Supporting carers of people with dementia

The project will look at the increasing numbers of people who live with impaired cognition or communication. These groups have traditionally been without a ‘voice’ in research about their lives and needs, particularly in health services research. 

Related links

Publications and presentations from the project are available from the York Research Database

This research sits within our Illness and impairment research theme. Read about our research themes.

SPRU research team

  • Caroline Glendinning

External collaborators

  • Liz Newbronner, Firefly Research
  • Rachel Borthwick, Firefly Research
  • Ruth Chamberlain, Firefly Research
  • Martin Baxter, Firefly Research

Project summary

The Carers Trust wished to understand the caring 'journeys' of carers of people with dementia, to inform  the planning and delivery of information, advice and other support services for this group of carers.

The project involved:

  • a scoping review of recent UK literature
  • initial interviews and focus groups with carers from four localities across the UK. These tested and refined the use of a visual 'timeline' approach to explore carers' experiences over time and identify particular stress points and help they found, or would have found, useful at these points
  • a survey of carers, drawing on the results of the scoping review, initial interviews and focus groups to refine the survey questions. The survey covered the whole UK, it was primarily completed on-line using Smart Survey and analysed using SPSS
  • a feedback workshop to validate the provisional findings

We worked closely with local Carers Centres in conducting the study.

Additional information

Duration

July  2012 - June 2013

Related links

Publications and presentations from the project are available from the York Research Database

This research sits within our Illness and impairment research theme. Read about our research themes.