{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,7]],"date-time":"2026-06-07T01:00:48Z","timestamp":1780794048624,"version":"3.54.1"},"reference-count":32,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2024,7,5]],"date-time":"2024-07-05T00:00:00Z","timestamp":1720137600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2024,7,5]],"date-time":"2024-07-05T00:00:00Z","timestamp":1720137600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt C"],"published-print":{"date-parts":[[2024,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:label\/>\n                    <jats:p>Adults with down syndrome (DS) have a lifetime dementia risk in excess of 95%, with a median age of onset of 55\u2009years, due to trisomy 21. Co\u2010occurring Alzheimer's disease (AD) has increased morbidity and mortality, and it is now recommended to screen for AD in all adults with DS beginning at 40\u2009years of age. In this manuscript, we present two clinical cases of adults with DS who developed AD summarizing their medical histories, presenting symptoms, path to diagnosis and psychosocial aspects of care collected from retrospective chart review with caregiver consent. These two cases were chosen due to their complexity and interwoven nature of the medical and psychosocial aspects, and highlight the complexity and nuance of caring for patients with DS and AD.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/ajmg.c.32098","type":"journal-article","created":{"date-parts":[[2024,7,5]],"date-time":"2024-07-05T10:47:57Z","timestamp":1720176477000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Practicalities (and real\u2010life experiences) of dementia in adults with Down syndrome"],"prefix":"10.1002","volume":"196","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-0808-5633","authenticated-orcid":false,"given":"Ayesha","family":"Harisinghani","sequence":"first","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Clorinda","family":"Cottrell","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen","family":"Donelan","sequence":"additional","affiliation":[{"name":"The Mongan Institute Survey Research Unit, MGH  Boston Massachusetts USA"},{"name":"Heller School for Social Policy and Management Brandeis University  Waltham Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alice D.","family":"Lam","sequence":"additional","affiliation":[{"name":"Department of Neurology Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret","family":"Pulsifer","sequence":"additional","affiliation":[{"name":"Psychology Assessment Center Massachusetts General Hospital  Boston Massachusetts USA"},{"name":"Department of Psychiatry Harvard Medical School  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4172-0288","authenticated-orcid":false,"given":"Stephanie L.","family":"Santoro","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,7,5]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp2110468"},{"key":"e_1_2_9_3_1","unstructured":"Alzheimer's Association.2024.Alzheimer's Association \u2010 Education programs. Accessed April 2 2024.https:\/\/www.alz.org\/manh\/helping_you\/community_family_education"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41572-019-0143-7"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1080\/10673220801929786"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2022-057010"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejmg.2022.104550"},{"key":"e_1_2_9_8_1","unstructured":"Centers for Disease Control and Prevention. (2023).Alzheimer's Disease and Healthy Aging Program. About Dementia. Accessed June 4 2024.https:\/\/www.cdc.gov\/aging\/alzheimers-disease-dementia\/about-dementia.html#:~:text=risk%20for%20dementia%3F- Age of%2065%20years%20and%20older"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2016.127"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.1990.00530030029011"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(24)00478-1"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.3233\/JAD-215234"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jalz.2014.10.007"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.3233\/trd-200090"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1097\/YCO.0000000000000307"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp2002140"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2022.12910"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMe2103722"},{"key":"e_1_2_9_19_1","volume-title":"Mental wellness in adults with Down syndrome: A guide to emotional and behavioral strengths and challenges","author":"McGuire D. E.","year":"2006"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.mayocp.2013.04.024"},{"key":"e_1_2_9_21_1","unstructured":"National Down Syndrome Society. (2024).National Down Syndrome Society \u2010 Publications. Accessed April 2 2024.https:\/\/ndss.org\/publications"},{"key":"e_1_2_9_22_1","unstructured":"National Task Group on Intellectual Disabilities and Dementia Practices.2024.National Task Group on Intellectual Disabilities and Dementia Practices \u2010 Family support.https:\/\/www.the-ntg.org\/family-caregivers"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2003.12.002"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2013.06.013"},{"key":"e_1_2_9_25_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2023.22924"},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1352\/1944-7558-127.3.194"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12849"},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.1002\/alz.12112"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13195-019-0477-0"},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.1353\/aad.2012.1352"},{"key":"e_1_2_9_31_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2020.17024"},{"key":"e_1_2_9_32_1","doi-asserted-by":"publisher","DOI":"10.3758\/s13415-022-01013-z"},{"key":"e_1_2_9_33_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(02)08092-3"}],"container-title":["American Journal of Medical Genetics Part C: Seminars in Medical Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.c.32098","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ajmg.c.32098","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.c.32098","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,3,8]],"date-time":"2026-03-08T13:44:37Z","timestamp":1772977477000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.c.32098"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,7,5]]},"references-count":32,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2024,12]]}},"alternative-id":["10.1002\/ajmg.c.32098"],"URL":"https:\/\/doi.org\/10.1002\/ajmg.c.32098","archive":["Portico"],"relation":{},"ISSN":["1552-4868","1552-4876"],"issn-type":[{"value":"1552-4868","type":"print"},{"value":"1552-4876","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,7,5]]},"assertion":[{"value":"2024-04-30","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-06-15","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-07-05","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e32098"}}