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Carers unprepared for end-of-life decisions

Posted on 25 November, 2018 at 19:00 Comments comments (0)

New international research from Advance Care Planning Australia (ACPA) reveals dementia carers need more support and guidance to navigate end-of-life care for their loved one.

Recently published by internationally renowned journal, Palliative Medicine, the study reviewed 81 articles involving around 400 people with dementia and 1864 carers, from 14 countries including Australia, USA and the UK. The study identified the emotional pressures that arose when people with dementia and their carers confronted tough decisions and difficult conversations about advance care planning.

When people with advanced dementia lost decision-making capacity, their carers were left to make high-stakes decisions about their medical treatment. Decision-making could become fraught and distressing without advance care planning and when a person had not clarified their preferences. Some carers reported feeling they were causing the death of their loved one.

Other key findings included a general distrust and lack of confidence by carers, regarding the information and support received through aged care and other health providers.

Barriers to discussing advance care planning and end-of-life care included general anxiety about death, reluctance to confront inevitable cognitive decline associated with dementia, and fear of being locked into a binding and inflexible pathway of care.

Carers showed a strong preference for high-quality care for their loved one, wanting them to live as well and as ‘normally’ as possible. For this reason, many carers delayed moving their family member to a residential aged care facility, keeping them at home for as long as possible.

Funded by the Australian Government, ACPA is the national authority on advance care planning. The organisation supports the public and healthcare professionals to ensure people’s values and medical care preferences are heard and respected.

Central to the ACPA’s charter is increasing the uptake of advance care directives, which is estimated at less than 15 per cent of the Australian adult population.

“This study shows that we have a long way to go in normalising advance care planning and end-of-life discussions,” ACPA Medical Director Dr Karen Detering said.

“Dementia is an illness with a known trajectory, yet individuals, families, aged care providers and health professionals, still struggle to plan. We need to do better.

“Dementia is now a leading cause of death in Australia. Too many people are denied a dignified and peaceful end. Families are needlessly suffering the burden of decision-making on a knife’s edge.

“This research underscores the pressing need to upskill the community, carers, aged care providers and health professionals so more Australians are empowered to receive the care they want - whatever the future holds.”

Study shows few trust aged care industry

Posted on 3 November, 2018 at 1:25 Comments comments (0)

A new report on the state of aged care has shown few Australians trust the industry and perceptions of service levels, openness and transparency are also low.


Earlier this week, Insights agency Faster Horses released its inaugural national research report titled Inside Aged Care at the Leading Age Care Services Australia (LASA) National Congress in Adelaide.


The study, based a national sample of 1,701 people, measured how the general public and those experiencing aged care across Australia viewed trust, government funding levels, clarity, innovation, transparency and care levels within the industry.


The data revealed only 18 per cent of Australians trusted the industry and only 13 per cent thought it was open and transparent.


Perceptions of care levels were also low, with around one third agreeing that aged care organisations showed empathy, offered high service levels, and took the time to understand the individual needs of those in their care.


Two in three Australians believed the industry was under-funded. This increased to three quarters of those aged over 60 and seven in 10 of those with a family member receiving aged care services.


Faster Horses Managing Director Veronica Mayne said the report not only highlighted the context within which providers operated, and the negative sentiment they needed to overcome, but it also identified the key factors motivating choice of aged care provider.


“The report taps into critical issues that are certain to be of interest not only to organisations operating in the aged care industry, but also to federal and state governments and consumers and their families,” Ms Mayne said.


“Organisations can leverage the data to build their position and promotional materials in a way that aligns to their strengths.”


Ms Mayne said Inside Aged Care was also future focused and asked people what aged care options they were considering across various time periods, stretching to the next 15 years.


“This provides the industry with a forward view of likely demand and will enable organisations to scale up in particular areas to manage the impact of this demand,” Ms Mayne said.


