How the Australian residential aged-care system doesn’t care about older people’s emotional needs

All humans have fundamental needs. These are physiological (food, drink, clothing, sleep), safety (emotional security, physical safety, health), love and belonging (friendships, community), esteem (respect, dignity) and self-actualisation (accomplishment, personal development).

For people living in Australia’s residential aged-care facilities, these needs are often not met.

Most residents do not feel they are loved or belong in the facility. Like aged-care resident Neda Borenstein, whose secret camera footage broadcast on ABC’s Four Corners showed her singing the Australian national anthem in bed while she waited more than three hours to be changed. “I’m just a number,” Neda told her carer when she finally returned to help her up.

Less than one-third of residents we interviewed said they were friends with another resident. This means most don’t have the social support associated with friendships. Most residents said they felt socially isolated, which is associated with poor well-being.

A 2016 study of residents’ lived experiences in an aged-care facility found many felt they had little dignity, autonomy or control. Outside of meal and structured activity times, people with dementia spend most of their time stationary, alone and doing very little or nothing.

One study looking at interactions between residents and their carers showed residents were alone 40% of the time they were observed. When staff were present, they mostly did not engage verbally, emotionally or physically with the resident.

Aged-care facilities can also feel psychologically unsafe to residents. Residents with dementia may be locked in secure units or physically restrained, using mechanisms such as bedrails or restraining belts.

Residents sometimes don’t get along. They might argue yell, swear, pinch, hit or push each other. We don’t have good data about how often resident-to-resident verbal and physical aggression happens, but it can result in injury and even death.

The consequences of unmet needs? Residents can react negatively when their needs are not met. They become bored, sad, stressed, cranky, anxious, depressed, agitated, angry and violent.

In people with dementia, we used to call these reactions “behavioural and psychological symptoms of dementia” (BPSD). But people with dementia have been pointing out these are normal human responses to neglect, not symptoms of dementia. Almost all (90%) aged-care residents display one or more of these negative reactions.

In many facilities, staff “manage” such reactions with the use of sedating antipsychotic medications. But clinical guidelines recommend looking at the reasons people may be reacting that way and addressing those before medication.

Needless treatments: antipsychotic drugs are rarely effective in ‘calming’ dementia patients

Half of nursing home residents have symptoms of depression, and a third have symptoms of anxiety. More than half of residents have been found in studies to behave in ways that might suggest they no longer wish to live. This includes refusing food or medication, one-third of residents having suicidal thoughts and a small number of nursing home residents actually taking their own lives.

Why does Australian aged care fail to meet fundamental human needs?

We might not be spending enough on aged care to enable providers to meet fundamental human needs. Australia spends about 1% of its GDP on long-term care – less than the OECD average of 1.5%.

Private investment in aged care is growing, as have residential aged care profits, but it’s a difficult industry in which to make money. Insufficient funding translates to insufficient staff and less skilled staff. Our funding system rewards dependency, and there are no funding incentives for providers to improve the psychological webeing of residents, or go beyond that to help them flourish

Friendships are an important part of healthy ageing. from shutterstock.com

People looking for a nursing home don’t have any independently provided information by which to compare quality or performance.

The National Quality Indicator Program – a program for measuring care in residential aged-care facilities that began in 2016 – was meant to provide information for people trying to compare facilities on clinical indicators of care quality.

But participation in the program is voluntary for providers. Neither quality of life nor emotional well-being indicators are included in the suite of quality indicators (even though one has been trialled and found to be suitable). We also don’t know if or when the data might be published.

What is needed?

We need a fundamental shift in community, government, service provider, staff and regulatory expectations of what residential aged care does. Our model of aged care is mainly about clinical care, while neglecting emotional care.

For instance, friendships are a unique social interaction that facilitate healthy ageing, but many residents told us that the social opportunities in their nursing home did not align with their expectations of friendship.

 

We need our model of care to be a model of a home. In a home everyone contributes, has a say in what happens in the home (such as the menu, interior design, routine and functions), is able to invite their friends to their home for a meal, and can leave during the day and come back at night. A home is a safe place, where people are loved and nurtured, and where they can be active and fulfilled.

Extract from ABC Four Corners program Australia.

