While people with motor neurone disease (MND) are very grateful for the support of their families, they can sometimes agree to things they may not necessarily want, such as life-sustaining interventions, because they feel obliged to follow the wishes of their loved ones.

MND is the name given to a group of diseases in which there is progressive degeneration of the motor neurones in the brain and spinal cord. Motor neurones are the nerve cells that control muscles, and their degeneration therefore leads to weakness and wasting of the muscles.

This causes an increasing loss of mobility in the limbs and difficulties with speech, swallowing and breathing. There is currently no cure for the disease. Around 110 people are newly diagnosed in Ireland every year and over 300 people and their families are currently living with the disease.

According to a new study by Dr Geraldine Foley of Trinity College Dublin (TCD), previous research in this area has tended to focus on the burden placed on caregivers, however MND patients often experience ‘carer burden' as a result of the obligation they feel towards their family carers.

"We found that terminally ill patients, in our case MND, were grateful for family support. However, patients' perceived responsibilities towards their families meant that they agreed to family preferences for symptomatic, supportive or indeed life-sustaining interventions, simply out of obligation to family. People with MND also experience emotional strain in a care-giving role," she explained.

The study found that despite their illnesses, people with terminal conditions can provide substantial emotional support to their families and can make decisions about their care.

Dr Foley's study found that the terms ‘caregiver' and ‘carer burden' are usually only linked to the experiences of family members and other carers, rather than with the experiences of the person who is ill. She said that increased attention needs to be paid to the carer burden experienced by those with MND.

She also believes that healthcare professionals should play a bigger role in assisting patients to negotiate family obligation when it comes to decisions about care.

Details of these findings are published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, which is the official journal of the World Federation of Neurology Research Group on Motor Neuron Diseases.