We know that some people with MND will be affected by cognitive change and a small proportion of these will develop frontotemporal dementia (FTD). The symptoms of cognitive change include changes in planning and decision making.
To help support people with MND who have these symptoms, and their families and carers, we need to firstly identify or confirm these signs are present and then to find ways to help manage them.
The Edinburgh Cognitive and Behavioural ALS Screen (known as ECAS) has been widely adopted as a good method of detecting symptoms of cognitive change. ECAS is a series of tests that are quick to do in the clinic and are specific to MND.
However there is no consensus on ways to help manage these symptoms, if they are present. Guidance is needed to help healthcare professionals support people with MND and their families. At the same time, appropriate information and advice are also needed for people with MND and their families too.
Last month, the MND Association agreed to fund Professors Eneida Mioshi and Professor Michael Hornberger, based at the University of East Anglia in Norwich to develop a toolkit (a set of tools for guidance, clinical care, and information) to help both healthcare professionals and people with MND be better equipped to work and manage these symptoms daily.
The first step will be gathering expert international consensus from researchers, neurologists, healthcare professionals and people with MND as to what should be in the guidance information ‘toolkit’. Once the toolkit is ready, it will be tested to see if it is useful and practical in the clinic. The ultimate test will be if it makes a difference to people with MND and their carers in the long term.
Throughout June 2016 MND Awareness Month will be highlighting the rapid progression of the disease in its powerful Shortened Stories campaign, sharing the experiences of people currently living with MND, or who have lost loved ones to the disease, through art, poetry and film.
Will carers be involved in the gathering of information to aid the formulation of the tool kit. People with MND and cognitive problems do not necessarily remember how they got they, and those who are at the beginning do not necessarily realise it. It is often the carer ( non paid) who see the first sighs and I would of thought pivotal to helping developing such a tool kit.
Dear Valerie,
Thank you for your comment. I think that families and carers will be involved at some stage of the project, and some of their thoughts will be integrated into the toolkit design.
Kind regards
Sara Bolton
MND Association Research team