Hi, I'm Jo, and I'm a Ph.D. Candidate, I'm working on a project on dementia enabling design. I am very passionate about working towards improving the care of people with dementia, and I hope my work will make a difference. I also love cooking, reading, writing, noms and hugs! I also tweet, blog and run a free e-newspaper in dementia care for the Asian community www.dementiacareasia.com
Reading up on all the news, reports and discussions on the aged care royal commission, it makes me wonder if personhood is forgotten in dementia care. Recognition, respect and trust is not rocket science and that’s just common sense. What’s happened to aged care? Why is it that people living with dementia are now being objectified, disrespected and feared in aged care. How did we go so wrong?
Now, as the commission shifts its focus to care in the community, we’re also seeing claims of failure within the home care packages program.
This scheme aims to support older people with complex support needs to stay at home. But what we’ve got is a market-based system where the processes involved in accessing support and managing services are making it difficult for vulnerable older Australians to receive the care they want.
If this system is to be workable, older people need better information and more personalised supports to enable choice and control – especially those with complex needs.
This means that, theoretically, home care providers must work with consumers to design and deliver services that meet their goals and care needs, as determined by an Aged Care Assessment Team.
However, in reviewing the active steps outlined in the government pathway to access a package, we must consider the person who is navigating this path.
They are frail older people with complex support needs, often seeking help at times of crisis. These include the growing number of older Australians living with multiple medical conditions and complex age-related syndromes such as dementia.
After a person has been assessed, they will receive a letter informing them they are eligible. However, due to long waiting lists, this does not provide them with immediate access to care; most wait many months before they are actually assigned a package by My Aged Care.
When they eventually receive a letter confirming their package, the consumer will be approached by various service providers. They will need to sign a complex contract with their chosen provider.
If the consumer is feeling frustrated and confused during these early stages, this is only the beginning. The recent marketisation of home care means managing their own care requires going through impersonal, centralised provider systems.
People need clear information to choose a provider
The first thing people assigned a home care package need to do is choose a care provider.
There are now close to 900 different providers offering home care packages. This includes not-for-profits, as well as a growing number of for-profit providers competing for new business.
In reality, however, few older people research different providers. Once they’re assigned a home care package, their name is placed on a centralised database accessible by all registered service providers.
The person then receives unsolicited phone calls from the sales teams of different providers, offering their services and trying to make appointments to come and visit. For consumers, this represents a shift from a familiar government model of care provision to a market model.
Research shows consumers often don’t understand consumer directed care, and this can leave them vulnerable to the forceful marketing tactics employed by some providers. It can also make negotiating a complex contract with legal, financial and personal implications very difficult.
To make informed choices between providers, people need accessible information. There is currently insufficient information for older people and their families to compare services on indicators of quality (such as the number of complaints agencies receive, the training of staff, the types of specialist services they offer, and so on).
To address this gap, the government must commit to collecting and publishing data on home care quality. This would drive service improvement and increase people’s ability to make informed choices between different providers.
Service and administrative fees
To make informed choices, people also need to be able to compare services on the basis of price.
The average profit per client for home care package providers was A$2,832 in 2016-17, but there’s significant variability between providers’ fees.
For example, the use of people’s individual care budgets to cover administration or case management fees ranges between 10-45% of their total package.
High fees and administrative costs may reveal the profit-driven motives of a few unscrupulous providers.
Because of administrative fees, many people are spending a high portion of their individual budgets on case management to support their care.
While there’s evidence case management can provide clinical benefits for older people, in the context of the current home care funding model, it may also leave people with less money for direct care services than they need.
People need support to manage their packages
We’re currently looking at the experiences of people with dementia using home care packages. Unsurprisingly, we’re finding that while they are grateful for the services they’re receiving, they are having a difficult time managing their care. For some this may be due to their limited decision-making capacity, but for many, their choice and control is being limited as much by the service model.
For example, to enable providers to compete in the open market, many have adopted central 1800 numbers to support people to manage their services. This means if consumers want to change something, they are funnelled through this system.
Think about your own experience of service helplines, such as with telephone or energy companies. Now consider a woman with dementia who needs to call a 1800 number to change the time of her shower so she can see her doctor.
Rather than communicating with a local and known case manager, she now needs to speak to someone she doesn’t know and who is not familiar with her care needs.
