Multiple Sclerosis (MS), is a chronic, progressive condition that causes a host of symptoms, including vision loss, pain, fatigue, cognitive changes and impaired coordination. Many MS symptoms are unseen. The impact of MS on those diagnosed is life-changing and relentless. But what is often less considered, is the impact on family carers, many of whom provide extensive, selfless support over many years.
An inestimable cost
The level of contribution provided by family carers is staggering. However, the biggest costs are those that can’t be estimated.
The 2018 Census identified that there are 432,000 unpaid carers, or 14% of the adult population. According to the November 2022 Infometrics report, The economic contribution and sacrifices of unpaid family, whānau and aiga carers in New Zealand, the number of unpaid carers, “people who care for friends, family, whānau and aiga members with a disability, health condition or illness who need help with everyday living,” is more likely to be over 50% higher today – more than 655,000 people. This hidden workforce, may be undercounted, or because many consider it to be part of their family responsibility.
According to the New Zealand Institute of Economic Research’s (NZIER) Economic Burden of MS Report 2021, commissioned by Multiple Sclerosis New Zealand (MSNZ), the total cost of MS family care contribution in 2021 was estimated to be $27.5 million. The number of hours contributed by family carers of people with MS each month ranged from 20 for a mild case, to 150 hours for a severe case – the equivalent of between 240 hours and 1,800 hours of informal, unpaid care annually.
The results of the August 2022 report, The State of Caring in Aotearoa, from a survey undertaken by Carers NZ and the Carers Alliance, which MSNZ is a member of, highlights the personal financial and wellbeing impacts on family carers. The substantial unpaid contribution from family carers across New Zealand, including MS carers, was calculated to have an economic value of more than $17 billion a year. The significant social and family cost is immeasurable.
What is also incalculable, however, is the strain placed on the carers themselves, both financial and otherwise. Family carers across New Zealand have lower rates of employment than the general population, with only 21% in full-time work and 23% in part-time work. Half of all carers are forced to give up or reduce paid work, leaving many (59%) struggling financially to pay bills and forced to cut back on essential items such as food and heating for their family (30%).
Financial strains aside, many MS family carers face other severe impacts and challenges resulting from the range of symptoms of the condition. Family carers have to shoulder the burden of mobility challenges, continence needs and painful/debilitating physical symptoms to mental health issues and grief over the condition.
Just like the loved ones they care for, family carers are dealing with their own grief, loss and uncertainty. MS places a significant toll on relationships, as both those diagnosed and family members grapple with the changes in roles and dynamics that a chronic progressive health condition can bring. More than 40% of family carers have their own health conditions and disabilities while supporting someone else, while more than 70% experience anxiety and depression.
It’s little wonder, then, that 48% of carers report to be really struggling, or needing emergency respite. But, while respite services provide carers with a much-needed break to support their own physical and mental health and wellbeing, there is a critical shortage of these services. This is particularly so for those under 65 or requiring hospital level care. This situation has significantly worsened since the Covid pandemic, with almost 90% of carers indicating they have had less respite since the start of the pandemic in March 2020.
Providing support to carers
Supporting family carers of people with MS is essential so they continue doing the life-changing work they do. Support is not only required for the day-to-day challenges they face now, but also essential in the long-term for carers of working age, to allow them to earn and save for retirement. Currently, 20% of carers are not able to save at all for retirement, while 34% have had their retirement plans negatively affected.
How can you help? Supporting Multiple Sclerosis NZ by way of a financial donation or a gift in your Will, enables the organisation to continue to provide information, advocacy and moral support for tired and overworked family carers long into the future. A donation will also allow MSNZ to work with the Carers Alliance, raising issues that impact MS family carers. Your support will help advocate for better respite systems and funding so carers can have the breaks they need to stay well, to keep going. Donations will also provide resources and education to Regional MS Societies who support family carers in their local communities.
To lend your support, visit or donate at www.msnz.org.nz. Or donate directly to the Multiple Sclerosis Society of New Zealand via bank account number 02-0500-0355668-00.
For more information contact MSNZ on 0800 67 54 63 or email firstname.lastname@example.org