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.

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 online 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

Protocol

Funder

Carers Trust

Duration

July 2012 - June 2013