by Amal Awad
I’ve heard that in Britain a minister for loneliness was appointed to tackle the isolation experienced by more than one in ten people in the UK. Elsewhere, headlines scream that loneliness can be fatal: ‘Loneliness kills; Former surgeon general sounds alarm on emotional wellbeing’ (Boston Globe); ‘Loneliness could kill you’ (The Conversation in the US); ‘What loneliness does to the human body’ (The Cut). A pharmacist I spoke to, Gerald Quigley, affirmed this: ‘People die of social isolation. That’s been clinically proven.’
Having been told by several aged care workers that conversation and company were unofficial duties, it was interesting to hear Martin talk about their approach – one that focuses on the qualities of the person who will work for them. ‘We’re looking for people who can actually build relationships with their clients. Clients have that social isolation. They want to converse, they want a relationship, they want trust, and so we train our own caregivers … We take them right the way through to a national qualification.’
And this is another significant point: often, when elder abuse arises in conversations, workers blame inadequate training, not helped by a poor salary.
I appreciate that Martin is running a private business in ‘consumer-directed care’, but he makes a lot of sense. And what he talks about is generally in line with what other people I spoke to said about the delivery of aged care services. It’s a complex area.
Martin considers Home Instead as rare in the industry. ‘We have been very different to other organisations. When we came into the industry, we deliberately chose not to get involved in government services.’
He says the organisation has never taken funding from the government. ‘It’s all been through two areas. One is private services. The other one has been through those organisations who are funded by the government. They come to us and say, “Home Instead, can you please deliver these services to our clients?”’
As of February 2017, the government system was deregulated. No longer do providers tender to government for funding; money goes directly to the client, in a similar system to that of the NDIS. ‘The client now has the choice. The client is now controlling those funds. The client can determine which organisation they want to have delivering those services. The client can say, “No. I now want you round at four in the afternoon. I want you at three in the morning,” and all these sorts of things. The client is in control. It’s completely turned the industry upside down. As a result of that, the industry is having to respond.’
Em, the healthcare support worker, believes a privatised system filters out flagrant abusers. Private businesses, he says, have an interest in doing well. However, with government, it’s about ticking boxes, and things fall through the cracks. Martin agrees (though his bias should be noted). ‘The government system was broken. It was absolutely broken,’ he says. ‘I’ve done everything in my power to meet with every person possible, at ministerial, prime ministerial level, to say to them, “It’s broken.” I’ve presented at conferences to say, “It’s broken.” As a result, not myself, but certainly coming into the market, we could see as clear as could be that there was a problem.’
The industry lobbied, advocated, Martin says, and should be commended. As an approved provider, Home Instead benefits. People receiving government assistance can now elect for care from Home Instead.
It will take time for the system to really work for those in it. But there is a sense of expansion and possibility, the hope that recipients will have greater control of how they live.
Dimi Vourliotis is the senior manager for Aged and Disability Services at Advance Diversity Services (ADS), a non-profit organisation that provides support for CALD (culturally and linguistically diverse) people who wish to remain living independently at home. She is more reserved than Martin about the changed funding apparatus.
‘We used to receive our funding in a pool,’ she says. That is, one hundred clients meant ADS received one hundred clients’ money in a pool every month. In 2010, a pilot program was launched around consumer-directed care. In 2015, anybody who came into aged care had to have their money as consumer-directed care, which meant that the client managed the funding that the government gave to ADS, plus a small contribution. This enabled them to have access to the services they wanted.
‘We may have thought that they wanted showering five days a week, but the client’s said, “No, I’ve never showered five days a week. I want a shower Monday, Wednesday and Friday, and I want to use my other two days to go somewhere else, to do something else; prepare a meal for me.” So they’ve got a lot more control.’
And they can buy other services and products – lawn mowing, incontinence pads, equipment, things that previously were restricted. ‘Now they can use that money for their health.’
Dimi isn’t dismissing the system. It has its strengths, and it functions. It does mean, however, that ADS is more limited because the money isn’t pooled. ‘You’re restricted and limited to the money that you get from the government. But consumer-directed care is working, and that’s the way of the future.’
Beside Dimi is Mikall Chong, chairman of the ADS board, whom I first met at a talk given by the Age Discrimination Commissioner, the Honourable Dr Kay Patterson AO – ‘Will you still need me?’ – for Affinity, an interfaith group, in which she pointed to three primary areas of concern: elder abuse, older women at risk of homelessness, and the ageism that impacts employment opportunities for older people. When I asked the commissioner during question time about CALD communities’ needs, Mikall raised his hand and explained how ADS services CALD communities. ‘We have a whole spectrum of services, and each department deals with a specific area,’ Mikall says.
