Consumer Engagement in the Aged Care Reform Process

General

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Below is an outline of the themes that emerged from the national general and regional consultations, feedback forms and the online consumer survey. Appendix A – General consultations contains more detailed notes from these consultations.

Information and access

Participants reported difficulty navigating the aged care system and found the multitude of forms, pamphlets and information overwhelming. In several cases consumers reported hiring a broker at the cost of $500-800 to assist them in finding a suitable residential aged care facility. There was an interest in a single point of access and information as suggested by the PC but concern about how it would work at the local level. A number of people suggested that a ‘key worker’ similar to the model of a ‘breast care nurse’ or ‘diabetes educator’ could assist consumers through the dementia journey. Individuals wanted access not only to information but to personalised advice and recommendations.

Concerns were also raised about the Aged Care Assessment Team (ACAT) assessment process. Many consumers reported long waiting periods before getting an assessment and then again having to wait to get access to appropriate services. Consumers had concerns about the accuracy of the ACAT assessments and noted that individuals had different levels of functioning on different days and that this variability was not captured in a single assessment.

Individuals also reported concerns about the level of services they had access to. They indicated that there was significant inconsistency across what types of services could be included in community care packages (bathroom cleaning but not dusting) and that barriers between packages meant that they had to switch providers when the person’s level of care need increased. Carers also said there is a need for more flexible hours (after 5pm and weekends) and a need for access to services that met their needs rather than the needs of the service providers.
Access to appropriate services was noted as being particularly problematic for individuals with YOD, those with severe BPSD and individuals with an intellectual disability. Individuals with YOD and their families found that services and activities for people with dementia were mostly designed with the preferences of older individuals in mind. Families of individuals with severe BPSD indicated that services often turned them away and were unwilling to provide care for individuals with severe BPSD.

The PC’s recommendation for a single point of information and assessment may address some of the consumers concerns about the current level of confusion and difficulty with the aged care system. The challenge is in the implementation of the Gateway in a way that connects consumers to local information, networks, and services and avoids overwhelming consumers with too much information. Similarly, assessment services within the Gateway need to be adequately resourced to avoid the same problems that are currently experienced with the ACAT assessment process. At the consultations it was clear that consumers value developing relationships with a key contact person and in regional areas there is much scepticism about having to call a national telephone number to get access to local services.

“My pathway into the services was fragmented and chaotic, serendipitous. I learnt everything by accident. Going to the social worker saved my life, she sent me off on the right path.”

“I would like [the government] to consider a case manager that works with the family. So you have one holistic management process. I could then go to the person who knows me, and when I get depressed I would know what to do.”

“I have a HACC cleaner, and I can only get a basic service. They clean the bathroom and can’t wipe the window sill because that’s dusting.”

“Many ACAT teams are reluctant to give out EACH-D packages. We went through three providers before we got what we needed.”

Community Care

Consumers emphasised that they wanted to keep people living at home for as long as possible and that community care was an important factor to support this.

There was concern about the lack of continuity across packages of care. Some individuals noted that when the person with dementia required a higher level of care this meant that they had to change their package and as a result change their service provider. Some found this distressing as they had built up a relationship with a carer. Consumers also questioned whether the level of care even in the highest community package (EACH-D) was sufficient for people with dementia. One response to the survey indicated that they believe that people should have access to 24 hour community care if that is what is required to keep people at home.

Consumers were also concerned about how much of the care package was directed towards hours of care and how much was spent on administration of the funds. In some cases administration costs were as high as 50%, which meant relatively few hours of care were being provided. Some participants had been involved in the trial of Consumer Directed Care (CDC) packages and were very positive about the flexibility they provided and the transparency in terms of administration costs.

If implemented, the recommendations made by the PC in regard to separation of accommodation and care will mean that people will have greater options of where they receive care. This fits well with the desire of most consumers to stay in the community. There may be a need to manage expectations of access to full time community care. Consumers are unaware that in some cases the cost of providing care for someone in the community will be prohibitive.

“Different staff came in each day. I heard screams coming from the passage, the strange women came in to rip the shirt off my father, she said ‘I have 20 mins to do the shower and I have to go’. This is not good enough. People with dementia need time.”

