We need a ‘real rethink’ about how we care for others

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With the focus on treatment, have we forgotten the importance of care?

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Maria Fiatarone Singh’s voice is racked with dismay as she recalls a patient she visited in a nursing home recently. 

“We found him strapped into a chair but also on five psychotrope medications that were basically making him nearly comatose,” she says of the man who has both Parkinson’s disease and dementia.

In a macabre merry-go-round, the man was falling constantly because of the drugs, and because he was falling he was strapped to the chair. 

Fiatarone Singh, a leading geriatrician from the University of Sydney, asked the man’s doctors to take him off the drugs that were sedating him and suppressing his appetite, leading him to lose 15 kilograms in a matter of months. 

“He’s gone from needing a hoist to lift him out of bed to getting up on his own, walking 50-60 metres without assistance,” she says of the man now. “He comes to our gym three days a week and trains on our high-intensity weight-lifting machines. He is still demented, but he would have died very, very shortly.”

The drugging and strapping down was intended to make him safe. It was well-intended, but it was also heartbreaking and unnecessary, Singh says.

“You get fined if someone falls over and breaks their hip, but it’s not a terrible thing to tie him down with psychotropic medication somehow,” says Singh, who believes a “real rethinking of what we’re doing” is required. 

“I’m trying to let them allow him to have a bird to take care of and a plant to water because that will be the best thing for him, during the times he’s not with someone.”

This is because giving care is just as vital as receiving it, as is having a sense of purpose, autonomy and pleasure as we age.

“Making people safe is not necessarily what they want – they want to be valued,” Singh says. “They would rather fall over and be loved and loving than tied down in a geri chair and not be allowed to fall over. We’ve moved away from physical restraints but simply replaced them with pharmacological restraints.”

As it currently stands, it is little wonder many of the 170,000 Australians in aged care feel as though a part of themselves “is lost”.

We are an ageing population, all heading in the same direction, but the picture painted of  life as we near the end is rather bleak. 

Physical treatment is provided but too often there is little consideration for the human or their quality of life.

One aged care resident told Fairfax last week that she had spent $800,000 on a deposit to get her room and yet received meals that looked liked regurgitated vegetables on a pallid piece of toast.

Those with dementia are just given the kitchen slops.

In aged care facilities, psychotropics are frequently used (their use is even higher among those with dementia), up to 80 per cent of residents have chronic pain and about 40 per cent are suffering depression. People who have been married for 60 years are not allowed to sleep in the same bed and beloved pets are forbidden for hygiene reasons.

“No one ever died of cat hair as far as I know but lots of people die every day from loneliness,” Singh remarks. “Not allowing people to have a care-giving role is really detrimental to them physically and mentally.” 

Similarly, by trying to keep people safe via physical or psychotropic restraint, telling them when to get dressed, what to eat, when to take pills and who they can sleep beside or touch, we remove autonomy.

“I think we have completely misconstrued what’s important in people’s lives,” Singh says. “A sense of autonomy prevents us from allowing that in our own lives and yet we impose that on other people. We  think we’re doing good for them because we’re keeping them safe … ironically, we’re destroying the last years of their life and the ability to contribute to people around them.” 

Dr Bill Thomas, a Harvard-trained geriatrician, is vocal in his belief that people are being treated rather than cared for and they are dying because of it. 

“He said what we need to give back to people is the ability to care for others and love others,” Singh says of Thomas. “He brought in plants and animals and all sorts of other things. He showed that, by doing that, he was able to reduce mortality and infection rate and increase happiness … the idea was giving back the ability to care for others and be a part of something that was bigger than themselves.” 

This applies even to those with dementia, which is about 85,000 of those in aged care homes.

“Somebody who is demented – all they have left is the moment,” Singh says. “So, if I put my hand on their shoulder and touch them, will they feel that human touch? Will they perceive the smile on my face or will they feel happy if they hear a piece of music or taste a piece of chocolate. Is there any pleasure in this moment right now?” 

If there is joy, then there is quality of life. 

“The ways we’re trying to be helpful are imprisoning people in ways that aren’t necessary and not allowing them the humanity that they have left,” Singh says.

“At the end of your life your universe shrinks. At least in that little universe that you have left, you should be the king of that universe. You should be the master of that universe, as small as it is, in whatever way you can still make choices – about what you eat and what position you’re in and who you touch. That’s the dignity we’ve taken away from people.”

September is Dementia Awareness Month. Find out more here

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