ADS supplies personal-care services to people over sixty-five. Social support is also an important part of ADS’s offerings. The organisation caters to multicultural communities. Senior day centre programs are ethno-specific and run weekly to fortnightly. They cater to Arabic, Greek, Italian, Macedonian, Chinese, Bangladeshi, Maltese and Nepalese communities, to name a few. ‘We deal with thirteen languages. We provide a day out for them,’ explains Dimi, who herself is from a CALD background – her parents are Greek. It’s a respite day for carers. ‘[But it’s] also as a social interaction for the client, who gets to be with another person who speaks their language, are similar age and culture, of course, and they get to make friends. What it does is diminish social isolation in a short space.’
Access to these days out, as with any other service, depends on the client’s funding, meaning their condition and what they’re eligible for. Activities are purely social: buffet lunches (the most popular outing) or, weather permitting, morning tea in the park. ‘A couple of weeks ago we went to Bowral for the flower festival,’ says Dimi.
When discussing the role of families managing ageing parents’ needs, it’s here, often, that conversations diverge into cultural and gender factors at play in the lives of the elderly.
Aged care workers I spoke to talked about the strength of Asian communities’ robust family ties – it’s simply accepted that parents will age in place, surrounded and supported by family. Other people, medical professionals included, told me that you see the whole spectrum of behaviour, across cultures.
Dimi, however, says that while there may be language-related issues, culture isn’t the obstacle to peace: she reiterates that the major challenges for people in old age relate to their freedom and state of mind. ‘Depression and [lack of] independence go hand in hand,’ she says firmly.
She elaborates: ‘People don’t access these services because they want to, it’s because they have to. They’ve come to a stage in their life where they’re no longer able to look after themselves a hundred per cent, so they have to access services … People get sick, people go into residential care, people are separated from their friends, their community, their contacts. With that comes some sort of loss and grief, and from that stems illness. So if the grief is not dealt with, it festers, where then a person is unwell.’
I’m not alone in believing that this downward spiral of emptiness begins as people wind down their working lives, during which, regardless of the politics of the workplace and the commutes they once complained about, they were forced into more social settings, and probably benefited from them. A recent VOX video piece talked about how people who travel on public transport for their commutes generally live longer than people sitting in their cars, alone with their thoughts. People, people, people – and remaining active. These are everything in a time of life that may feel increasingly isolated, with a future clouded by uncertainty.
But Dimi notes that it’s not ADS’s job to manage their clients. ‘When people come to us they’ve already been seen by psychologists, aged care assessment teams.’ ADS will, however, help people from CALD backgrounds to navigate the My Aged Care portal if they face language barriers. An assessor for ACAT continues the process. ‘[The] original assessment person goes out and sees them. They do about a two-hour assessment with them, where they talk about what their illnesses are, what their medication is, why they contacted My Aged Care, and it could be as simple as maybe they only want there to be the social support. They’re lonely. Their best friend can’t drive them anywhere anymore, and they want help with a trip up to the shops, and they can’t go on their own because they can’t get on and off the steps of the bus. That’s a simple case.’
More complicated cases see greater needs around the home, and for the person undertaking simple tasks. ‘There’s so many things that we take for granted every single day that we do automatically. You get up in the morning, you make your bed. You go and make your breakfast. Some people can’t do that anymore. They can no longer manage.’
Following an assessment, applicants are placed in a queue. ‘But you could be waiting in a queue for three years,’ says Dimi.
Not only can it take years to get assistance, the funding is spread thin. Dimi quotes a government estimate of 11,000 packages since the deregulation in February 2017 – across the whole country. ‘It’s a user-pay system now, where the government says, “If you can afford it and you’re a self-funded retiree, go buy it.”’
Mikall and Dimi say these are things the government doesn’t talk about. It’s a competitive business, and the big providers are in a better position for survival. ‘We don’t have three thousand packages. We’ve only got a hundred,’ says Dimi.
It doesn’t help that sometimes family expectations can be unrealistic around what My Aged Care can provide an elderly person. And, she adds, My Aged Care itself is a difficult system, burdened by inconsistencies, too cumbersome for many of the people it’s designed to assist.
‘We’re supposed to be medicine managers’
Increasing responsibilities as a carer, or of any kind, can feel intimidating and even lonely. But there is an inordinate number of services and people who can provide helpful guidance to improve everyone’s quality of life. As a former journalist in the pharmacy industry (and a frequent visitor to a local one with my folks), I believe pharmacists are an untapped resource.
‘I’m talking to elderly people all of the time,’ says Sarah, a co-owner of a suburban pharmacy. ‘And I’m seeing sickness; I’m seeing people becoming unwell; I’m seeing children looking after their mothers and fathers, and the toll it takes on their family, on their life, on their marriages, on themselves; and it’s always in the forefront of my mind.’
As a pharmacist, Sarah is attuned to the way ageing and illness change people’s lives, the burdens they can involve, and what solutions exist to ease the situation.
