Karen Watchman, Paula Jacobs, Louise Boustead, Andrew Doyle, Lynn Doyle, Jan Murdoch, Jill Carson, Louise Hoyle, Heather Wilkinson
{"title":"\"我们该如何应对?一方被诊断患有痴呆症的智障夫妇。","authors":"Karen Watchman, Paula Jacobs, Louise Boustead, Andrew Doyle, Lynn Doyle, Jan Murdoch, Jill Carson, Louise Hoyle, Heather Wilkinson","doi":"10.1093/geront/gnae030","DOIUrl":null,"url":null,"abstract":"<p><strong>Background and objectives: </strong>People with intellectual disability are at increased risk of dementia at an earlier age. This is the first study to explore experiences of couples with an intellectual disability when one partner has dementia.</p><p><strong>Research design and methods: </strong>Four people with intellectual disability whose partner had dementia and one partner who had both an intellectual disability and dementia took part in narrative life story interviews. One of the interviews was conducted as a couple giving direct perspectives from 4 couples overall. Additionally, 13 semistructured interviews were conducted with 9 social care professionals and 4 family members. This provided perspectives of the relationships of a further 4 couples, which collectively led to data on 8 couples.</p><p><strong>Results: </strong>The emotional impact of a dementia diagnosis, planning for the future, and fear of separation was noted by couples with intellectual disability. Partners took on caring roles thus challenging views of being solely care-receivers. Families spoke of commitment and longevity in relationships, whilst social care staff highlighted how their own information needs changed recognizing the importance of intellectual disability and dementia-specific knowledge.</p><p><strong>Discussion and implications: </strong>Couples with intellectual disability continue to enjoy intimate relationships into later life and will face common conditions in older age including dementia. Those who provide support need to ensure that they are sensitive to the previous experience and life story of each couple and have specific knowledge of how dementia can affect people with intellectual disability.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":null,"pages":null},"PeriodicalIF":4.6000,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11127106/pdf/","citationCount":"0","resultStr":"{\"title\":\"\\\"How will we cope?\\\" Couples With Intellectual Disability Where One Partner Has a Diagnosis of Dementia.\",\"authors\":\"Karen Watchman, Paula Jacobs, Louise Boustead, Andrew Doyle, Lynn Doyle, Jan Murdoch, Jill Carson, Louise Hoyle, Heather Wilkinson\",\"doi\":\"10.1093/geront/gnae030\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background and objectives: </strong>People with intellectual disability are at increased risk of dementia at an earlier age. This is the first study to explore experiences of couples with an intellectual disability when one partner has dementia.</p><p><strong>Research design and methods: </strong>Four people with intellectual disability whose partner had dementia and one partner who had both an intellectual disability and dementia took part in narrative life story interviews. One of the interviews was conducted as a couple giving direct perspectives from 4 couples overall. Additionally, 13 semistructured interviews were conducted with 9 social care professionals and 4 family members. This provided perspectives of the relationships of a further 4 couples, which collectively led to data on 8 couples.</p><p><strong>Results: </strong>The emotional impact of a dementia diagnosis, planning for the future, and fear of separation was noted by couples with intellectual disability. Partners took on caring roles thus challenging views of being solely care-receivers. Families spoke of commitment and longevity in relationships, whilst social care staff highlighted how their own information needs changed recognizing the importance of intellectual disability and dementia-specific knowledge.</p><p><strong>Discussion and implications: </strong>Couples with intellectual disability continue to enjoy intimate relationships into later life and will face common conditions in older age including dementia. Those who provide support need to ensure that they are sensitive to the previous experience and life story of each couple and have specific knowledge of how dementia can affect people with intellectual disability.</p>\",\"PeriodicalId\":51347,\"journal\":{\"name\":\"Gerontologist\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":4.6000,\"publicationDate\":\"2024-06-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11127106/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Gerontologist\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1093/geront/gnae030\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"GERONTOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Gerontologist","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/geront/gnae030","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"GERONTOLOGY","Score":null,"Total":0}
"How will we cope?" Couples With Intellectual Disability Where One Partner Has a Diagnosis of Dementia.
Background and objectives: People with intellectual disability are at increased risk of dementia at an earlier age. This is the first study to explore experiences of couples with an intellectual disability when one partner has dementia.
Research design and methods: Four people with intellectual disability whose partner had dementia and one partner who had both an intellectual disability and dementia took part in narrative life story interviews. One of the interviews was conducted as a couple giving direct perspectives from 4 couples overall. Additionally, 13 semistructured interviews were conducted with 9 social care professionals and 4 family members. This provided perspectives of the relationships of a further 4 couples, which collectively led to data on 8 couples.
Results: The emotional impact of a dementia diagnosis, planning for the future, and fear of separation was noted by couples with intellectual disability. Partners took on caring roles thus challenging views of being solely care-receivers. Families spoke of commitment and longevity in relationships, whilst social care staff highlighted how their own information needs changed recognizing the importance of intellectual disability and dementia-specific knowledge.
Discussion and implications: Couples with intellectual disability continue to enjoy intimate relationships into later life and will face common conditions in older age including dementia. Those who provide support need to ensure that they are sensitive to the previous experience and life story of each couple and have specific knowledge of how dementia can affect people with intellectual disability.
期刊介绍:
The Gerontologist, published since 1961, is a bimonthly journal of The Gerontological Society of America that provides a multidisciplinary perspective on human aging by publishing research and analysis on applied social issues. It informs the broad community of disciplines and professions involved in understanding the aging process and providing care to older people. Articles should include a conceptual framework and testable hypotheses. Implications for policy or practice should be highlighted. The Gerontologist publishes quantitative and qualitative research and encourages manuscript submissions of various types including: research articles, intervention research, review articles, measurement articles, forums, and brief reports. Book and media reviews, International Spotlights, and award-winning lectures are commissioned by the editors.