By Linda Belardi.

Aged care providers have called for more robust guidelines on the long-term use of antipsychotic medication and increased education for GPs and nursing staff to address the widespread and controversial use of chemical restraint in care.

In public hearings to a parliamentary inquiry investigating the care and management of people living with dementia and the behavioural and psychiatric symptoms of dementia, Denise Edwards, Service Development and Improvement adviser at Blue Care said unnecessary prescribing of psychotropic medication increased the risk of falls, which could lead to premature death.

To improve practice, Ms Edwards recommended a national program to measure and benchmark patient outcomes in dementia care, similar to the current Palliative Care Outcomes Collaboration or PCOC program.

In her evidence to the committee, Ms Edwards stressed the importance of a person-centred approach to care for people with dementia and also drew attention to the importance of language and addressing the stigma attached to dementia.

She said the widely used term ‘Behavioural and Psychological Symptoms of Dementia’ or BPSD – which is contained in the inquiry’s terms of reference – should be avoided.

“This terminology can detract from the individuality of the person living with dementia and subconsciously begins the process of labelling, which can result in negative attitudes towards the disease and the person living with the disease,” Ms Edwards told the recent senate committee hearing in Canberra.

She said the term encouraged the assumption that everyone who has dementia will exhibit certain behaviours. Ms Edwards said many behaviours perceived as concerning or challenging occur because individual needs are not being met by staff.

“This is commonly overlooked in the aged care industry and behaviour is often seen purely as a symptom of dementia and so no action is taken to improve the situation and improve the quality of life for both the person and their carers,” she said.

Understanding what has triggered the behaviour is key to preventing behaviours and supporting the person living with dementia, she said. 

Sue Pieters-Hawke, Co-Chair of the Minister’s Dementia Advisory Group said societal attitudes of dementia had not “crept out from the shadows of the medieval demonisation of people with mental and behavioural differences.”

She told the committee that language used both in the community and in aged care often described people living with dementia as ‘a problem’, as ‘aggressive’ or lacking any capacity. 

“The language and the perception of people rob them of humanity, dignity and respect and accord a sort of capriciousness to their behaviour,” she told the committee hearing. 

Ms Pieters-Hawke said the level of social stigma underscored the need for a widespread public education campaign on dementia to overturn negative biases and misconceptions. 

Glenn Rees, CEO of Alzheimer’s Australia said while additional funding in residential aged care was important, cultural change was the bigger challenge.

He said through Montessori training techniques and psychosocial approaches, improved standards of care could be achieved.

Mr Rees said funding for the Dementia Behaviour Management Advisory Service (DBMAS) needed to be doubled.

Angela Raguz, General Manager of Residential Care at HammondCare told the inquiry that specialised units with dementia-specific environmental design, as opposed to ad hoc, generic services in mainstream aged care represented best practice care for people with severe behavioural and psychiatric symptoms of dementia.

“A program approach means that specialised aged care psychiatry services are in support, that there is specialised training and that there are specialised environments that are small with individualised care,” said Ms Raguz.

She said focused programs could draw on specialist expertise involving a psychogeriatrician, clinical nurse specialists and highly trained care staff that provide continuous review and care to people with dementia.

Blue Care and HammondCare also discussed the difficult situation faced by providers when families rejected the risks of chemical and physical restraint and asked for this approach for their loved one in care.

The Senate Community Affairs Committee inquiry is ongoing and is due to hand down its final report on 12 August.

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  1. Culture change needs to be viewed as much more than simply “applying” a few psychosocial techniques or methods. No amount of techniques will work without a change in culture.
    Culture change is about paradigm shift – about moving from the physical/task-oriented/diagnostic culture to a focus on relationship as being at the heart of care. Quality appropriate care which addresses the whole person grows out of relationship.
    This shift of course cannot be limited to staff. While training is important, training of staff without change at facility and corporate level is ineffective.
    Interestingly, it is these conversations in the field of dementia which are pointing the way to good quality care for all older adults in residential care.