Instead of facilitating choice and control, this demand on the consumer to constantly articulate their needs to unfamiliar people means many are frustrated, and some are even opting out of services.
How can we improve things?
The three words the government associates with consumer directed home care are choice, control and markets.
But the system doesn’t foster control. Although consumers technically have choices, the marketised and bureaucratic approaches of service providers make it difficult for consumers to articulate and receive support for their personal choices.
The processes, information and supports available to assist older people and their families are inadequate to facilitate the type of choices and control one might associate with “consumer directed” care.
There’s an urgent need to improve the processes for accessing timely home care packages, particularly for those with complex support needs. This includes the quality and accessibility of information, resources and decision-making tools.
There’s also a significant need for training, advocacy and impartial support for choice, particularly for people with limited decision-making capacity, such as those living with dementia.
Research and practice in aged care and disability in other settings provide extensive resources for person-centred planning and decision making which could be adapted for use in our home care system.
As the royal commission begins investigating the failures of the residential aged care sector, it is important such a review also considers the broader socio-political factors that have contributed to this crisis.
The commission needs to go beyond the institutional problems at individual aged care facilities, as these are a symptom of a much broader rejection of ageing in society and marginalisation of older people.
Negative stereotyping of older people is reinforced in the media, and this both informs and reflects societal attitudes. In Western society especially, we fear dependency, invisibility and dying. Aged care is a silo of these fears. And until it affects us personally, we ignore it.
How older people are marginalised in society
We have an expiry date in our society. This is not the date we die, but a time when our skills and knowledge are no longer considered to be valid or useful. Our value is largely determined by our economic contributions to society. But for many older people, this is difficult to demonstrate because they’re no longer in the workforce.
The economic impact of societal rejection of ageing is significant. Modelling by Price Waterhouse Cooper indicates that Australia’s gross domestic product would increase by almost 5% if people were supported to work longer. And data from the Australian Bureau of Statistics reveal that many Australians would like to retire later if they could.
Yet, there is evidence that older people are routinely denied work. In 2016, Age Discrimination Commissioner Susan Ryan said there was an urgent need to “tackle the discrimination that forces people out of work years before they want to leave”.
While older people should be supported to work longer if they wish, over half of Australians between the ages of 65 and 80 report a moderate or severe disability, resulting in greater dependency. A 2017 study of late-life dependency published in The Lancet found that, on average, older people will require 24-hour care for 1.3 to 1.9 years of their lives.
However, it is important that older people are not considered redundant in their societal role when dependency increases.
Aged care workers are also undervalued
Residential aged care facilities fulfil an essential role in our society. Yet, our recent ethnographic study in two residential aged care facilities in Victoria shows how this role has been compromised by an under-skilled, under-valued and overworked aged care workforce.
Older people were exposed to a revolving door of anonymous workers, significantly reducing opportunities for teamwork and fostering relationships between staff and residents. In one of the not-for-profit facilities, a single registered nurse was responsible for the care of 73 residents. This contributed to the delegation of an increasing range of tasks to unregistered personal care assistants with minimal training and delays in recognising signs of health deterioration among residents.
A reliance on general practitioners also increased the likelihood of hospital transfer. And hospital transfers can sometimes prove harmful, with previous studies showing that the noisy, fast-paced environment, bright lights and anonymous faces can have a negative impact on residents, particularly those with dementia.
Within the healthcare sector, aged care has the lowest status of all specialty areas amongst nurses and doctors. Recruiting appropriately qualified and skilled people to work in aged care is thus a constant challenge. Australia is expected to increasingly rely on imported labour to staff its aged care sector in the near future.
Ways to fix the system
Encouraging more healthcare professionals to enter the aged care sector will require a multi-pronged approach, starting with finding ways to engender more professional respect for those working in the field.
Greater emphasis also needs to be placed on improving the gerontological expertise of aged care workers. This can be strengthened by prioritising aged care in medical school education and recognising “nursing home” care as a specialist medical area. It is also imperative that personal care assistants receive greater recognition of the roles and duties they perform.
Registration of personal care assistants as third-tier health care professionals is well overdue to ensure better oversight of their training and scope of their practice.
We also need to recognise the importance of human connection in residential aged care facilities. This requires strategies to build better relationships between residents and staff, and developing a formula for more accurate staffing allocations that reflect the real time commitments involved in aged care.
