{"id":"https://openalex.org/W623275691","doi":null,"title":"At a crossroads in care: the experience of individuals with Down syndrome and dementia","display_name":"At a crossroads in care: the experience of individuals with Down syndrome and dementia","publication_year":2013,"publication_date":"2013-07-02","ids":{"openalex":"https://openalex.org/W623275691","mag":"623275691"},"language":"en","primary_location":{"id":"pmh:oai:era.ed.ac.uk:1842/9549","doi":null,"is_oa":true,"landing_page_url":"http://hdl.handle.net/1842/9549","pdf_url":"http://hdl.handle.net/1842/9549","source":{"id":"https://openalex.org/S7407055182","display_name":"ERA","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Thesis or Dissertation"},"volume":null,"type":"dissertation","is_traditional":true,"indexed_in":[],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"http://hdl.handle.net/1842/9549","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5088721807","display_name":"Karen Watchman","orcid":"https://orcid.org/0000-0003-0000-3589","observed_orcids":["https://orcid.org/0000-0003-0000-3589"]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Karen Watchman","raw_affiliation_strings":[],"raw_orcid":"https://orcid.org/0000-0003-0000-3589","affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":["https://openalex.org/A5088721807"],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":true,"cited_by_count":3,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11015","display_name":"Down syndrome and intellectual disability research","score":0.9926999807357788,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11015","display_name":"Down syndrome and intellectual disability research","score":0.9926999807357788,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10009","display_name":"Dementia and Cognitive Impairment Research","score":0.004800000227987766,"subfield":{"id":"https://openalex.org/subfields/2738","display_name":"Psychiatry and Mental health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":0.0010999999940395355,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/down-syndrome","display_name":"Down syndrome","score":0.9980000257492065},{"id":"https://openalex.org/keywords/dementia","display_name":"dementia","score":0.9909999966621399},{"id":"https://openalex.org/keywords/intellectual-disability","display_name":"intellectual disability","score":0.9039999842643738},{"id":"https://openalex.org/keywords/social-exclusion","display_name":"social exclusion","score":0.5950000286102295},{"id":"https://openalex.org/keywords/marginalization","display_name":"marginalization","score":0.9800000190734863},{"id":"https://openalex.org/keywords/person-centred-care","display_name":"person-centred care","score":0.8799999952316284},{"id":"https://openalex.org/keywords/communication-adaptation","display_name":"communication adaptation","score":0.5870000123977661},{"id":"https://openalex.org/keywords/lived-experience","display_name":"lived experience","score":0.5809999704360962}],"concepts":[{"id":"https://openalex.org/C2779483572","wikidata":"https://www.wikidata.org/wiki/Q83030","display_name":"Dementia","level":3,"score":0.7380229234695435},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.44979217648506165},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.4412135183811188},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.4083343744277954},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.33768582344055176},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.12686458230018616},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.11488118767738342}],"mesh":[],"locations_count":2,"locations":[{"id":"pmh:oai:era.ed.ac.uk:1842/9549","doi":null,"is_oa":true,"landing_page_url":"http://hdl.handle.net/1842/9549","pdf_url":"http://hdl.handle.net/1842/9549","source":{"id":"https://openalex.org/S7407055182","display_name":"ERA","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Thesis or Dissertation"},{"id":"mag:623275691","doi":null,"is_oa":false,"landing_page_url":"https://era.ed.ac.uk/handle/1842/9549","pdf_url":null,"source":null,"license":null,"license_id":null,"version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":null}],"best_oa_location":{"id":"pmh:oai:era.ed.ac.uk:1842/9549","doi":null,"is_oa":true,"landing_page_url":"http://hdl.handle.net/1842/9549","pdf_url":"http://hdl.handle.net/1842/9549","source":{"id":"https://openalex.org/S7407055182","display_name":"ERA","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"Thesis