New Zealanders are fortunate to have Eldernet to turn to when it comes to seeking information about our aged care, home care and retirement systems and the various providers within it. Sites like Find a Rest Home and Village Guide also provide a wealth of information on the respective sectors, and advocacy sites like Age Concern serve a useful purpose too.
But two new initiatives are delivering a complementary service to customers, one that strives to understand and meet the specific needs of a person, taking into direct account the details of their situation and that of their family.
Thesis to Transition Navigators
Consider this real-life scenario: an 85-year old man’s wife had a stroke. As they were past the threshold for government funding, he had to pay for her care in a rest home, which cost $1000 a week. They had to sell the home they’d built to retire in and he moved into rental accommodation near the rest home which cost $500 a week. When asked what his plans were in the event his own health deteriorated and he was unable to visit his wife, his response was, “I don’t know. I haven’t thought about it. I can’t afford to think about it.”
Conversations like this were the impetus behind Transition Navigators, says Robyn Johnston.
As part of her Masters research, which looked at how older people made decisions about transitioning from their family home to retirement or aged care facilities, Robyn interviewed 35 older people in different living situations ranging from living in their own homes, to living in a retirement village to in an aged care facility.
The response of the 85-year old man was typical of the responses she received from those living in their own homes, she says.
All of them said within the first five minutes of the interview, some variation of “I want to be carted out of here in a box”.
“Their idea was that they were going to be healthy, then wake up dead. There wasn’t going to be any deterioration that they couldn’t cope with.”
Robyn points to research that shows that if people are going to adapt, they have to be open to change and thinking about a Plan B. Interestingly the men she interviewed had no other plans, while the women reluctantly had a Plan B.
“That’s how the business has grown,” she says, “because there’s a need for helping people make plans. It might not be that you need to shift right now, but its having that conversation where you’re not a family member, you’re not emotionally connected, that says ‘ok, what are the signs that you would recognise that actually I’m not coping.’”
“It might bring them to acknowledge that this cold house that I can only carry two pieces of firewood into at a time, and I can’t really climb up the steps to get in, and so on, is not really working for me anymore.”
By contrast, those she spoke to who lived in a licence to occupy retirement village unit felt they had more autonomy. They were making the choice not to do things, like mow the lawns. What’s more, their accommodation was likely to be more appropriate for them than their own home.
Robyn is frustrated at the Government’s insistence that remaining in the family home is the best option.
“There is a real pressure to ‘age in place’ but ageing in place is the place where we choose.”
Robyn points out that many older family homes are often poorly insulated, with old-fashioned heating and are hard to maintain.
“It’s not a push to get them into villages, but it’s about needing to have all the information so that you know you’re making the right decision.”
The way things currently stand, people will often remain in their own homes until a health issue sees them suddenly in Older Person’s Health. They’re then told they’re going to be discharged in three days’ time but directly into rest home care. And they never get to go back home again. They may only last a short time after that, as they struggle to adjust to such a traumatic change. It is difficult for families too, who are left scrambling with decisions around advance care plans and what to do with the family home.
“But if we could get them to make good decisions around themselves then they would be healthier and there would be less cost to the country. So why would we keep promoting that the best thing for you is staying put?” asks Robyn.
Transition Navigators got going last year. At present Robyn is juggling the business with her PhD research on the wellbeing of older people.
She has a number of people trained up around the country who can help. Some have been assessors for DHBs, some have nursed parents for a long time, some have helped elderly parents go through transitioning – all have a good understanding of the system and how to help people navigate the right path for them.
Let the culture inform the care
Like Transition Navigators, Care-Metric’s new programme Care Transition is also underpinned by research, but the main inspiration came from Jan and Marian Weststrate’s visit to De Hogeweyk dementia village in the Netherlands.
They were struck by how the village allowed people the chance to spend the final months or years of their lives living in a culture similar to what they have experienced for their whole lives. And they believed the model could be equally effective for older people with other care needs.
“It rang a bell for Marian and I and we thought, ‘we need to do something’,” says Jan, “We know that every rest home in New Zealand is certified, but that doesn’t mean that every rest home fits your culture.”
They spent some time in the Kapiti Coast talking to people about their experiences of moving parents into rest homes. This confirmed what they suspected: that typically what happens is, the first available beds are filled without any consideration for whether that facility is the best fit for that person.
And so Jan and Marian, who operate Care-Metric, launched Care Transition at the beginning of this year with the aim of assisting older people and their families to find an aged care facility that best fits their culture and care needs. They investigated similar programmes in Australia, but found them to be more about focused on navigating the system, rather than focusing on the needs and cultural fit of the person.
“Not every aged care facility is the same in New Zealand,” says Jan, “We have facilities that look like hotels and ones that operate more like homes and all the variations in between.”
“It depends very much on the culture people have lived in their whole life where they feel at home and how they want to spend the remaining years of their life.”
Jan points to research from Vernooij-Dassen and De Lange which found that older people want to maintain autonomy, reciprocity and dignity as long as possible when they are in care.
“How these three elements are operationalised can be different for different people and at different stages during their ageing process,” says Jan, “It can be a challenge for aged care facilities to respond adequately to these changes.”
Of course, in a small country like New Zealand, in some parts of the country there might be little choice available for people who want to remain in their community or close to family members.
Jan says that all these factors need to be taken into consideration. How important is it to remain close to family? How important is it to be in an environment that fits the cultural and lifestyle needs of the person? What bearing does the person’s current cognitive state have on these factors? All this needs to be weighed up when making a decision.
“If we can take some of the burden off families in not only helping to navigate the system, but helping to find the facility that has the right culture, then we’re happy to go the extra mile for them,” says Jan.