We ask the experts about the challenges facing dementia care in Australia, and how to overcome them.
Each week, more than 1700 people in Australia are diagnosed with dementia. As our ageing population grows, it’s expected that this number will reach 7400 new cases each week by 2050.
Dementia is now one of Australia’s National Health Priority Areas, earning a significant financial investment into improving care and services over the next three years. However, whilst this funding has been welcomed by those working in dementia care, there are challenges that need to be overcome to achieve the desired outcome.
Here we talk to three experts about the challenges and how to overcome them: Professor Alistair Burns, national clinical director for dementia in England at the Department of Health; Colm Cunningham, director of The Dementia Centre, HammondCare; and Glenn Rees, chief executive of Alzheimer’s Australia.
Debunking the stigma
“In the UK, dementia was the most feared illness for people over the age of 55 – more so than cancer and heart disease,” says Burns, who recently spoke at the International Dementia Conference in Sydney. “There was something about the stigma and fear.”
In Australia, the figures are similar. According to Alzheimer’s Australia, 60 per cent of Australians say they would feel shame if diagnosed with the disease.
“I sometimes wonder if it is stigma or social avoidance,” Rees adds. “People feel embarrassed when they talk to somebody who can’t remember what they might have said five minutes ago. And I also think some people might not be able to confront the notion of dementia in somebody else because it may affect them thinking about their own mortality.”
Ten years ago, Rees says, organisations such as his own would have asked for government funding to launch a public awareness campaign about the disease; however, he says that’s no longer the answer. Instead, creating social action around the disease and dementia-friendly societies is the best way to debunk the stigma.
“Forcing people – both those with dementia and society in general – to engage with people is important. That’s why our campaign is called Creating a Dementia Friendly Country.
“Dementia is as much a social disease as it is a medical one, and things like social interaction, getting access to services and being able to go to banks or other retail outlets and get treated in a civilised way if you can’t remember why you went there are vital.
“If you have mentoring schemes where people can go on with their social activities, or volunteer to part-time work, you start to get a changed attitude or mind, and that’s important,” Rees continues. “Most people throughout their lives want to feel that they have some purpose, they want to relate to people and they have some sort of self-respect, and the way to continue that is through a dementia-friendly approach.”
Understanding triggers behind behaviours
“A big problem when it comes to dementia care is that it’s highly individualised,” HammondCare’s Cunningham says. “Our challenge is not to get complacent just because we think we’re in dementia care all the time.”
Cunningham says this is especially important when it comes to behavioural issues.
“We are seeing trends of people being referred to our Dementia Behavioural Management Advisory Service and to the Dementia Centre’s consultancy service, where in fact their behaviour is a result of responding to something like unmanaged pain.
“One of our biggest challenges is that there are so many reasons and ways that someone with dementia may be responding to the complexity of the care system, and we have to understand that. If someone is feeling agitated because they cannot find the door to the toilet, or the outside space, that is a problem of our creation.
“And when we talk about dementia care, we often talk about people’s relationships or how they respond, and the things that happen to us when we’re younger affect us in how we respond and when you add dementia to that, it can be seen as challenging behaviour.”
About 25 per cent of people in residential care are given antipsychotic medication, often as a form of chemical restraint.
“I think we have moved on quite a lot from the scenario of the person who becomes agitated and is prescribed something to keep them quiet,” Burns says.
However, there is a lot more that can be done.
“It comes down to person-centred care and treating people as individuals and understanding their stories, and sometimes seeing that agitation as a means of communicating something,” Burns says. “Understanding what it is about a person’s experiences and background that makes them behave the way they behave is important.”
“We have to get better at supporting carers,” Cunningham says. “We all recognise the number of people who are going to live with dementia in the future, and family carers are the only way we are going to be able to support that. We cannot build enough care homes, and I think this is one of the biggest challenges facing us in the next couple of years in Australia.”
The current respite system also needs to be overhauled, Rees says. Dementia carers are 10 times more likely than other carers to say they need respite, but not use it.
“Respite is fascinating, because you can achieve respite in so many ways,” he says. “And respite should benefit the person with dementia and the carer. We’ve been advocating for some years for a major trial that would give cash to the carer rather than services, so that the family carer could decide the best way of achieving the result they want.
“We think this would be particularly good in respect to … rural areas. The keynote for respite care is flexibility and we think that would be best achieved by cashing out.”
There is an urgent need to improve the quality of dementia care within residential aged-care facilities to ensure that the basic human rights of people with dementia are protected, Alzheimer’s Australia says.
“There are a number of strategies that we have set out, but at the highest level the challenges are the way you fund residential care, and the leadership of care organisations,” Rees says. “Some manage very well to respect the rights of older people and people with dementia and deliver person-centred care, and others clearly don’t.
“We think it’s important to do things like design audits so that care providers can take stock of whether their facilities are well-designed, administration and monitoring of medication is correct, and staff training in terms of psycho-social approaches and avoiding restraints is up to date.
“But the first thing, sadly, is to have the interest of government and the industry to make quality a real priority in aged-care reforms,” Rees continues. An action was due to happen on July 1 “in terms of quality indicators and residence experience, but that has been put back at least a year now. Our concern is that quality has now been put on the backburner.”
Residential homes aren’t the only places where there is a need for improvement.
“Consistency [in home care] is also important,” Cunningham says, pointing to a British case where the carer of a loved one with dementia counted 116 staff she encountered whilst caring for a year.
“The care staff going into the community needs to know the person and how to read that person, otherwise it will break down very quickly and we will have people ping-ponging in and out of acute hospital care and emergency respite beds,” Cunningham explains, “which is highly ineffective, expensive and not to mention highly disruptive and eroding for the person with dementia and the carer.
“Think of being on the receiving end as a carer, where you don’t know who you are going to get, or whether you are going to have to start all over again. We should have some measures in place and alerts about how many individual staff can be sent into each home to provide home support. We recognise the importance of consistency in residential care.”
Ensuring health priorities are met
Alzheimer’s Australia says dementia needs to be addressed within a public health framework that includes action to achieve timely diagnosis and improved dementia care in acute care, access to palliative care services and risk reduction programs.
Only one-third of people who have dementia receive a diagnosis during their illness.
“One of the things we are keen to have is a renewed National Dementia Action Framework that will provide a plan for action in the health area, and the context for spending the additional money that is available through the aged-care reform for timely diagnosis and dementia care in hospitals” Rees says. “We have got to carry forward sensible implementation of health priorities in the context of aged-care reforms.”
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