Research User Group Newsletter Keele University RUG Spring / Summer edition | Page 12

For example, having a family member or friend know
the details of the time and place of any activities was
identified as one way for people with dementia to feel
reassured when agreeing to participate in the study. In
response to this advice the IDEA team changed their
study documentation so that participants could
nominate someone to receive this information. 
Research Updates
The Idea Study
T
 he Indicators of DEmentiA outcomes (IDEA
study) aims to investigate the experience of the 
condition both from those who live with dementia
and caregivers. 
Dementia is a term used to describe a number of
conditions including common types such as
‘Alzheimer’s disease’, ‘vascular dementia’, and ‘Lewy
body dementia’. An estimated 850,000 people are
currently living with dementia in the UK.
Symptoms include memory loss and difficulties with
problem-solving and language and these can
sometimes impact on the day to day functions. 
Co-ordinated by Shula Baker, IDEA is one of several
dementia-related studies currently being organised
by researchers at the Research Institute of Primary
Care and Health Sciences at Keele. On February 8th,
the IDEA study team held their first patient and
public involvement (PPI) meeting with members of
the newly formed Dementia Research User Group
(RUG), during which members commented on study
recruitment materials (e.g. information leaflets,
participant consent forms, invitation letters). Their
valuable feedback was used to improve the content
of the study materials. 
"Valuable feedback
from the RUG was
used to improve
the content of the
study materials."
The IDEA study is now awaiting independent peer
review and ethical approval and will commence
recruitment once this is in place. The study team will
use Join Dementia Research to help find suitable
participants, as well as advertising on the Keele
website and through social media. Join Dementia
Research is an online self-registration service that
enables volunteers with memory problems or
dementia, carers of those with memory problems or
dementia and healthy volunteers to register their
interest in taking part in research.
Those who are interested can find more details on
Join Dementia Research at:
www.joindementiaresearch.nihr.ac.uk/ 
 Feedback from the Dementia RUG  included
changes to the information content and style, and
ways of giving reassurance to those who wish to
take part. 
RESEARCH UPDATES
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