or Dissertation"},"sustainable_development_goals":[{"score":0.9476000070571899,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"},{"score":0.5676000118255615,"display_name":"Reduced inequalities","id":"https://metadata.un.org/sdg/10"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W623275691.pdf","grobid_xml":"https://content.openalex.org/works/W623275691.grobid-xml"},"referenced_works_count":117,"referenced_works":["https://openalex.org/W584553775","https://openalex.org/W600989484","https://openalex.org/W603307255","https://openalex.org/W612944767","https://openalex.org/W623574884","https://openalex.org/W655601923","https://openalex.org/W1259766148","https://openalex.org/W1487931991","https://openalex.org/W1493624557","https://openalex.org/W1496698723","https://openalex.org/W1504084385","https://openalex.org/W1510426010","https://openalex.org/W1513088263","https://openalex.org/W1522899536","https://openalex.org/W1535946105","https://openalex.org/W1548478006","https://openalex.org/W1562337313","https://openalex.org/W1593602228","https://openalex.org/W1602574693","https://openalex.org/W1620079586","https://openalex.org/W1928065183","https://openalex.org/W1932380070","https://openalex.org/W1964240297","https://openalex.org/W1964262028","https://openalex.org/W1965268361","https://openalex.org/W1965347472","https://openalex.org/W1965944695","https://openalex.org/W1972373618","https://openalex.org/W1972558894","https://openalex.org/W1975347221","https://openalex.org/W1978255987","https://openalex.org/W1978524589","https://openalex.org/W1984257069","https://openalex.org/W1988164777","https://openalex.org/W1992629242","https://openalex.org/W1994241995","https://openalex.org/W1997219892","https://openalex.org/W1999681417","https://openalex.org/W2005174794","https://openalex.org/W2005430347","https://openalex.org/W2005483613","https://openalex.org/W2005808489","https://openalex.org/W2007705187","https://openalex.org/W2008305855","https://openalex.org/W2009196937","https://openalex.org/W2011633342","https://openalex.org/W2011843009","https://openalex.org/W2012473083","https://openalex.org/W2022583237","https://openalex.org/W2024233263","https://openalex.org/W2024346000","https://openalex.org/W2029270528","https://openalex.org/W2030105313","https://openalex.org/W2030702569","https://openalex.org/W2032990020","https://openalex.org/W2033287734","https://openalex.org/W2037687914","https://openalex.org/W2044043110","https://openalex.org/W2044669932","https://openalex.org/W2046195043","https://openalex.org/W2054131038","https://openalex.org/W2057178901","https://openalex.org/W2061192983","https://openalex.org/W2063282398","https://openalex.org/W2064168193","https://openalex.org/W2064468954","https://openalex.org/W2071077957","https://openalex.org/W2078731083","https://openalex.org/W2078879257","https://openalex.org/W2079220731","https://openalex.org/W2084097733","https://openalex.org/W2093030710","https://openalex.org/W2094024511","https://openalex.org/W2098676436","https://openalex.org/W2100395452","https://openalex.org/W2101710078","https://openalex.org/W2106478370","https://openalex.org/W2110325416","https://openalex.org/W2111362011","https://openalex.org/W2114625532","https://openalex.org/W2115365658","https://openalex.org/W2117006445","https://openalex.org/W2118307611","https://openalex.org/W2121125168","https://openalex.org/W2121441864","https://openalex.org/W2121951659","https://openalex.org/W2128053864","https://openalex.org/W2129262809","https://openalex.org/W2129609018","https://openalex.org/W2133160056","https://openalex.org/W2134353193","https://openalex.org/W2135634328","https://openalex.org/W2136086346","https://openalex.org/W2136183068","https://openalex.org/W2138206404","https://openalex.org/W2140832189","https://openalex.org/W2146203034","https://openalex.org/W2148288057","https://openalex.org/W2149623334","https://openalex.org/W2150374398","https://openalex.org/W2158316906","https://openalex.org/W2160773500","https://openalex.org/W2160853337","https://openalex.org/W2160939081","https://openalex.org/W2161601040","https://openalex.org/W2162339035","https://openalex.org/W2162370900","https://openalex.org/W2170541128","https://openalex.org/W2170690183","https://openalex.org/W2171724249","https://openalex.org/W2331455592","https://openalex.org/W2500200825","https://openalex.org/W2500845592","https://openalex.org/W2598007322","https://openalex.org/W2955507426","https://openalex.org/W2975247854","https://openalex.org/W4245408