Motor neurone disease (MND) is a progressive neurodegenerative disease that effects motor systems and neural circuitry. Moreover, non-motor symptoms can occur as a part of the disease process, with problems in behavior and thinking being quite prominent. Further to this, up to 15 per cent of people with MND can develop frontotemporal dementia (FTD), a form of dementia primarily marked by behavior and language changes. These problems and changes have implications for all facets of well-being, quality of life, mood, sleep, comfort and uptake of support services for the people with MND and their family members. This study therefore aims to introduce an MND research programme and establish a research pathway in an effort to explore changes relating to the disease and their associations with lifestyle and related elements within MND, through baseline and follow-up visits with patients and their families. This research will lay the foundations for creating and developing novel strategies and mechanisms to help with non-motor changes associated with disease, as well as bridging research and practice to increase the applicability of findings produced from this type of research.
- Explore how changes in behavior and thinking relate with disease, everyday life, quality of life and wellbeing in people with MND and their caregivers
- Determine the acceptability and applicability of quality of life and wellbeing as outcome measures for future interventions
This research is of a cross-sectional and longitudinal design, looking at behaviour and thinking ability associates in people with MND and their families. Participants will be asked to take part in a baseline visit and three follow-up visits at equal three-month intervals. They will be asked to complete tasks of thinking and problem solving, questionnaires on how they are feeling, their behaviour, quality of life and wellbeing during these visits, and their family members will also be interviewed and asked to complete some similar questionnaires.
Prof Eneida Mioshi (UEA, CI)
Prof Michael Hornberger (UEA, CI)
Dr Ratko Radakovic (UEA)
Kaitlin Dudley (UEA)
Ms Helen Copsey (PI - MND Care and Research Network Coordinator)
If you are interested in taking part in MND research, please email the team at firstname.lastname@example.org
Funding: MND Association