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Community Affairs References Committee
Care and management of younger and older Australians living with dementia and behavioural and psychiatric symptoms of dementia

SALTARELLI, Ms Lynda, Communications Advisor, Aged Care Crisis

SPARROW, Ms Linda, Committee Member, Aged Care Crisis

Evidence was taken via teleconference—

CHAIR: I welcome representatives from Aged Care Crisis, who are appearing via teleconference. Thank you for appearing. I appreciate that it is a little more difficult on teleconference, so thank you.

I understand that information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. We have your submission, thank you very much. I would like to invite one or both of you to make an opening statement and then we will ask you some questions.

Ms Sparrow : In a moment, Lynda Saltarelli and I will be doing a joint presentation on behalf of Aged Care Crisis. I will speak now about the prevailing culture within residential care and some of the very urgent staffing needs which we believe must be addressed to achieve the sort of care we would all wish for those living with dementia and BPSD. After I have finished, Lynda Saltarelli will speak about the issues relating to the current complaints scheme and the need for greater transparency in the aged-care residential sector.

Our statements do focus on the care provided to people living with dementia and BPSD within the residential care sector, which is where our main interest is. I will start by saying that I am informed by my long-term role within Aged Care Crisis, as well as being the main carer for several family members and friends who all required residential care, including my mother, who lived in aged-care homes for five years. I was also a community visitor with the Office of the Public Advocate here in Victoria for 10 years, and visited many state-monitored homes where people with dementia and BPSD live.

We believe that there needs to be a significant cultural change in relation to caring for people who have dementia. In particular, there is the need to accept old age in all its complexities and varieties, including the experiences of disorientation and confusion that living with dementia so often bring. We believe, of course, that people with dementia deserve the same respect and care that we would all want at the end of life or with the early onset of dementia. Too often these residents have what we might call 'an early social death', have little agency, and they are often locked away in a kind of half-life, with minimal staff to care for them. Very often their needs are not considered to have the same significance or urgency as those of the rest of us.

We find that it is all too easy for staff in our homes to become desensitised and for people to become a mere room number, a feed or a toilet change. Once this happens, it is so much easier to ignore all their needs and not to provide the comfort and solace that is so often sorely needed. Desensitisation makes it easier still to do many things that we would not normally do to others, such as leave residents unattended for long periods. Aged Care Crisis hears of people who were left for up to five hours in a day room in front of the TV, for example, or in their rooms for a long period of time and to disregard the pain and discomfort that they experience

We know, too, than providing pain relief and palliative care does not occur to the level it should with many of these residents, undoubtedly leading to some of the behavioural problems. So that is our first comment. We would like to see a cultural shift in many aged-care homes where people with dementia and BPSD live. There needs to be a leadership team in every home where the full humanity of these individuals is emphasised and not minimised.

The other issue that I would like to speak about relates to staffing, because most of the issues concerning people with dementia and managing their behaviour within the residential sector can be referred back to some very basic staffing issues. Skilled and sufficient staffing is the basis of the care and protection of all residents at aged-care homes, and those with dementia are sometimes more vulnerable than other residents because they are not normally able to advocate for themselves. Many people we speak to do not realise that there are no mandated staff-resident ratios in aged-care homes. Currently the legislative requirement is only that 'sufficient' staff are on hand to provide necessary care. I am afraid 'sufficient' is certainly open to interpretation.

Staffing is the biggest expense—usually about 78 per cent of any aged-care home's budget—and it is the area that is most often cut when people are seeking to restrain costs. But there is no cheap way to care for vulnerable people and it is our responsibility as a community to find ways to do this. We would not tolerate such ratios where small children were involved—for example, in childcare centres or kindergartens—and yet the vulnerabilities at the end of life and the beginning of life are not all that dissimilar.

We know that night staffing in many homes is particularly scant. Last year it was revealed that there was one home where they had no-one on duty for 10½ hours. People were left alone in that home. We have staff and family members telling us of instances of one carer to 80 or 100 people on evening and night shifts. As a community visitor, I have visited a supported residential service here in Victoria where 52 residents, all with dementia, had only one staff member on duty at night.