“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””

“I can’t get my head around the admin fees that take 50% of the package. It equates to about $250 a week, so he is getting half of what the package is worth. I don’t see how this is justified. We are struggling.”
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Residential Aged Care

Consumers have significant concerns about the quality of care provided in residential aged care facilities. Many people gave examples where the health of care recipients suddenly declined after entering residential aged care. Often this was caused by reduced mobility and physical activity during the stay in the facility. This issue may be of particular concern to people with dementia as they are less able to self advocate or indicate a desire for assistance with physical activity. Consumers noted that the system currently rewards providers based on the level of care needs and this provides little incentive for providing rehabilitation or restorative care.

Consumers also noted the link between quality of care and workforce issues such as staffing levels, training and pay. The relationship between the care staff and person with dementia was also valued. This relationship enables staff to have a better understanding of the personal history, needs and preferences of the individual with dementia. Consumers indicated that this is difficult to maintain these relationships because of the high turnover of staff. Constantly changing care staff can be confusing and disorienting to a person with dementia.

Carers were also concerned about the use of physical and chemical restraints including antipsychotics used in residential aged care facilities. There were concerns that staff were not taking the time to address the causes of the behaviours. In some cases, consumers indicated that the behaviours of the person with dementia were made worse by inappropriate care.

The physical environment of the aged care facility was also considered to be important. Participants provided examples of facilities that were not well designed for people with dementia and did not have appropriate signage or secure outdoor areas for walking. Participants were also concerned about the rights of the person with dementia and implications of locked wards.

Other concerns were the costs involved with residential aged care and that it had not been easy to switch between providers if you were not satisfied with the quality of services. Some noted that each individual may have a different way of thinking about the quality of a facility and that it would be difficult to have a universal measure of the quality of care.

The recommendations of the PC on published quality indicators and on setting appropriate care prices based on fair and competitive wages and the appropriate staffing levels will go a long way to addressing the concerns of consumers about the quality of care. It will be important that the funding for the care of individuals with dementia accurately reflects the cost of care including the need for dementia training for staff.

“What degree of training do carers get that go into nursing homes? My wife is in a nursing home, they move her with a lift, and she sits in a chair all day, with her clothes all screwed up after they have taken the hoist away. They don’t care.’’

“My husband was tied to a chair in the nursing home most of the day. I complained and I was told he wanders into other peoples rooms. He got aggressive when four people changed his pad so he was subdued with a tranquiliser.’’

“Humanness, friendly smile and ‘are you ok?’ this is driven by the culture of the organisation, not accreditation. Get back to basics.”

Respite

Participants discussed the importance of respite to both the carer and the person receiving care. Many consumers reported difficulty in accessing respite care services they needed. They described services that were inflexible, did not provide sufficient hours of care or were unable to cater to clients with high care needs or BPSD. Carers indicated that in many cases they were either turned away or service providers would be calling during the respite period for assistance with managing behaviours. Some reported not using respite anymore because the person with dementia came back in poor health or distressed. Some people discussed the need for respite services with sufficient hours for carers who were trying to maintain employment.

Carers also described respite services that worked well. These included a Day Centre respite service in WA, a cottage respite service in the ACT and a walking group for men with fronto-temporal dementia held in Victoria.

There were also discussions about more flexible models of respite including being able to employ family members and friends. Some were concerned about cashing out in terms of responsibility and potential for exploitation. However, respite provided through activities with friends or family was also seen as positive and particularly beneficial to people living outside of the city.

The broad concern about respite suggests more needs to be done in the reforms to improve respite for people with dementia than just a small trial. Consumers want access to respite services that are flexible, available when they need it, and cater specifically for people with dementia including those with high care needs or BPSD.

“It is horrendous trying to find respite for high care.’’

“I could come with my husband to respite, that to me was a perfect model for respite. If the daughter or wife or carer can be admitted it is a perfect model.”

“I think to be able to cash out would be of assistance for us as we live out of the city.”

“I have the benefit from a day centre at Alzheimer’s Australia, there is a lot of companionship and the carers are terrific. It makes the world a bit better.”

Workforce

Consumers expressed significant concerns about how workforce issues were impacting on the quality of services. Many consumers felt that there was not enough staff in a facility to provide quality care to the residents. Consumers expressed concern about training arrangements and noted that short courses were not sufficient to provide staff with the necessary skills to care for people with dementia and manage behaviours. Consumers were also concerned that nurses and care staff were not receiving equitable pay and that as a result many people were leaving aged care for other professions. This was a particularly big problem in Western Australia where staff were leaving for lucrative jobs in the mining sector. There were also questions of how entitlement will work unless there is more staff to provide more services.

