Receiving and using information after a diagnosis of dementia v1.0
Research type
Research Study
Full title
Information provision after a diagnosis of dementia – understanding the perceptions and experiences of people with dementia.
IRAS ID
243898
Contact name
Hilary Mairs
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
0 years, 10 months, 6 days
Research summary
BACKGROUND
When people are told that they have dementia, it is important that they are given information about their diagnosis and the support that is available to them. This information (known as ‘post-diagnostic information’) should include details about the symptoms of dementia, treatment, local support and information about practical matters such as finances and driving.
Services try to diagnose people at an early stage of dementia so that they can be involved in decisions about their care and planning for the future. Information should be an important part of this. However, little is known about the experience of being given post-diagnostic information and what it means to someone living with dementia.
AIMS
To explore the experience of being given post-diagnostic information from the perspective of people with dementia.
To explore what being given this information means to people with dementia.
METHODS
People who have recently been diagnosed with any type of dementia and have been offered post-diagnostic information will be asked to take part in the study.
They will take part in an interview about their experiences and their thoughts on this. A friend or family member will be able to join them in the interview if they want them there. This person will be able to provide information and support during the interview, but the interview questions will be asked to the person with dementia. A follow up interview may be required to discuss issues in more detail as the interviews are analysed.
The researcher will ask for permission to access the person's electronic patient records held by Wigan Later Life and Memory Service.
The interviews will be audio recorded. The recordings will be typed up word for word. This will be analysed using appropriate qualitative methods.REC name
North West - Preston Research Ethics Committee
REC reference
18/NW/0732
Date of REC Opinion
28 Nov 2018
REC opinion
Further Information Favourable Opinion