Who bears the ultimate responsibility?
It’s not enough to be shocked by the aged care scandals uncovered by the media and the decision to appoint a royal commission to investigate. We must also make older people, their contributions and end-of-life needs more visible. Increased funding and oversight will only come when we collectively say it’s important.
It is incumbent on us to ensure that residential aged care facilities do not operate as holding bays for the silenced, or wastelands for the discarded, where the occupants are expected to demand nothing and be as little cost to society as possible.
We have an opportunity to reconstruct the delivery of residential aged care. Let’s begin with the end in mind: a society that not only values older people, but values the resources required to provide the care they need and deserve.
I hope in a decade when I look back on this post, the world will be a better place for people living with dementia, especially for women.
Jumping into the facts, a study evidently points out that in Singapore, 97% of caregivers for people living with dementia were female; comprising of daughters and daughter in law’s.
In the aged care sector, the workforce comprises of mostly women. In some countries up to 80%.
Our biological differences have seen more women then men living with dementia, and dementia being the leading cause of death for women.
For many of us women, we may be living with dementia, be the primary support for a loved one with dementia or working to formally provide care to a person living with dementia.
It’s important that we support each other and work together to educate the next generation, reducing traditional gender roles to enable more opportunities for a cure as more women move into STEM. Recognise the efforts and responsibilities of women taking on caring roles within the family, one that is of love, patience and pain as they live the long goodbye. Let’s not forget the many care staff in the aged care sector that have been working on minimum wage, understaffed and running off their feet, yet always having a warm smile and love for the people living with dementia that they care for.
Let’s do better for all women living and working with dementia!
Last month the aged care minister Ken Wyatt announced he would introduce regulations to address the use of “chemical restraint” in residential aged care – a practice where residents are given psychotropic drugs which affect their mental state in order to “control” their behaviour.
Psychotropic medications used as “chemical restraints” are antipsychotics, antidepressants, anti-epileptics and benzodiazepines (tranquilisers).
Wyatt followed this announcement this month with a A$4.2 million funding pledge to better monitor care in nursing homes through mandatory “quality indicators”, and including one covering medication management.
Of course, you would be hard pressed to find a staff member admitting to controlling a resident by giving them a tablet. Instead, most staff would stress that medication was given to calm or comfort them.
But our research shows psychotropic use is rife in Australia’s aged care system.
Reforms are desperately needed, but we need to develop the right approach and learn from countries that have tried to regulate this area – most notably the United States and Canada.
What’s the problem with antipsychotic drugs?
Antipsychotic drugs such as risperidone and quetiapine are often used to manage behavioural symptoms of dementia.
But large reviews conclude they don’t work very well. They decrease agitated behaviour in only one in five people with dementia. And there is no evidence they work for other symptoms such as calling out and wandering.
Due to their limited effect – and side effects, including death, stroke and pneumonia – guidelines stress that antipsychotics should only be given to people with dementia when there is severe agitation or aggression associated with a risk of harm, delusions, hallucinations, or pre-existing mental illness.
The guidelines also state antipsychotics should only be given when non-drug strategies such as personalised activities have failed, at the lowest effective dose, and for the shortest period required.
The high rates of antipsychotic use in Australian aged care homes indicates the guidelines aren’t being followed.
In our study of more than 12,000 residents across 150 homes, we found 22% were taking antipsychotics every day. More than one in ten were were charted for these drugs on an “as required” basis.
We also found large variations in use between nursing homes, ranging from 7% to 44% of residents. How can some homes operate with such low rates, whereas others have almost half their residents taking antipsychotic medications?
Regulations to reduce chemical restraint
Of all countries, the US has made the most effort to address high rates of antipsychotic use.
After reports in the 1980s highlighting poor nursing home care, Congress passed the Omnibus Budget Reconciliation Act which sets national minimum standards of care, guidelines to assist homes to follow the law, and surveyors to enforce it.
For residents with dementia and behavioural symptoms, the regulations require documentation of the behaviour, a trial of non-drug strategies such as activity programs, and dose reductions after six months.
Homes that don’t meet these regulations are subject to a series of sanctions, ranging from financial penalties to closure.
The regulations were initially associated with substantial declines in antipsychotic use. By 1995 only 16% of residents were taking them.
