Who to tell, how and when? Version 1.2

  • Research type

    Research Study

  • Full title

    Who to tell, how and when? An intervention to support people living with dementia who are fearful of disclosing their diagnosis to others

  • IRAS ID

    232901

  • Contact name

    Georgina Charlesworth

  • Contact email

    g.charlesworth@ucl.ac.uk

  • Sponsor organisation

    University College London or University College London Hospital Trust

  • Duration of Study in the UK

    1 years, 7 months, 31 days

  • Research summary

    The primary aim of this research is to establish the feasibility of a manualised intervention programme to support people living with dementia who are fearful of disclosing their diagnosis to others.

    This aim will be achieved through three objectives:
    (1) to adapt existing tools to measure stigma stress, self-stigma and secrecy in people living with dementia– Psychometric Study
    (2) to adapt an existing disclosure decision making intervention for the use with people living with dementia (Who to tell, how and when v2.0) – Feasibility Study 1
    (3) conduct feasibility testing and preliminary evaluation of the intervention– Feasibility Study 2

  • REC name

    West Midlands - Solihull Research Ethics Committee

  • REC reference

    18/WM/0169

  • Date of REC Opinion

    27 Jun 2018

  • REC opinion

    Unfavourable Opinion