Change in MND

Study titleCognitive, behavioural and lifestyle change in Motor Neurone Disease
UK Chief InvestigatorProf Eneida Mioshi
Research summaryMotor neurone disease (MND) is a progressive neurodegenerative disease that effects movement, and recent research has that in up to 50% of individuals behaviour and/or cognitive functioning might also be affected, with some developing associated dementia. However, it is important to understand how these behavioural and/or cognitive impairments develops throughout the disease and impacts everyday life and functioning of the person living with MND, as well as their family members. The aim of this study is to investigate how these different everyday life and functioning factors associate with cognitive and behavioural impairment in people with MND and how this effects the family unit. This will also information on areas which might benefit from newly designed interventions and/or coping strategies for the persons with MND and their families. 36 people with MND and 36 of their family carers (spouse/relative/close friends) will be recruited to take part in the study per year. This will amount to a total of 180 people with MND and 180 of their family carers (spouse/relative/close friends) over the 5 years. This study will include repeated visits and interviews both for the people with MND and their family carers. Each of these visits will last about 1 hour, taking place every 3 months, totalling to a maximum of 4 visits and will assess cognitive ability, behaviour, everyday life and functioning of the people living with MND, as well as the lifestyle of the family carers. Researchers will visit the participants and their families at home, but they will also be provided an option to come to the University of East Anglia for participation. Eligible participants should have a diagnosis of MND and a family carer who is willing to participate in the study.
Inclusion/exclusion criteriaINCLUSION CRITERIA
- Patients with a clinical diagnosis of MND or MND-FTD.
- Study partners of participants with MND will be family carers, relatives, close friends or live in professional carers of the patient participant. These study partners will have at least 14 hours of contact with the participant per week and be willing to participate in research activities.

- For patients, presence of another major comorbid psychiatric disorder.
- For patients, previous history of high consumption of alcohol that in the clinician’s opinion is relevant to their disorder.
- Another medical or neurological illness that is causing dementia.
- For patients, significant comorbid medical illness or visual loss likely to interfere with the research protocol.
- For patients, placement in residential care or nursing home.
- Absence of reliable study partner willing to participate as an informant (for patient participants).
Current statusActive – recruiting
Norwich (Community Care)
Norwich (Norwich Community Hospital)
Norwich (Norfolk & Norwich University Hospital)
Contact detailsLead site - MND Research team, email:
Recruitment group(s)Participant groups:
1. Patients with MND
2. Partners of patients with MND
Recruitment target(s)180 MND patients and 180 of their partners = TOTAL 360 study participants.
Key datesActual opening date: 02 January 2018
Recruitment planned end date: 01 November 2022
Funder(s)Motor Neurone Disease Association (MNDA)
SponsorUniversity of East Anglia
Study designCross-sectional observational
Intervention (if applicable)Not applicable
Phase (if applicable)Not applicable
Outcome measuresThe principal study aim is to explore how cognitive, behaviour symptoms and lifestyle factors change over time and their impact on quality of life and caregiver burden in people with MND and their families. The secondary study aim is to determine how applicable measures of quality of life, well-being and caregiver burden are as potential outcome measures for future interventions in people with MND and their families.
Publications / Results reportsLinks will be provided when papers are published.
Participant Information Sheet