{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,10]],"date-time":"2026-02-10T18:31:13Z","timestamp":1770748273354,"version":"3.49.0"},"reference-count":92,"publisher":"Cambridge University Press (CUP)","issue":"11","license":[{"start":{"date-parts":[[2023,2,3]],"date-time":"2023-02-03T00:00:00Z","timestamp":1675382400000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000377","name":"Dunhill Medical Trust","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000377","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Ageing and Society"],"published-print":{"date-parts":[[2024,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Relationships and marriages between couples with intellectual disability are to be celebrated, as is the longer life expectancy now enjoyed by many with intellectual disability. However, dementia disproportionately affects people with intellectual disability, especially people with Down's syndrome. Research into experiences of couples without intellectual disability who are affected by dementia suggests that a relational perspective provides health and social care professionals with information to support the wellbeing of both partners. This dyadic perspective is missing for couples with an intellectual disability where one partner has dementia. There is currently no evidence base informing how each partner may best be supported. This scoping review, with three separate searches, aims to address this gap. The first search sought to establish if any studies had explored the experiences of couples with intellectual disability where one partner has dementia. After determining that no studies have been published to date, the review explores what is known about relationships in the context of dementia (N = 8) and in the context of intellectual disability (N = 10), in second and third searches. Different ways to approach care and support in relationships among partners, staff and other family members were identified and it was evident that support could act as a facilitator as well as a barrier to people and their relationships. While the lives of couples affected by dementia appeared to remain largely private, couples with intellectual disability had a high involvement of staff and family members in their life. Potential implications for future research with couples with intellectual disability affected by dementia are discussed, highlighting the importance of exploring how couples navigate emotional complexities and changes in their relationship, while understanding that the context in which the lives of people with intellectual disability take place and relationships happen is different.<\/jats:p>","DOI":"10.1017\/s0144686x22001416","type":"journal-article","created":{"date-parts":[[2023,2,3]],"date-time":"2023-02-03T08:27:24Z","timestamp":1675412844000},"page":"2530-2569","source":"Crossref","is-referenced-by-count":1,"title":["Couples with intellectual disability where one partner has dementia \u2013 a scoping review exploring relationships in the context of dementia and intellectual disability"],"prefix":"10.1017","volume":"44","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5593-5899","authenticated-orcid":false,"given":"Paula","family":"Jacobs","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0000-3589","authenticated-orcid":false,"given":"Karen","family":"Watchman","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0782-9746","authenticated-orcid":false,"given":"Heather","family":"Wilkinson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9900-552X","authenticated-orcid":false,"given":"Louise","family":"Hoyle","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2023,2,3]]},"reference":[{"key":"S0144686X22001416_ref56","doi-asserted-by":"publisher","DOI":"10.1111\/jppi.12329"},{"key":"S0144686X22001416_ref61","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12417"},{"key":"S0144686X22001416_ref64","doi-asserted-by":"publisher","DOI":"10.1002\/jrsm.1123"},{"key":"S0144686X22001416_ref13","doi-asserted-by":"publisher","DOI":"10.1111\/bld.12210"},{"key":"S0144686X22001416_ref84","unstructured":"United Nations (2007) Convention on the Rights of Persons with Disabilities. Available at https:\/\/www.refworld.org\/docid\/45f973632.html."