“In this instance, the industry and the government are on the same page, with 69 per cent agreeing that the focus should be placed on people ageing in their own homes.


“Triggers to moving into aged care are identified, together with the associated emotional impact. This is enormously valuable as it measures the extent of the anxiety and stress around a move into the sector, and it can therefore inform the training programs that aged care organisations adopt to recognise the need to counter this stress.


“Brand performance is also measured. Levels of awareness are highlighted, as well as (for leading brands) perceptions of performance.”


LASA Chief Executive Officer Sean Rooney said the report was another tool to help the industry deliver better services and care to older Australians.


“This report underscores the need to get on with making the system better right now by addressing funding and workforce issues, while the Royal Commission (into Aged Care Quality and Safety) is underway.


“The report will be an invaluable addition to the planning and marketing toolkit for every aged care provider and government agency across the nation.”


The full report will be released soon.

Poverty among seniors highlighted

Posted on 3 August, 2018 at 6:30 Comments comments (0)

By Chief Advocate Ian Henschke


A report funded by the Australian Government Department of Social Services released this week highlights inequality and poverty among older Australians.


The Household, Income and Labour Dynamics in Australia Survey - or the HILDA Report – has been running since 2001 and provides remarkable insights because it surveys the same households and individuals each year. This way it can show how the lives of a cross-section of Australians are changing over time.


Not surprisingly, some of the key concerns you told us about in our Advocacy Survey late last year are echoed in this major report. The rising cost of energy and housing stress as growing concerns appear strongly. We are campaigning on these issue as well as these being highlighted through our Fix Pension Poverty joint campaign with the Benevolent Society.


The 2018 Hilda Report also highlighted the growing issue of inequality among older Australians. It seems among seniors the gap between the ‘have a lot’ and the ‘haven’t much’ is growing.


Australians aged 55-64 and 65+ are experiencing inequality within their age group at rates much higher than any other age groups in Australia

The over 65s age group is the only one where inequality has increased significantly over the past 15 years

Older single women, older single men and older couples are the three family types most likely to be experiencing income poverty in Australia

Older women have experienced the steepest increase in income poverty since 2015.

The latest Department of Social Services data reveals that more people aged 55-64 are on Newstart than those aged 25-34 and they are on the payment for much longer. They are also spending their retirement savings before they retire because they can’t live on Newstart without experiencing financial hardship.


Average time a 60-64-year-old spends on Newtstart is 187 weeks (3.6 years)

Average time a 25-29-year-old spends on Newstart is 104 weeks (2 years)

Number of people aged 55-64 on Newstart 174,532

Number of people aged 25-34 on Newstart 156,664.

National Seniors has joined with the Benevolent Society (Australia’s oldest charity) to fight for a fair go for all older Australians with the Fix Pension Poverty campaign. According to the OECD, 26 per cent of older Australians are experiencing poverty, compared to the OECD average of 13 per cent.


In the run-up to the federal election and beyond, we are calling on all Australians to support the Fix Pension Poverty campaign.

Accentuating the positive: Consumer experiences of aged care at home

Posted on 17 July, 2018 at 1:40 Comments comments (0)

A major report by National Seniors Australia has found most seniors receiving aged care at home think workers treat them with respect, met their personal care and support needs, and were well trained.


However, about 50 per cent of people qualified their positive views by saying that better coordination between home care and health services was required, along with improvements to the Consumer Directed Care system.


The report, Accentuating the positive: consumer experiences of aged care at home, was commissioned by the Aged Care Workforce Strategy Taskforce. Report author, Nationals Seniors Australia Research Director Professor John McCallum, said it was important to listen to negative views to target areas for improvement.


“People complained about services being delivered at times or in ways that were inconvenient to the client; a lack of continuity of care for dementia patients; and poor training for dementia care,” Prof. McCallum said. “They also expressed frustration caused by Workplace Health and Safety constraints on cleaning, and poor cleaning services generally; waiting too long to be assessed, and having to accept a lower level package until a higher one became available; poor communication from providers; and poor administration of services generally.”


