Over several years, consumers have shared their stories with Alzheimer's Australia of their experiences of residential aged care. Although some are good, there are many of concern that relate to a minority of facilities that are not providing good care, and where residents are not being respected and, in some cases, subjected to physical or psychological abuse.
We acknowledge that there are dedicated, compassionate people who are working hard every day to provide the best care they can. There is agreement among all stakeholders that there should be zero tolerance for poor quality care, and a common aspiration to achieve high quality residential care outcomes that respect the rights of residents.
The aim of the paper is to bring providers, staff and consumers together to address the systemic issues in the aged care system that have led to breakdowns in quality care so that we can begin to lay the basis for continuous improvement in quality care.
The paper proposes two lines of action. Firstly, to take the short-term action necessary to give consumers greater confidence in the complaints scheme and accreditation and to ensure minimum standards are in place and being upheld for all residents.
Secondly, to develop a more consumer-oriented system by the greater involvement of consumers in the monitoring, assessment and complaints processes and by much greater transparency in the care outcomes being delivered. Funding issues are important but equally so are leadership and a culture that respects the rights and dignity of older people.
If you have concerns about the quality of care you or your loved one is receiving, the first point of call is the Aged Care Complaints Scheme.
"I don't think it is too much too ask for a bit of common decency in the last months of a person's life."
I have just spent 10 days with my mother in her high care ward.
Firstly, the mornings of most days seem to be quite good, with two carers on duty; one from about breakfast time (7-7.30am) until about 10.30am and the other until about lunchtime (12 noon).
With exercises two mornings per week, the mornings are not too bad.
On the other hand, the afternoons and evenings are not good.
Luncheon is at about 12 noon in the dining room. Then some residents are put to bed and Mum and probably her room-mate (who can barely speak at all) are put in a T.V. room on the outer side of the dining room where they see NO ONE at all until about 3pm when the tea lady brings them a drink of milk-no food. MOST of the ladies speak to them and put the drinks within reach but there are some who don't speak and who leave the drinks out of reach or without lids and filled to the brim-Mum can't lift it or is afraid she will spill it.
Some of the staff come in about 3.30pm and say hello and that they have just come on shift. A few come in and say goodbye, but most don't bother.
Tea is at 5pm, and then Mum is put to bed (by 5.30pm). Windows and blinds are closed and lights turned off, no TV on and no controls given to her. Out of sight, out of mind until 7.30-8pm when the sleeping pills are given.
Still Mum's clothing (clearly marked) is put on other patients and other patients' clothing (clearly marked) put in Mum's wardrobe.
Her hair is still parted wrongly as well although she has told them it is wrong.
But the worst things were:
- I personally heard Mum threatened: "if you don't ... we will put you into bed and you will have to stay there all day. You won't like that, will you?"
- Mum was given a double dose of opening medicine at bedtime after not having a bowel movement for two days.
Asking what to do if she had to go to the toilet in the night, she was told to "poo on the floor". She has not been able to get out of bed at all on her own for 12 months.
- When we visited one night to say goodnight, the nurse on duty told us they had taken Mum's bell away because she kept ringing it.
They told her she had been a very naughty girl.
When I asked why she kept ringing the bell Mum said she hadn't seen anyone for so long, she thought they had all gone away. The bell is her lifeline!
- Mum rang the bell during the night to go to the toilet. The nurse was cross and told her off because she was the only one on duty and they need two people to lift Mum out of bed and take her to the toilet.
- Mum's driver/pump which delivers her medication 24 hours at a time started beeping.
Mostly it is changed on time because she has very strong pain killers and has been on them for years. It does not take long for her to get withdrawal symptoms which are very severe. One carer came in, looked and said there was only one registered nurse on and they were busy. Half an hour later I rang the bell as it was still beeping and the read-out said "pump turned off for too long". The nurse came back and was very cross. I had to leave for their lunch time and when I came back I found that it had been changed-just an hour and a half without medication.
The next day it was half an hour late again.
The night they took Mum's bell away, as soon as I walked into the ward she asked if we had said anything to "them" because they had taken her bell away. We had not complained at all.
