This is blog number 6 in our ‘Symposium Blogathon’ – counting down to the 32nd International Symposium on ALS/MND. Numbers in bold green type correspond to the code in the abstract book. Click on the number to be redirected to the full abstract (the page may take a minute to load).
Being diagnosed with an illness like MND can be overwhelming for both the person with MND and those close to them. The challenges ahead are likely to cause emotions that are difficult to manage. Personal circumstances, culture and beliefs will affect response, and each experience is individual, but natural responses to a difficult diagnosis are to be expected.
Many symptoms and practical problems can be eased with the right support. This can reduce worry and help manage challenging emotions when they arise. Talking therapies, cognitive behaviour therapy (CBT), mindfulness techniques, and complementary therapies can all help.
Caregivers need support too to help them face the challenges ahead. Finding ways to work together as a team, being aware of each other’s mood, having open conversations and sharing feelings can help. We will be looking at presentations specifically focusing on caregiver support in the next blog in our Symposium Blogathon.
Supporting emotional well-being
Researchers from the University of Southampton and the University of Bristol have developed an online self-help psychological intervention to help support people with MND and family members deal with the emotional impact of MND. Called Coping and Living well with MND (CALM), the intervention/website draws on techniques from CBT, acceptance and commitment therapy (ACT) and mindfulness and was developed using insights from research involving people with MND and family members. In this poster presentation (COG-16), Cathryn Pinto will discuss how the website was developed and the feedback that has been received. This work was funded by the MND Association.
Emotional and psychological support for people with or affected by MND
People with MND and their family members face significant psychological adjustments related to increasing disability and a shortened lifespan, including increased depression and anxiety. It is unclear whether psychological interventions should be prioritised to those in most need, as is currently seen, or offered more broadly to include those with lower distress levels. Given the challenge of MND, even those with no obvious signs of psychological stress might benefit from interventions to support emotional wellbeing and psychological resilience. Researchers in Australia aimed to compare people with MND and their carers with high versus low depressive symptoms, and to compare these groups after engagement with a mindfulness intervention.
Measurable benefit from a mindfulness-based intervention was seen among those with increased depression. Where there are resource constraints in provision of psychological interventions, they should be targeted towards those with mental health symptoms. A longer follow-up period would be needed to examine whether mindfulness interventions are protective of future distress in later stages of MND (COG-20).
In her presentation, Dr Miriam Galvin from Trinity College Dublin, talks about ‘IMPACT ALS Europe – A European Survey of People living with ALS’ (C14). The IMPACT ALS Europe survey collected data from over 1,500 people living with MND and their caregivers from nine European countries on the burden of disease, psychological distress and the loss of function over the disease course. The aim of the survey was to improve understanding of the functional burden of disease in MND to ensure that the patient and caregiver voice is included in the development and evaluation of new therapies. Dr Galvin will discuss the outcomes of the survey.
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Take a look at the schedule of blogs for November as we continue counting down to the 32nd International Symposium on ALS/MND with our ‘Symposium Blogathon’.
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