“Dementia is an umbrella term for a group of conditions that gradually impair brain function that may impact memory, speech, cognition (thought), personality, behaviour,” AIHW spokesperson Melanie Dunford said.
“It is an increasing cause of disease burden in Australia, largely due to our ageing population but also from declines in burden from other leading causes, such as coronary heart disease.
“Dementia was responsible for 4.4 per cent of Australia’s disease burden in 2022, which includes both the impact of living with the condition (the non-fatal burden of disease) and dying prematurely (fatal burden), and was the 2nd leading cause of death in Australia in 2020, accounting for 9.6 per cent of all deaths.”
In 2022, 401,300 Australians were estimated to be living with dementia.
This number increased by 4 per cent from the year prior and is expected to more than double to 849,300 in 2058.
Today’s report includes information on the behaviours and psychological symptoms of dementia (BPSD).
BPSD refers to a range of non-cognitive symptoms that are common among people living with dementia, including agitation, aggression, insomnia and anxiety.
“While the deterioration of memory, language and cognition are hallmarks of dementia, the majority of people with dementia will also experience at least one type of BPSD as their dementia progresses,” Dunford said.
“BPSD can have a significant impact on people with dementia, carers and family, and has been associated with early admission to residential care, increased hospitalisation, distress for carers and reduced functional ability for the person with dementia.”
Among those referred to BPSD support services delivered by Dementia Support Australia between July 2021 and June 2022, agitation was the most recorded primary behaviour, accounting for almost 35 per cent of referrals.
This was followed by physical aggression (25 per cent), verbal aggression (11 per cent) and anxiety (6.4 per cent).
While there are no current prevalence estimates for BPSD in Australia, this report presents information on the prevalence of select symptoms using available data. Further work is required to understand the full impact and cause(s) of BPSD.
What is ‘burden of disease’?
Every year in Australia, millions of years of healthy life are lost because of injury, illness or premature deaths. This loss of healthy life is called the ‘burden of disease’. Burden of disease is the gold standard approach for measuring the impact of illness, injury and death, facilitating consistent measures for monitoring population health and generating evidence to inform health policy and service planning.
People with family members or friends nearing end of life will learn practical skills and knowledge to improve their death literacy under a program being launched next month.
The Last Days program is the first in-person, community-focussed course to provide practical and effective education to improve knowledge and confidence for those caring for someone in their last days, weeks, or months of life.
Professionals with experience in palliative care will offer support and information in workshops on death and dying aiming to better prepare and equip program participants for what’s ahead.
The course will also be available online.
Developed by HammondCare, the Last Days program builds on a 2021 pilot where 100 per cent of the participants agreed the training had increased their awareness and understanding about what to expect when someone is dying and all said they would recommend to others.
The program will launch in Northern Sydney in March through a collaboration with the Sydney North Primary Health Network, with more in person Sydney-based workshops and online sessions over the next few months.
Hammondcare would like to partner with health, community and aged care organisations who might want to deliver the program to people they support.
HammondCare general manager health and hospitals Andrew Montague said the Last Days program was part of HammondCare’s long-term palliative care strategy to ensure more people have choice and opportunity to live their lives to the very end with peace and dignity.
He said about 160,000 people die in Australia each year – and often carers, family members and friends are not prepared for what may be confronting at end of life.
“There is a need to help those who care for people at end of life to equip them to navigate their journey,” Dr Montague said.
“Good palliative care is a partnership between the person, health professionals and families and carers to maximise quality of life, care planning, facilitating end-of-life conversations and management of symptoms,” he said.
Objectives of the program include enabling early communication and decision making about end-of-life preferences as well as equipping families and community-based carers to be better prepared about what to expect during the dying process from a physical and symptom management perspective.
There will be information about practical support resources and services available after the program to help cope with emotions and grief during the last phase of life and bereavement after death.
HammondCare clinical nurse and palliative care specialist Rachael Zielinski is one of the experts who developed and will present some of the programs.
“Death and dying is the elephant in the room – and one of the last taboos,” she said.
“We hope the program will provide a place to reflect and discuss death and dying, breaking down notions that preparing for end of life is technical, private and hidden.”
“It will also seek to encourage more openness in making and documenting end-of-life choices.”
