Family carers ‘work’ 100-hour week, according to charity’s new report

Carers of people living with motor neurone disease (MND) are spending more than double the hours of an average working week caring for their loved ones, new figures suggest.

Research* conducted by the Motor Neurone Disease Association has found that a third of unpaid carers (33%), often family and friends, spend more than 100 hours a week caring and nearly half (45%) don’t receive benefits to help support them in their vital roles.

Alarmingly, it also found that 62% of carers have not taken any planned breaks, even for as short a time as two hours. One carer said:

“This is an emotional/physical role changing me from a wife to a carer which is so very very sad. To watch the strong person you love fade away and become more dependent is painful. Awful disease it takes away everything.”

Carers Week 2019 (10th -19th June) raises awareness of caring and highlights the challenges that carers face, as well as celebrating the contribution they make. It also helps people who don’t currently identify themselves as carers access support.

This year Carers Week is looking specifically at helping carers get connected. Carers often find it challenging to take care of their own wellbeing, and the impact of caring on all aspects of life from health to financial worries should not be underestimated, according to the MND Association.

Findings within the report showed that over 40% of carers who responded worry about money, and nearly 60% feel stressed as a result of caring. It also found that more than half are physically and mentally exhausted.

A carer of someone living with MND said:

“Give me help to cope with the psychological and practical problems that I have along with my caring role.”

Nick Goldup, Director of Care Improvement for the MND Association said:

“It is distressing to see the huge number of carers who are working over 100 hours a week, many with little or no benefits to help support them. It’s extremely upsetting to realise that those caring for their loved ones are also experiencing financial worries, exhaustion and huge impacts on both their physical and mental health.

Through our communications with carers and the support and information section of our website we try to raise awareness of rights, whether it’s a carers assessment or benefits and allowances. We also seek to provide information, offer grants to improve their quality of life, and connect carers with others in their local area through our Branch and Group network.”

As part of its support to carers the MND Association is trialling a volunteer role focussing on supporting carers and past carers of people with MND called Carers’ Champions. These volunteers will build up knowledge of the services available in their community, liaise with carers to identify what issues they face, explain how the MND Association can support them. The volunteers will also identify and create opportunities to bring new, existing and past carers together.

To find out more about becoming a Carers’ Champion visit the web page or to request an application form contact the Volunteering Team at

To find out more about Carers Week visit

*Research conducted by the Motor Neurone Disease (MND) Association (2019), sample of 604 carers of people with MND.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262