Measuring Cognitive and Behavioural Change in ALS

Testing whether different screening tools lead to similar rates of diagnosed changes in thinking, language and behaviour

About 50% of people with Motor Neuron Disease (MND) develop changes in their thinking and behaviour which may, in around 15% of cases, lead to the diagnosis of frontotemporal dementia (FTD). Several different assessment methods - called screening tools – exist for testing people with MND and obtaining information from carers. However, it is unclear whether each of the different tools would lead to the same conclusion in the same person with MND, since they use different approaches and have different rules for deciding whether someone is impaired. If they do not agree, some people could receive an incorrect diagnosis of changes in their thinking, language and behaviour, depending on which tool was used; this might affect the practical care they receive. Thus, the main aim of this project is to test whether different screening tools lead to similar rates of diagnosed change in the same people.

What does taking part involve?

People with MND and healthy controls: We will give you a series of computerised questionnaires and puzzle-like tests. The tasks will take about 2 hours in total and can be divided into shorter sessions. You will be given generous breaks between tasks. All study participation will take place through video call apps so you can take part from home.

Study location

Taking part in this research will not involve any in-person interaction, all activities will take place remotely online. People with MND and healthy controls must have English as their first language but can live anywhere in the UK.

The study is being conducted at the Institute of Psychiatry, Psychology and Neuroscience; King’s College London.

If you are interested in taking part, please use the button below to sign up for more information and the researcher will be in touch shortly:

Who can take part?

People with MND – between the ages of 18 and 75; native language is English; not receiving treatment for any other life limiting illness (e.g. cancer) or neurological disease (e.g. Alzheimer’s Disease, Parkinson’s Disease) or neurological disorder (e.g. stroke)

• Healthy controls – between the ages of 18 and 75; native language is English; not receiving treatment for any life limiting illness (e.g. cancer) or neurological disease (e.g. Alzheimer’s Disease, Parkinson’s Disease) or neurological disorder (e.g. stroke). Carers can take part as healthy controls also.

How can I take part?

To take part, use the button on this page to sign up for more information and the researcher will be in touch shortly.

Contact

For any queries and more information please sign up using the button or email the researcher, Lyndsay Didcote, at lyndsay.didcote@kcl.ac.uk

Funding

This study is funded by the Motor Neurone Disease Association.

Expiry date: 30 June 2021

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262