Prof. McCallum said another major concern was that more than 40 per cent of family members and others providing unpaid care said their health was affected by their caring duties.


Taskforce Chair Professor John Pollaers said the report findings would help build a comprehensive and sustainable workforce strategy for the industry, and in doing so, improve the quality of life of aged care consumers.

Age Pension application process needs major overhaul

Posted on 22 June, 2018 at 3:00 Comments comments (0)

The Centrelink application process for the Age Pension needs an urgent overhaul, according to National Seniors Australia.


National Seniors’ Interim CEO Professor John McCallum said Age Pension applicants had described the process as “too hard, too complicated and too long”.


Prof. McCallum said the Centrelink application process demanded immediate attention given the Federal Government was reforming the superannuation system.


Joint research by National Seniors and Retirement Essentials showed most applicants were dissatisfied with the service provided by Centrelink staff, whose job it was to help eligible retirees benefit from the security of the Age Pension.


The joint research analysed the views of 530 National Seniors members who had applied for the Aged Pension since 2016. It showed less than four in 10 – or 38.5 per cent – were satisfied with the process, 42.4 per cent were dissatisfied and 19 per cent ambivalent.


Applicants said their time and needs were not valued or recognised by Centrelink staff, describing the application process as “generally appalling”, and staff “unhelpful, disinterested and reluctant to answer questions”.


One applicant said the mission of Centrelink appeared to be “to prevent as many people as possible from accessing income support”. Others complained of long wait times (whether phoning or visiting Centrelink offices), complicated forms and processes, and of receiving conflicting advice from different staff.


Prof. McCallum said 82 per cent of seniors sought assistance from Centrelink, financial advisers, friends or family when applying for the Age Pension, rather than attempting it independently. Despite this, many applicants remained dissatisfied with the experience.


The report had identified clear areas for improvement in Centrelink training, internal processes and management.


Prof. McCallum said it was essential the issues were addressed, given there were more than 700 applications for the Age Pension every working day, with a total of 174,000 applications processed in 2016-17.


“Our study provides clear evidence that senior Australians face unnecessary hurdles to access the Age Pension entitlements they rely on for their essential living expenses,” Prof. McCallum said.


“The complexity of the Centrelink processes, combined with insufficient call centre operators, long wait times and insufficient Financial Information Service Officers, is frustrating for older Australians.


“The complexity of the Centrelink processes, combined with insufficient call centre operators, long wait times and insufficient Financial Information Service Officers, is frustrating for older Australians.


“Today, Centrelink’s assistance is at the end of a long wait on the phone or in a queue at the local Centrelink office, an under-resourced (albeit competent) Financial Information Service, or an online service that has been poorly designed for the physical and digital capabilities and service needs of older people.


“While there are system improvements underway at Centrelink, they don’t appear to adequately address the frustrations faced by senior Australians. They are focussed on digital options that replace face-to-face services and Age Pension applicants do not appear to be a priority in the short or medium term.”


Centrelink call centre wait times increased last year, with almost 500,000 abandoned calls to the seniors help line. Prof. McCallum said the Federal Government’s announcement of 1000 additional operators would help ease the burden on busy phone lines.


But other issues, such as the overly complex Age Pension application process, needed to be addressed.


“Systems can be complex but the entry can be made easy with good design,” Prof. McCallum said.


“It’s critical that older consumers are involved in their design to ensure their useability. Similarly, attention to training and supervision can improve consumer experiences dramatically.”


Retirement Essentials CEO Paul Rogan said the research went beyond the anecdotal descriptions of Centrelink being a “nightmare”, to a better understanding of the cause and scale of the problem for senior Australians.


“It is clear the system is not geared for seniors to independently (and confidently) apply for the Age Pension,” Mr Rogan said. “Centrelink and other groups must work together to make it easier for those who are eligible to access the entitlements they rely on to fund their basic needs in retirement.”