This is why I have not sent this report to the hospital.
If they behave like this when I am there, what do they do when I am not there?
I was at the hospital with Mum for about six hours every day.
There are plenty of other things I could complain about-even things about other patients.
I am sure you have heard it all before.
The answer is always "not enough funding" but common decency does not cost anything.
Just a wave as they go past the room on the way somewhere else would be welcome.
Some of the nurses bring in DVD's and put them on, some joke and talk but the days are long when no one seems to care!
I have been told that I am being a bit harsh-I don't think it is too much too ask for a bit of common decency in the last months of a person's life.
"Care homes can be well run with good management and committed staff"
I am very pleased with the facility where my wife has been a resident for nearly four years.
The staff are very caring and really understand my wife and her moods although she is not able to communicate verbally. I also enjoy a very good relationship with all the staff and management.
The use of drugs is a very difficult area and I feel staff at the facility manage it very well with a sensible balance between my wife's lifestyle, safety and the wellbeing of other residents. They have certainly explored many other options, especially related to pain, before considering the use of drugs and I am always consulted prior to any significant change.
Care homes can be well run with good management and committed staff.
"The employees have breached a number of laws"
I recently became aware of extremely offensive and inappropriate postings on Facebook by employees at a residential care facility.
They uploaded an image of an elderly female resident with dementia and posted degrading and inappropriate comments on the photo.
Both the dignity and the privacy of the elderly female resident were compromised. Our understanding is that the employees have breached a number of laws including abuse of the elderly, racial vilification, human rights, privacy and defamation.
It is disturbing that persons who are entrusted with the care and protection of our elderly find amusement in publicly exposing them to ridicule.
"I have begged ministers, senators and commissioners for help"
Since Dad moved into the home I have lodged complaints with the Aged Care Complaints Scheme in the hope that Dad and my concerns regarding his care and well-being would be addressed.
Unfortunately this has not been the case. I have even begged ministers, senators and commissioners for help. I'm frustrated -like many-with what I would call an unfair and unjust system that fails to protect our vulnerable elderly.
"If my father was living in his home he would have access to choice of service"
My father does have some type of access to a resident physiotherapist.
However, the conduct and services of this physiotherapist is and has been questionable. Physiotherapy services have been a concern in all my complaints to the Aged Care Complaints Scheme. Since my father's amputation in 2011 his mobility and sitting tolerance has decreased dramatically. Unfortunately, my father's decrease in mobility has been allowed to occur by the facility and the Scheme. If my father was living in his home he would have access to choice of service.
"The staff member called my dad a 'grumpy old man' and then complained about him"
On one occasion, Dad told me he had soiled his pants and asked a staff member to clean him up.
He had to ask three times over a period of time for it to happen after which the staff member in question called him a "grumpy old man" and then complained about him. The facility documented that my father was verbally yelling and rude. He might have been grumpy but I think anyone forced to lie in their own faeces over a period of time would be the same. On another occasion he was told to eat his breakfast before they would clean him up. And on yet another occasion I was on the phone to Dad and had to listen to him plead with nurses for help.
"The people who are working in these areas should be admired"
I want to know, who sets the benchmark for the payment of carers who work in nursing homes?
The people who are working in these areas should be admired and I wonder if they are really compensated.
"I believe the nursing home should have managed my mother's health better"
My mother was in a nursing home for just under two years. Unfortunately, she passed away in June this year of sepsis secondary to pneumonia and dehydration.
I believe the nursing home was neglecting her and they should have managed my mother's health better and contacted us earlier about her not eating and drinking so we could together come up with another solution. I think they just waited until her treating GP said 'time to call an ambulance'.
"How can we be sure that care is being given as prescribed by the doctor and other health professionals?"
My mother-in-law's doctor prescribed specific instructions for oxygen on her Care Plan. These instructions were not followed and when we asked to see the Care Plan, we were only permitted to see it on a computer screen with a nurse present and were told that, according to company policy, we could not have a hard copy.