Melanie Gould, who participated in the 2021 pilot, highly recommended the program.
“The session really brings home what awaits during the final days of life of someone you care for,” she said.
Gould, whose 49-year-old friend recently died after a lengthy illness, said there were practical tools and advice on available resources to assist at various steps of the palliative care process.
For more information and to register for the initial free Last Days Workshops, please visit the website here.
A leading virus expert has called for greater support for people affected by long COVID, warning those with the condition have felt abandoned by the Federal Government.
Chief executive of the Burnet Institute Brendan Crabb told a parliamentary inquiry future responses in how the country deals with COVID should take into account people who have been dealing with long COVID.
Long COVID relates to patients who are still reporting symptoms or contracting new symptoms several months after their initial infection.
“The ones who are suffering, we don’t know the exact numbers … but the numbers are big and of course they vary widely in severity” Professor Crabb told the inquiry on Monday.
“This is a group who feel left out of the discussion.
“Australia’s policy is largely based around acute COVID, with trying to protect the vulnerable.”
Monday marked the start of the rollout for the fifth dose of the COVID vaccine.
All adults who have not had a booster or an infection of COVID in the past six months will be eligible for an additional dose protecting them from the virus.
Crabb said a boost in the uptake of vaccines was needed to reduce the severity of COVID among patients, along with reducing the impact of long COVID.
“A fifth dose doesn’t help those who haven’t had their third,” he said.
“The message isn’t getting through that for the first time in the best part of 50 to 70 years, life expectancy is going to decrease in Australia because of COVID, that is how significant it is.”
The institute’s head also called for an increase to measures improving air quality in enclosed spaces as a way of lessening the spread of COVID.
Crabb said the messaging surrounding COVID needed to change to account for those with long COVID.
“Subliminally at least, it’s very hard (for long COVID) to be taken seriously, for employers to take it seriously for example, let alone health professionals,” he said.
“There’s a lot to learn, it’s a mysterious brain fog. It sounds like it’s in your head (but) it’s actually brain damage. We know what brain fog is to a large extent and we should probably use some words like that.”
Epidemiology chair at Deakin University Catherine Bennett told the committee there was a need for further research to better understand long COVID.
“Long COVID still needs to be well understood and it affects the ability to generalise results from trials or real-world data analysis of risk factors for long COVID,” Professor Bennett said.
Meanwhile, a second bivalent vaccine targeting Omicron sub-variants has been approved by the Therapeutic Goods Administration.
Moderna’s vaccine — elasomeran and davesomeran — will be used as a booster dose in people aged 12 years and older.
Evidence from extensive use in Canada, Europe, Japan and the US over recent months shown the booster provides clear reductions in hospitalisation and death, the TGA said.
Furry, finned, or feathered – family pets come in all shapes and sizes. But while these friendly faces keep us company at home, it’s a very different story for people in aged care – many of whom must relinquish their beloved pet as a condition of entry.
Researchers at the University of South Australia (UniSA) are calling for the Federal Government to mandate financial support for pets in aged care to help improve the mental health and wellbeing of thousands of residents.
The call follows UniSA research that explores a practical model of hosting companion animals in aged care, including foster animals and personal pets.
UniSA researcher and project lead, Dr Janette Young says we cannot underestimate the health benefits of human-animal relations, particularly for frail, older people in aged care.
“The great thing about pets is that they can help us feel happier and healthier.
“And they can do this in different ways: we take them on walks and play with them, so they help us stay active; we feed and care for them, so they give us purpose; but most importantly, they’re always there to give us unconditional love and companionship.”
However, Young says, as we get older, pet ownership declines, and so too do these benefits.
One of the most unrecognised issues of ageing, she says, is touch deprivation.
“Pets are there to pat and cuddle and can make all the difference to someone when they’re feeling sad or down.
“Older people in residential care need and deserve a supportive, healthy environment.
“This is a moral imperative. Yet too often we’ve seen the system break under pressure.
“Our team has been working on ways that older people can maintain human-animal connections as they age, and one of the projects we’ve been investigating is cats living in residential care.
Young says the intention is that two adult cats will live among the residents in a dedicated wing of an aged care facility and be cared for by a select group of trained staff and volunteers.
“By living with the residents, the cats would help ease residents’ loneliness, as well as relieve stress, anxiety, and depression,” she says.
