Informal Carer and Professional Perspectives on Dementia Support

  • Research type

    Research Study

  • Full title

    Informal carer and professional perspectives on carer support from specialist dementia services: A survey study

  • IRAS ID

    324932

  • Contact name

    Lewis McQueen

  • Contact email

    lewis.mcqueen@nhs.net

  • Sponsor organisation

    York St John University

  • Duration of Study in the UK

    1 years, 0 months, 1 days

  • Research summary

    There are currently around 700,000 informal carers in the UK currently caring for someone living with dementia, and these informal carers provide the majority of dementia care. It has been clearly established in previous research that caring for someone living with dementia has impacts on wellbeing, mental health and even mortality of the carers. Clinical guidelines are clear that supporting carers and enhancing their input is essential for dementia care to operate effectively however this is not achieved in practice with previous research identifying that informal carers find support from services inadequate, they have difficulties accessing information and support from the onset of symptoms through to end of life care. The relationship between services and informal carers is also thought to be essential for dementia care to operate effectively however in reality this is often fractured and service delivery varies significantly across localities. Prior research has examined how informal carers experience support from services generally, but has not explored their perspectives on support from specialist dementia services and has not explored staff perspectives of this support to compare the two perspectives. This study will distribute one off surveys electronically to informal carers of people with dementia, and to professionals working in specialist dementia services, which should take no more than 15 minutes to complete. Questions are taken from previously validated surveys including questions on mattering and anti-mattering, and from the Carer Wellbeing and Support (CWS) scale and will examine how carers and professionals view support for carers from dementia services.

  • REC name

    HSC REC A

  • REC reference

    23/NI/0138

  • Date of REC Opinion

    13 Nov 2023

  • REC opinion

    Further Information Favourable Opinion