIOMEDICINES (2022)

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Article Clinical Neurology

Association of Elevated Amyloid and Tau Positron Emission Tomography Signal With Near-Term Development of Alzheimer Disease Symptoms in Older Adults Without Cognitive Impairment

Cherie Strikwerda-Brown et al.

Summary: The study confirmed the clinical value of NIA-AA biological research criteria in predicting whether older individuals with no cognitive impairment will develop AD symptoms in the near future, with most A+T+(N+) individuals developing AD symptoms within 2 to 3 years.

JAMA NEUROLOGY (2022)

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Review Clinical Neurology

Blood-based biomarkers for Alzheimer's disease: towards clinical implementation

Charlotte E. Teunissen et al.

Summary: Recent research suggests that blood-based biomarkers for Alzheimer's disease may become a reality, with consistent results across different cohorts. Additionally, other blood-based biomarkers can provide information about disease progression and treatment effects.

LANCET NEUROLOGY (2022)

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Article Geriatrics & Gerontology

Biomarker counseling, disclosure of diagnosis and follow-up in patients with mild cognitive impairment: A European Alzheimer's disease consortium survey

Kristian S. Frederiksen et al.

Summary: The survey revealed variability in clinical practices across European expert centers diagnosing patients with MCI, highlighting the need for better biomarker counseling and training to improve communication skills. Future initiatives should emphasize the importance of communicating preventive strategies and advance planning.

INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY (2021)

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Article Neurosciences

Views on Early Diagnosis of Alzheimer's Disease Among Dutch Physicians: A Qualitative Interview Study

Krista Tromp et al.

Summary: Most Dutch physicians interviewed in this qualitative study considered early AD diagnosis as early diagnosis of dementia, and most were against pursuing an early AD diagnosis in people with no or mild cognitive impairment. Six clusters of considerations influencing physicians' diagnostic decision-making were identified: preferences and characteristics of persons, test characteristics, impact on care, type of setting, disease concepts, and societal level issues. The discussion of a biomarker-based early diagnosis of AD widely held in the scientific field has not structurally entered clinical practice, as it does not align with Dutch physicians' views on providing good care for individuals with no, subjective, or mild cognitive impairment.

JOURNAL OF ALZHEIMERS DISEASE (2021)

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Review Clinical Neurology

Dementia risk communication. A user manual for Brain Health Services-part 3 of 6

Leonie N. C. Visser et al.

Summary: As evidence suggests dementia incidence can be reduced through prevention programs targeting risk factors, a new generation of brain health services is envisioned to accelerate the implementation of such programs. Specifically, risk communication plays a crucial role in enabling individuals at risk to make informed decisions and take action to protect themselves. However, communication about dementia risk is complex and challenging, highlighting the need for further research to develop effective communication strategies.

ALZHEIMERS RESEARCH & THERAPY (2021)

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Article Geriatrics & Gerontology

Family members' perspectives on learning cognitively unimpaired older adults' amyloid-β PET scan results

Emily A. Largent et al.

Summary: The study found that most participants understood and valued the AD dementia risk information they received. Positive risk information elicited feelings of happiness and relief, while negative information led to disappointment and increased awareness of cognitive changes.

JOURNAL OF THE AMERICAN GERIATRICS SOCIETY (2021)

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Article Clinical Neurology

Predicting Symptom Onset in Sporadic Alzheimer Disease With Amyloid PET

Suzanne E. Schindler et al.

Summary: The study found that the tipping point in amyloid accumulation in the brain is strongly correlated with the age of symptom onset in Alzheimer's disease. By estimating the age at which an individual reaches this tipping point, the age of symptom onset can be predicted accurately.

NEUROLOGY (2021)

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Article Clinical Neurology

Reasons for undergoing amyloid imaging among cognitively unimpaired older adults

Mary M. Ryan et al.

Summary: Altruism and contribution to research were found to be the main motivations for older adults to participate in preclinical AD clinical trials. Participants with elevated amyloid showed higher perceived risk before result disclosure compared to those without elevated amyloid. After disclosure, participants with elevated amyloid demonstrated less change in perceived risk but greater changes in altruism and planning categories.