},{"key":"S0144686X22001416_ref33","doi-asserted-by":"publisher","DOI":"10.1177\/1471301207081571"},{"key":"S0144686X22001416_ref52","doi-asserted-by":"publisher","DOI":"10.1177\/1471301214555542"},{"key":"S0144686X22001416_ref24","doi-asserted-by":"publisher","DOI":"10.1177\/1471301212473882"},{"key":"S0144686X22001416_ref73","first-page":"22","article-title":"Bringing relationships into the heart of dementia care","volume":"12","author":"Sheard","year":"2004","journal-title":"Journal of Dementia Care"},{"key":"S0144686X22001416_ref51","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12355"},{"key":"S0144686X22001416_ref63","doi-asserted-by":"publisher","DOI":"10.1097\/XEB.0000000000000050"},{"key":"S0144686X22001416_ref12","doi-asserted-by":"publisher","DOI":"10.3109\/13668250.2011.645473"},{"key":"S0144686X22001416_ref77","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2013.02.021"},{"key":"S0144686X22001416_ref35","doi-asserted-by":"publisher","DOI":"10.1080\/07317115.2017.1380102"},{"key":"S0144686X22001416_ref5","doi-asserted-by":"publisher","DOI":"10.1111\/bld.12177"},{"key":"S0144686X22001416_ref71","volume-title":"Ethics of Care: Critical Advances in International Perspective","author":"Schormans","year":"2015"},{"key":"S0144686X22001416_ref4","first-page":"31","volume-title":"Ethics of Care: Critical Advances in International Perspective","author":"Barnes","year":"2015"},{"key":"S0144686X22001416_ref1","doi-asserted-by":"publisher","DOI":"10.1525\/srsp.2007.4.1.27"},{"key":"S0144686X22001416_ref37","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12048"},{"key":"S0144686X22001416_ref49","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12893"},{"key":"S0144686X22001416_ref43","doi-asserted-by":"publisher","DOI":"10.1080\/10349120701488749"},{"key":"S0144686X22001416_ref68","doi-asserted-by":"publisher","DOI":"10.1080\/20473869.2019.1701786"},{"key":"S0144686X22001416_ref34","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(13)62026-7"},{"key":"S0144686X22001416_ref19","unstructured":"Down's Syndrome Association (2018) Dementia \u2013 Alzheimer's Disease. Available at https:\/\/www.downs-syndrome.org.uk\/wp-content\/uploads\/2020\/06\/2018.09.Alzheimers-Disease_DSMIG.pdf."},{"key":"S0144686X22001416_ref46","doi-asserted-by":"publisher","DOI":"10.1177\/1471301207075633"},{"key":"S0144686X22001416_ref26","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12881"},{"key":"S0144686X22001416_ref20","first-page":"23","article-title":"Pleasure and dementia. On becoming an appreciating subject","volume":"36","author":"Driessen","year":"2018","journal-title":"Cambridge Journal of Anthropology"},{"key":"S0144686X22001416_ref29","doi-asserted-by":"publisher","DOI":"10.1177\/1471301215625657"},{"key":"S0144686X22001416_ref25","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-3156.2007.00473.x"},{"key":"S0144686X22001416_ref45","doi-asserted-by":"publisher","DOI":"10.1111\/hsc.12386"},{"key":"S0144686X22001416_ref70","doi-asserted-by":"publisher","DOI":"10.3389\/fnins.2022.908413"},{"key":"S0144686X22001416_ref27","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-3156.2011.00714.x"},{"key":"S0144686X22001416_ref10","doi-asserted-by":"publisher","DOI":"10.1093\/gerona\/57.7.M470"},{"key":"S0144686X22001416_ref40","doi-asserted-by":"publisher","DOI":"10.1111\/hsc.12804"},{"key":"S0144686X22001416_ref72","volume-title":"The Keys to Life: Improving Quality of Life for People with Learning Disabilities","year":"2013"},{"key":"S0144686X22001416_ref76","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.14657"},{"key":"S0144686X22001416_ref9","doi-asserted-by":"publisher","DOI":"10.1177\/1471301217737653"},{"key":"S0144686X22001416_ref69","doi-asserted-by":"publisher","DOI":"10.4324\/9781315638713"},{"key":"S0144686X22001416_ref16","doi-asserted-by":"publisher","DOI":"10.1186\/s12875-015-0329-3"},{"key":"S0144686X22001416_ref79","volume-title":"People with Learning Disabilities in Scotland: 2017 Health Needs Assessment Update Report","author":"Truesdale","year":"2017"},{"key":"S0144686X22001416_ref83","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12026"},{"key":"S0144686X22001416_ref7","doi-asserted-by":"publisher","DOI":"10.1080\/00909880216576"},{"key":"S0144686X22001416_ref39","doi-asserted-by":"publisher","DOI":"10.1002\/casp.2202"},{"key":"S0144686X22001416_ref65","doi-asserted-by":"publisher","DOI":"10.1177\/1074840713486727"},{"key":"S0144686X22001416_ref90","doi-asserted-by":"publisher","DOI":"10.1177\/1049732319901127"},{"key":"S0144686X22001416_ref31","doi-asserted-by":"publisher","DOI":"10.1300\/J200v02n04_02"},{"key":"S0144686X22001416_ref47","first-page":"647","article-title":"Experiences and perceptions of spousal\/partner caregivers providing care for community-dwelling adults with dementia: a qualitative systematic review","volume":"18","author":"MacDonald","year":"2020","journal-title":"JBI Evidence Synthesis"},{"key":"S0144686X22001416_ref81","doi-asserted-by":"publisher","DOI":"10.1177\/0269216311433476"},{"key":"S0144686X22001416_ref92","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12065"},{"key":"S0144686X22001416_ref22","volume-title":"Estimating Future Need for Adult Social Care for People with Learning Disabilities in England","author":"Emerson","year":"2008"},{"key":"S0144686X22001416_ref67","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610215002239"},{"key":"S0144686X22001416_ref28","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9515.2008.00617.x"},{"key":"S0144686X22001416_ref2","doi-asserted-by":"publisher","DOI":"10.1080\/1364557032000119616"},{"key":"S0144686X22001416_ref32","doi-asserted-by":"publisher","DOI":"10.1080\/13607860802534609"},{"key":"S0144686X22001416_ref42","volume-title":"Dementia Reconsidered: The Person Comes First","author":"Kitwood","year":"1997"},{"key":"S0144686X22001416_ref55","doi-asserted-by":"publisher","DOI":"10.1080\/01488376.2019.1648361"},{"key":"S0144686X22001416_ref86","unstructured":"Veritas Health Innovation (nd) Covidence Systematic Review Software. Available at www.covidence.org."