Welcome to MiNDToolkit

Carers told us that learning about behavioural symptoms was like a ‘lightbulb moment’. Carers who used MiNDToolkit were interviewed at the end of the study. What they said was analysed following rigorous methodology. Carers’ experience of behavioural symptoms was particularly distressing when symptoms were apparently out of context, i.e., they did not know they were common symptoms in MND. However, MiNDToolkit appeared to support learning that behavioural symptoms were part of MND.

Content of MiNDToolkit resonated with carers, who reported learning about the full picture of MND, which led to acceptance and use of newly learned strategies. Engagement with the platform was good.

Greater and nuanced involvement from HCPs seem important to support management of behavioural symptoms. For future studies, carers suggested including adding a paper booklet to accompany the intervention and creation of new modules on emotional lability, changes in relationships, and transitioning to a care home.

Full details on the scientific results can be found here.

Healthcare professionals said that MiNDToolkit was a beneficial and acceptable resource for them, with potential to increase knowledge and confidence for their work with MND families. Professionals also said that MiNDToolkit could help them in better recognise, identify and manage behavioural symptoms in MND.

However, some professionals were worried that raising questions about behavioural symptoms would be burdensome to carers – for this reason, sometimes they did not raise the potential presence of behavioural symptoms in their appointments with the families. Professionals also thought that family carers would take the initiative to ask for support from clinicians instead. Unfortunately, it appears that many carers do not know about behavioural symptoms and therefore cannot ask about something that they do not fully know. Carers may mistake behavioural symptoms, such as lack of empathy, as emotional reactions from the person with MND. This can be hurtful if symptoms are severe.

Read more about the family carers’ perspectives above.

Full details on the scientific results of the study on healthcare professionals can be found here.

This means that we can now test the MiNDToolkit with a larger number of carers, to find out if MiNDToolkit can do what it is intended to do (efficacy). MiNDToolkit targets carers’ skills in managing behavioural symptoms in MND, and also targets carers’ skills in looking after themselves well, which is technically called ‘carer self-efficacy’.

Full details on the scientific results can be found here.