{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,15]],"date-time":"2026-02-15T12:00:52Z","timestamp":1771156852541,"version":"3.50.1"},"reference-count":23,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2025,9,12]],"date-time":"2025-09-12T00:00:00Z","timestamp":1757635200000},"content-version":"vor","delay-in-days":11,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2025,9,1]],"date-time":"2025-09-01T00:00:00Z","timestamp":1756684800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100000130","name":"National Center for Chronic Disease Prevention and Health Promotion","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000130","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004312","name":"Eli Lilly and Company","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004312","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100016608","name":"Rainwater Charitable Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100016608","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["alz-journals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Alzheimer's &amp;amp; Dementia"],"published-print":{"date-parts":[[2025,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>INTRODUCTION<\/jats:title>\n                    <jats:p>Diagnosing and staging Down syndrome\u2013associated Alzheimer's disease (DS\u2010AD) is hindered by the lack of standardized criteria, complicating clinical decision making, trial participation, and access to advanced therapies. This study aimed to explore perceptions of these issues.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>METHOD<\/jats:title>\n                    <jats:p>An international survey of 42 clinicians and researchers specializing in DS\u2010AD gathered perspectives on instruments, symptomatic staging, clinical practices, and research priorities.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS<\/jats:title>\n                    <jats:p>Respondents noted that key domains of impairment in mild cognitive impairment in Down syndrome and DS\u2010AD dementia included memory, executive functioning, personality, social behavior, attention, mood, and language. Among the 10 assessment tools evaluated, informant\u2010based interviews were noted as critical for individuals with severe intellectual disability (ID), while direct assessments were noted as useful for those with mild to moderate ID. Common diagnostic confounders like hypothyroidism and sleep disorders were identified.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>DISCUSSION<\/jats:title>\n                    <jats:p>Behavioral assessments provide a valuable function; however, future efforts should integrate behavioral assessments with biomarkers and develop standardized staging frameworks to improve diagnostic reliability, care planning, and treatment strategies for DS\u2010AD.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Highlights<\/jats:title>\n                    <jats:p>\n                      <jats:list list-type=\"bullet\">\n                        <jats:list-item>\n                          <jats:p>Personality, social behavior, language, mood\/affect, memory, executive functioning, and attention are recognized as key domains of impairment in both mild cognitive impairment in Down syndrome (MCI\u2010DS) and Down syndrome\u2013associated Alzheimer's disease (DS\u2010AD).<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Ten prominent informant and direct assessment tools were noted as appropriate for individuals with DS and mild to moderate intellectual disability (ID) for identifying both MCI\u2010DS and DS\u2010AD; however, for individuals with severe\/profound ID, there was less assurance of applicability.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Harmonizing recommended tools in a standardized list was identified as a strategy to promote consistency across clinical and research contexts.<\/jats:p>\n                        <\/jats:list-item>\n                      <\/jats:list>\n                    <\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/alz.70356","type":"journal-article","created":{"date-parts":[[2025,9,12]],"date-time":"2025-09-12T18:48:11Z","timestamp":1757702891000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Specialists\u2019 perceptions of clinical instruments, practices, and staging of DS\u2010AD: Results from an international survey"],"prefix":"10.1002","volume":"21","author":[{"given":"Hampus","family":"Hillerstrom","sequence":"first","affiliation":[{"name":"LuMind IDSC Foundation Woburn Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Amit","family":"Das","sequence":"additional","affiliation":[{"name":"LuMind IDSC Foundation Woburn Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1053-1748","authenticated-orcid":false,"given":"Matthew P.","family":"Janicki","sequence":"additional","affiliation":[{"name":"University of Illinois Chicago Chicago