This raises serious concerns about quality of care, transparency and accountability. If there is no copy of the Care Plan in the resident's room, how can the carers be expected to remember what should be done for each resident under their care? How can the resident's family be sure that the care is being given as prescribed by the doctor and other health professionals?
"There is great communication with staff"
My husband is in residential care now. There is great communication with staff.
I like the layout of the place. In so many places there were locked doors and blank walls. I also like all the activities and outings.
"I am determined to see a change to current laws regarding Aged Care"
I am determined if at all possible to see a change to current laws regarding Aged Care. Australia has mandated staff-child ratios and qualification requirements under the National Quality Framework. This is legislated to protect our children and provide better care and educational outcomes. I believe that we should be affording the same type of protection under law for our equally vulnerable portion of the population: the elderly.
To those that say it is too hard to legislate mandated staff-resident ratios in the aged care sector, I say, it has already been done in the care and education sector for our children. Why for goodness sake do we have to keep on hearing stories of neglect for elderly people? Why don't we act? I find it very painful to relive my own personal experiences relating to my mother's time in residential care. She had Alzheimer's and passed away in 2009 while in a nursing home. But I am convinced that legislating for mandatory staff-resident ratios and qualifications is a way forward.
"The system certainly needs to change from the current ways"
I'm an AIN nurse with a certificate in dementia care. I've been in nursing for eight years now and I think the system certainly needs to change from the current ways.
There are too many cracks to patch up in the aged care sector; too much paperwork has put residents second.
The staff turnover at the nursing home where I work is a mess. Residents deserve correct care and more compassion; we urgently need more staff with higher care ratios.
"They have robbed me of any future life with my dear wife"
Prior to entering hospital with shingles, and later a UNI, my wife showed very little outward signs of Alzheimer's. Her health declined very rapidly after an extended 11 weeks' stay in seven different hospitals and nursing homes.
I believe what contributed to this was a lack of proper treatment of bed sores, ulcers and other ailments which developed during her prolonged stay in hospitals and aged care facilities.
I am so distressed with the treatment my wife obtained during her stay in both hospitals and aged care homes. They have robbed me of any future life with my dear wife. My experience has made me very, very concerned with the quality of residential care homes in Australia. I see it as a massive industry where every home seems to cut costs of maintaining adequate staff as much as possible without being accountable for the health of their residents.
"There was a lot of one-on-one with patients"
I put my husband into respite at a nursing home. There were two main cottages for people with dementia, no more than 12 people in each cottage. Three staff on all the time. Fully secure. There was a lot of one-on-one with patients. Each patient had a primary carer. They had movies playing. Music playing.
At one point my husband was pacing so much he wasn't eating. So every time he passed the desk they gave him a piece of food. You need to assess the personality and choose the home that suits this personality. When it was time for my husband to pass away they bought palliative care to his room. I would like to see this type of set up in more nursing homes; it is more conducive to the patient.
"This accident should have been prevented"
My husband, who is a resident at a nursing home, was left unaccompanied in the lounge area during which time he fell.
This fall resulted in a massive swelling in his eye, stitches and fear that there could be a blood clot and damage to his sight. This accident should surely have been prevented.
"The staff at the nursing home did not know or care about Dad's treatment"
My father entered a nursing home in 2001 after sustaining a stroke. It became obvious within 3-4 days that the staff at the nursing home did not know about my Dad's condition or care about Dad's treatment - there were issues with medication, food and Dad had a fall within the first few days of entering the home.
Dad stated that on a number of occasions he had difficulty in reaching staff for assistance with food and toileting, he was subjected to rough treatment at the hands of staff. He also had difficulty in accessing an appropriate health professional on one occasion when he was experiencing chest pain, which resulted in a trip to the hospital where he was diagnosed with a lung infection.
The situation at Dad's first nursing home came to a head when my father rang me and told me he was feeling unwell and once again could not get assistance from staff. When I arrived at the home I found Dad lying in bed covered in vomit almost convulsing; he had a temperature of 40 degrees and he was lying in a wet and dirty nappy and I noticed blood on his nappy. This once again resulted in a trip to hospital and a four-week recovery period, diagnosis, and septicaemia from his peg tube.