Elder abuse action sought

Posted on 11 June, 2018 at 5:10 Comments comments (0)

National Seniors Australia has joined forces with the Australian Banking Association, the Council on the Ageing and Legal Aid to tackle financial elder abuse.


Interim CEO Professor John McCallum said today the group was calling for an online register of power of attorney orders and a dedicated body to crack down on financial abuse of the elderly.


It also wanted standardised power-of-attorney laws across Australia.


National Seniors was a signatory to a joint letter sent to every state and federal attorney-general calling on them to take decisive action at the COAG meeting tomorrow.


Prof. McCallum said about five per cent of older Australians were subjected to financial abuse.


“It’s a heartbreaking situation and banking staff often see firsthand elderly people being taken advantage of by trusted family, friends and carers,” Prof. McCallum said.


“As a society, we can and need to do more to support older people who are being exploited in this way.


“We welcomed the Federal Government’s announcement in February to progress a national plan for elder abuse and their budget commitment in May of $22 million over five years to standardise power of attorney orders.


“But we also need a designated organisation in each jurisdiction where bank staff can be supported to safely report suspected financial abuse for investigation.


“At the moment, police generally require the customer to make a complaint. Apart from the Queensland Public Advocacy Offices, other states and territories often require the bank to make a formal application providing detailed information about the customer, for example their medical history. This is not an appropriate role for the banks.”


Prof. McCallum said the group had called on the state and territory attorney-generals to adopt the Queensland model, where the Office of the Public Guardian has the power to investigate allegations that an adult had been neglected, exploited or abused.


“We are seeking the active participation of all governments and stakeholders to achieve meaningful progress in this area to protect some of the most vulnerable people in our community,” Prof. McCallum said.


“The exact incidence of elder abuse is difficult to come by as it happens within private homes and is often unreported because of embarrassment or unpleasant family dynamics.


“But we do know that as a community, we can do more to prevent this type of abuse, which is why National Seniors is part of this campaign and why we’re calling on the attorney-generals to take action.”

Older women at greater risk of injuries from falls

Posted on 17 May, 2018 at 19:00 Comments comments (0)

A new report has shown falls to be the commonest cause of injury requiring hospital admission, particularly among older women.


The report, Trends in hospitalised injury due to falls in older people 2002–03 to 2014–15, by the Australian Institute of Health and Welfare (AIHW) revealed people aged 65 and over accounted for 30 per cent of injury cases in Australia.


The greatest number of injuries occurred in women aged 85 to 89.


“Overall, people aged 65 or over accounted for 30 per cent of injury cases, with the majority of these being for falls,” the AIHW’s Professor James Harrison said.


“The number of hospitalised injury cases rose from 327,000 in 1999-2000 to 480,000 in 2014-15.


“This equated to one person requiring hospitalisation in every 58 Australians in 1999-2000, rising to about one in 50 in 2014-15.”


This respresented an average rate increase of about one per cent per year, after adjusting for changes in the population structure.


Falls-related injuries made up 52 per cent of all female hospital admissions, compared to 32 per cent of all male admissions.


But a technology-based program called StandingTall may help train seniors to maintain their balance and avoid falling.


The program, developed in Australia, is an individually-tailored, home-based, fall prevention app based around a specific set of balance exercises delivered through a tablet computer.


The app can be accessed via the internet. It includes more than 2000 exercises with video instructions and was designed for older people to use independently at home, allowing them to choose when and for how long they exercised throughout the week.


It recommends a dose of two hours of exercise each week.


The exercises are designed to train both static and dynamic balance skills, while standing on the floor or a foam cushion and while stepping in different directions and on a box.


Trials of the program are expected to start soon in Australia and in the United Kingdom.


