Christine Carter, Moïse Roche, Elenyd Whitfield, Jessica Budgett, Sarah Morgan-Trimmer, Sedigheh Zabihi, Yvonne Birks, Fiona Walter, Mark Wilberforce, Jessica Jiang, Refah Ahmed, Wesley Dowridge, Charles R Marshall, Claudia Cooper
{"title":"痴呆症及时诊断机会均等(EQUATED):关于少数民族群体如何体验痴呆症早期症状并寻求帮助的定性研究","authors":"Christine Carter, Moïse Roche, Elenyd Whitfield, Jessica Budgett, Sarah Morgan-Trimmer, Sedigheh Zabihi, Yvonne Birks, Fiona Walter, Mark Wilberforce, Jessica Jiang, Refah Ahmed, Wesley Dowridge, Charles R Marshall, Claudia Cooper","doi":"10.1093/ageing/afae244","DOIUrl":null,"url":null,"abstract":"Introduction People from minoritised ethnic groups are diagnosed with dementia later in the disease. We explored pathways that may determine the timing of diagnoses in a UK ethnically diverse, urban area. Methods We conducted 61 semi-structured interviews: 10 community-dwelling older people from minoritised ethnic backgrounds with diagnosed and undiagnosed dementia (mean age = 72 years; males = 5/10), 30 family members (51; 10/30), 16 health or social care professionals (42; 3/15), 3 paid carers and 2 interpreters for people with dementia. We used reflexive thematic analysis and the Model of Pathways to Treatment to consider diagnostic delay. Findings We identified three themes: (1) Cultural identity and practices shape responses: gendered expectations that families relieve elders of household roles reduce awareness or concern when functioning declines; expectations that religious practices are maintained mean problems doing so triggers help-seeking. Second-generation family members often held insider and outsider identities, balancing traditional and Western perspectives. (2) Becoming like a tourist: daily experiences became unfamiliar for people developing dementia in an adopted country, sometimes engendering a need to reconnect with a home country. For professionals and interpreters, translating meanings faithfully, and balancing relatives’ and clients’ voices, were challenging. (3) Naming and conceptualising dementia: the term dementia was stigmatised, with cultural nuances in how it was understood; initial presentations often included physical symptoms with cognitive concerns. Conclusion Greater understanding of dilemmas faced by minoritised ethnic communities, closer collaboration with interpreters and workforce diversity could reduce time from symptom appraisal to diagnosis, and support culturally competent diagnostic assessments.","PeriodicalId":7682,"journal":{"name":"Age and ageing","volume":"87 4 1","pages":""},"PeriodicalIF":6.0000,"publicationDate":"2024-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Equality of opportunity for timely dementia diagnosis (EQUATED): a qualitative study of how people from minoritised ethnic groups experience the early symptoms of dementia and seek help\",\"authors\":\"Christine Carter, Moïse Roche, Elenyd Whitfield, Jessica Budgett, Sarah Morgan-Trimmer, Sedigheh Zabihi, Yvonne Birks, Fiona Walter, Mark Wilberforce, Jessica Jiang, Refah Ahmed, Wesley Dowridge, Charles R Marshall, Claudia Cooper\",\"doi\":\"10.1093/ageing/afae244\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Introduction People from minoritised ethnic groups are diagnosed with dementia later in the disease. We explored pathways that may determine the timing of diagnoses in a UK ethnically diverse, urban area. Methods We conducted 61 semi-structured interviews: 10 community-dwelling older people from minoritised ethnic backgrounds with diagnosed and undiagnosed dementia (mean age = 72 years; males = 5/10), 30 family members (51; 10/30), 16 health or social care professionals (42; 3/15), 3 paid carers and 2 interpreters for people with dementia. We used reflexive thematic analysis and the Model of Pathways to Treatment to consider diagnostic delay. Findings We identified three themes: (1) Cultural identity and practices shape responses: gendered expectations that families relieve elders of household roles reduce awareness or concern when functioning declines; expectations that religious practices are maintained mean problems doing so triggers help-seeking. Second-generation family members often held insider and outsider identities, balancing traditional and Western perspectives. (2) Becoming like a tourist: daily experiences became unfamiliar for people developing dementia in an adopted country, sometimes engendering a need to reconnect with a home country. For professionals and interpreters, translating meanings faithfully, and balancing relatives’ and clients’ voices, were challenging. (3) Naming and conceptualising dementia: the term dementia was stigmatised, with cultural nuances in how it was understood; initial presentations often included physical symptoms with cognitive concerns. Conclusion Greater understanding of dilemmas faced by minoritised ethnic communities, closer collaboration with interpreters and workforce diversity could reduce time from symptom appraisal to diagnosis, and support culturally competent diagnostic assessments.\",\"PeriodicalId\":7682,\"journal\":{\"name\":\"Age and ageing\",\"volume\":\"87 4 1\",\"pages\":\"\"},\"PeriodicalIF\":6.0000,\"publicationDate\":\"2024-11-20\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Age and ageing\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1093/ageing/afae244\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"GERIATRICS & GERONTOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Age and ageing","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/ageing/afae244","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"GERIATRICS & GERONTOLOGY","Score":null,"Total":0}
Equality of opportunity for timely dementia diagnosis (EQUATED): a qualitative study of how people from minoritised ethnic groups experience the early symptoms of dementia and seek help
Introduction People from minoritised ethnic groups are diagnosed with dementia later in the disease. We explored pathways that may determine the timing of diagnoses in a UK ethnically diverse, urban area. Methods We conducted 61 semi-structured interviews: 10 community-dwelling older people from minoritised ethnic backgrounds with diagnosed and undiagnosed dementia (mean age = 72 years; males = 5/10), 30 family members (51; 10/30), 16 health or social care professionals (42; 3/15), 3 paid carers and 2 interpreters for people with dementia. We used reflexive thematic analysis and the Model of Pathways to Treatment to consider diagnostic delay. Findings We identified three themes: (1) Cultural identity and practices shape responses: gendered expectations that families relieve elders of household roles reduce awareness or concern when functioning declines; expectations that religious practices are maintained mean problems doing so triggers help-seeking. Second-generation family members often held insider and outsider identities, balancing traditional and Western perspectives. (2) Becoming like a tourist: daily experiences became unfamiliar for people developing dementia in an adopted country, sometimes engendering a need to reconnect with a home country. For professionals and interpreters, translating meanings faithfully, and balancing relatives’ and clients’ voices, were challenging. (3) Naming and conceptualising dementia: the term dementia was stigmatised, with cultural nuances in how it was understood; initial presentations often included physical symptoms with cognitive concerns. Conclusion Greater understanding of dilemmas faced by minoritised ethnic communities, closer collaboration with interpreters and workforce diversity could reduce time from symptom appraisal to diagnosis, and support culturally competent diagnostic assessments.
期刊介绍:
Age and Ageing is an international journal publishing refereed original articles and commissioned reviews on geriatric medicine and gerontology. Its range includes research on ageing and clinical, epidemiological, and psychological aspects of later life.