This research proejct is being led by Prof. Eneida Mioshi at the University of East Anglia.
We know that around 50% of people with MND experience some behavioural symptoms, including apathy (a lack of motivation), disinhibition (lack of control of impulsiveness) and rigidity (difficulty switching between different thoughts). The symptoms seem to relate to a rare form of dementia, frontotemporal dementia (FTD), which is observed in some people with MND at varying intensities.
This new project will investigate if and how these behavioural symptoms have a negative effect on anticipatory grief in their family. Anticipatory grief, or grief that occurs before death, is common among people who are facing their eventual death, or the death of a loved one.
Behavioural symptoms in MND can lead to greater worry and distress in family members, including their experience of anticipatory grief.
If we can understand these processes, health professionals may be able to suggest coping mechanism or therapy options with high risk families for optimal management. Furthermore, the study will also reveal key areas of family caregiver needs during bereavement that can be addressed with specific coping strategies or early interventions.
If you're interested in learning more about MND Scotland-funded research projects, please contact us at firstname.lastname@example.org or call on 0141 332 3903.