(C) ABC Australia

 

 

Mental health help in Australia is a joke

GPs struggle in a system ill-equipped to deal with mental health

I sat in the waiting room staring at my hands, willing them to stop shaking. Anxiety was a fighter jet, roaring through my cells, dropping grenades from head to toe.

When the doctor called my name I shuffled after her, a shrunken version of a self I no longer recognised. Fixing her eyes on a computer screen, she hammered the keys and asked me to explain why I was there.

Our complex emotional pain is being treated with six-minute medicine by time-poor GPs, says Jill Stark.
Our complex emotional pain is being treated with six-minute medicine by time-poor GPs, says Jill Stark.

Photo: Christopher Nielsen

When I told her I was experiencing what felt like an acute recurrence of the depression and anxiety I’d grappled with since I was a teenager she pushed a sheet of paper across the desk and I began to tick boxes.

During the last 30 days, how often did you feel hopeless? … During the last 30 days, how often did you feel so nervous that nothing could calm you down? … How often did you feel so sad nothing could cheer you up?

Ten questions, scored from one to five, with one being ‘none of the time’ and five ‘all of the time’. Under 20 is well. Over 30 is a severe mental-health disorder.

“You got 25, which means you’re only mild to moderately depressed, so there’s not much to worry about,” she said, reaching for the prescription pad before asking if I was suicidal.

I thought about it for a while and said no. “Good. These ones aren’t prescribed very often these days because they’re much easier to overdose on. But you’re not suicidal, so that’s fine.”

Less than fifteen minutes after I sat down I stood on the street weeping. I had no support, no plan for how I was going to make it through the day, armed only with the knowledge that should I want my kill myself the drugs I’d been prescribed were well-equipped for the job.

Journalist Jill Stark.

I wish this was an isolated experience. But since documenting my mental health battles in my recent memoir Happy Never After, I’ve been inundated with messages from people across Australia telling similar stories.

Our complex emotional pain is being treated with six-minute medicine by time-poor GPs struggling to meet demand in a system woefully ill-equipped to deal with the mental health challenges of modern life.

It was revealed in recent days that GP waiting rooms are crammed full of patients with psychological problems.

Research released by the Royal Australian College of General Practitioners found that 62 per cent of people visiting a doctor are presenting with mental health problems – significantly more than any other medical condition.

College president-elect Dr Harry Nespolon said doctors are in an impossible situation, forced to either charge patients for more time to manage these complex problems or wear the out-of-pocket costs themselves.

“As access to psychologists and psychiatrists can be restrictive, to say the least, GPs must not only work as the frontline of support – but as the entire support model, something which is currently not supported by patient Medicare rebates,” he said.

How much longer can we continue like this? When will we stop treating emotional health as the poor cousin to physical health?

We are in the grip of a mental health crisis. We have the highest Australian youth suicide rate in a decade. More people are depressed, anxious and medicated than at any other time in our history. If trends continue, clinical depression will be the second most disabling condition behind heart disease by 2020.

Raising awareness is not enough. The time for wristbands and hashtags has passed. We have learned to ask R U OK but when the answer is ‘no’, too often there is nowhere to go.

Our Medicare system needs to better reflect the times we live in and the health problems we face. Doctors need the financial support to offer longer consultations for patients with complex psychological needs.

And as a matter of urgency, we must stop rationing psychological services to ten subsidised sessions per year.

When I was at my lowest point, I saw my psychologist twice week just to keep my head above water. I raced through my Medicare sessions in five weeks.

At almost $200 per hour, I then had to raise almost $400 a week just to stay in therapy and out of hospital.

There are few other areas of healthcare where we place such arbitrary limits on a patient’s ability to recover.

Through life’s lottery I was fortunate enough to have a supportive employer, and family who could afford to fund my therapy. Without their assistance I honestly don’t think I’d be alive.

Not everyone is so lucky. Many people are no longer here because they couldn’t afford their mental illness. It’s a devastating indictment on a system that is fundamentally broken.

We must demand better. The chances of surviving our emotional pain should not be determined by the balance of our bank accounts.

Lifeline: 13 11 14

Jill Stark is a Melbourne journalist and author of Happy Never After

(c) Fairfax Media Australia.