“They’d be there to pat, to talk to, to care for and love, and to provide that special sense of companionship.”
The Royal Commission into Aged Care Quality and Safety found that the aged care industry was characterised by a lack of innovation and was not built around the people it was supposed to help.
According to Pet Friendly Aged Care, only 18 per cent of aged care facilities in Australia consider allowing residents to keep a pet.
Young says that her project is currently seeking residential care partners to explore in-residence opportunities.
“We’re right on the precipice of making significant changes to aged care that could positively change the everyday lives of residents,” Young says.
“Already, we’ve established a tool that assesses any risks to humans and animals. So, we’re ahead of the game in terms of safety. But the next step is making it happen.”
One of the biggest challenges has been the pandemic.
“Once COVID-19 hit, access to aged care facilities was extremely limited.
“And while the effects of the pandemic have been felt around the globe, the negative impact has been disproportionately great for those in residential aged care.
“Now, as we edge into safer terrain, we can start to look at improving other aspects of aged care.
Young says positive ageing is not just about living a long life – it’s about ageing well, enjoying your older years, and having purpose and comfort in your life. Pets can provide this.
“The issue now is funding.
“Many aged care facilities are keen to try new innovations but are limited by resources and funding. Staff turnover is also a significant barrier.
“We need the Federal Government to stand up to fund pets in aged care.
“Just like exercise facilities have become a core part of aged care facilities – and are proven to boost movement capabilities and wellbeing – so too should pets be considered an essential part of aged care.
“It’s no longer good enough for people to simply live longer.
“They need to be assured of happy, healthy, and meaningful older years, and for pet-loving older people, this means including their beloved pets.”
The continuation of once-in-a-generation aged care reform following the Royal Commission into Aged Care Quality and Safety is critical in being able to achieve the kind of care and support older Australians both need and deserve, the Aged & Community Care Providers Association (ACCPA) says.
It says sustainable funding and changes to workforce are key elements of this reform requiring immediate attention in the 2023 Federal Budget to be handed down in May by the Albanese Government.
In its pre-Budget Submission, ACCPA proposes 15 recommendations under six priority areas, including development of a sustainable funding system into the future and proposals to ease the sector’s workforce crisis.
ACCPA CEO Tom Symondson says it is crucial the Budget address funding designed to improve the lives of older people in Australia with seamless delivery of services no matter where they live.
“Seven out of ten aged care providers are operating at a loss and the situation appears to be worsening,” Symondson says.
“We need a considered debate on how we fund aged care into the future including the possibility of consumer co-contributions for those who can afford it.
He said the sector needs to find a way of protecting access for those who can least afford to pay for their care, while supporting a sustainable aged care sector.
“There are some immediate funding issues the Government can address in this Budget, such as implementing the indexation increase for all forms of aged care to catch-up with the royal commission’s recommendation from two years ago.
“This would be followed by ongoing indexation from July 1 this year to fully cover CPI increases.”
ACCPA also recommends an $853 million injection into the Home Care Program to clear the waiting list for 2023-24 ahead of the home care program which commences in July 2024.
Additional funding is also recommended to support residential aged care providers to meet the mandated target of 215 minutes of daily care for residents from October 2023.
Symondson said the recommendations in ACCPA’s submission focused on what can be established or ‘seeded’ in the coming year so that a positive impact on the lives of older people can be realistically achieved.
“ACCPA is committed to a collaborative approach, working in partnership with government, consumers, aged care workers and providers to develop solutions to the considerable challenges facing Australia’s aged care sector,” Symondson says.
“Our older people are to be cherished and supported as they age. We want to work to ensure they can live their best lives. It’s what they deserve.”
ACCPA priority areas for reform are:
Ensuring a long-term sustainable funding system
Funding to improve the lives of older people in Australia, across the whole country;
Delivering seamless aged care for older Australians in their communities, their homes and residential care if they need it;
Planning for aged care reform success;
Ensuring aged care for where you live, when you need it and how you need it; and
Solving the workforce crisis to ensure the best care.
With active-wear and headbands dusted off, the odometers on the bike, treadmill, and cross trainer at ACH Group’s Kapara Residential Care Home have been clocking up the kilometres as residents take part in making wishes a reality for sick children.
