Looking after a loved one with motor neurone disease (MND) can have a significant toll on carers’ wellbeing, both physically and emotionally.
Research has shown carers often experience high levels of depression, anxiety and grief, as well as increased loneliness and helplessness, and a decreased sense of self. These issues can be more severe for those who care for people with MND than for other neurodegenerative diseases, perhaps because the disease can progress so rapidly and unpredictably.
This can in turn have an impact on the person caregivers are looking after, affecting their emotional wellbeing and potentially being a factor in whether they can continue living at home, how much paid carer support they require, or if they move to a care facility.
Now a review led by neuropsychologists at Salford Royal Hospital, part of Northern Care Alliance NHS Foundation Trust, has identified which key psychosocial issues have been explored in past research looking at ways to help – other than medication.
Senior author Dr Nicolò Zarotti said: “We identified 10 main outcomes, including caregiver burden, anxiety, depression, and quality of life. However, we observed a lack of studies addressing important outcomes such as resilience, problem-solving, self-efficacy, mindfulness, coping, isolation, and loneliness, as well as lack of consensus on the conceptualisation of outcomes such as caregiver burden.”
The authors hope that shining a light on these gaps will prompt further research and eventually lead to the development of a psychosocial Core Outcome Set (COS) – a standardised group of outcomes that should be reported by future trials in this field to make comparisons of different approaches and treatments clearer. It is similarly hoped that such information will lead to better, more effective support for people with caring responsibilities for those with MND.
Dr Zarotti added: “This work will also complement a recent initiative led by our Consultant Neuropsychologist Dr Selina Makin aimed at developing an MND Psychological Wellbeing pathway within Greater Manchester in partnership with the MND Association and the local Neurorehabilitation and Integrated Stroke Delivery Network (GMNISDN).”
The paper Non-pharmacological interventions for caregivers of people with motor neurone disease: A scoping review of psychosocial outcomes has been published in the journal Brain Sciences and can be accessed for free here. The authors are Chidera Okoh, Leighanne Mayall, Dr Selina Makin and Dr Nicolò Zarotti from NCA, and Dr Cliff Chen from the Walton Centre in Liverpool.