Better care for carers: a new way forward

October 19, 2014

When freedom comes to people who’ve cared for a loved one with dementia or illness, you’d think they’d opt for some well-deserved “me” time. Travel, work, fun, and hobbies beckon. At the least you’d expect them, once a relative is in a nursing home, for example, to run a mile from anything that reminds them of the carer’s life, often a 24/7 grind of selfless service and worry.

But some people are choosing to use their experience as carers to help others. Perhaps they’re faced with a social void, or a burning desire not to waste their hard-gained knowledge. For whatever reason, a pool of veteran carers and former carers is out there willing to be tapped.

And along has come a program called Weavers which is capitalising on this great resource. It’s matching people with caring experience to carers still immersed in the daily struggle. It’s not your ordinary run-of-the-mill volunteer program where middle-class do-gooders can find themselves in sticky situations, under-trained and of marginal use. The Weavers program is based on a rigorous research process and is co-designed by carers themselves.

Australia’s 500,000 primary carers have the lowest collective wellbeing of any group in society, a 2007 report by Deakin University found. On average, carers were found to fit the clinical definition of moderately depressed. Many carers don’t see themselves as ‘carers’. It’s just what they do for a loved one with dementia, disabilities, or ill health. They may not go to carer support groups to meet others in the same boat. They quietly struggle with the relentless pressure, the service maze, and the guilt. It’s a group in need of help, and the lobby group Carers Australia has done much to raise its profile.

But the people at the The Australian Centre for Social Innovation (TACSI) in Adelaide believed more could be done. TACSI was established in 2009 with seed funding from the South Australian government to tackle big social problems in new ways. Its first initiative was in child protection and its unique Family to Family program is now spreading around the country. The idea for the Weavers program emerged after time spent with over 100 carers. Many were struggling but some had navigated the hard times and managed well.

Penelope McMillan 58 had simultaneously cared for two adults: her son who’d been disabled by a devastating work injury nine years ago when he was 18; and her aunty who suffered dementia. Penelope was the official guardian for her never-married aunty who phoned her at least 20 times a day. “Quite often I was being torn in two,” Penelope told me. “Do I do this for my son or dash out and do this for my aunty?” But after her aunty went to a nursing home, Penelope found Weavers, re-igniting her old career as a psychologist to help provide early feedback on the program. Then she stayed on as a volunteer Weaver, working one-to-one with carers. “I’d had a long history of voluntary work and I missed it,” she said. “And I’d been in a very stressful caring situation and felt strongly motivated to support others in difficult situations.” As well, Weavers provided great flexibility, deep rewards, and after years of “giving, giving, giving, TACSI cares about my welfare as a volunteer, and makes me feel noticed and appreciated,” Penelope said.

The Weavers program had an intense gestation period where professionals, carers and the cared for worked together on its design. “Most consultations start with the presumption that the people being consulted know what they want,” said TACSI chairman Nicholas Gruen, a prominent economist. “But often they don’t know how to fix something. This was a creative act between all the parties.”

The result is a program based on evidence and standing on firm foundations. The Weavers undergo formal training but don’t need counselling experience. After being matched, a Weaver helps the carers, usually in home visits, work out their priorities. Usually, it’s practical assistance that’s needed first. “One carer family had been told that unless they became pushy and aggressive, there was a two-year wait for an Aged Care Assessment Team,” said Penelope. “I was able to advise the family to be honest with their GP about how difficult the situation had become…..Within three weeks they had a high level of in-home assistance.”

After practical assistance carers are shown how to instigate conversations with family members and friends to get the specific help they need from them. And finally come the deeper conversations about the emotional roller-coaster of being a carer. In the fantastic Weavers video, Jill speaks with moving honesty of caring for her husband of 57 years: “It’s just not really what you signed up for,” she says. “Cruelly it feels like house arrest and I feel quite guilty about that.” But the strategies she learnt from her Weaver, Carla, helped her to keep going.

The director of TACSI’s positive ageing program, Kerry Jones, said Weavers encourage carers to tell their carer stories, and then to identify their own strengths and coping strategies which can be drawn on in future crises. Carers get support for up to 15 weeks, and virtually none has proven overly demanding of their Weaver. “That’s the reason carers get stressed out, they’re generally not very demanding people,” Kerry said. Currently Weavers operates only in Adelaide and welcomes inquiries from potential Weavers or carers there. TACSI aims to roll out the program, through a licensing arrangement or other means, to organisations across Australia.

Here’s a link to information on carer support groups. And a link to beyondblue’s Guide for Carers.

What sort of help have carers found useful, and not useful? Please leave a comment.

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