For the second year, 16 lively and generous residents will ride and walk throughout February to raise funds for Make-A-Wish’s virtual fundraiser ‘Ride for Wishes’.
ACH Group acting CEO Linda Feldt said Ride for Wishes not only encourages residents to stay active but is also an opportunity for the Kapara community to give back.
“The fundraiser is an initiative that sees the Kapara community come together,” Feldt says.
“Residents, families, and staff are very supportive of participating residents, encouraging them to reach their distance goals and donating to the fundraiser.
“It is a cause close to the hearts of residents as many are grandparents and even great grandparents.
“They realise how memorable moments will have a lasting positive impact on the lives of sick children and their families.”
Yvonne Stewart, 92, says fundraising is very necessary and it’s a worthwhile cause to be involved in.
Stewart, pictured above left, will ride 10 kilometres.
“I have always enjoyed staying active,” she says.
“In school I joined most of the sports teams and played football with my brothers; now I walk and go to the gym as often as I can.”
Fred Dodd, 90, will ride and walk 20 kilometres.
“I feel I am capable of keeping active,” Dodd, pictured above right, says.
“I have the belief, ‘if you don’t use it, you lose it’, so I am in the gym every week on the cross trainer.”
Asked if he is daunted by the 20-kilometre target, Fred said, “It is good to have a goal to achieve and work towards it.”
The team at Kapara has a fundraising goal of $2000, which is double last year’s figure.
To donate to the team and support Make-A-Wish, click here.
About ACH Group
ACH Group is a not-for-profit community organisation promoting opportunities and services to support good lives for older people since 1952.
As well as accommodation options across Adelaide and the Fleurieu Peninsula, the group offers a range of health, wellbeing, respite, and support services, help at home and social activities.
The group’s 1800 specialist staff and hundreds of volunteers share the belief that older people should be valued and respected, connected to their communities and in control of their lives.
General practitioners, including those who regularly consult in aged care homes, will have access to a new expert advice services to help them manage the clinical needs of patients with dementia complicated by behaviour and psychological symptoms.
Dementia Support Australia with the support of the Department of Health has launched the GP Advice Service offering direct email access to psychogeriatricians and geriatricians when treating a patient with Behaviours and Psychological Symptoms of Dementia (BPSD).
Advice on treatment strategies will be based on clinical information provided by the GP, including an overview of the patient’s presentation and history.
GPs are welcome to provide a telephone number if they prefer a call-back for a one-on-one discussion.
DSA head of clinical services, Associate Professor Steve Macfarlane, pictured above left, said it was now generally accepted that psychotropic medications have a limited role in the management of BPSD.
“Nonpharmacological strategies should be an important part in the management of dementia complicated by BPSD and, in fact, be the mainstay of treatment in most patients,” Macfarlane said.
“We want to do all we can to support GPs to consider alternatives to these medications.”
BPSD may include psychosis, agitation and aggression, depression, anxiety, apathy, impulsivity, pacing, vocalisations, appetite and eating changes, sleep disturbances, distress during personal care and wayfinding difficulties.
The recent Royal Commission into Aged Care Quality and Safety identified overuse of psychotropic medication in aged care residents with BPSD as a significant issue contributing to adverse outcomes, and highlighted the minimal training that doctors receive in BPSD management.
Some of the adverse outcomes associated with psychotropic medications in dementia include increased risks of death, falls, weight gain, hypertension and diabetes, a restriction on the patient’s ability to swallow and an increase in the risks of aspiration, pneumonia, and other respiratory conditions.
These changes in behaviour are thought to have many catalysts and causes, including the consequences of the progressive nature of the many organic conditions linked to dementia, or on many occasions, a reasonable response to unmet needs, pain or changing circumstances.
Up to 95 per cent of people living with dementia will experience forms of BPSD during their journey with the disease and many of them will be wrongly prescribed medications or chemically and physically restrained.
Head of dementia professional services Marie Alford said the GP Advice Service was designed be as easy as possible for busy General Practitioners to access.
“We recognise that in the day-to-day work of running their practice it may not be possible for GPs to make a call or discuss a patient during normal business hours,” Ms Alford said.
“An email response offering clinical advice from a medical specialist is a great solution.”
