Better balance of rights and risk in dementia care needed: expert

The aged care and health sectors need to urgently tackle how to deal with human rights versus duty of care for people living with dementia, according to an Australian dementia expert.

The aged care and health sectors need to urgently tackle how to deal with human rights versus duty of care for people with dementia, according to an Australian dementia expert.

Service providers need to grapple with the question of whether people with dementia had the same rights as other care recipients, said Dr Susan Koch, principal research fellow at the RDNS Institute.

Susan Koch
Dr Susan Koch

The life of a person with dementia in formal care was increasingly determined by risk management rather than by what might be their social or therapeutic best interests, said Dr Koch, who formerly co-chaired the first Ministerial Dementia Forum.

She is calling for a national conversation on the issue through an open discussion that puts people with dementia at the centre of talks with majority representation, rather than token inclusion.

“When we are talking about policy development, we have to get the people in the know, not the organisations that you are trying to protect. The people in the know are the people who have dementia,” Dr Koch told Australian Ageing Agenda.

“We have a big opportunity now because of early diagnosis, intervention and early onset to talk to these people and include them.”

Dr Koch’s comments follow a dementia masterclass recently hosted by RDNS Institute at the University of Melbourne, which canvassed the issues under the title of ‘Safety Versus Autonomy’.

The event brought together international and local experts, researchers, clinicians, lawyers, aged care and health executives and about 80 people with dementia and carers to explore balancing risk when an individual has a cognitive impairment and duty of care when providing care in the home.

Dr Koch said she hoped the masterclass, which looked at international best practice and the undertakings in the UK, helped to start the discussion that participants could continue back in their workplaces.

In Australia, some providers dealt with the issue well while others could learn lessons, such as handling the situation as early as possible, she said.

“From my perspective the intervention on the individual’s rights usually happens because something has been allowed to escalate; a situation that gets out of hand.”

That might lead to a person being physically or chemically restrained or even just having their rights overrun, sometimes by families, she said.

“Everyone is doing what they consider the best interests of the individuals. It still means there’s an impact on that individual’s rights; that right to be involved in their care.”

Rather than waiting for a situation to escalate, and to help address the tension between duty of care and autonomy, Dr Koch said service providers could talk to people living with dementia early on to understand how they would like situations handled.

RDNS Masterclass speakers
RDNS Institute masterclass speakers

The masterclass illustrated the issue was not straightforward, with many things to consider just from a legal perspective, she said.

“Certainly what came out of it is how every individual – health professional, carer, person with dementia – interprets what is meant by risk. You can’t just have one perspective. What is risk for one is fun for another.”

She said people were taking risks all the time, especially those living in their own homes, but action was often taken once this impacted on health professionals or home visitors who felt uncomfortable.

“Someone who is at high risk of falling and sustaining an injury, do you put them in cotton wool for five years not allowing them to do anything spontaneous or do you let them live their life knowing that there is a risk?”

Dr Koch said they might be prepared to take the risk, and that was the conversation that organisations, individuals and families needed to have.

Tags: duty-of-care, rdns-institute, rights, susan koch,

3 thoughts on “Better balance of rights and risk in dementia care needed: expert

  1. The rights of an individual often conflict with a providers’ duty of care; restriction of movement and choice of medical treatment are two common issues. (Along with food safety restrictions for serving fresh eggs and whole strawberries)

    Does an individual’s right to unrestricted movement trump a provider’s obligation to prevent absconding?

    Surely the determination of an individual’s capacity is central to resolvingf these conflicts? But this is where things get murky.

    There is no single legal definition of capacity (In NSW)

    An individual’s capacity may fluctuate and can be subject to rapid deterioration

    A finding of incapacity in one area doesn’t automatically mean that capacity is lacking in others.

    Medical and legal personnel are often reluctant to make determinations on capacity.

    However, once capacity is determined it’s easier to then make care decisions that may impact on individual rights. Perhaps this is something that requires attention?

    There will always be some thorny issues though…until everyone drags themselves into the 21st century, restraint will continue to be a problem. Capitulating to realtives who demand we stop Granny falling down and care staff that pretend they have the ability to do so usually results in someone being tied up. (Will you all just stop it! Buy some low-beds, ensure adequate staff coverage and have the temerity to tell people that you cant fight gravity)

    Most of our residents have taken more risks in life than we ever will…and they made it this far without the help of an accreditation agency.

    Government policy shouldn’t replace common sense…ask the banking regulator if the right to succeed and the right to fail are equally valid.

  2. Wonderful article, eloquent and articulate. What really struck a chord with me, is for us, that is, all Australians to be involved in A National Conversation about values and respect for older people. To have a dialogue about ..what does autonomy mean, how do I want my life to look like in the future..how to ensure safety safely..
    What is evident in our society, is that there is a lot of fear around these important issues.
    Lets be brave and open up the dialogue..

  3. Bus trips – should a person who has good and bad days in a wheelchair be told they are not safe to go on a bus trip for one hour, the wheel chair is locked in, there is a seatbelt in place and a care worker sitting beside her, I was told by management this resident will not go on the bus as they may slip out of the Wheelchair.

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