Exploring needs of carers of people with dementia towards end of life

  • Research type

    Research Study

  • Full title

    Exploring the needs of family carers of people with dementia towards the end of life: A retrospective qualitative study using principles of grounded theory

  • IRAS ID

    221067

  • Contact name

    Sara Yearsley

  • Contact email

    sara.yearsley@manchester.ac.uk

  • Sponsor organisation

    University of Manchester

  • Duration of Study in the UK

    0 years, 11 months, 30 days

  • Research summary

    This is a qualitative study that seeks to gain further understanding of the needs family carers of people with dementia have at the time the person they care for nears the end of life.

    Family carers are relatives, friends or neighbours who provide informal unpaid care to someone with dementia. The challenges associated with providing care can result in family carers developing unmet needs. This research is potentially beneficial because little is known about the specific physical, psychological, social and spiritual needs of family carers of people with dementia nearing the end of life.

    It is a priority of the UK government and the NHS to better support family carers. The government published guidelines calling on healthcare professionals to assess and address carer needs, but the evidence base for family carers of people with dementia toward the end of life is limited. Findings from this study could guide healthcare professionals when they conduct clinical assessments of carer needs.

    Around thirty people will take part in this retrospective study. Participants must have provided informal care to a relative, friend or neighbour with dementia, including within the last twelve months of that person's life. Participants must also be over the age of eighteen, be able to communicate in English and have capacity to give informed consent. Each participant will attend a semi-structured interview at a private venue of their choice and take part in a brief follow-up telephone interview. Participants will talk about their experiences of providing care.

    This research study is being funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) as part of their Research Capacity in Dementia Care Pilot Programme, which explores issues relating to dementia care provision.

  • REC name

    North West - Greater Manchester East Research Ethics Committee

  • REC reference

    17/NW/0420

  • Date of REC Opinion

    26 Sep 2017

  • REC opinion

    Further Information Favourable Opinion