DSA is funded by the Australian Government and operates 24/7, 365 days a year to improve the quality of life of people living with dementia and their carers who are experiencing behavioural changes. It brings together dementia expertise from across the aged care industry nationally.
For more information on the GP Advice Service, click here.
The Federal Government’s draft 10-Year Dementia Action Plan has failed to address some fundamental areas for reform, according to multiple leading advocacy bodies.
The publicly available consultation paper, released in November 2022, sets out the Government’s vision for greater public awareness of dementia, and great post-diagnostic support for those living with the condition, as well as their carers.
The action plan emphasises seven key objectives, namely:
Tackling stigma and discrimination, including that experienced by marginalised groups such as First Nations, Culturally and Lingustically Diverse (CALD), and LGBTQI+ older Australians.
Minimising risk, delaying onset and progression of neurodegenerative conditions.
Improving dementia diagnosis and post-diagnostic care and support, including through local Brain Hubs which will provide multi-disciplinary care, including allied health.
Improving treatment, coordination and support along the dementia journey.
Supporting people caring for those living with dementia.
Building dementia capability in the workforce.
Improving dementia data and maximising the impact of dementia research and innovation.
“It’s really welcome, and we believe it will raise awareness of, and provide appropriate services and supports to, people living with dementia as well as their carers and families,” Gear says.
“But we are concerned that the current draft makes no mention of the human rights of people living with dementia.
The seven objectives of the draft plan are undoubtedly welcomed, however advocates in the sector are concerned about a variety of omissions.
Analysis of the draft document reveals that the paper fails to explicitly address multiple royal commission recommendations, such as a human rights-based framework; establishment of deinstitutionalised, home-like facilities, available to older Australians even in the later stages of dementia; and enabling ‘self-determination’ and ‘dignity of risk’, even when one is living within residential care settings.
“We recognise that the shift to a new human rights based Aged Care Act is very new and evolving… but we really would like to see that understanding that taking away someone’s liberties is a big thing…,” Gear tells Aged Care News.
“Removing some of those institutionalised elements [of residential aged care] is a really important strategy… and we need to be making sure that people are still engaged with their communities.”
Gear furthermore states that members of OPAN’s National Older Persons Reference Group have drawn particular attention to the draft plan’s lack of action around locked dementia units.
“And, as we note in our recent submission paper, people living with dementia are also frequently denied their rights in community and health care settings, and by family or appointed guardians or attorneys.”
Tamar Krebs, founder and CEO of deinstitutionalised dementia care provider Group Homes Australia, tells Aged Care News that she is also concerned about the lack of attention to the common practice of locking up persons with dementia.
“Locking people up is against human rights, and so the fact that we’re going to have a 10-year action plan that doesn’t include deinstitutionalisation makes me scratch my head, thinking we’re going backwards in time.”
Krebs adds that while the references to added support during the dementia journey is promising, she emphasises that expert nursing staff must be deployed to provide clinically sound support for the person with dementia and their next of kin.
“If you get diagnosed with breast cancer, you have someone who’s going to walk alongside you through your diagnosis, and so we should have a dementia care nurse that, when you get diagnosed, you’re gonna get absolute support to learn how to live.
“And this is not just for the person living with dementia, because there’s always two people: there’s the partner and the person.
“One’s living with dementia inside and one’s living with dementia outside, and so we need to be able to change that conversation, post diagnosis, and I’m not sure that there’s enough of that in the action plan.”
Grassroots advocacy group Aged Care Reform Now poured hours of work into their own independent submission during the action plan’s consultation process, informed by their diverse membership’s diverse expertise, comprising clinical experience, legal expertise and lived experience of the system.
ACRN’s submission emphasises that eliminating systemic harm needs to be a central feature of the Federal Government’s mission statement.
“While we agree with many of the objectives and actions, we believe there are additional enabling components that should be included to support best practice dementia care,” ACRN’s submission says.
It emphasises the need to mitigate against abuses of power related to substitute decision making arrangements, and to abolish the practice of giving bureaucrats absolute authority over isolated persons with dementia.
“We understand the Public Trustee is not appropriate in aged care settings as they do not have day-to-day involvement with the person they are supporting, and they are relying on the aged care facility to provide health and other information.
“There has to be a mediation system to deal with family and other disputes related to the care of people with diminished capacity.”