We also note that the number of registered nurses on hand is declining. The AMA cites one RN for 120 residents in some instances. And now there is no need to have a registered nurse on site, only on call, except in New South Wales, where state regulations prevail. The Aged care workforce final report2012 states that 68 per cent of care staff are now PCAs. These form the largest occupational group and the one that is fastest growing, while the number of RNs is declining. Yet the care needs have never been higher. Residents generally have more complex needs and often more challenging behaviour, which is exacerbated by the fact that their needs are not catered for with ever-declining staff levels.

We find that compassionate staff are frustrated that they are unable to perform the duties required of them to their satisfaction and that of residents. Family members express to us their concern about the overdependence on casual staff who have little understanding of the needs and ways of individual residents. We are undoubtedly losing some of the best people. So even the most basic care is sometimes hard to achieve. For example, we hear of many instances where there is no time to ensure that residents with dementia who need assistance have actually eaten their meals.

The other issue relating to staffing that I would like to speak about is the lack of skills and training. Aged Care Crisis's preferred model, as expressed in our submission, is that of a specialist geriatrician leading a team of doctors as well as skilled nurses and other health positions. But now we have a situation where often there is not even a registered nurse on duty, as I have already mentioned. There is a shortage of general practitioners to visit aged-care homes, and those who do struggle to find the time to devote to those residents with dementia and BPSD. Residents are often rushed off to hospital every time some minor emergency occurs as there is no-one on duty who is able to deal with infections or untoward health incidents. One GP who contacted us said that the skill level of staff is now so low that she could not be sure that her instructions would be followed, and therefore she felt that she had to send residents to hospital, even with minor illnesses.

There is also a great need to have skilled occupational therapy available for dementia and BPSD residents. There are hours spent in barren dayrooms and wandering corridors in homes. It is no wonder that aggressive behaviour sometimes results. Often the therapy provided is inappropriate. I have been in homes where adults are expected to enjoy finger-painting and colouring-in. I was very pleased to see that in rural Victoria there was a recent report on a home with a farmyard of animals to interest residents who came from farming communities. I am aware of some other homes where gardens and other outdoor areas and programs are developed to interest residents.

There is also a lack of physiotherapy. I used to observe, when caring for my mother, that often residents who came into her home walking would be unable to walk within three weeks. I can never understand why more homes do not use music therapy. Almost everyone responds to music for pleasure or as a calming influence. We believe we need to have improved skill levels and ongoing training and mentoring for staff throughout the system. This would greatly improve the lives of residents living with dementia and BPSD.

Many of the people who responded to this inquiry have probably mentioned the overdependence on psychiatric drugs. We would like to add our voice to the fact that having insufficient staff is clearly one reason for the overuse of these strong drugs in managing people with dementia. Often these drugs are administered by PCAs who, we believe, do not have the skill and experience to do this. Drugs increase the haze that dementia brings. Aged Care Crisis has received several reports from family members who say that they have not been consulted when these drugs are being used, and yet these people best know the residents and the likelihood for side effects.

We need a huge cultural change in managing people with dementia in residential settings. Something needs to be done about having insufficient staff, which is often the case, and the need for ongoing mentoring and skill training to improve the lives of these people. Lynda Saltarelli will talk about the difficulty in finding suitable places for family members experiencing dementia and the need for a much more open and transparent system of care.

Ms Saltarelli : One of the cornerstones of providing good dementia care and care for those with behavioural and psychiatric symptoms of dementia is information for family members seeking to provide care. The regulation of aged care is the mechanism whereby the public develops trust in the system. Confusion about how regulation works and who takes responsibility for it and how it performs makes this trust very hard to achieve.

The current complaints scheme is the fourth reincarnation for Australian aged care. Like its predecessors, this one is embedded within the now Department of Social Services under the Office of Aged Care Quality and Compliance. We believe the complaints scheme should not fit under the same body responsible for funding approvals and setting policies. We feel that successive reviews and inquiries have ignored the logic of various submissions and cherry-picked items that have then been incorporated into policy and practice, adversely influencing the way in which the aged-care system operates. An example of this is the way in which the review of the Aged Care Complaints Investigation Scheme, the Walton review back in 2009-10, virtually destroyed the utility of the whole complaints system by embracing our recommendation to place more focus on local resolution, but critically ignored supporting information on the logic behind this and the essential linked recommendation that the complainant should be supported and advised by a trained local facilitator with investigative powers.

