Social and Personal Constructs of Dementia

  • Research type

    Research Study

  • Full title

    Social and Personal Constructs of Dementia

  • IRAS ID

    163638

  • Contact name

    Shahina Begum

  • Contact email

    uclh.randd@nhs.net

  • Sponsor organisation

    University College London

  • Duration of Study in the UK

    4 years, 5 months, 31 days

  • Research summary

    The proposed project: 'Social and Personal Constructs of Dementia' seeks to explore contemporary issues of living well with memory difficulties, including living in the community with early stage dementia. There are two key research aims. 1) To recruit people referred to memory services who are interested in taking part in research about dementia. We aim to recruit approximately 600 people 2) To recruit approximately 125 people from this research list and from the wider public to take part in the 'Talking about memory’ study. The 'Talking about memory’ study aims to explore what memory means to people, how they describe memory difficulties, the challenges of living with memory difficulties including dementia and the ways in which people manage to continue with valued social activities. We will also explore the more negative concepts of living with memory difficulties and dementia, such as stigma, loss of role and other negative consequences of memory difficulties over time. We aim to understand the protective effects of positive factors such as resilience, self-efficacy and sense of coherence. We will recruit members of the public, people with early stage dementia and people who are carers for people with dementia. We will use one-to-one interviews and observations to collect the data; most data collection will take place in the participant’s home. We will collect data over 18 months and the findings from the ‘Talking about memory’ study will be used to help develop guidance and activities which may help people with early stage dementia live well in the community.
    The project ‘Social and Personal Constructs of Dementia’ is part of the Promoting Independence in Dementia (PRIDE) programme (http:/www.ucl.ac.uk/psychiatry/pride) which includes the English Longitudinal Study of Aging (ELSA) and the development and evaluation of guidance and advice on how to live well with early stage dementia.

  • REC name

    East of England - Essex Research Ethics Committee

  • REC reference

    15/EE/0134

  • Date of REC Opinion

    5 Jun 2015

  • REC opinion

    Further Information Favourable Opinion