“Staff to patient ratio needs to be raised greatly.’’

“More education is needed for staff. I asked (the staff) why one lady wears one slipper and one shoe and I was told it was because it was just her personality, one of her peculiarities. I looked and she had an infected toe, the staff didn’t even know about it. I have a great concern about residents with dementia.’’

“In every facility I have been to in the last 3 years, the major comment is the pay, recognition and understanding the value of people working in aged care. At least make the pay equal and value what they do.’’
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End of Life Care

Consumers are concerned about the quality of care received at the end of life. Individuals gave examples of how staff did not respect the wishes of the person with dementia at the end of their life and the guilt that this has caused in the family. Others talked about the difficulty in getting access to palliative care and being told that people with dementia do not die quickly enough to be eligible for palliative care. There was agreement that there needed to be more information and awareness about the importance of putting in place advance care plans and power of attorneys. In the Northern Territory there is particular concern about the legal options around end of life choices.

Consumers want access to palliative care and to ensure that the wishes of the person with dementia are respected at end of life. The PC has made recommendations to ensure that providers have access to funding for palliative care and that staff are trained to discuss advance care directives. For people with dementia the challenge is that advance care planning should ideally occur before entering into a residential aged care facility in order to support the person with dementia being involved in decisions about their end of life care. Also, the funding suggested by the PC may not address the challenges people face currently being told that the person is not “dying fast enough” to be eligible for palliative care.

“I’ve been told that if my mother does not die fast enough in a palliative care setting she will be sent away. I am fighting for my mother to die in a palliative facility because I am told she is not worthy.’’

“There is nothing in place to allow us, once diagnosed, to make the decisions that are important to us. We need the force of law, which is available to every Australian citizen except those in the NT.’’

Support for Carers

A common theme in the consultation was the need for better support for carers including counselling, education and information. Carers were overwhelmingly positive about the support they received from consumer organisations such as Alzheimer’s Australia and Carers Australia. They were particularly positive about the Living with Memory Loss course which provided important information and support soon after diagnosis. Some people did not know about the services available for carers until later in the dementia journey. A number of people wanted more information on how to handle BPSD. Others were concerned about how they could take better care of their own physical and mental health.

Consumers were also concerned about the financial implications of being a full time carer. They felt that the Carer Allowance and the Carer Payment were not sufficient. There was concern that the Carer Payment is means tested. A number of people talked about having to separate from their partner in order to be eligible for the Carer Payment which they needed to survive. Some also suggested that there should be a superannuation component to the carer’s payment particularly for younger carers to ensure they have sufficient retirement savings.

Other issues that were raised included the impact of programs that carers were relying on ending suddenly because they had received time-limited funding. Carers in Hobart raised the need for an organisation which represents and advocates for consumers of the aged care system (separate to existing organisations like Alzheimer’s Australia or CoTA). Others indicated a need for better mediation systems for disputes with aged care providers.

The evident stresses and strains on carers supports the approach of the PC to also assess and better support carers – including through flexible respite care and counselling services.

“One gap could be for carers who work full time and finding support groups that are flexible, such as evening times.”

“I look after mum; all care professionals encourage me to keep mum at home as long as possible. I asked about carers pension at Centrelink, which is means tested. I have a two income family, so I am not eligible and will have to separate from my husband in order to survive.”

Younger Onset Dementia

Participants at the consultations raised the particular challenges that individuals with YOD and their families face including difficulty accessing appropriate services, and unique financial (e.g. as a result of loss of employment) and social challenges (e.g. counselling of young children). Some questioned whether the rates of people with YOD were increasing and suggested that with access to earlier diagnosis there would be more recognised cases of YOD. They indicated that there was even greater difficulty getting a diagnosis as many doctors would not consider a diagnosis of dementia for a young person. There is also difficulty getting access to appropriate services and supports as most services for people with dementia cater to an older population.

Participants suggested that there needs to be different models of respite, residential care and support services for individuals with YOD and there was a call for separate facilities or at least specialised areas within a facility for individuals with YOD. For example the Side by Side program in South Australia enables individuals with YOD to work as volunteers at Bunnings, this was seen to be a successful model of engaging individuals with YOD with meaningful activities in the community.

Carers of people with YOD expressed bewilderment about where they fit into the system and whether aged care reform would address their needs. The PC has indicated that individuals with YOD should be able to access the services that best meet their need regardless of the funding source. There is no real comment in the PC report of how the system will ensure that individuals with YOD have access to the specialised support and services that they need.