Illinois USA"},{"name":"National Task Group on Intellectual Disabilities and Dementia Practices Rockport Maine USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Natalia S.","family":"Rozas","sequence":"additional","affiliation":[{"name":"LuMind IDSC Foundation Woburn Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephanie L.","family":"Santoro","sequence":"additional","affiliation":[{"name":"Massachusetts General Research Institute Boston Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2025,9,12]]},"reference":[{"key":"e_1_2_7_2_1","unstructured":"CMS.Guiding an Improved Dementia Experience (GUIDE) Model.2024. Accessed November 20 2024.https:\/\/www.cms.gov\/priorities\/innovation\/innovation\u2010models\/guide"},{"key":"e_1_2_7_3_1","unstructured":"CMS.CMS announces new details of plan to cover new Alzheimer's drugs.2024. Accessed November 12 2024.https:\/\/www.cms.gov\/newsroom\/fact\u2010sheets\/cms\u2010announces\u2010new\u2010details\u2010plan\u2010cover\u2010new\u2010alzheimers\u2010drugs"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2023.22924"},{"key":"e_1_2_7_5_1","unstructured":"British Psychological Society\/Faculty for People with Intellectual Disabilities.Dementia and people with intellectual disabilities guidance on the assessment diagnosis interventions and support of people with intellectual disabilities who develop dementia(April2015). Accessed December 5 2024.https:\/\/cms.bps.org.uk\/sites\/default\/files\/2022\u201009\/Dementia%20and%20People%20with%20Intellectual%20Disabilities.pdf"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.dadm.2016.06.002"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.4172\/2161\u20100460.S7\u2010001"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/dad2.12075"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12441"},{"key":"e_1_2_7_10_1","volume-title":"Neuropsychological Assessments of Dementia in Down Syndrome and Intellectual Disabilities","author":"Prasher VP","year":"2008"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12901"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2013.08.013"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41591\u2010024\u201003340\u20109"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/alz.13859"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474\u20104422(21)00245\u20103"},{"key":"e_1_2_7_16_1","volume-title":"CAMDEX\u2010DS: The Cambridge Examination for Mental Disorders of Older People with Down's Syndrome and Others with Intellectual Disabilities","author":"Ball S","year":"2006"},{"key":"e_1_2_7_17_1","volume-title":"CAMDEX\u2010DS\u2010II: A Comprehensive Assessment for Dementia in People with Down Syndrome and Others with Intellectual Disabilities (2nd Edition) \u2013 Informant Questionnaire","author":"Beresford\u2010Webb J","year":"2021"},{"key":"e_1_2_7_18_1","volume-title":"Dementia Questionnaire for People with Learning Disabilities","author":"Eurlings H","year":"2006"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.1192\/bjp.bp.106.024984"},{"key":"e_1_2_7_20_1","first-page":"197","volume-title":"Neurological Assessments of Dementia in Down syndrome and Intellectual Disabilities","author":"Esralew L","year":"2017"},{"key":"e_1_2_7_21_1","doi-asserted-by":"publisher","DOI":"10.1007\/7854_2015_5001"},{"key":"e_1_2_7_22_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102788.1989.tb01467.x"},{"key":"e_1_2_7_23_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365\u20102788.2002.00417.x"},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474\u20104422(24)00490\u20103"}],"container-title":["Alzheimer's &amp; Dementia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/alz-journals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/alz.70356","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/alz-journals.onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/alz.70356","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/alz-journals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/alz.70356","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,2,15]],"date-time":"2026-02-15T11:07:27Z","timestamp":1771153647000},"score":1,"resource":{"primary":{"URL":"https:\/\/alz-journals.onlinelibrary.wiley.com\/doi\/10.1002\/alz.70356"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,9]]},"references-count":23,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2025,9]]}},"alternative-id":["10.1002\/alz.70356"],"URL":"https:\/\/doi.org\/10.1002\/alz.70356","archive":["Portico"],"relation":{},"ISSN":["1552-5260","1552-5279"],"issn-type":[{"value":"1552-5260","type":"print"},{"value":"1552-5279","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,9]]},"assertion":[{"value":"2025-01-29","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-05-15","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-09-12","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70356"}}