How can people with dementia and their carers be better supported after a diagnosis?
The Influence of Relatives’ Expressed Emotion study is looking into how people with dementia and their carers can be better supported after a 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. The team are particularly interested in learning more about family relationships following a dementia diagnosis.
The study formed part of a PhD for Roxanne Safavi at the Department of Clinical Psychology, University of Manchester. We caught up with Roxanne to find out more.
What are the main aims of The Influence of relatives’ Expressed Emotion study?
The purpose of the study is to explore factors influencing people with dementia wellbeing and adjustment following a diagnosis of dementia. The study also aims to explore the factors influencing the caregiver’s wellbeing and adjustment. We are also interested in learning more about the participant’s experiences of dementia and relationship with the caregiver following a diagnosis of dementia.
What does it involve for a participant?
Participants will be asked to fill in some questionnaires, which will take approximately 45 minutes. The questionnaires will give us an insight into memory, wellbeing, relationships and quality of life. Participants will 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 will be 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.
How long is the study for?
The study involves two home visits 6 months apart. The visits will take place on a one-to-one basis, at the participant’s home and at their convenience. The study will last approximately 6 months.
What do you hope the outcomes of the study will be?
We are interested in understanding the participant’s experiences and the experiences of the caregiver following a diagnosis of dementia. A better understanding of experiences and the factors influencing wellbeing will help to inform the development of effective ways of supporting relatives and people with dementia. This is a key opportunity to help current and future caregivers and people with a diagnosis of dementia.
Participants are sought who meet the following criteria:
- The participant has been given a diagnosis of dementia within the past 24 months.
- The participant is able to understand the research study and make a decision on whether they would like to take part.
- The participant lives with, or has regular contact (minimum of 10 hours per week) with a caregiver.
- The participant should live in the Greater Manchester area.
- The caregiver must also consent to the study.
You can see if you are eligible for this study – and others around the nation by logging into your Join Dementia Research account.
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