According to OPAN, supported decision-making processes must be embedded within the country’s dementia action plan, an alternative to substitute decision-making that provides people with dementia the support and information they need to make their own choices.
“Supported decision-making supports people to exercise their own preferences in the context of making legal and day-to-day decisions,” Gear explains.
“As I told the Disability Royal Commission, there is a common misunderstanding within the community and the aged care sector, that if a substitute decision-maker has been appointed for medical decisions, an older person cannot make day-to-day decisions for themselves or participate in larger decisions relating to their lifestyle, health and wellbeing.”
Rigorous training of all aged care staff and professional advocates is necessary, Gear says, to ensure older persons are supported in exercising their own preferences, even as their condition progresses.
“This needs to be a core competency, to support those living in aged care, but also the family members,” Gear says.
“When people have the privilege of being nominated someone’s supported decision maker, they need to receive the necessary training and support to ensure they are allowing the older person ongoing choice and control over their decisions.”
The 10-Year Dementia Action Plan will be finalised by the end of 2023.
Although public consultations have closed for this strategy framework, Gear says that organisations such as OPAN, as well as the general public, will have further opportunities to advocate for additional reforms throughout the year.
High drug prices are not justified by industry’s spending on research and development (R&D), argue experts in The BMJ this week.
Aris Angelis and colleagues point out that from 1999 to 2018, the world’s 15 largest biopharmaceutical companies spent more on selling, general, and administrative activities (which includes marketing) than on R&D and that most new medicines developed during this period offered little or no clinical benefit over existing treatments.
By refocusing their spending, they say drug companies “could provide more innovative drugs at affordable prices” and they call for government action to encourage research and development oriented to public health priorities.
Concerns over the prices of new medicines have been growing over the past decade, they write.
In the US, estimated net prices of newly launched prescription drugs increased from an average of around US$1400 a year (£1200; €1300;AU$2050) in 2008 to more than US$150,000 (AU$220,000) a year in 2021, and even old and common drugs have seen inexplicable price increases in recent years.
The biopharmaceutical industry has long argued that high prices are needed to sustain R&D for new medicines.
And while the authors acknowledge that there are large financial risks associated with bringing new medicines to market, they say analysis of drug company spending relative to products raises questions about this claim.
For example, publicly available financial reports from 1999 to 2018 show that the 15 largest biopharmaceutical companies had total revenues of $7.7tr.
Over this period, they spent US$2.2tr on costs related to selling, general, and administrative activities and US$1.4tr on R&D.
Most of the same companies also spent more buying their own stocks, a practice known as share buybacks, than on R&D during this period, note the authors, which raises questions about commitments to truly valuable and risky biopharmaceutical research.
The justification of high drug prices to offset R&D spending also ignores the sizeable public investments in drug discovery and development, they add.
This means that society is potentially paying twice for new drugs, first in the form of publicly subsidised research and second through high product prices.
What’s more, most new drugs provide little or no added clinical value, they explain.
For instance, in the 1970s and the 1980s, around 1 in 6 (16 per cent) new drugs approved by the FDA offered important therapeutic gains.
Yet analyses of drug evaluation reports by health technology assessment bodies in France and Germany in the 2010s suggest that most new drugs offer little or no added clinical value, with only a fraction offering important or major improvements.
Angelis and colleagues acknowledge that, on the positive side, most products under development during 1997-2016 targeted novel mechanisms of action, but say there has also been a shift in focus from blockbuster drugs, typically targeting chronic diseases and sold in high volumes globally, to “nichebuster” drugs targeting rare diseases or narrow indications for which high prices can be charged.
“Given the amount spent on non-research and development activities and that most new drugs add little or no therapeutic value, in theory the biopharmaceutical industry could generate more medically valuable innovation with its existing resources,” they say.
“This is unlikely to happen, however, without government intervention or regulation along the lifecycle of new medicines.”
As such, they argue that governments, policy makers, drug regulators, health technology assessment bodies, and payers “need to re-think the incentives for valuable biopharmaceutical innovation, creating policy and regulatory environments that will meet public health objectives.
“The world needs a truly value based health-industrial ecosystem for incentivising and rewarding improvements in health outcomes and population health throughout the lifecycle of new medicines,” they conclude.