Support, guidance & advice for todays primary carers
Speak up for – not over – your loved one
Advocating – or speaking up – for a friend or family member doesn’t mean doing “what’s best for them.” It means asking that person what they would like to happen and listening – really listening – to what they tell you. You might not agree with the choices your friend or family member makes, but age doesn’t disqualify them from the right to make mistakes and to learn from them.
If you think something they have chosen to do – or not do – might cause them harm, it’s important to talk to them about the potential consequences of that decision. And substitute decision-makers – for example, a guardian or power of attorney – have obligations to act in the person’s best interest. Service providers are required to take reasonable steps to prevent foreseeable harm which is known as “duty of care“. But duty of care must be balanced against the older person’s right to dignity of risk.
“It’s too easy for families and others to come in and take over because they think they know what’s best for you – especially when you have a diagnosis of dementia”Gwenda Darling, a member of the Older Persons Advocacy Network’s National Older Persons Reference Group.
“If I lose my voice, if I am not heard, I feel like I am passed my useby date.”
“I might as well give up, because I am no good to myself or to anybody else.”
For Ms Darling, the ability to make her own decisions is integral to her sense of self-respect.
“It’s about maintaining your own power; the power you have had all your life,” she says.
“To maintain my independence, I need to be allowed the dignity to take the risks that I believe are safe for me.”
“People assume you don’t have wants and needs when you don’t have a voice.”
“It’s a way of creating a space for yourself to age well.”
In Ms Darling’s case, that means living in a rainbow-coloured house in rural NSW. A cleaner, a social support person and a gardener are some of the services that enable her to do so. Most people retain the ability to make their own decisions for their entire life. But as we age, almost all of us will need varying degrees of support.
Supported Decision Making
It would be hard to find anybody who didn’t struggle with the challenges presented by the aged care funding system. And a lot of people need help with information technology – often from children or grandchildren. People with cognitive conditions, such as dementia, need more formalised assistance. But it’s rare for anyone to be incapable of making any decisions for themselves. While someone may not have the capacityto understand the extent of, and manage, their assets, for example, they can still make decisions about where they want to live and who they wish to spend time with.
Supported decision-making, which is endorsed by the UN Convention on the Rights of Persons with Disabilities, enables them to do this. Meadbh Flavin, whose mother, Theresa, was diagnosed with early on-set dementia in 2017, is an old hand.
“To me it means helping and supporting another person to make a decision without doing it for them by showing them different options and the consequences”
Theresa Flavin, who is also a member of OPAN’s National Older Persons Reference Group, explains supported-decision-making from her perspective.
“Sometimes I need some help … reminding me of all the little things my brain no longer takes into consideration,” she says.
“Gradually we just embedded [supported decision-making] into our lives so that all the decisions are more cooperative now.
“The decision may need to be broken down into discrete parts to help us to make it.”
One of the added bonuses of the supported decision-making model is that it relieves the carer of some of the responsibility of making a decision on somebody else’s behalf.
Advocating – or speaking up – for someone you care for
To speak up for yourself and others about aged care services, you need to know what you can reasonably expect from those who deliver them.
Information about your rights – and the rules and regulations that apply to service providers – is key.
Professional aged care advocates frequently use tools like the Charter of Aged Care Rights and the Aged Care Quality Standards to resolve problems. You can, too.
Aged care services should:
- give you what you need
- give you the right information
- help you understand that information
- let you make your own choices
- listen to you
- make you feel safe
- have staff who know how to do a good job.
When something is not right, or not working for you, it’s okay to speak up. Most service providers will want to find a solution. OPAN’s Self-advocacy toolkit provides the tools and resources you need to speak up.
Tips for carers
- It’s important to involve the person you support in decisions about their lives. It’s a basic human right. It also enables that person to maintain their dignity, independence and self-respect.
- It’s easier to make a decision if you break it down into parts – particularly for people with conditions that cause even mild cognitive impairment, such as Parkinson’s disease. You might need to explain things more than once. Make sure they have the information they need to make an informed decision – this will include benefits, risks and likely consequences of making a decision, or of doing nothing.
- Pick your moment! That means identifying patterns of behaviour such as energy troughs. Don’t try and make big decisions when the person you support is likely to be tired.
- To be clear about the wishes and needs of the person you support, practice reflective listening. This is a communication technique in which you focus on what the speaker tells you (through words, tone of voice and nonverbal cues) and communicate that back to them to confirm you understood their message correctly. “What I heard you say …”.
- You might not agree with the decision of the person you support. Try to be aware of your own bias. Discuss the possible consequences of their chosen course of action. Duty of care means taking reasonable steps to protect someone from foreseeable harm but that must be balanced against dignity of risk. The right and choice to take risks is an important part of maintaining someone’s dignity and self-respect.
- Do your homework. To effectively advocate for the person you care for, you need to understand their rights. You also need to know the tools you have at your disposal to ensure those rights are being upheld. For example, how to make an effective complaint. It helps if you can “speak the same language” as the people who provide aged care services. Once you understand the funding rules and regulations, you can identify what services you need in a form the age care system can provide.
Case study one
Leona’s, husband, Bill, lives with dementia. As his enduring guardian, Leona was concerned by Bill’s rapid weight loss after entering residential care (he dropped two trouser sizes in almost as many months).
A regular visitor to the aged care home, she often sat with Bill at mealtimes. She observed his indifferent reaction to the food he was served. She also noticed Bill’s enthusiasm for any treats she brought with her, such as fruit.
Leona raised the subject with the clinical care manager during a review of Bill’s care plan, suggesting bland food and small portion sizes were a major contributing factor to his weight loss. The clinical care manager arranged for Leona to meet with the aged care home’s chef. The chef asked Leona and Bill what sort of food he liked to eat and promised to increase Bill’s portion sizes. Bill’s menu has been adapted accordingly. He now eats his dinner with relish. And he is back to a healthy weight.
Case study two
Ama became socially isolated following a health setback. While medication alleviated her symptoms, her confidence was severely shaken. She stopped attending exercise classes and going out for coffee with friends. She began to experience anxiety attacks. Ama’s daughter Roni felt her mother would be better off in residential aged care, but when she talked to Ama about it, Ama became distraught.
They decided to call an advocate who had supported Ama in the past. The advocate told Roni about the ShortTerm Restorative Care Programme (STRC) which is designed to help people regain the ability to carry out the activities of daily life. The daily physiotherapy visits funded by the 12-week rehabilitation program provided regular social contact for Ama outside her immediate family.
The regular exercise further improved Ama’s physical and emotional well-being. She slowly regained her confidence, first with visits to the supermarket, then social engagements with old friends.
For further information, or to speak to an advocate, call 1800 700 600 or go to opan.org.au
Summer 2023 Out Now
Care & Ageing Well Expo Melb 2024
Carer Gateway is an Australian Government program providing free services and support for carers. Call Carer Gateway for support and access to services, Monday to Friday, 8am to 5pm local time.
Assistance with accessing emergency respite is available any time, 24/7.
Sleepless Nights: Solutions for Sleep Problems
Aged care season and why we need to talk about it
Inclusive Adventures: Navigating Travel with Those You Care For
Is your loved one eligible for home care supplements and subsidies?
The power of positive ageing