We’re proud to announce that the Influence of Relatives’ Expressed Emotion study has recently signed up the total number of volunteers it requires after seeking participants through Join Dementia Research. The study sourced 60% of its volunteers using Join Dementia Research and was able to recruit the first participant within the first two weeks.

Roxanne Safavi

Chief Investigator of the study, Roxanne Safavi

The study is looking at how people with dementia and their carers could be better supported after being given a diagnosis. In particular, the team are particularly focused on learning about family relationships following a dementia diagnosis.

The research team hope that their research will help clinicians to gain a better insight into factors that influence wellbeing and adjustment, in order to develop methods of support and interventions.
We caught up with Chief Investigator of the study, Roxanne Safavi, who told us a bit about what is next for this study and what it was like to recruit for a dementia study using Join Dementia Research.

What does the study involve for participants?

Participants are asked to fill in some questionnaires, which take approximately 45 minutes. The questionnaires will give us an insight into memory, wellbeing, relationships and quality of life. Participants will then be contacted 6 months later and asked to fill in the same set of questionnaires for a second time. This will help us look at whether there are any changes in memory, wellbeing, relationships and quality of life over time.
The caregiver will be asked to take part in an interview which will last approximately 60 minutes and which will take place in the participant’s home. During the interview, the caregiver is asked about the participant’s dementia and about their experiences since the participant’s diagnosis. The caregiver will also be asked to fill in some questionnaires which will take approximately 30 minutes. The questionnaires will provide insight into their health, relationships, and wellbeing.

What are the next steps for this study?

The next steps are to firstly, complete the 6-month follow up meetings with the sixty volunteers who took part and to then write up and publish the findings of the study. The follow up meetings include a series of questions with the participant who has a diagnosis of dementia and their relative regarding psychological wellbeing. Following this, the data will be transcribed and analysed using a series of tests and correlations.
I have not yet collected all of the follow-up data but I feel the recruitment and meeting with participants has been really insightful in gaining an insight into psychological wellbeing and adjustment following a recent diagnosis of dementia.

What did the Join Dementia Research recruitment process entail and how did it help you to recruit volunteers to your study?

The Join Dementia Research process was beneficial to me in a number of ways. It gave me the opportunity to open up the location of recruitment to a larger group than I had initially specified and helped me to identify more people who might be interested in taking part in the study.
The comments section in the Join Dementia Research system was also useful, it helped in gaining an insight into the person’s current situation and involvement within research. For example, if they did not want to be contacted for a certain number of weeks or were currently awaiting a screening for a different research study. The ability to update a participant’s status enabled me, the participant and any other researchers know of the person’s current involvements and any other studies they were currently a part of.
Join Dementia Research has been a massive help in identifying people who are interested in taking part in research, and has been a huge help in the recruitment to the study. It has been really user friendly and I would definitely use Join Dementia Research in the future and would recommend it to others.


Martin-In-GardenYou can see if you are eligible for a variety of other studies around the UK by logging into your Join Dementia Research account.

Not registered with Join Dementia Research? Why not sign up today?