Carers report paints 'worst wellbeing picture' ever seen

Laura James
Source: 1News

Kiwis acting as family carers have described they "no longer feel like a member of society", being "invisible" and "housebound", in the largest survey of its kind in New Zealand.

The findings, released to 1News first, suggest only a third of carers are satisfied with their lives and a shocking 70% have high levels of depression or anxiety.

About the same number reported feelings of loneliness.

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David Todd, one of the report authors from consultancy firm Synergia, said: "Overall it was 66% of our respondents in the survey that said that they or sometimes or always felt lonely.

"In the general population, that's 3.4%, so it's roughly 20 times higher amongst the carer population."

Todd was particularly concerned about the loneliness reported by carers under the age of 35.

"There are more and more younger carers out there now, it's not just the domain of adults and older people.

"There's a real danger of creating quite a long-term issue here."

The State of Caring survey of more than 1600 carers was carried out in 2021 by Carers NZ and the Carers alliance.

According to the latest census, 430,000 Kiwis act as carers but Todd said that number could be higher if you take a broader definition.

Some of those who fulfil the role in New Zealand may prefer words like "supporter" or "manaakitanga" over the title of "carer", but they're defined as being individuals that care for someone close to them who needs additional assistance with everyday life, he said.

This can be due to disability, a health condition, illness or injury.

Carers' unpaid work is worth $16.8 billion a year, equating to 5.1% of GDP.

Synergia's report on the survey results found almost 65% of respondents have been carrying out the role for more than five years.

Half of those who took part care for elderly people, and 20% care for two or more people.

Almost 85% of carers surveyed were women.

Carers NZ said one of the findings that stuck out is that only 21% of those surveyed can work full time and a third can't do any work at all.

The report says many carers (59%) cannot pay their bills without struggling financially and 15% are living in debt because of their need to be a carer.

To cope, a third of carers are even cutting back on essentials such as food and heating.

It's estimated carers are collectively out of pocket by over $300 million per annum due to expenses related to caring.

"The amount of people making comments like they're they're going without food to be able to provide for their families, those sorts of things, were really concerning," Todd said.

He said it's a particular issue for women.

"They make up a huge proportion of the carer population and actually not being able to save for your retirement, not being able to plan for the future, puts a huge burden on on women."

Wellington woman Anne Gilbert said she can relate to the findings.

She gave up her professional career 30 years ago when her son was born with Down Syndrome.

"The stress is huge and it goes on and on and on," she said.

Looking ahead to retirement she says she can't see the way forward.

"You can't afford to go out for dinner with your friends let alone put money away for the future for your retirement."

Gilbert said she's now looking at moving from her home in Wellington to Greymouth to be closer to other family support and cheaper living, to cope.

Neil Woodhams is the carer for his wife Erin, who lives with Multiple Sclerosis.

He's not sure what the future holds for them either.

"My own health has suffered without a shadow of doubt."

"During Covid, I hit the wall mentally at a point where we had no outside help."

He says he sees other carers struggling every week through his work as president of Multiple Sclerosis NZ.

Todd said Synergia has completed over 1000 projects in the last 20 years across all areas of the public sector, and concerns around carers have been a key finding across the board.

"You can see it's a bit of a cycle," he said.

He admitted many of the comments made by carers completing the survey have stuck with him.

"Some of the ones that probably stuck with me the most we couldn't really put in the report cause they're actually... too concerning almost.

"There's definitely a few words that you wouldn't put in a public report."

Social Development Minister Carmel Sepuloni said: "we have made some progress over recent years but there certainly is progress that needs to still be made.

"I think we've got a really good opportunity because actually our carers strategy action plan has to be renewed next year."

She says the report will help inform that.

But Carers NZ chief executive Laurie Hilsgen said that's not immediate enough.

There are 12 recommendations in the report, asking for "authentic, urgent, long-term investment in carers".

"Our country’s respite system is broken and under-funded, so people can’t have adequate breaks," Hilsgen said

"Not many carers can get paid for their role even though they may have given up paid work to care.

"A choice to care and help someone in our family is a choice to be poor, and to experience unacceptable wellbeing impacts that are affecting high numbers of New Zealanders."

The State of Caring survey will be repeated every two years to track how family carers are faring.