ANNALS OF CLINICAL AND TRANSLATIONAL NEUROLOGY (2021)

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Article Ethics

'That would be dreadful': The ethical, legal, and social challenges of sharing your Alzheimer's disease biomarker and genetic testing results with others

Emily A. Largent et al.

Summary: Ongoing large clinical trials are aiming to discover therapies to delay or prevent dementia caused by Alzheimer's disease, raising the possibility of widespread adoption of biomarker and genetic testing for cognitively unimpaired individuals in the future. However, concerns such as stigma and discrimination when sharing these test results highlight the need for additional legal protections and policy changes.

JOURNAL OF LAW AND THE BIOSCIENCES (2021)

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Article Gerontology

The Framing of Alzheimer's Disease: Differences Between Scientific and Lay Literature and Their Ethical Implications

Marthe Smedinga et al.

Summary: The meaning of Alzheimer's disease (AD) is changing in research, now referring to a pathophysiological process, while in lay literature it is understood as a form of dementia. These different understandings may lead to misunderstandings, especially research framings implying that those with AD biomarkers will inevitably develop dementia. Adoption of the research understanding of AD in clinical practice will have normative implications for priority setting in healthcare.

GERONTOLOGIST (2021)

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Article Geriatrics & Gerontology

Disclosure of Amyloid Status for Risk of Alzheimer Disease to Cognitively Normal Research Participants With Subjective Cognitive Decline: A Longitudinal Study

Taisei Wake et al.

AMERICAN JOURNAL OF ALZHEIMERS DISEASE AND OTHER DEMENTIAS (2020)

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Article Multidisciplinary Sciences

Cognitively unimpaired adults' reactions to disclosure of amyloid PET scan results

Emily A. Largent et al.

PLOS ONE (2020)

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Article Clinical Neurology

Practices and opinions about disclosure of the diagnosis of Alzheimer's disease to patients with MCI or dementia: a survey among Belgian medical experts in the field of dementia

Eric Mormont et al.

ACTA NEUROLOGICA BELGICA (2020)

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Article Clinical Neurology

Short-term Psychological Outcomes of Disclosing Amyloid Imaging Results to Research Participants Who Do Not Have Cognitive Impairment

Joshua D. Grill et al.

JAMA NEUROLOGY (2020)

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Article Ethics

Stakeholders' Views on Early Diagnosis for Alzheimer's Disease, Clinical Trial Participation and Amyloid PET Disclosure: A Focus Group Study

Gwendolien Vanderschaeghe et al.

JOURNAL OF BIOETHICAL INQUIRY (2019)

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Article Clinical Neurology

Patient Stakeholder Versus Physician Preferences Regarding Amyloid PET Testing

Melissa J. Armstrong et al.

ALZHEIMER DISEASE & ASSOCIATED DISORDERS (2019)

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Review Clinical Neurology

A brief history of Alzheimer disease Multiple meanings separated by a common name

David S. Knopman et al.

NEUROLOGY (2019)

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Letter Clinical Neurology

Attitudes Toward Physician-Assisted Death From Individuals Who Learn They Have an Alzheimer Disease Biomarker

Emily A. Largent et al.

JAMA NEUROLOGY (2019)

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Review Neurosciences

Research Use of Ecological Momentary Assessment for Adverse Event Monitoring Following Amyloid-β Results Disclosure

Meghan K. Mattos et al.

JOURNAL OF ALZHEIMERS DISEASE (2019)

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Article Clinical Neurology

Use of mild cognitive impairment and prodromal AD/MCI due to AD in clinical care: a European survey

Daniela Bertens et al.

ALZHEIMERS RESEARCH & THERAPY (2019)

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Review Clinical Neurology

Clinical implications of APOE genotyping for late-onset Alzheimer's disease (LOAD) risk estimation: a review of the literature

Victoria S. Marshe et al.

JOURNAL OF NEURAL TRANSMISSION (2019)

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NIA-AA Research Framework: Toward a biological definition of Alzheimer's disease

Clifford R. Jack et al.

