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?
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.
Prescribing practices vary widely between institutions. From shutterstock.com
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.
Reporting issues
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.
It’s an uncomfortable image to consider: an elderly person – perhaps somebody you know – physically restrained. Maybe an aged care resident deemed likely to fall has been bound to his chair using wrist restraints; or someone with dementia acting aggressively has been confined to her bed by straps and rails. These scenarios remain a reality in Australia.
The Australian government has recently moved to regulate the use of physical and chemical restraints in aged care facilities. This comes ahead of the Royal Commission into Aged Care Quality and Safety.
Certainly this is a step in the right direction – but banning physical restraint is unlikely to remove it from practice. If we want to achieve a restraint free approach we need to educate the sector about viable alternatives, which aren’t always pharmacological.
The rate of physical restraint in Australia is difficult to ascertain. One study across five countries examining the care of residents over one week reported between 6% (Switzerland) and 31% (Canada) of residents had been physically restrained.
These figures suggest a substantial, ingrained issue with multiple contributing factors. Issues might include inadequate staff knowledge and skills, insufficient resources, and difficulty accessing specialist services.
While injuries caused directly by physical restraint could include falls and nerve injury, the impacts go beyond this. A significant consequence of restraint is its immobilising effects which can lead to incontinence, cognitive decline and a general deterioration in a person’s physical condition.
In physically restraining residents, staff are failing to employ other evidence‐based interventions. Behavioural and psychological symptoms of dementia can be managed by strategies such as improving sleep, controlling pain, music therapy, orientation therapy, and, if required, one-to-one care.
Preventing falls requires a multi-pronged approach including strengthening, balance training, medication review and co-ordination of care between doctors, nurses and therapists.
Physical restraint breaches a person’s human rights and dehumanises older members of our community.
Restraints don’t work
Our recent review of studies into the practice identified 174 deaths of nursing home residents due to physical restraint. The eight studies reviewed came from the US and Europe between 1986 and 2010.
This research reaffirmed the view that restrained individuals still experience falls, which the restraints often seek to prevent. But perhaps most compelling were the findings that physically restraining patients with dementia increases agitation, worsens behavioural and psychological symptoms, and hastens their cognitive decline.
Care staff need to be better equipped to look after patients without resorting to physical restraint. From shutterstock.com
We’ve also undertaken a detailed analysis of resident deaths in Australian nursing homes reported to the coroner between 2000 and 2013. This uncovered only five deaths due to physical restraint. All residents had impaired mobility and the physical restraints had been applied to prevent falls. The residents died from neck compression and entrapment caused by the restraints.
Current processes
Most would expect the use of physical restraints would be closely monitored, with any harm reported to a regulatory or professional body. This is not necessarily the case in Australia.
Reporting often lags due to an unclear understanding about what constitutes physical restraint, and perhaps because little is forthcoming in the way of alternatives to address these residents’ care needs.
The only systematic voluntary scrutiny that could apply exists in principle, though not largely in practice, via the National Aged Care Quality Indicator Program. Fewer than 10% of aged care providers around the country participate in the quality indicator program, and the results of these audits are yet to be released publicly.
It’s only when a death occurs that a report to an independent authority – the Coroner’s Court – is made.
Similar laws introduced in other countries to ban physical restraint haven’t worked. In the US, there was an initial decrease in use of restraint and then a gradual return to previous levels.
Abolishing the use of physical restraints on nursing home residents remains challenging because of the widespread but incorrect perception that physical restraints improve resident safety. Nursing staff report using physical restraints to guarantee residents’ safety; to control resident behaviour while fulfilling other tasks; or to protect themselves and others from perceived harm or risk of liability.
Changing laws does not change attitudes. Education and training is required to dispel the myths and inform that better options than physical restraint already exist. Otherwise staff, family and the general public will continue with a mistaken belief it is safer to restrain a person than allow them to move freely, or that restraint is necessary to protect other residents or staff.
Our team convened an expert panel to develop recommendations for addressing the issue. We considered three of our 15 recommendations to prevent the use of physical restraint among nursing home residents the most important.
The first is establishing and mandating a single, standard, nationwide definition for describing “physical restraint”. A universal definition of what constitutes physical restraint enables consistent reporting and comparability in nursing homes.
Secondly, when there are no viable alternatives to physical restraint, any use should trigger mandatory referral to a specialist aged care team. This team should review the resident’s care plan and identify strategies that eliminate the use of physical restraint. This requires improved access to health professionals with expertise in dementia and mental health when a nursing home calls for help.
Thirdly, nursing home staff competencies should be appropriate to meet the complex needs of residents, particularly those with dementia. This is the long term solution to eradicate the need to apply physical restraint and is achievable with national education and training programs.
The harm from physical restraint is well documented, as are the potential solutions. Changing the legislation is a necessary step, but will not change practice on its own. Addressing as many of the underlying contributing factors as possible should commence alongside the government’s call for tougher regulations.
Many caregivers in Asia can agree, it’s super hard to find resources and in some countries, it’s hard even to know where to start. When we go online there are so many websites and resources, it’s hard to even know where to start. It’s hard especially when a lot of information tends to be advertisements for private organisations promoting their services. When this post from Monica Cations post popped up on twitter, it was like, wow, what a great idea!