But average rates of use rose to 26% by 2010. And in 2011, a Senate hearing found 83% of claims for antipsychotics in nursing homes were prescribed for unlicensed use.
This led advocates to conclude the regulations and surveyor guidance were ineffective.
Quality indicators to reduce chemical restraint
Another way to reduce antipsychotic use in aged care homes is by mandatory quality indicators, along with public reporting. The US introduced this in 2012. A similar system was instituted in Ontario, Canada, in 2015.
Measures are essential for quality improvement. But they can also lead to unintended consequences and cheating.
In the US, antipsychotic rates for people with dementia has allegedly reduced by 27% since the start of their quality indicator program.
But those diagnosed with schizophrenia were exempt from reporting. Then the percentage of residents listed as having schizophrenia doubled from 5% to nearly 10% of residents within the first few years of the initiative. So 20% of the reduction was probably due to intentional mis-diagnosis rather than an actual decrease in antipsychotic use.
A recent US study has also shown that the use of alternative sedating medications not subject to reporting, specifically anti-epileptic drugs, has risen substantially as antipsychotic use declined, indicating widespread substitution.
In Ontario, the use of trazadone, a sedating antidepressant, has also markedly increased since its antipsychotic reporting program began.
In the US, nursing homes self-report indicators. A recent study compared nursing home data with actual prescribing claims, concluding that homes under-reported their antipsychotic prescribing, on average, by 1 percentage point.
Public reporting is often also time-consuming, with some researchers arguing that time spent managing quality indicators may be better spent providing care for residents.
Where to now?
Awareness of a problem is the first step to addressing it, and chemical restraint is a key issue coming to light in the aged care royal commission.
The proposed regulations and new quality indicator will allow homes and regulators to monitor the use of chemical restraint, but more importantly, should be used to assess the impact of training and other strategies to ensure appropriate use of psychotropic medications.
But to meet their full potential, these programs need to be carefully designed and evaluated to ensure that cheating, under-reporting and substitution does not occur like it did in North America.
FEBRUARY 2019| National Ageing Research Institute Limited. (NARI) – Multi-media movies to build understanding about dementia in multicultural Australia
Moving Pictures, an innovative multi-media program to raise awareness about dementia in people from multicultural communities, and how to access help has been launched in Melbourne by Minister for Senior Australians and Aged Care Ken Wyatt AM.
Coordinated by NARI, Moving Pictures is made up of fifteen short films co-produced with people from Tamil, Hindi, Cantonese, Mandarin and Arabic communities – Australia’s top five fastest growing cultural and linguistic groups.
The launch was attended by some of the movies’ stars who were congratulated by the Minister for becoming involved.
“I congratulate everyone involved in Moving Pictures because early awareness and diagnosis is one of the keys to giving people living with dementia better, longer lives,” said Minister Wyatt.
“Having seen the research team at work, I know Moving Pictures will make a big difference to so many families and individuals in our multicultural nation,” he added.
Carer Sonchoita Sagar, aged 46, signed up to take part in the project because she knew only too well what it was like to navigate the system for help. She came to Australia from India and has lived here for 20 years. A professional yoga instructor, Sonchoita cared for her mother and parents-in-law. It took her several years before she understood the system and where and how to ask for help.
Sonchoita was joined by Sukhwinder Rakhra, Miranda Mak, Mary Enkababian and Anita Barar, each of whom have their own experience as carers. In all, 57 families and 19 service providers in Melbourne, Sydney, and Perth were involved in the films’ production.
Associate Professor Bianca Brijnath, Director Social Gerontology, said Moving Pictures was a critical step forward in helping people from CALD backgrounds understand more about dementia and the services that are available.
“The reality is that there is limited awareness about dementia and that is resulting in delayed diagnosis, poorer prognosis, and a higher burden of care on families and health systems,” Dr Brijnath said.
Using film making to inform and educate these communities about dementia, and the importance of early diagnosis of dementia for better treatment and quality of life was deliberate, according to Dr Brijnath. “Film-making has a long history of portraying the cultural complexities of everyday life, and lends itself well to the communities Moving Pictures is trying to reach,” Dr Brijnath added.
Moving Pictures was made in conjunction with Curtin University and guided by Dementia Australia, Chung Wah Association, Australian Nursing Home Foundation, Federation of the Indian Association of Victoria, the South Western Sydney Local Health District, and the Australian Arab Association.
