[{"id":"da-bn-late-diagnosis","kind":"bottleneck","name":"Late and uneven diagnosis","aka":[],"tldr":"Many people receive a dementia diagnosis late, or never receive a subtype. That blocks both care planning and trial entry.","summary":"Primary care time, fear, stigma, and limited memory-clinic capacity all delay a named diagnosis. Biomarker tests help only if someone is referred and the result will change care.","asOf":"2026-09-21","links":[{"label":"NIA","url":"https://www.nia.nih.gov/health/alzheimers-and-dementia"}],"tags":["dementia-atlas"],"related":[],"cancers":["dementia","alzheimers-disease"],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":[],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"stage":"prevention-detection","severity":"major","metrics":[{"label":"Public education source on delayed recognition","value":"See NIA public pages","source":"NIA","url":"https://www.nia.nih.gov/health/alzheimers-and-dementia"}],"causes":["Symptoms dismissed as normal ageing.","Specialist waiting lists.","Biomarker tests concentrated in academic centres."],"currentEfforts":["Public symptom-awareness campaigns.","Blood biomarker triage research."],"successLooksLike":"People who want an assessment can get a timely clinical diagnosis and, where it changes care, a subtype discussion."},{"id":"da-bn-trial-exclusion","kind":"bottleneck","name":"Trial populations that skip mixed disease","aka":[],"tldr":"Antibody trials largely enrolled people with biomarker-supported Alzheimer’s disease and excluded much mixed, vascular, and diverse disease.","summary":"When a person has mixed pathology, atrial fibrillation, or anticoagulation, the trial result may not apply. Inclusive protocols are a proposed fix, not current practice everywhere.","asOf":"2026-09-21","links":[{"label":"CLARITY AD registry","url":"https://clinicaltrials.gov/study/NCT03887455"}],"tags":["dementia-atlas"],"related":[],"cancers":["alzheimers-disease","mixed-dementia"],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":[],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"stage":"trials","severity":"major","metrics":[{"label":"Failure example on this atlas","value":"ENGAGE primary endpoint not met","source":"ClinicalTrials.gov NCT02477800","url":"https://clinicaltrials.gov/study/NCT02477800"}],"causes":["Strict amyloid and MRI criteria.","Under-enrolment of minoritised groups.","Exclusion of common comorbidities."],"currentEfforts":["Broader phase 4 and registry follow-up after approval."],"successLooksLike":"Label-relevant evidence includes the people who actually present to clinic."},{"id":"da-bn-caregiver-load","kind":"bottleneck","name":"Unpaid care as the hidden delivery system","aka":[],"tldr":"Most day-to-day dementia care is unpaid. Medicines and scans fail in practice if one person is carrying every task alone.","summary":"Respite, training, and a named navigator are delivery infrastructure. They are often treated as extras.","asOf":"2026-09-21","links":[{"label":"CDC caregiving","url":"https://www.cdc.gov/caregiving/index.html"}],"tags":["dementia-atlas"],"related":[],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":[],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"stage":"access-delivery","severity":"critical","metrics":[{"label":"Public caregiver resource","value":"Alzheimers.gov caregiver pages","source":"NIA / Alzheimers.gov","url":"https://www.alzheimers.gov/life-with-dementia/resources-caregivers"}],"causes":["Care work is unpaid and gendered.","Benefits are hard to find.","Clinics are organised around encounters, not households."],"currentEfforts":["Care-navigation models.","Carer assessments in some health systems."],"successLooksLike":"A care plan names backup people and respite before crisis."},{"id":"da-bn-subtype-misclassification","kind":"bottleneck","name":"Wrong-subtype treatment","aka":[],"tldr":"Lewy body, vascular, and frontotemporal dementia are still treated as if they were typical Alzheimer’s disease, which can add harm.","summary":"Antipsychotics in Lewy body disease, antibodies without amyloid confirmation, and cholinesterase inhibitors pushed in FTD are examples of map failures, not just knowledge gaps.","asOf":"2026-09-21","links":[{"label":"NICE NG97","url":"https://www.nice.org.uk/guidance/ng97"}],"tags":["dementia-atlas"],"related":[],"cancers":["dementia-with-lewy-bodies","frontotemporal-dementia","vascular-dementia"],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":[],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"stage":"biology","severity":"major","metrics":[],"causes":["Overlapping symptoms.","Limited access to specialist assessment.","Trial evidence dominated by Alzheimer’s disease."],"currentEfforts":["NICE NG97 pathway language.","Lewy body awareness materials."],"successLooksLike":"A medicine is offered only when the diagnosis and the label match, or the off-label use is explicit."}]