University of New South Wales (UNSW) Associate Professor Kim Delbaere said falls in seniors often led to hip fractures and loss of independence, resulting in greater costs for carers, communities, families and loved ones.


“Our previous research has taught us that to prevent falls, older people should exercise for two to three hours per week, or as little as 20 minutes a day,” Associate Professor Delbaere said.


“By embracing technology, we are providing an alternative exercise opportunity, which is engaging, fun and motivating, hoping to generate higher levels of adherence over a longer period.”


Research has shown around half of people who break their hip suffer mobility disability and 25 per cent of all people who break a hip die within 12 months, UNSW said.

Unemployed older people turn to volunteering

Posted on 10 May, 2018 at 4:55 Comments comments (1)

Older Australians often turned to volunteering if they were out of work or had suffered age discrimination in the workplace, a new survey has shown.


The Benevolent Society’s Dr Kirsty Nowlan said many older people who were not in paid employment often became volunteers because they believed they had more to contribute.


In its recent survey of 1,005 Australians aged 50 and over, the society found 60 per cent of respondents had encountered ageism on the job or while job seeking.


“We have known for some time that people over the age of 55 have been experiencing age discrimination both in looking for work and in their workplace and our survey confirms that,” Dr Nowlan said.


“We believe that many older Australians have chosen to volunteer if they cannot find paid work because they have a lot to contribute to the community.


“Volunteering offers connection and a sense of purpose, as well as the chance to learn new skills.


“Additionally, we know from our respite care programs that many people who are retirement age are in a position where they are caring for others, usually family members, such as their grandchildren or spouses.


“This is unpaid work, especially caring for little ones while their parents work, and it is in effect love combined with volunteering.”


The Australian Human Rights Commission (AHRC) has found that being over the age of 55 was a barrier to finding a job or getting more hours of paid work, and 35 per cent of those surveyed had experienced discrimination because of their age.


The AHRC said that Australians aged 65 and older contributed $39 billion each year in unpaid caring and volunteer work, and should be recognised for their role in building strong and healthy communities.


Increasing paid employment of Australians over 55 years by five per cent would add $48 billion to the bottom line of the national economy every year, the commission said.


National Seniors’ research has also shown widespread age discrimination in the workplace and that older Australians have high rates of unpaid volunteer work.


Events including morning teas, lunches and award ceremonies will be held around Australia to mark National Volunteer Week (21-27 May 2018) to thank the estimated six million people who donate their time and efforts unpaid.


According to Volunteering Australia’s 2015 research, people aged 55 and over volunteer 80 hours a year while those over 65 volunteer 104 hours per year, an average of about 2.5 hours a week.

Here's the best science on how you can avoid dementia

Posted on 11 April, 2018 at 18:40 Comments comments (0)

To ward off dementia, do something you're bad at.

If you can play guitar, pick up the trumpet. If you can beat the cryptic crossword, tackle Sudoku.

Oh, and if you're a woman, get married.

That's the advice from a new Australian paper summarising the best available research on preventing cognitive decline and dementia, released on Wednesday.

Every pay day, most Australians squirrel away a little money for old age to ensure they have a comfortable retirement. We don’t treat our grey matter the same way, says Professor Kaarin Anstey, the report's lead author.

Prof Kaarin Anstey, lead author of “A rapidly ageing Australia: cognitive ageing and decline trends”.said,

“It’s like investing in your superannuation. You need to invest in your brain over the course of your life so you have a nice healthy brain when you’re old,” she says.

More than a third of Australians aged between 70 and 90 will develop mild brain decline – slightly impaired memory, decision making and problem solving. About 30 per cent of that group will go on to develop dementia within 10 years.

What can you do now to prevent the onset of dementia later in life?

It often strikes at retirement age – when we are about to make some of the biggest financial decisions of our lives. Studies show people with cognitive impairments get those decisions wrong much more often.

Professor Anstey's report, published by the Centre of Excellence in Population Ageing – a collaboration between the nation's top dementia scientists – highlights the top lifestyle risk factors for brain decline. 