Depending on funding the NARI team is anticipating taking the Moving Pictures concept to India and China. Globally, India and China are poised to have a 90% increase in dementia prevalence by 2020.
“Given such high numbers, these films have potential to become an international resource, pioneered in Australia, and adaptable to different cultural settings and varying literacy levels,” Dr Brijnath said.
Moving Pictures has been funded through the Federal Government’s Dementia and Aged Care Services research and innovation grants. The films, together with a mobile-optimised website and dementia comics, will now be rolled out across Australia.
February 2018 | Aarhus University – Being surrounded by green space in childhood may improve mental health of adults by Peter Bondo
Being surrounded by green space in childhood may improve mental health of adults
Children who grow up with greener surroundings have up to 55% less risk of developing various mental disorders later in life. This is shown by a new study from Aarhus University, emphasizing the need for designing green and healthy cities for the future.
A new study from Aarhus University shows that children who grow up surrounded by high amounts of green space have up to 55% less risk of developing a mental disorder later in life. According to the researchers, integration of green space in urban planning is important to ensure green and healthy cities for the future generations. Model photo: Colourbox.dk.
A larger and larger share of the world’s population now lives in cities and WHO estimates that more than 450 millions of the global human population suffer from a mental disorder. A number that is expected to increase.
Now, based on satellite data from 1985 to 2013, researchers from Aarhus University have mapped the presence of green space around the childhood homes of almost one million Danes and compared this data with the risk of developing one of 16 different mental disorders later in life.
The study, which is published today in the prestigious American Journal PNAS, shows that children surrounded by the high amounts of green space in childhood have up to a 55% lower risk of developing a mental disorder – even after adjusting for other known risk factors such as socio-economic status, urbanization, and the family history of mental disorders.
The entire childhood must be green
Postdoc Kristine Engemann from Department of Bioscience and the National Centre for Register-based Research at Aarhus University, who spearheaded the study, says: “Our data is unique. We have had the opportunity to use a massive amount of data from Danish registers of, among other things, residential location and disease diagnoses and compare it with satellite images revealing the extent of green space surrounding each individual when growing up.”
Researchers know that, for example, noise, air pollution, infections and poor socio-economic conditions increase the risk of developing a mental disorder. Conversely, other studies have shown that more green space in the local area creates greater social cohesion and increases people’s physical activity level and that it can improve children’s cognitive development. These are all factors that may have an impact on people’s mental health.
“With our dataset, we show that the risk of developing a mental disorder decreases incrementally the longer you have been surrounded by green space from birth and up to the age of 10. Green space throughout childhood is therefore extremely important,” Kristine Engemann explains.
Green and healthy cities
As the researchers adjusted for other known risk factors of developing a mental disorder, they see their findings as a robust indication of a close relationship between green space, urban life, and mental disorders.
Kristine Engemann says: “There is increasing evidence that the natural environment plays a larger role for mental health than previously thought. Our study is important in giving us a better understanding of its importance across the broader population.”
This knowledge has important implications for sustainable urban planning. Not least because a larger and larger proportion of the world’s population lives in cities.
“The coupling between mental health and access to green space in your local area is something that should be considered even more in urban planning to ensure greener and healthier cities and improve mental health of urban residents in the future,” adds co-author Professor Jens-Christian Svenning from the Department of Bioscience, Aarhus University.
Postdoc Kristine Engemann, Centre for Biodiversity Dynamics in a Changing World (BIOCHANGE) & Section for Ecoinformatics and Biodiversity, Department of Bioscience, Aarhus University, and The National Centre for Register-based Research, Department of Economics and Business, Aarhus BSS, Aarhus University. E-mail: firstname.lastname@example.org. Tel.: + 45 25368404.
Professor Carsten Bøcker Pedersen, The National Centre for Register-based Research, Department of Economics and Business, Aarhus BSS, Aarhus University. E-mail: email@example.com. Tel.: + 45 87165759.
Professor Jens-Christian Svenning, Centre for Biodiversity Dynamics in a Changing World (BIOCHANGE) & Section for Ecoinformatics & Biodiversity, Department of Bioscience, Aarhus University. E-mail: firstname.lastname@example.org. Tel.: 45+ 28992304.