“My wife was diagnosed at age of 57. When we needed help we were refused. We were told to keep away from the aged care homes. This is because it is only available for people over 65. The PC Report on Caring for older Australians should be changed so it is inclusive of all Australians no matter their age.”

Restorative Care

At the Hobart consultation, there was a particular focus on restorative care. Participants indicated that there needs to be a greater focus on what the person with dementia can still do and help them to retain those skills. More broadly the discussions at the consultations were supportive of models of restorative care or wellness, as concerns were expressed about services not maintaining people’s physical health and skills. Consumers highlighted the need to create a system where providers were rewarded for keeping people well and active.

“Carers have no idea about how to take a therapeutic approach to activities. I get mum to do up her buttons and feed herself and engage herself in whatever way possible and her mood is so much better when she has carers that use those approaches.”
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Primary Care

The challenges faced by those living with dementia are not confined to the aged care system. Many participants at the consultations expressed concerns about the process of diagnosis and indicated that there was a gap of several years between first seeking assistance from a GP before a diagnosis was made. Getting a diagnosis was particularly problematic for individuals with YOD who are often misdiagnosed with depression. Questions were raised about cognitive screening and the link between early diagnosis and keeping people at home for longer.

Carers felt that GPs were not listening to their concerns about changes in the person who had dementia. Instead GPs were relying on responses on a single occasion to a standardised memory screening tool. Participants brought up other factors which may have contributed to the delay in diagnosis including the need for better training for GPs, difficulty speaking to the GP about their concerns in front of the person who has dementia and a lack of understanding about the benefits of early diagnosis of dementia. Consumers were troubled that without a diagnosis they had no access to services.

There was also concern about access to primary care once a diagnosis was received. Individuals spoke about feeling that once a GPs gave the diagnosis there was were no longer any interest in providing further care. There is also difficulty in accessing GPs for people who live in residential aged care facilities. One carer gave the advice that once you get a diagnosis you have to shop around for a GP who will provide care in aged care facilities to ensure continuity of care.

“My mum has been diagnosed for four years. But, there was something wrong ten years before that.”

Community Awareness

There were concerns about a lack of awareness in the community about dementia. A number of people talked about friends and families who stopped visiting and calling after the person with dementia received a diagnosis. Individuals with YOD indicated that they face a particular difficulty in community understanding and told of people not believing it was possible that they had dementia. Others mentioned how helpful it was when community members understood dementia and were able to assist when someone was lost or confused. Participants also expressed a concern about the lack of awareness of the link between physical and brain health.

Participants had a number of suggestions to address community awareness including: pamphlets for doctor’s surgery, school programs, and public health campaigns.

“Community, education and awareness. People should be aware that there are things you can do in your lifestyle to help the prevention of dementia. Good awareness will reduce stigma, and make early diagnosis easier. This will result in less denial and more discussion about end of life etc. We won’t get it unless we get an overall good community awareness program going.”

Research

Some consumers raised concerns about the level of funding for dementia research. There was a broad recognition that research may not be able to assist them or the person they are caring for but that it was important to avoid future generations facing the same challenges. Others talked about their experience participating in research and expressed a desire for more feedback about the outcome of research studies. Research into the positive effects of dementia was recommended to improve the lives of those living with the condition.
Although the potential benefit of investment in dementia research was discussed in the text of the PC report it was not included in any of the recommendations.

“I am a carer for my husband with Alzheimer’s. I spent the previous 40 years as a medical researcher. I would like to emphasise that we need a massive amount of money for research. Co-operative research centres for Alzheimer’s.”
“Research into the effects of positive experiences on people with dementia and on the ways in which this can be used to the benefit of those with dementia and for their carers.”

Acute Care

Consumers had significant concerns about the quality of dementia care received in hospitals. Again consumers saw the quality of care being dependent on staff training and staffing levels. Carers told of experiences where they were asked to stay in the hospital to provide personal care such as bathing and showering. Others said that if they were not able to come in to the hospital the person with dementia would not have been fed. One consumer expressed concern that the hospital was not interested in treating her family member because they did not see her has having a sufficient quality of life to merit any further treatment. In Tasmania there was significant concern about the closure of the Nell Williams Unit, a specialised dementia unit at the Royal Hobart Hospital. It was recommended that specialised dementia units be provided at more hospitals. Information on local programs to address dementia in hospitals is provided in Appendix F - Alternative models of hospital based care.
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