  2. Agree with all of the above, however none of this will be achieved with the current staffing and funding cuts occurring in aged care facilities right across this nation. I am an EN and have worked in aged care for most of my nursing career and have seen a concerning backward focus on both staffing levels and funding restrictions occur in recent times. This is in conjunction with an increasing demand from all levels on the nursing, caring and lifestyle staff who work in the aged care sector. When you are working in a residential care setting with 22 or more residents all suffering from various degrees of dementia you need highly trained professional staff who can give the person centred care. There is no safe staff ratio within aged care so the general rule of thumb is economic rationalism. So you may at times have a ratio of one staff to 22, maybe up to 4 at other times The dollar is what dictates the current culture. Just ask an aged care worker. The issues raised above are a clear indication of a system that is struggling to cope. The entire culture has to change but primarily within the govt funding bodies and the aged care provider managers.The punitive approach the funding bodies take is so outdated. They need to get over the blame game. If standards are not met it is more than often the case that there simply is not enough staff. END OF STORY.

  3. I’m glad that this inquiry is underway. I hope they do address some of the issues. It goes way beyond the use of antipsychotic mediations. Although in some cases it maybe necessary i.e if they display distressing visual and auditory hallucinations and paranoid delusions which can be common in CJD.
    The issue I have is with the ACFI funding. Not enough funding goes towards behavioural needs which require more money, time and resource. A consumer might display BPSD and the RACF does everything it can to improve the person’s BPSD. And lets just say it is successful the person behaviour has improved by the intervention given by the RACF, when it is time to do the ACFI on that person again, the funding will be reduce even though they require the funding for the person to stay settled and not be distressed. The ACFI funding does not encourage RACF to improve the resident’s outcome and that should change. Also the ACFI looks at what the ACAT paperwork says and that is often incorrect as they are overworked and only spend a short period of time with the person. So many things can be improved. We have only touched the tip of the iceberg.

  4. In the 5 years of the National Action Plan for Dementia Care, preceding the (so called) 1997 Aged Care Reform Act, this country led the world in the care of people living with dementia. Since then, billions has been spent facilitatiing a huge increase in regulatory requirements, training courses, people purporting to be experts, and yet, people living in these heavily regluated facilities, are still tied up and given medications long known and widely reported to be “risk of death” for elders liivng with dementia. Many things need to be done but basic common sense should make it abundantly clear, more staff with better education standards – currently they are appalling – must be the starting point. All the really good people (who can help making mistakes if they have never been taught better)who try so hard to care for elders with respect e.g. TO BE ABLE to spend the necessary time, whilst a person with word finding and language difficulties manages to communicate their needs and feelings in ways that can be understood enough for those needs to be met and the feelings to be recognised and responded to with empathy and skill. The growing use of the term BPSD, demonstrates a total lack of understanding of what we owe to people affected by dementia, i.e. we won’t make up acronyms and use them as an excuse to blame a person living with a damaged brain, for the non verbal manifestations of distress we ought to be able to read as clear indicators of our failure to meet their legitimate needs e.g. the basic human need to be heard and recognised as a person. Too often, person centred care, is nothing more than empty words, people warm themselves with, whilst providing task focussed functional care to people they KNOW nothing about. I know, there are many truly amazing and totally selfless people out there, who are desparately trying to provide good care, with grossly inadequate human resources.We require a reallocation of resources, Replace over regulation, with triple the number of direct care givers, who have been prepared for their occupation with interactive, experiential intelligent educastion.Let’s show some respect, not only for people receiving care, but for the many selfless people still somehow providing it, in the face of incredible apathy (especially from the media in this country, who didn’t think two professors saying hundreds, possibly thousands of elders were dying as a direct result of medication they should never have been given, worth following up on, they disgust me). I worry about the damage being done to the spirits of truly caring people who never, ever, have enough, rostered, time to do more than the basics.Aged care facilites can be joyful places (some definitely are, but not enough),full of music, laughter, art making, dancing (even in chairs can be very beautiful) painting, and so on, whatever it is, it IS NOT being expected to sit and wait for…..nothing. And if you try and express your distress, non verbally, being labelled BPSD. We the wider population must bear the blame if we do not insist on a better life for them and who knows, maybe for yourself. Dementia is no respecter of age,the brain can be damaged by something as simple as the virus that causes a cold sore and that can occur at any age.

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