Sarah is also in a business that allows her to form long-term relationships with her patrons. ‘I lost two patients last week and it was very sad, but because I’m in pharmacy I see the children coming in and getting the medications for their dad. One with a newborn baby, and her dad had cancer and the child is only three weeks old and she had to move in with her dad and spend six months looking after him. And then he has died and she has just given birth and it’s very hard.’
Pharmacy is different to other professions, continues Sarah. ‘When you go to see a doctor, or when you see a specialist, or when you see a solicitor, or when you see a speech pathologist, or when you see a physiotherapist – all these people, you are paying them for their time. So they can set aside half an hour, one hour of their paid time and you can see them. A pharmacist isn’t like that – we get paid according to what I sell you.’
It means that they’re time poor, but they are available. Sarah talks about Home Medicines Review (HMR), where patients are referred by a doctor to a pharmacist. Pharmacists go into people’s homes. ‘We go through their cupboards, we throw out all of the expired medications. We say, “Bring out all of your medications … Oh, you’re not on that, you’re not on that, you’re on this, how are you taking that, do you know what that’s for?” [They tell us] “I’m getting up five times a night to wee.” “[We say] That’s because you’re taking your diuretic at night – you should be taking it in the morning.”’
Pharmacists are paid for this service, but it’s a role that requires extra training, staying up to date with Continuing Professional Development points and getting accreditation. The pharmacist will then send a report to the referring doctor, which will include any recommendations. There are also MedsChecks, which can be done in the pharmacy itself. An initiative from the government, it doesn’t require accreditation or a doctor’s referral. ‘So it’s almost like a mini HMR,’ says Sarah. A patient will go into the pharmacy armed with their medications and, in a special area of the pharmacy, will have a discussion with the pharmacist. It’s not as in-depth as an HMR, Sarah explains; it takes about fifteen minutes.
‘I go through their medications; I confirm that they know what they are taking their medicines for, they know how they are taking their medications. I am having a quick look to make sure that there are no interactions, they are not taking vitamins that I don’t know about, vitamins that can potentially interact with their medication.’
Sarah identifies clashes. For example, someone on antidepressants went to a health food shop and came out with St John’s Wort. St John’s Wort is a vitamin and can be effective as an antidepressant, but it interacts with many things.
Given how much medication some people are on, it’s a valuable service. Another one on offer is the provision of Dose Administration Aids (DAAs), popularly known as the ‘Webster pack’ (a patented product). The government is pushing for greater use of the packs, subsidising pharmacists to provide them. They take time – Sarah employs a pharmacist to work on those alone. She’s seen all sorts of situations with the DAA – there are people taking it up, others being encouraged by their children but the parents refusing it. ‘So all scenarios are not unusual, if that makes sense.’
The reluctance can stem from the desire not to relinquish control. A patient knows exactly what they’re taking, when and why. ‘I am often recommending Webster packs to the elderly, especially when they can’t remember if they have taken a medication, or if they get very confused.’
For Gerald Quigley, pharmacist, master herbalist and health commentator, the relationship with patients is where pharmacists are too often failing. ‘There’s two aspects of visiting a pharmacy. You go and buy something, you might even go and have a medication being dispensed. But it puzzles me that the dispensing process has become just that. A process … We’re supposed to be medicine managers. Medication management is one of our big things we hang our ticket on. Come to us, we’re free, we’re available, we will help you manage your medication. I don’t see that happening.’
‘Why do you think that is, though? Is it just time?’ I query.
‘No. Time is an excuse. You make time. If you value your career [and] you’ve chosen pharmacy or medicine or any of those things, part of that is responsibility. To first of all do no harm, that’s a little Hippocratic oath the medicals take. You do no harm and you encourage the person to become a partner in their ongoing choice to b
e as well or as sick as they want to be. And I think there’s a whole cohort of Australians who don’t know what it’s like to feel well anymore.’
Health has become very clinical and very medicalised, Gerald argues. ‘Now, when a person talks about health, the implication is that there’s a problem. And that problem needs to be treated immediately with something.’ A headache, for example, shouldn’t simply invite a dose of Ibuprofen. Questions should be asked: like, is it today, or day after day?
‘Because the simplest solution for headache is just to drink some water. The most common reason people get headaches is just dehydration. Often it can be the fact that they’re magnesium deficient [which can cause muscle cramps], so they tense up because they might be humped over a steering wheel, humped over a computer screen, in a position that they don’t really move from, and they get a headache. But then you put dehydration in there as well. So no one has the time in engaging.’
Engagement is especially relevant with an older person, Gerald says. ‘Older people don’t think as quickly, they don’t understand as quickly. Names are so long, medications they take have got such long, unpronounceable names, and everyone’s in a hurry. People speak quickly, they want to give instant solutions. The pharmacy these days has gone from an opportunity for a pharmacist to engage with a person and enquire as to their ongoing wish to be as well as they can, to now being, “Here’s your prescription, it’s going be three or four minutes, there it is, take it down the front and pay, please, before you go.” And that’s the process.’