Views and Experiences of Dementia in People With Intellectual Disabilities: A Systematic Review of Qualitative Research.

Background: It is important to hear the perspectives of people with intellectual disabilities on dementia. This review aimed to explore views and experiences of dementia from the perspective of people with intellectual disabilities and methodologies enabling people with intellectual disabilities and...

Descripción completa

Detalles Bibliográficos
Publicado en:Journal of Intellectual Disability Research Vol. 69; no. 7; pp. 533 - 546
Autores principales: Carter, Joanna, Spector, Aimee, Ali, Afia, McFeeters, Amelia, Butt, Sarah, Charlesworth, Georgina
Formato: research systematic review tables/charts Journal Article
Publicado: Wiley-Blackwell Jul2025
Acceso en línea:Ver este registro en EBSCOhost
fields @attributes:
  recordID: 1
pdfLink:
plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=186163499&site=ehost-live
header:
  @attributes:
    shortDbName: ccm
    uiTerm: 186163499
    longDbName: CINAHL Complete
    uiTag: AN
  controlInfo:
    bkinfo:
    dissinfo:
    jinfo:
      jid:
        09642633
        EUL
      jtl: Journal of Intellectual Disability Research
      issn: 09642633
      maglogo: Y
    pubinfo:
      dt: Jul2025
      vid: 69
      iid: 7
      pid: 480
      pub: Wiley-Blackwell
      place: Malden, Massachusetts
    artinfo:
      ui:
        186163499
        183674850
        186163499
        186163499
        10.1111/jir.13227
        186163499
      ppf: 533
      ppct: 13
      formats:
        fmt:
          – @attributes:
              type: T
          – @attributes:
              type: C
          – @attributes:
              type: P
      tig:
        atl: Views and Experiences of Dementia in People With Intellectual Disabilities: A Systematic Review of Qualitative Research.
      aug:
        au:
          Carter, Joanna
          Spector, Aimee
          Ali, Afia
          McFeeters, Amelia
          Butt, Sarah
          Charlesworth, Georgina
        affil: Research Department of Clinical, Educational & Health Psychology, University College London, London, UK
      sug:
        subj:
          Persons with Disabilities Psychosocial Factors
          Intellectual Disability
          Dementia Epidemiology
          Patient Attitudes Evaluation
          Life Experiences Evaluation
          Attitude to Illness Evaluation
          Human
          Systematic Review
          Qualitative Studies
          Descriptive Statistics
          Psycinfo
          Medline
          World Wide Web
          Thematic Analysis
      ab: Background: It is important to hear the perspectives of people with intellectual disabilities on dementia. This review aimed to explore views and experiences of dementia from the perspective of people with intellectual disabilities and methodologies enabling people with intellectual disabilities and dementia to participate in qualitative research. Methods: Studies were identified in database searches, along with reference and citation searches. Qualitative data were reviewed using thematic synthesis and risk of bias assessed using the Critical Appraisal Skills Programme (2018). Methodologies used to include participants with intellectual disabilities and dementia were reviewed. Results: Findings from 11 studies, with a total of 47 participants, highlighted loss of ability, relationships and connection associated with dementia, counteracted by support from others, and maintenance of a sense of self through choice, relational connection and competence. A range of methodologies were identified to enable participants with intellectual disabilities and dementia to participate in research. Conclusions: This review highlights emerging, albeit demographically limited, qualitative research in this field. It suggests ways to build on this including methodologies to facilitate inclusion of people with intellectual disabilities and dementia in further research.
      pubtype: Academic Journal
      doctype:
        research
        systematic review
        tables/charts
        Journal Article
      ougenre: Article
    language: English
    refInfo:
    holdings:
      @attributes:
        islocal: N