774"],"related_works":["https://openalex.org/W1923807056","https://openalex.org/W2598339415","https://openalex.org/W2462524271","https://openalex.org/W2784336736","https://openalex.org/W1895941720","https://openalex.org/W2317330684","https://openalex.org/W285717151","https://openalex.org/W3112800105","https://openalex.org/W7212273580","https://openalex.org/W2055627302"],"abstract_inverted_index":{"The":[0,117,146],"awareness":[1,129],"that":[2,43,96,154,170,272,358,380],"people":[3,37,45,97,142,277],"with":[4,38,46,98,143,161,278,287,341,382],"Down":[5,39,89,99,144,162,279,342],"syndrome":[6,40,90,100,163,280,343],"are":[7,101,186],"at":[8,12,284],"risk":[9,386],"of":[10,36,44,51,71,84,107,113,121,130,159,174,183,193,211,216,223,228,230,232,241,265,268,290,316,323,387],"dementia":[11,282,298,337,345],"a":[13,26,67,105,181,190,224,248,252,285,324,376],"younger":[14],"age,":[15],"even":[16],"in":[17,57,218,349,361],"their":[18,114,255,359],"forties":[19],"or":[20,234],"fifties,":[21],"brings":[22,381],"to":[23,110,197,220,237,244,250,308,312,319,374],"the":[24,34,64,78,82,128,137,157,172,212,221,239,266,321],"fore":[25],"group":[27,325,372],"previously":[28,326],"excluded":[29,327],"from":[30,208,328],"research.":[31],"Literature":[32],"documents":[33],"experiences":[35,53],"and,":[41],"separately,":[42],"dementia.":[47,92,165,184,388],"This":[48],"includes":[49],"knowledge":[50,80],"individual":[52],"through":[54],"self-advocacy,":[55],"inclusion":[56,322],"service":[58,350],"development,":[59],"policy":[60],"and":[61,63,91,132,164,177,262,274,281,297,314,333,344,352],"research,":[62,329],"drive":[65],"for":[66,276],"more":[68,148],"person-centred":[69],"way":[70],"providing":[72],"support.":[73],"We":[74],"do":[75],"not":[76,346,364],"have":[77,87,305],"same":[79],"about":[81],"experience":[83,158,217],"individuals":[85,160,340],"who":[86],"both":[88,209,331],"Research":[93],"literature":[94],"suggests":[95],"already":[102],"marginalised":[103],"before":[104],"diagnosis":[106,182],"dementia,":[108],"due":[109],"society\u2019s":[111],"interpretation":[112],"intellectual":[115,294],"disability.":[116],"first":[118],"quantitative":[119],"stage":[120,151],"this":[122,371],"longitudinal,":[123],"mixed":[124],"method":[125],"study":[126],"demonstrates":[127],"carers":[131],"actions":[133],"taken":[134],"post-diagnosis,":[135],"highlighting":[136],"social":[138,176,246],"exclusion":[139],"experienced":[140],"by":[141,202,254],"syndrome.":[145],"second":[147],"substantive,":[149],"qualitative":[150],"considers":[152],"factors":[153,169],"impact":[155,267],"on":[156,189],"My":[166],"observation":[167],"identifies":[168],"highlight":[171],"process":[173],"further":[175],"cultural":[178],"marginalisation":[179],"after":[180],"Findings":[185],"initially":[187],"based":[188],"thematic":[191],"analysis":[192],"my":[194,263,310],"transcribed":[195],"data":[196,317],"develop":[198],"case":[199,204],"studies,":[200],"followed":[201],"cross":[203],"analysis.":[205],"Emerging":[206],"issues":[207],"stages":[210],"research":[213,362],"suggest":[214,271],"commonality":[215],"relation":[219],"lack":[222,227],"shared":[225,291],"diagnosis,":[226],"recognition":[229],"sense":[231],"Self":[233],"identity,":[235],"failure":[236],"recognise":[238],"importance":[240],"adapting":[242],"communication":[243],"enable":[245,320],"interaction,":[247],"readiness":[249],"define":[251],"person":[253],"situation":[256],"rather":[257],"than":[258],"as":[259,336,370],"an":[260,288,384],"individual,":[261],"observations":[264],"staff.":[269],"I":[270,300,304],"care":[273],"support":[275],"is":[283,363,368],"crossroads,":[286],"absence":[289],"learning":[292],"between":[293],"disability":[295],"services":[296],"services.":[299],"demonstrate":[301],"how":[302],"far":[303],"been":[306,356],"able":[307],"synthesise":[309],"approach":[311],"methodology":[313],"methods":[315],"collection":[318],"incorporating":[330],"verbal":[332],"non-verbal":[334],"exchanges":[335],"progressed.":[338],"Despite":[339],"being":[347],"visible":[348],"development":[351],"policy,":[353],"it":[354,367,383],"has":[355],"evidenced":[357],"participation":[360],"only":[365],"possible,":[366],"essential,":[369],"continues":[373],"enjoy":[375],"longer":[377],"life":[378],"expectancy":[379],"associated":[385]},"counts_by_year":[{"year":2025,"cited_by_count":1},{"year":2023,"cited_by_count":1},{"year":2019,"cited_by_count":1}],"updated_date":"2026-10-12T09:40:04.860316","created_date":"2016-06-24T00:00:00"}