Not surprisingly, this unequal barrier—in which there is a gross imbalance in power, where victimisation is possible—has proved to be an effective barrier to lodging a complaint as well as resolution, leading the disaffected even more disillusioned.

Under the current system, after a complaint has been investigated and found to be valid, aged-care homes are simply required to agree to make some amendments to policies and procedures. Residents with dementia, especially, may have suffered injury; their health may have been seriously affected or perhaps they may have been wrongly physically or chemically restrained. In such cases the complaints scheme is entirely incapable of providing any satisfaction. An ordinary person with full rights would be entitled to seek redress and compensation. Frail, aged residents have no such rights, despite the Aged Care Act implying otherwise. To the contrary, these instances perpetuate a system where, judging by the numerous stories of neglect, abuse and premature death, poor care is endemic.

The complaints scheme generally fails to provide any remedy to individual complainants or to resolve issues for residents. This is because it deals primarily with systemic defects in process and breaches of standards. Consumers need to be fully confident that the current scheme, and any future scheme, will protect the residents of our aged-care homes. How a home responds to an adverse report is a critical part of understanding the practices and policies of that facility, as is publishing the findings of the investigation of complaints. The publication of all relevant information is an essential part of achieving transparency. Privacy is an important consideration but should not be used as an excuse or a barrier to transparency and accountability or as a way not to protect those who are unable to protect themselves.

Many people who contact Aged Care Crisis are shocked to learn that it is still possible for a home to breach its responsibilities as an approved provider under the Aged Care Act, have serious complaints substantiated against them, including assaults, and yet still manage a perfect accreditation score and avoid any public scrutiny whatsoever. Family members wanting to make informed decisions about a residential aged-care placement for their loved ones, especially those with dementia, are often unable to do so.

Aged Care Crisis are concerned about the proposed extended scope of the Aged Care Standards and Accreditation Agency, renamed the Australian Aged Care Quality Agency from 1 January this year, with regard to regulatory powers previously vested in the Department of Health and Ageing. The Quality Agency, as it is currently structured, has two conflicting roles: a regulatory function and an educative function. Such a conflict of interest cannot be sustained and acts against the wellbeing of frail people in residential care. The critical roles of education and the establishment of exemplar processes and practices within aged-care homes must be separate from the roles of oversight and regulation. A body independent from the industry would better accomplish the latter roles. This would address a number of other conflict-of-interest situations.

The then agency, in its second submission to the Productivity Commission's inquiry into caring for older Australians, emphatically argued that the Department of Health and Ageing was—and the agency should not be—the principal regulator. It clearly stated the danger of the duality of the roles. To quote directly from their submission:

The accreditation agency's responsibility is to support and encourage a quality environment that supports quality care and improvement in aged care while identifying where homes have failed to meet the standards. This approach is in the interests of the residents, who are usually frail, vulnerable and elderly. To do this role adequately requires a strongly collaborative approach with their stakeholders. This does not align with an inspectorial policing approach.

The agency goes on to say:

A change to an enforcement and compliance-monitoring arrangement, as suggested in the Productivity Commission report, seems to be underpinned by a belief that enforcement will promote continuous improvement. It would be a return to the practices of the late 1990s. This is a retrograde step that is contrary to international trends and would undo what the current arrangements have achieved.

Aged Care Crisis concurs. Logic dictates that the new agency should have been relieved of this burden and a new, more appropriate, non-conflicted system built around community surveillance substituted.

Aged-care providers receive billions of dollars of taxpayer funding. There should be full disclosure as to how that money is being spent. As well as providing increased transparency for consumers, such disclosure would undoubtedly encourage improvement in residential aged-care services.

The vast majority of reports on aged-care homes published on the agency website are the cyclical three-year accreditation site audits. These are the reports of planned visits performed at a convenient time and after the homes may have spent months preparing for the audit. Such reports tell us that the management of the aged-care home knows what it is supposed to do but gives little information about what happens on the other 1,093 days of the cycle. They may be nearly three years out of date for those seeking information about prospective homes. Other reports, as a result of unannounced visits, are never published nor made publicly available. For example, if failures are identified during an unannounced site visit, these details are not publicly disclosed nor subject to public scrutiny. The agency is also FOI exempt.

