If you are an unpaid carer supporting someone with MND, this guide is designed to help you look after your own wellbeing. It provides information about carers' rights, assessments and services, and how to manage difficult emotions that you may feel when facing the demands of the caring role.
This guide was announced Patient Information Resource of the Year 2016, by the British Medical Association at the BMA Awards, and also won the Self Care category in the same year.
It has been regularly updated with expert guidance, including contributions from people living with or affected by MND.
See below for the full version of the guide or separate sections. Click on the image or heading to download the item you want.
You can also order the guide in printed format from our helpline, MND Connect.
Caring and MND: support for you (interactive)
An interactive online version of the guide. This allows you to click on the content headings or the index page numbers to quickly access the subject matter you want.
Caring and MND: support for you
A standard online version of the guide, without the interactive content page and index.
Section 1: New to caring?
This section looks at what it means to take on a caring role and some of the things you may need to think about.
Section 2: What to expect?
This section provides an overview of MND and the care that may be required.
Section 3: Your rights as a carer
This section provides an overview of your legal rights as a carer and how these are governed.
Section 4: Carer's assessment
This section looks at how to get your needs assessed as a carer and how this can lead to support.
Section 5: What kind of support is available?
This section looks at the types of care and support available to help you in the caring role.
Section 6: Work and financial support
This section looks at things you may need to think about if you are juggling work and care, or need financial support.
Section 7: Making sense of your feelings
This section explores the feelings, emotions and reactions you may experience when supporting a partner, relative or friend living with MND.
Section 8: Looking after yourself
This section suggests ways to think about your own wellbeing when supporting someone with MND.
Section 9: Support for children and young people
This section provides guidance to help you support children or young people who are close to the person with MND or become involved in care tasks.
Section 10: Beyond the caring role
This section provides support if you no longer need to give the same level of care to a person with MND or your caring role has come to an end.
Section 11: How the MND Association can help you
An explanation of our services and how they can help you as a carer, including our Carer's Grant.
Section 12: Useful organisations
The organisations in this section may help you begin your search for further support if you need specialist services.
Keeping notes
These write-on pages are included in Caring and MND: support for you. You can download extra copies here and print them if you need to make further notes.
Page last updated: 24 August 2022
Next review: January 2025