Developing better ways to talk to people with Alzheimer's disease about their illness
Research project: Mnemic neglect in people affected with Mild Alzheimer's disease: replicating and extending findings from Experimental Social Psychology.
Lead Investigator: Professor Richard Cheston
Institution: University of the West of England
Grant type: Project grant
Duration: 18 months
Start date: Sept 2014
End date: Oct 2016
What was the project, and what did the researchers do?
It is often assumed that the main reason why people with a diagnosis of dementia are sometimes not aware of their illness is because the disease has affected their brains. However, recent research indicates that other factors may be at play.
Psychological research suggests that people normally develop a positive self-concept, and that they protect themselves from information that is seen to threaten this self-concept, by remembering it less well.
This is called 'mnemic neglect', and has been reported to occur with information that is (1) negative (as opposed to positive), (2) concerns them and (3) relates to what are seen as important central characteristics (for example 'trustworthiness').
This might affect how people receive difficult news that affects their core concept, as might happen with a diagnosis of dementia. If true, this knowledge might help find better ways of talking to people about their illness.
This project aimed to show if people with Alzheimer's do experience mnemic neglect.
What were the key results and how will this benefit people with dementia?
Dementia-related words: In the first study (study A), the researchers asked if people with dementia remember neutral words (e.g. holiday, seeing ) better than dementia-related words (e.g. memory, forget). However, the findings actually showed the opposite, with higher recall of dementia-related words. This indicates a greater ability to access dementia words by people who have dementia, perhaps because they are processing those words more deeply.
Do people with dementia show mnemic neglect with generic statements?: In the second study (Study B), the researchers asked if people with dementia show mnemic neglect using generic statements that have been found to have an effect on other groups of people. Recall of positive and negative sentences that referred to themselves was compared to recall of sentences referring to another person. (Positive: I/Chris will keep secrets; Negative: I/Chris would cheat in a test). However, no difference was found for this activity between people with and without dementia.
Do people with dementia show mnemic neglect with dementia-related statements?: In the third and final study (Study C), researchers repeated study B, but used highly threatening dementia-related statements. These were either highly threatening (e.g. Your/Chris' illness is a progressive disease) or less threatening (e.g. Your/Chris' illness doesn't change who he is/you are). In this case, the results supported the hypothesis: people with dementia did indeed remember dementia-related threatening statements better if related to other people rather than to themselves. In addition they were also more likely to make an error such as "your illness is NOT progressive". This suggests that their memory is acting, in effect, to protect the self against threatening information - that they have a selective recall of this information which helps them to feel better about themselves
These results could be used to improve how information is presented to people with dementia, and hence their ability to make decisions about their own condition and to be involved in their own care. For example, it might help to discuss the illness with the person and their partner, raise levels of self-esteem before discussing the diagnosis, or discuss less threatening information before moving onto more threatening feedback.
The process of compiling these threatening statements (an online survey completed by 450 people) was used to develop a questionnaire that defines a "Threat of Dementia Scale". This could help us to see if people's fear of dementia has changed, for example decreasing after attending a support group.
What happened next? Future work and additional grants
Validation studies are being carried out for the "Threat of Dementia Scale" developed as part of this project.
Funding has been obtained from Alzheimer's Research UK to look at ways of improving recall by people with dementia of important information about the disease, and a second related application has been submitted.
How were people told about the results?
The work was presented at four conferences in 2016, in Dublin, Bristol, Nottingham, and Stirling.
Other dissemination activities
The protocol for the study has been registered at the ISRCTN
A summary of the research was sent to interested participants of the study.