In order for frail aged people to achieve full protection, the community must be able to see what the company or provider is capable of when no-one is watching, not just when they have been given time to prepare for an inspection and not simply after providing a response to an adverse finding in order to stay in business. It is critically important that there be regular, informed, ongoing surveillance within the community by trained individuals closely linked to both to each accreditation visit and to groups advising and supporting recipients of care and their families. All accreditation and inspection reports should be published and available publicly so that residents and their representatives can make their own informed assessments.

The current accreditation system does not adequately measure the delivery of care to frail Australians in our aged-care homes. The agency concentrates on processes rather than on measurable adverse events. These often remain hidden. Measurable levels of real care or performance, such as bed sores and weight loss, are not recorded nor reported publicly. Instead, the agency refers to indicators and looks at whether processes are in place to prevent and treat these failures in care. Their success in doing so is neither evaluated nor reported. While these processes are important for improvement, they are not the measures of performance with informed regulators, researchers or citizens. That concludes my statement.

CHAIR: Thank you very much.

Senator THORP: Thank you very much for your contribution. As a background question, can you tell me what led to the need for an organisation such as yours in the first place?

Ms Saltarelli : My father was in the aged-care system and I could not find any objective information on aged-care, so I started up Aged Care Crisis. My father has since died but I really wanted to help other families through the process, because our family just found it so difficult.

Senator THORP: So it came from a consumer, concerned-family, personal-experience background.

Ms Saltarelli : That is correct.

Senator THORP: Thank you. Either of you could answer this question. Ms Sparrow, in your contribution and in your submission you talk about the need for trained staff, no mandated level of ratio of carers to residents and the fact that there are increasing numbers of PCAs and declining numbers of RNs. You even cite an example of one instance where there are 52 residents to one carer in an overnight situation. You also talk about the need for therapies such as music therapy. If you were the dictator of the world for a day, and were able to describe a best-practice model for aged-care, particularly for people who are living with BPSD, what would it look like?

Ms Sparrow : We do have some examples of homes where some of these issues, I believe, are addressed. HammondCare goes a long way to what we believe is an appropriate model of care.

I think the design of the homes themselves would facilitate a better arrangement of care and help staff provide the right sort of care. At the moment many of the homes have long hallways with small rooms off to the side. I believe that a good design model is more a kind of cluster arrangement with perhaps five homes around a living area. Our model would look at physical design.

And then I think there is no way around having increased staffing levels. We as a community do have to pay for looking after vulnerable people at the end of life, so we always have to have, I believe, a trained registered nurse on site, not just on call. I think we need to look at ways that clinicians, general practitioners and geriatricians can more readily be available to assist staff at the homes. Many of our PCAs do a wonderful job, but I think they would value and appreciate it, and their work would be improved, if they had much more access to ongoing training about dementia. People do respond to training. I just do not think there is enough of that happening.

The music therapy one is very rarely mentioned but is quite important. A good music therapist can do wonders in helping residents, particularly those with dementia, and I would not have thought it was the greatest expense in the world either.

Senator THORP: Have you ever come across, or heard descriptions of, the Adards place in Tasmania? In its original form, it has been closed for some time now. Have you heard of it?

Ms Saltarelli : Yes, we have. It looked to be a very good model of care at the time, but I believe that that has now ceased to exist.

Senator THORP: Yes, it was taken over some years ago by a different service provider, and our evidence is that there have been many changes in the way the place operates. But when you mentioned the cluster arrangement it reminded me because it is actually like a hub with the spokes being the different homes.

Ms Saltarelli : That is correct. It is more of a community model.

Senator THORP: That is right, yes. And there is a little kitchen in each area so that there are cooking smells and people can participate. There are gardens where people can wander at will but quite safely, with no sense that they are being kept in. There are bus stops that people can sit at, cars in garages et cetera. It sounds like that might be the kind of design you are talking about with HammondCare.

Ms Sparrow : I also believe that Wintringham aged care—I did visit one of their homes quite a long time ago—were also in a cluster arrangement.

CHAIR: They are. I have visited there.

Senator THORP: I do not want to verbal you, but is that the kind of pattern or style of building that you would like to see?

Ms Sparrow : Yes, it is.

