NOLA

  • Research type

    Research Study

  • Full title

    No one left to cope alone: development of a post-diagnostic intervention to support people newly diagnosed with dementia

  • IRAS ID

    325387

  • Contact name

    Charlotte R. Stoner

  • Contact email

    charlotte.stoner@nelft.nhs.uk

  • Sponsor organisation

    North East London NHS Foundation Trust

  • Duration of Study in the UK

    0 years, 11 months, 30 days

  • Research summary

    Receiving a diagnosis of dementia can be traumatic. Despite this, emotional support that helps a person with dementia and their family process and adapt to a diagnosis is minimal in NHS services. As such, a post-diagnostic intervention to help people process and adjust to a diagnosis of dementia, increasing their wellbeing, is urgently needed.

    As part of a NIHR funded Programme Development Grant (PDG), we will conduct qualitative research using two Work Packages (WP). In WP1 we will use a national, online survey of people living with dementia and carers across the UK to better understand their experiences of receiving a diagnosis, what support they offered and what they require from a new intervention that aims to help them process and adjust to the diagnosis. This national survey will be complemented by in-depth, in-person interviews with people with dementia and carers at our sole NHS site.

    In WP2, we will conduct focus groups and interviews with three groups of participants: 1) healthcare managers/decision makers/policy professional/ community leaders, 2) healthcare and research professionals, and 3) people living with dementia and informal carers. The purpose of WP2 will be to understand what may help or stop us implementing an intervention in UK memory clinics. This will help us develop strategies that mean the intervention that we go on to develop can be used across the UK.

  • REC name

    East of England - Essex Research Ethics Committee

  • REC reference

    24/EE/0126

  • Date of REC Opinion

    11 Jul 2024

  • REC opinion

    Further Information Favourable Opinion