},{"key":"S0144686X22001416_ref88","doi-asserted-by":"publisher","DOI":"10.1080\/02674649366780111"},{"key":"S0144686X22001416_ref30","first-page":"139","volume-title":"Working with Older People and Their Families. Key Issues in Policy and Practice","author":"Grant","year":"2001"},{"key":"S0144686X22001416_ref41","doi-asserted-by":"publisher","DOI":"10.1215\/08992363-13-3-557"},{"key":"S0144686X22001416_ref74","doi-asserted-by":"publisher","DOI":"10.1108\/QAOA-11-2018-0060"},{"key":"S0144686X22001416_ref87","doi-asserted-by":"publisher","DOI":"10.1080\/13607863.2015.1023769"},{"key":"S0144686X22001416_ref23","doi-asserted-by":"publisher","DOI":"10.1177\/1471301211418161"},{"key":"S0144686X22001416_ref44","doi-asserted-by":"publisher","DOI":"10.1080\/09687599.2012.758030"},{"key":"S0144686X22001416_ref3","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-3156.2012.00741.x"},{"key":"S0144686X22001416_ref50","doi-asserted-by":"publisher","DOI":"10.1080\/01634372.2011.593021"},{"key":"S0144686X22001416_ref60","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12774"},{"key":"S0144686X22001416_ref11","doi-asserted-by":"publisher","DOI":"10.1111\/hsc.12044"},{"key":"S0144686X22001416_ref91","volume-title":"Community Care in Perspective: Care, Control and Citizenship","author":"Welshman","year":"2006"},{"key":"S0144686X22001416_ref48","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12390"},{"key":"S0144686X22001416_ref38","doi-asserted-by":"publisher","DOI":"10.1111\/bld.12380"},{"key":"S0144686X22001416_ref53","doi-asserted-by":"publisher","DOI":"10.1177\/026101839101103302"},{"key":"S0144686X22001416_ref85","doi-asserted-by":"publisher","DOI":"10.16993\/sjdr.35"},{"key":"S0144686X22001416_ref8","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2018.2210"},{"key":"S0144686X22001416_ref66","doi-asserted-by":"publisher","DOI":"10.1111\/jan.14743"},{"key":"S0144686X22001416_ref75","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2288-11-15"},{"key":"S0144686X22001416_ref57","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12674"},{"key":"S0144686X22001416_ref54","doi-asserted-by":"publisher","DOI":"10.7748\/nop.2019.e1214"},{"key":"S0144686X22001416_ref78","doi-asserted-by":"publisher","DOI":"10.1186\/s12874-016-0116-4"},{"key":"S0144686X22001416_ref14","doi-asserted-by":"publisher","DOI":"10.1177\/1744629516638245"},{"key":"S0144686X22001416_ref80","doi-asserted-by":"publisher","DOI":"10.1111\/jppi.12380"},{"key":"S0144686X22001416_ref21","doi-asserted-by":"publisher","DOI":"10.1080\/13607863.2018.1433634"},{"key":"S0144686X22001416_ref36","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610217001806"},{"key":"S0144686X22001416_ref82","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12375"},{"key":"S0144686X22001416_ref17","doi-asserted-by":"publisher","DOI":"10.1002\/ddrr.1123"},{"key":"S0144686X22001416_ref59","doi-asserted-by":"crossref","DOI":"10.1525\/9780520927568","volume-title":"Starting at Home: Caring and social policy","author":"Noddings","year":"2002"},{"key":"S0144686X22001416_ref62","doi-asserted-by":"publisher","DOI":"10.1108\/AMHID-05-2013-0034"},{"key":"S0144686X22001416_ref89","doi-asserted-by":"publisher","DOI":"10.1111\/jppi.12167"},{"key":"S0144686X22001416_ref6","doi-asserted-by":"publisher","DOI":"10.1111\/bld.12320"},{"key":"S0144686X22001416_ref18","doi-asserted-by":"publisher","DOI":"10.1192\/bjp.139.6.494"},{"key":"S0144686X22001416_ref15","doi-asserted-by":"publisher","DOI":"10.1017\/S0033291796004655"},{"key":"S0144686X22001416_ref58","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12219"}],"container-title":["Ageing and Society"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S0144686X22001416","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,1,14]],"date-time":"2025-01-14T13:15:02Z","timestamp":1736860502000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S0144686X22001416\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,2,3]]},"references-count":92,"journal-issue":{"issue":"11","published-print":{"date-parts":[[2024,11]]}},"alternative-id":["S0144686X22001416"],"URL":"https:\/\/doi.org\/10.1017\/s0144686x22001416","relation":{},"ISSN":["0144-686X","1469-1779"],"issn-type":[{"value":"0144-686X","type":"print"},{"value":"1469-1779","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,2,3]]}}}