My Dad was then transferred to a second nursing home which I thought was the best of a bad bunch for a few years but the last 18 months before he passed away there were ongoing almost daily dramas. These included rough treatment, both physical and verbal, two broken fingers, and a foot injury that went untreated and was so bad the doctor wanted to remove Dad's leg at the groin.
In my opinion, my Dad passed away five to ten years earlier because of the treatment he received and his last ten years on this earth were filled with misery and pain.
"It's not just physical abuse but also psychological abuse"
I would like to point out that it is not just physical abuse but also psychological abuse that we need to worry about in nursing home care.
My mother broke her leg and my father could no longer walk so we were forced to place them in nursing home care.
My father had been presented with an expensive watch from his grandsons and one morning he took it off to have a shower and on returning, found that it had been stolen. The police were notified but did not appear for three weeks and when they did come, they did not interview anyone.
A necklace my mother owned was also stolen when carers came to her home in order to shower her (along with other pieces of jewellery).
I have since removed my parents (aged 98 and 97) from this home and placed them in another.
"If it wasn't for the wonderful staff...he would go backwards"
The suitability of the aged care is fantastic, but it costs me dearly.
If it wasn't for the wonderful staff that let him wash and clean and post letters, he would not have anything to do and he would go backwards. The staff are not trained.
"Her mother had been chemically restrained without proper authorisation"
For most of the year, my girlfriend has been concerned about her mother's treatment at a facility. Her primary concern was that, following an incident with a butter knife, her mother had been chemically restrained without proper authorisation. On a number of occasions my girlfriend raised her concerns with three different senior members of staff. She was told "she needs the Risparadol" and "we can't have your mother disturbing other patients".
The situation culminated in my girlfriend's mother collapsing on an outing and being unable to be roused. Her mother was taken by ambulance to Royal North Shore Hospital and kept in overnight. She was released the following day having being treated for drug toxicity with advice from the senior doctor the antipsychotic was not the right drug for her mother.
The incident was very stressful for my girlfriend and she continued to express concerns about the drug regime. My girlfriend and her sisters became involved and discussed the situation with the management. Her sisters were told that the drugs were necessary to control their mother's behaviour and threats were made about their mother being evicted and that if my girlfriend continued to complain to staff that the police would be called to have her removed from the facility.
As far as her mother is concerned, there has been a relatively positive ending due to my girlfriend's agitation. Her mother has been taken off the antipsychotic and her strength and awareness returned and various diversional therapies have been put in place.
"Residents were often left in solitary confinement"
My parents both resided in the same residential aged care facility for over a two-year period.
Despite the facility's claim that they were an organisation committed to a 'multifaceted and flexible Lifestyle Approach', residents were often left in solitary confinement (their room) all day apart from meal times or toileting (if they were lucky). The facility did not have an area suited for group activities, or even outside the room individual respite, where residents could spend time.
"The physical and mental health of residents should be promoted...this never really happened"
The involvement of family or representatives in my parents care was problematic.
Although the Accreditation Standards states that the physical and mental health of residents should be promoted and achieved at an optimum level in partnership between the resident (or his or her representative) and the health care team, this never really happened. There was a lack of discussion regarding issues including appropriate pain management, a lack of care plans (at least available for me to view), lack of notification regarding residents' meetings, and no notice from the facility that accreditation audits were being conducted.
"Toileting was a major issue"
Toileting was a major issue - there are few things worse for a family member than arriving for a visit and finding the resident in a pool of urine or obviously smelling of faeces.
This is distressing for residents and for relatives and demonstrates a lack of proper care and good hygiene practices. I spoke with staff about this on a number of occasions but they never seemed too worried about it. I eventually met with the Lifestyle Manager and Care Manager who seemed to take my complaints seriously but this is an area that many staff need effective leadership in.
"I wanted to know that people knew what they were doing"
My mother was in a couple of facilities before I eventually found the right home I was looking for: skilled professional staff 24 hours a day.
