MND Scotland project highlights need for individualised support for those caring for loved ones with MND

An MND Scotland funded PhD Studentship project has found a need for targeted and individualised support for carers of people living with motor neuron disease (MND).  

The project, carried out at the University of East Anglia by Professor Eneida Mioshi and Dr Polly Trucco, aimed to identify key factors influencing anticipatory grief to better support unpaid family carers and inform future interventions and research. 

Caring for someone living with MND can be emotionally challenging. The progressive nature of the disease means that family carers frequently face ongoing changes and losses in their daily lives, resulting in the experience of anticipatory grief. Anticipatory grief is when someone feels the distress or pain of losing a loved one in the days, months or even years before they die. In carers of people with MND, this process can begin at the point of diagnosis. 

Early findings from interviews with people caring for loved ones with MND highlighted that carers go through an emotional journey during the progression of the disease. This starts with destabilisation and shock at the point of diagnosis, followed by the adaptation to continuous changes and losses experienced and, finally, the acceptance of their new reality.  

Different coping strategies that were shared with the research team to navigate this journey throughout the progression of the disease included learning – or not – about the disease, receiving formal and informal support, and being focused on the present moment. 

To follow up on these findings, the research team conducted further studies with carers to identify what impact various disease – and carer – related factors, had on carer anticipatory grief. Factors such as the hours of care provided by the carer, the relationship between the carer and the person living with MND, the disease severity and the presence of behavioural symptoms were considered, and the researchers found that behavioural symptoms and disease severity had the greatest impact on carer anticipatory grief.  

The final study looked at carer psychological inflexibility (a rigid response to the circumstances the person now finds themselves in, which does not align with one’s meaningful values and actions) and noted that this can also affect the anticipatory grief experienced by carers. 

Overall, the project has found that behavioural symptoms and disease severity in the person with MND, along with the resultant changes and losses carers experience, are the main causal factors of anticipatory grief. Additionally, carer-related factors, such as psychological inflexibility and contextual factors, such as the support they receive, were identified as potential influencers of the intensity of grieving emotions.  

The findings highlight that a number of factors contribute to carer anticipatory grief and there is a need, therefore, for targeted and individualised support for carers of people living with MND. 

Dr Jane Haley, Director of Research at MND Scotland; “MND is a brutal disease that currently has no effective treatments or a cure. That’s why it’s so important that alongside funding clinical research, we fund research that looks at the best way we can support everyone impacted by the disease.  

Angela Harris, Director of Support Development at MND Scotland; “A diagnosis of MND is far reaching and affects everyone in the family unit. This study highlights the need for tailored support from the outset for those caring for loved ones in order to help them understand the changes they are experiencing and, hopefully, provide a variety of coping mechanisms.” 

Dr Polly Trucco: “This research highlighted a major gap in support available for family carers of people living with MND. While the search for a cure continues, providing evidence-based services to ensure carers are also cared for is key. This support could ease carers’ journey and help them navigate this challenging path with greater wellbeing. Even small gestures that bring comfort could make a meaningful difference.” 

Prof Eneida Mioshi: “This project not only produced timely scientific outputs to better understand carers’ support needs in MND; it also enabled Dr Trucco’s completion of her PhD. Polly is an occupational therapist by background, and now an MND clinical researcher. It is absolutely fantastic to know that MND Scotland is investing in the next generation of applied MND researchers, helping us ensure that all affected by MND receive the support that they need”.