Exploring real-world memory in autoimmune limbic encephalitis-V1
Research type
Research Study
Full title
Exploring real-world memory in autoimmune limbic encephalitis: the nature of remembering and forgetting
IRAS ID
287346
Contact name
Kata Pauly-Takacs
Contact email
Sponsor organisation
Leeds Beckett University
Duration of Study in the UK
1 years, 10 months, 1 days
Research summary
Autoimmune limbic encephalitis (ALE) is a relatively recently recognised illness associated with structural and functional changes in a part of the brain called the temporal lobe due to inflammation. Upon the diagnosis of ALE patients receive medical treatment (drugs such as steroids) over a period of months which is gradually withdrawn as symptoms settle. If patients remain well, they are considered to be treated and receive outpatient follow-up every 6-12 months for a period of years. Despite medical recovery, it is often observed that due to changes in the brain as a result of the illness patients have ongoing problems with their long-term memory.
To date, the types of memory difficulties that people have after medical recovery remain under researched. Such problems can be relatively mild during routine clinical assessment despite people reporting that they have a significant impact on day-to-day functioning and quality of life. Therefore, the purpose of this research is to contribute to a better appreciation of the nature of real-world memory problems that may present as a long-term consequence of the illness, after medical recovery. To this end, two stand-alone studies will be conducted alongside the administration of some brief tests of memory and thinking abilities. The purpose of the brief assessments is to obtain reliable information regarding the level of memory impairment and thinking abilities of the participants as well as their self-reported memory problems, whilst the two stand-alone studies will answer specific research questions related to real-world memory ability, which have not been explored previously in the literature.Research aims:
Study 1 will ascertain ALE patients’ ability to retrieve past personal memories (also known as autobiographical memories) across the lifespan as well as their experience and feelings associated with remembering. This will be achieved by using a published semi-structured interview protocol of autobiographical memory (TemPau task).
Study 2 will ascertain the rate at which ALE patients might forget verbal material using a published protocol (Crimes test). This test involves listening to a description of modest crimes which participants are asked to memorise for later memory tests after different delay periods. For example, over a one-month period forgetting may be faster or about the same as other people who have not had the diagnosis in the past.
Patients’ performance will then be compared to an appropriate group of controls (i.e. participants who have not had the diagnosis in the past) to help appreciate any differences and/or impairment. This project has implications for the basic understanding of long-term memory mechanisms and will offer insights into the nature of memory problems following autoimmune limbic encephalitis to inform care and rehabilitation in this patient group.
The two studies for which ethical approval is sought in this application will form part of the PhD project of Sarah Martin on ‘Characterising memory loss in autoimmune limbic encephalitis’.REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
20/EM/0301
Date of REC Opinion
27 Jan 2021
REC opinion
Further Information Favourable Opinion