Change in MND

Cognitive, behavioural and lifestyle change in motor neurone disease

UK Chief Investigator

Professor Eneida Mioshi

Research summary

Motor 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 provide information on areas which might benefit from newly designed interventions and/or coping strategies for the persons with MND and their families.

We will recruit 36 people with MND and 36 of their family carers (spouse/relative/close friends) 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 five 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 one hour, taking place every three months, totalling to a maximum of four 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 criteria

Inclusion 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.

Exclusion criteria

  • For patients:

    • Presence of another major comorbid psychiatric disorder.

    • Previous history of high consumption of alcohol that in the clinician's opinion is relevant to their disorder.

    • Significant comorbid medical illness or visual loss likely to interfere with the research protocol.

    • Placement in residential care or nursing home.

  • Another medical or neurological illness that is causing dementia.

  • Absence of reliable study partner willing to participate as an informant (for patient participants).

Current status

Closed to recruitment.

Locations

  • Cromer

  • Norwich (Community Care)

  • Norwich (Norwich Community Hospital)

  • Norwich (Norfolk and Norwich University Hospital)

Information about study sites

Contact details

Lead site – MND research team

Email: mnd.research@uea.ac.uk

Recruitment group(s)

  • Patients with MND

  • Partners of patients with MND

Recruitment target(s)

180 MND patients and 180 of their partners = TOTAL 360 study participants.

Key dates

Actual opening date: 2 January 2018

Recruitment planned end date: 1 November 2022

Sponsor

University of East Anglia

Study design

Cross-sectional observational

Intervention (if applicable)

Not applicable

Phase (if applicable)

Not applicable

Outcome measures

The 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, wellbeing and caregiver burden are as potential outcome measures for future interventions in people with MND and their families.

Publications / Results reports

Links will be provided when papers are published.