Caring for someone with a chronic illness like MS can be deeply satisfying but also physically and emotionally exhausting.
Given the diversity in disease presentation and progression, people with MS require a broad and diverse range of support that often includes care delivered by family and friends. Recognition, acknowledgement and support for the vital role of carers is a crucial component of maintaining the carer in this role.
As the National Disability Insurance Scheme rolls out, and as changes are made to the aged care and health sectors, carers are even more critical. People with MS and their carers want useful information and advice, and together must navigate these sectors.
Recent Statistics on Carers:
According to a recent study commissioned by MS Australia and undertaken by KPMG (that surveyed 2,261 people living with MS and 135 family members and carers) it was found that:
- 87% of people living with MS state they have someone (unpaid or informal) who is their main source of support. For over half of people, this is a partner or spouse. Respondents in the family members and carers survey were most likely to be an immediate family member. It was reported this person most often provided some sort of daily emotional support (69%), rather than physical assistance. The primacy of this informal support is an emerging service need and consideration at all stages of the MS journey.
- 79% of carers report that caring has an impact on their emotional wellbeing.
- Family members and carers reported that services focused on the persons living with MS. They seek direct information about how to support the person, rather than receiving information second hand. 45% of carers are paying for health professionals support. This is where there is the most demand.
- Tailoring assistance to informal supporters is a key emerging service need.
- The majority of those who identified as carers reported that they were employed either full time (61%) or part time (16%) before they started providing care for someone living with MS. When asked about their current employment status, only 30% of carers were employed full time and 11% part time.
There are 25,600 people with MS in Australia (as per the Health Economic Impact of MS in Australia 2017 report), and if we apply the 87%, this means we can estimate that there are 22,272 MS carers across Australia.
Practical support and information:
The State and Territory MS organisations provide excellent carer information, such as living with MS, symptom-management, primary carer training, carer camps, in-home and residential respite, how to access equipment, benefits and services, and agency referrals.
For state and territory links, please visit the MSA homepage and scroll down to the map of Australia and select the state where you live:
The Federal Government Carer Gateway portal has information, resources and links to local support services for carers:
Carers Australia is the national peak body representing Australia’s unpaid carers, advocating on their behalf to influence policies and services at a national level. It works collaboratively with partners and its member organisations, the Network of state and territory Carers Associations, to deliver a range of essential national carer services. Their web-site contains many useful links to helpful resources.
You can read their article on the New Australia-Wide, Carer Regional Delivery Services Announcement here:
Other MS-specific information for MS carers:
The MS Australia web-site contains a great deal of practical information regarding symptoms, treatments, wellbeing and lifestyle that carers may find useful in caring for someone with MS. For example, for those caring for someone newly diagnosed with MS, the guide “Understanding MS” may provide a useful starting point for an overview of MS.
To read some stories about carers in the MS community, please visit MS Australia’s blog site, Uninterrupted and search for “carer”:
A guide to end of life caring:
If you are the carer of someone who is approaching their end of life, information can make a difference to you and the person needing care. CarerHelp resources can help you to understand what to expect.
Tell us what you think:
If you are caring for someone with MS and you feel you need some information, resources, services or support that would help you, please let us know, by email to: firstname.lastname@example.org