Here's what you can do about them.

Find somebody to love

For women, living with someone, being married, and volunteering all make you more resilient to memory decline.

This result, from a single Canadian study done some time ago, might be down to differences in education between men and women, says Professor Anstey. Women with less education who were married to men with more education tended to get a protective effect.

"We’re finding those educational differences are diminishing now with a younger cohort," she says.

For both sexes, having lots of friends and spending lots of time socialising is very important.

“When you’re interacting with another person, that’s an intellectually stimulating activity. You’re using a lot of your brain to do that,” says Dr Maree Farrow, a researcher at the Wicking Dementia Research Centre in Hobart.

Do something you're bad at

Keeping your brain active is vital to keeping it fit and healthy. Unfortunately, that’s not as simple as it seems.

Even if something is mentally demanding, it won't keep your brain fit. The brain needs new challenges, such as picking up a musical instrument for the first time or studying a new language, Professor Anstey says.

“People who can do a cryptic crossword in 10 minutes flat, it’s not challenging their brain any more.”

Studies also show people who read lots of books and regularly go to museums and the theatre have a lower risk of cognitive decline.

Stay fit

Healthy body, healthy mind. Exercise reduces depression, a major risk factor. It also pumps oxygen into the brain, keeping it healthy.

“In Australia, insufficient exercise is the No.1 modifiable risk factor,” Professor Anstey says. Aerobic exercise and weightlifting are both good but even regular walking helps.

Dementia is also strongly linked to poor heart health, particularly obesity, cholesterol and high-blood pressure. Exercise keeps your heart fighting fit.

People often ask Dr Farrow which aspect of their life they should change to give their brains the best chance.

“You need to think about what’s missing from your life at the moment,” she tells them.

“Is physical activity better than cognitive activity? No. But if you spend a lot of time at work being physically active, you might think about adding intellectual stimulation.”

Seniors suffering because of rising costs

Posted on 23 March, 2018 at 3:35 Comments comments (0)

Many older Australians were struggling to maintain even a modest standard of living because of spiralling power, health and other costs, National Seniors Australia said today.


National Seniors Chief Advocate Ian Henschke said the impacts of rising costs were exacerbated by government rules preventing seniors from earning more than $6,500 a year without losing part of their Age Pension.


Further, the number of home care packages, which enabled older people to stay in their own homes for longer, was woefully inadequate to meet demand and those who did move to residential aged care were being failed by an inadequate accreditation system that needed an urgent overhaul.


In its 2018/19 Federal Budget submission, National Seniors Australia said a recent survey of members, many on low and limited incomes, had revealed many would be happy to work longer.


“One in three age pensioners said increasing the Work Bonus, which we argue should be lifted to $10,000pa, would enable them to continue in paid employment,” Mr Henschke said.


“Most Age Pensioners also cited the adequacy of the pension as the issue of most concern to them.”


Mr Henschke said older Australians feared their access to essential services such as power were at risk.


“We know many seniors are unable to pay for air-conditioning in summer or heating in winter because of the spiralling energy costs,” he said.


“We commend the government’s efforts to bring these under control, but they have come too late for many older people and we constantly hear stories of them going without food, or other essential items, to pay their power bills. That’s why the government should retain the energy supplement and accelerate reforms to lower power costs.”


National Seniors has also called on the government to double the number of level three and four home care packages to ease current shortages.


“More than 100,000 seniors are waiting for these packages,” he said. “If they can’t get the care they need, taxpayers will again be picking up the tab when seniors are forced into residential aged care because they cannot look after themselves at home.


“It’s also essential that the accreditation system for aged care facilities be ramped up. We welcome the government’s recent move to introduce unannounced quality and safety audits but more is needed. We believe that quality surveyors must seek the views of all residents or their representatives rather than the current 10 per cent, to ensure their voices are heard.”