ALZHEIMERS & DEMENTIA (2018)

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Prediction and Early Detection of Alzheimer's Dementia: Professional Disclosure Practices and Ethical Attitudes

Mark Schweda et al.

JOURNAL OF ALZHEIMERS DISEASE (2018)

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Review Neurosciences

Perspectives on Communicating Biomarker-Based Assessments of Alzheimer's Disease to Cognitively Healthy Individuals

Richard Milne et al.

JOURNAL OF ALZHEIMERS DISEASE (2018)

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Review Ethics

Review of the Ethical Issues of a Biomarker-Based Diagnoses in the Early Stage of Alzheimer's Disease

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JOURNAL OF BIOETHICAL INQUIRY (2018)

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Article Clinical Neurology

Comprehension of an Elevated Amyloid Positron Emission Tomography Biomarker Result by Cognitively Normal Older Adults

Jessica Mozersky et al.

JAMA NEUROLOGY (2018)

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Eline M. Bunnik et al.

JOURNAL OF MEDICAL ETHICS (2018)

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Ethical Arguments Concerning the Use of Alzheimer's Disease Biomarkers in Individuals with No or Mild Cognitive Impairment: A Systematic Review and Framework for Discussion

Marthe Smedinga et al.

JOURNAL OF ALZHEIMERS DISEASE (2018)

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At, with and beyond risk: expectations of living with the possibility of future dementia

Richard Milne et al.

SOCIOLOGY OF HEALTH & ILLNESS (2018)

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RISK ANALYSIS (2017)

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Article Geriatrics & Gerontology

The biomarker-based diagnosis of Alzheimer's disease. 1-ethical and societal issues

Corinna Porteri et al.

NEUROBIOLOGY OF AGING (2017)

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Amnestic MCI Patients' Perspectives toward Disclosure of Amyloid PET Results in a Research Context

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NEUROETHICS (2017)

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Amnestic MCI patients' experiences after disclosure of their amyloid PET result in a research context

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Safety of disclosing amyloid status in cognitively normal older adults

Jeffrey M. Burns et al.

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Patient and caregiver reactions to clinical amyloid imaging

Joshua D. Grill et al.

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Preclinical Alzheimer's disease: Definition, natural history, and diagnostic criteria

Bruno Dubois et al.

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Disclosure of positron emission tomography amyloid imaging results: A preliminary study of safety and tolerability

Yen Ying Lim et al.

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ROBINS-I: a tool for assessing risk of bias in non-randomised studies of interventions

Jonathan A. C. Sterne et al.

BMJ-BRITISH MEDICAL JOURNAL (2016)

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Predictive Testing for Alzheimer's Disease Suicidal Ideation in Healthy Participants

Richard J. Caselli et al.

ALZHEIMER DISEASE & ASSOCIATED DISORDERS (2015)

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The relative contributions of disease label and disease prognosis to Alzheimer's stigma: A vignette-based experiment

Rebecca Johnson et al.

SOCIAL SCIENCE & MEDICINE (2015)

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Attitudes of Research Participants and the General Public Regarding Disclosure of Alzheimer Disease Research Results

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JAMA NEUROLOGY (2015)

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Before it is too late: professional responsibilities in late-onset Alzheimer's research and pre-symptomatic prediction

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Melanie B. Shulman et al.

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Would you want to know? Public attitudes on early diagnostic testing for Alzheimer's disease

Elizabeth M. Wikler et al.

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Toward defining the preclinical stages of Alzheimer's disease: Recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease

Reisa A. Sperling et al.

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Jason Karlawish

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Health behavior changes after genetic risk assessment for Alzheimer disease: The REVEAL Study

Serena Chao et al.

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Genetic testing for Alzheimer's disease and its impact on insurance purchasing behavior - Widespread genetic testing for Alzheimer's susceptibility could present dilemmas for long-term care insurance

CD Zick et al.

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Impact of DNA testing for early-onset familial Alzheimer disease and frontotemporal dementia

EJ Steinbart et al.

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