Let’s have one for countries in Asia. The list is below is one for Asia, and if you wish to view the full list of organisations, you can visit https://www.alz.co.uk/associations
Many diseases develop and become more likely as we age. Here are some of the most common conditions, and how you can reduce your risk of getting them as you clock over into a new decade.
In your 40s
Maintaining a healthy weight can reduce the risk of developing arthritis, coronary heart disease, and other common and related conditions, including back pain, type 2 diabetes, stroke, and many cancers. But almost one-third of Australians in their 40s are obese and one in five already have arthritis.
From the age of 45 (or 35 for Aboriginal and Torres Strait Islanders), heart health checks are recommended to assess risk factors and initiate a plan to improve the health of your heart. This may include changing your diet, reducing your alcohol intake, increasing your physical activity, and improving your well-being.
If you don’t already have symptoms of arthritis or if they’re mild, this decade is your chance to reduce your risk of the disease progressing. Focus on the manageable factors, like shedding excess weight, but also on improving muscle strength. This may also help to prevent or delay sarcopenia, which is the decline of skeletal muscle tissue with ageing, and back pain.
Achieving and maintaining a healthy weight will set you up for decades of better health. Sue Zeng
Most people will begin to experience age-related vision decline in their 40s, with difficulty seeing up close and trouble adjusting to lighting and glare. A baseline eye check is recommended at age 40.
In your 50s
In your 50s, major eye diseases become more common. Among Australians aged 55 and above, age-related macular degeneration, cataracts, diabetes-related eye diseases and glaucoma account for more than 80% of vision loss.
A series of health screenings are recommended when people turn 50. These preventive measures can help with the early detection of serious conditions and optimising your treatment choices and prognosis. Comprehensive eye assessments are recommended every one to two years to ensure warning signs are detected and vision can be saved.
National cancer screening programs for Australians aged 50 to 74, are available every two years for bowel and breast cancer.
To screen for bowel cancer, older Australians are sent a test in the post they can do at home. If the test is positive, the person is then usually sent for a colonoscopy, a procedure in which a camera and light look for abnormalities of the bowel.
In 2016, 8% of people screened had a positive test result. Of those who underwent a colonoscopy, 1 in 26 were diagnosed with confirmed or suspected bowel cancer and one in nine were diagnosed with adenomas. These are potential precursors to bowel cancer which can be removed to reduce your future risk.
To check for breast cancer, women are encouraged to participate in the national mammogram screening program. More than half (59%) of all breast cancers detected through the program are small (less than or equal to 15mm) and are easier to treat (and have better survival rates) than more advanced cancers.
If you’re a smoker, quitting is the best way to improve both your lung and heart health. Using evidence-based methods to quit with advice from a health professional or support service will greatly improve your chances of success.
Quitting smoking is the best way to improve your health. Ian Schneider
The build-up of plaques in artery walls by fats, cholesterol and other substances (atherosclerosis) can happen from a younger age. But the hardening of these plaques and narrowing of arteries, which greatly increases the risk of heart disease and stroke, is most likely to occur from age 65 and above.
Exercise protects against atherosclerosis and research consistently shows any physical activity is better than nothing when it comes to heart health. If you’re not currently active, gradually build up to the recommended 30 minutes of moderate-intensity exercise on most, preferably all, days.
Other potentially modifiable risk factors for stroke include high blood pressure, a high-fat diet, alcohol consumption, and smoking.
Your 60s is also a common decade for surgeries, including joint replacements and cataract surgery. Joint replacements are typically very successful, but are not an appropriate solution for everyone and are not without risks. After a joint replacement, you’ll benefit from physiotherapy, exercise, and maintaining a healthy weight.
The treatment for cataracts is to surgically remove the cloudy lens. Cataract surgery is the most common elective surgery worldwide, with very low complication rates, and provides immediate restoration of lost vision.
In your 70s
Many of the conditions mentioned above are still common in this decade. It’s also a good time to consider your risk of falls. Four in ten people in their 70s will have a fall and it can lead to a cascade of fractures, hospitalisations, disability and injury.
Osteoporosis is one cause of falls. It occurs most commonly in post-menopausal women but almost one-quarter of people with osteoporosis are men. Osteoporosis is often known as a silent disease because there are usually no symptoms until a fracture occurs. Exercise and diet, including calcium and vitamin D, are important for bone health.
Older people are also vulnerable to mental health conditions because of a combination of reduced cognitive function, limitations in physical health, social isolation, loneliness, reduced independence, frailty, reduced mobility, disability, and living conditions.
In your 80s and beyond
Dementia is the second most common chronic condition for Australians in their 80s, after coronary heart disease – and it’s the most common for people aged 95 and above.
Early diagnosis is important to effectively plan and initiate appropriate treatment options which help people live well with dementia. But dementia remains underdiagnosed.
Around 70% of Australians aged 85 and above have five or more chronic diseases and take multiple medications to manage these conditions. Effective medication management is critical for people living with multiple conditions because medications for one condition may exacerbate the symptoms of a different coexisting condition.