Senator THORP: One of the practices that Adards used to have, and I believe it is growing in frequency, was that there was no need for all residents to be up, dressed, bathed and breakfasted all at the same time. There was much more flexibility about the daily pattern of any individual resident's life. Would you care to comment on that?

Ms Sparrow : I would indeed. The inflexibility of staffing with the changeover—often in homes when I was visiting with my mother and my other family members, the night staff would have to get residents up and showered before they went off shift and the day staff came on. Aged residents were being dressed and showered at extraordinarily early hours, which is not at all conducive to their wellbeing and happiness or being able to live as they would at home .We do not always get up early and get ourselves dressed; sometimes we like to have a lie-in. You would like to think that that would be possible in a residential setting.

Senator THORP: Fair enough, too! I note in your submission that you have a concern about the issue of profitability when it comes to aged-care provision. Would you care to elaborate on that, on being driven by market forces?

Ms Saltarelli : We have mentioned this in previous submissions to other inquiries. We feel that the primary focus of market listed entities is profitability—this is the reason that they enter the aged-care sector. Private equity groups or private for-profit groups now own a majority of nursing homes in Australia. These groups are aggressively focused on short-term profitability. They are motivated to squeeze the system for profit so that they can sell and leave the sector. Within this setting, managers distant from the coalface make top-down financial decisions with little understanding of the consequences for the residents for whom they are ultimately responsible.

We would also like to acknowledge that caring for old, frail and vulnerable people is labour intensive. It requires an adequate labour force consisting of individuals who are well trained and devoted to the task. Sadly, it is often those staff who seek to provide humanitarian and personal empathetic care who leave the sector in frustration with their inability to provide that care when the prevailing culture of the home relates to cutting costs.

Senator THORP: You also noted concerns, and it is a common theme through many of our witnesses, around the use of antipsychotic medication for behaviour management reasons. We have heard from very well qualified people who say that there are circumstances in which these therapies are required. Do you have concerns that there are circumstances in which antipsychotics or other chemical restraints are used inappropriately? What can be done, in your opinion, to minimise or even alleviate that?

Ms Sparrow : We are not medical practitioners so we cannot comment too much on what sorts of drugs people should have. But we are told quite often by family members about their mothers or their fathers or their husbands being drugged, which they perceive to be unnecessary. We suspect that the use of some of these psychiatric drugs is perhaps a more convenient or easier way to care for people who are experiencing dementia, who are wandering or perhaps exhibiting inappropriate behaviour, than having a good staff-resident ratio. I am afraid I cannot quote my source for this but I believe there have been studies done where staffing has been increased and drugs lessened and the behavioural problems have been minimised as a result of that intervention. So I would think that if you are hard pressed, if you do have enough staff, then the use of chemical restraint and physical restraint is more likely to occur than otherwise.

CHAIR: In terms of all the interaction you have had with the various aged-care providers, you mentioned HammondCare. Are there any others or any other practices that you think are at least approaching best practice in caring for people with dementia in residential settings? How many do you think are sort of getting it right?

Ms Sparrow : It is hard to quantify. I think I have mentioned Wintringham—

CHAIR: Yes, you did.

Ms Sparrow : as well as HammondCare. I am afraid I would have to say that in the homes I have visited over the years it is just very dispiriting to see the numbers of people, particularly those with dementia, wandering corridors, sitting by themselves. I am afraid I cannot give you a very optimistic answer to that question. I know there are good people working in many of our homes and I know there are people doing their best. I know there are some good music therapists; I hear about them. I know that there are very, very good individuals, but I am afraid what I have seen has not been particularly encouraging.

Ms Saltarelli : Can I could add to that—just getting back to the lack of information available to the public or to researchers in general, the fact that we do not know or that we cannot identify really good homes that are getting it right is of course of concern. The department of health and ageing does have a reputation for being quite secretive and obstructive with information, but we have tried to ask over the years and we have some examples of that. I do not really want to go into specifics, but I will just say that it is very difficult for family members to find a suitable nursing home that will cater for their loved one's needs, especially those with dementia.

CHAIR: Those are all our questions. We have gone a little bit over time. Thank you very much for your extensive submission and for your comments and time today. We really appreciate it.

Ms Saltarelli : Thank you for listening to us.

Ms Sparrow : Thank you.