I wanted to know that people knew what they were doing. I wanted them to look at my mother in a holistic way and I wanted to see the residents happy and content. Those that could were busy, and peaceful, and there were sunny places to sit.
"I was told my husband was mentally ill"
High care respite was an issue for us. My partner was 61 when he entered into respite care at an aged care facility in dementia-specific high care. In the first week, his behaviour and agitation became worse and his children were contacted on a number of occasions. It was not until my husband had his hands around a carer's neck a week later that a doctor was called.
Later that day he was sent to hospital and I was told that he was mentally ill and would never be allowed back to the facility or any others run by the same management. The inference was that I had not told them of his mental problems. This was perplexing to say the least as his behaviour was under control before entering respite. My husband had a week in a high dependency psych ward as he had nowhere else to go.
There is a huge shortage of good high care residential respite. Without respite I could not continue high care.
"It was a nightmare for my husband and for us too"
In 2001, my husband was diagnosed with Younger Onset Dementia and in the 10 years that followed, we learned a lot about the huge shortcomings in care and services for people with dementia. Some of the most challenging experiences, however, came during the last year of my husband's life in 2010 when he had four acute hospital admissions spanning 18 weeks for medical co-morbidities.
The admissions should have been routine but with his co-existing dementia, it was a nightmare for him and for us too. Many things happened to my husband in those 18 weeks that were alarming and left us in disbelief on some occasions. One of these involved my husband being admitted to a local teaching hospital for acute renal failure. On the third day, my husband tried to climb over the bedrails to follow us when we were leaving after visiting hours. Someone on duty made the decision to give him five times his dose of Risperidone to quieten him down which rendered him unconscious for the next five days. Other disturbing incidents involved my husband being physically restrained at both wrists and ankles for a period of 48 hours post-op, and the significant dosages of pain management medication which left him unresponsive and also affected his swallow reflex. We eventually brought my husband home for five months to be cared for by myself and my children and during a subsequent stay in the local hospital for a medication review, he developed aspiration pneumonia. Following treatment, he returned home but passed away two days later.
"I'm worried that there will be ramifications for me and my mum if I make a complaint"
My mother was moved from hospital into a nursing home after the hospital obtained an emergency guardianship for my mother. I have not been advised of any changes including when she was moved from hospital to the nursing home, that she was prescribed antipsychotics or that she'd been transferred to the dementia ward. The nursing home has at no time asked me questions regarding my mother's care needs.
Two months into her stay at the nursing home, Mum was put on antipsychotic medication which was completely unnecessary. She has been subject to excessive force from staff, intimidation, a lack of dietary and weight management, lack of an appropriate and safe environment and very poor incontinence management. After a physiotherapist assessment, which I requested, my mum was labelled immobile with no program provided to improve her mobility. I'm extremely worried that there will be ramifications for me and my mum if I make a complaint. I am constantly having to diffuse situations and put myself in the middle.
"She was in a brilliant nursing home"
My mum passed away with Alzheimer's.
She was in a brilliant nursing home. It was built with a circuit with hand rails and people always got exercise.
"They are a lovely group of genuine caring people"
I very much appreciate the time and effort the team at the respite facility I take mum to puts in to care for mum when she is with them.
They are like a second family. I know she is always safe, warm and well fed. They are a lovely group of genuine caring people. They all deserve our heartfelt thanks and commendation.
"She is too scared to ask for the smallest of things in case she is labeled as a constant whinge"
I'm sure you've heard it before
that my mother deserves something, so much more.
I need my voice to be heard
that the whole nursing care model is totally absurd.
These people, our parents, sisters and brothers
are to live a life not acceptable to others.
The care they are given is all monetary driven,
the food they are expected to eat
is far below standard, even for those living on the street.
Without the people to properly care
for our family members it seems so unfair.
Why should my mother so fair and so dear
go to bed every night in unnecessary fear:
fear that the staff will get angry and mad
because she's lost the concept of time she once had.
She's expected to live to their timetable and drill
and is told to treat this as home if you will.
But at home she has company,
at home she is heard,
at home she is someone,
not just two words.
They promise "we'll be back and what would you like?"
But these are words just to keep residents quiet.
Every mother is special, this much I know,
but my mother is precious and her carers need know.
I informed them of mum's likes and her woes,
there's still cheese on her toast and milk in her tea.
She is too scared to ask for the smallest of things
in case she is labeled as a constant whinge.
Her life, pre-stroke, had improved for her at last.
She was living close to her friend and coping with the past.
She has buried her sons, one by one, years apart.
She has raised six children all healthy and fair
with well-defined boundaries and the utmost of care.
Please help to change the vernacular.
Their living conditions don't need to be spectacular.
Nursing home standards are well below par,
no place for your family, no place by far.
"Their HR practices are woeful"
From my HR background I see huge waste in the industry from poor HR practices by management. Management may well know the Aged Care Legislation and the industry standards, but their HR practices are woeful. I have seen staff treated very badly in the aged care facility that I work in, and have heard worse stories from my colleagues about other workplaces. I think the problem is that because the benefit of good HR practices cannot be measured such practices are treated as 'costs' to the organisation. Consequently the training and induction of new staff is hopelessly inadequate, resulting in poorly trained and unhappy staff, and directly resulting in a high turnover of staff.
I am convinced that if management of aged care facilities had a better knowledge of best practice HR functions they would be able to manage a lot better with their limited budget - staff would be more skilled, more motivated, more committed and more supportive of their colleagues as well. It would follow on that they would then work more efficiently, while sacrificing nothing as far as treating the residents like real people through their shift.
"For some residents it must become some sort of living hell"
Poor practice I've seen in the aged care facility that I work in includes when a resident asks to be taken to the toilet close to meal time they will be told to wait or 'just go' in their pad otherwise the worker will get in trouble from their colleagues for running late.
Residents are taken up to the activities room in the morning even when, if asked (and usually they are not), they have stated that they do not want to. And if you are actually seen talking to a resident it is assumed by your colleagues that you are not working. So through the day the only interaction a high care resident will have with the staff will be when the staff put them on the toilet and off the toilet etc through the day with no eye contact, communication or touch other than to roll them over on the bed to dress and undress them. For those residents who do not get regular visitors it must become some sort of living hell - and it is no wonder so many residents suffer depression.
"The project was excellent...it raised hope in the community"
I was involved in a project this year educating carers to how to live better with a person with dementia.
The project was excellent, but it raised hope in the community, then the funding finished. We need more programs like this funded for more time.
"We are grappling inadequately with the problem of an ageing population"
As a 'young' country I think that we are grappling inadequately with the problem of an ageing population, and that problem is only going to get worse.
It is foolishness to think that, if the current system is not working, all we need to do is keep doing the same thing only more so and it will solve the problem. Clearly it will not, and is only a recipe for disaster.
"This event has traumatised my family"
My mother was living in a residential aged care facility when she passed away. Her health went downhill very suddenly and to my disappointment so did the level of care at the facility.
I received a phone call from a duty doctor advising me that my mother's condition was serious and she was unlikely to last the day. Our family's instructions and that of her doctor were that my mother was to be kept comfortable and pain free at all times. In my mother's final days these instructions were not carried out and if not for very persistent and forceful family intervention she would have endured an even more painful passing.
I think the fault clearly lies with the administration model of aged care facilities which dare I say from this experience I can only see it driven by profit at any cost.
Residential care staff are trying to do an impossible task set for them by management budgets that in this case did not provide sufficient staffing to attend to my mother's needs properly and as instructed in her final hours.
The agonising and painful death experienced by my mother at the facility traumatised my family and this sort of thing should never happen in this world we live in today.
"The trial for a consumer directive care project has taken off so well"
My wife has younger onset dementia. She had behavioural issues and stayed a year in a facility that had appalling conditions.
I then was able to get on a trial for a consumer directive care project. It has made a huge difference. It has taken off so well, one comment from a man in the group was "first there was button up boots, then we had sliced bread, and now there is CDC".