Consumer Engagement in the Aged Care Reform Process

Special Groups Consultations

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Alzheimer’s Australia conducted specific consultations that focused on listening to the perspectives of people from CALD backgrounds, GLBTI, Aboriginal and Torres Strait Islander and people in regional centres.

Culturally and Linguistically Diverse Groups

CALD consultations were held in Sydney and Melbourne. There was an excellent response from the CALD community. Close to 200 people in total representing the Afghan, Arab , Assyrian, Chinese, Croatian, Egyptian, Filipino, Finnish, Greek, Indian, Italian, Korean, Lao, Maltese, Romanian, Russian, Sri Lankan, Turkish, and Vietnamese communities attended the consultations. Local staff arranged for translators to attend both consultations.

Detailed information from the consultations, Q&A forms and the online survey are at Appendix B – CALD consultations.

Primary Care

A number of consumers shared their experiences with trying to get a diagnosis of dementia. There was concern about the time it takes to get a diagnosis and also that individuals are often misdiagnosed with depression. The need for using culturally and linguistically appropriate assessment tools, such as the Roland University Dementia Assessment Scale (RUDAS) was also highlighted. Some participants also spoke about the different cultural meaning of dementia and the stigma which kept some from seeking a diagnosis or services.

“We found it a struggle just to get my mother diagnosed. Then she was put on a wait list. I did not know how neglected or isolated the Turkish community was until I experienced it. We need trained staff that can diagnose people from all backgrounds. I had to get the diagnosis done privately because I was confronted with a dead end wall.”

“I would like to touch on the stigma associated with dementia. I belong to a small Tamil community. If a member in our family had dementia they would not divulge.”

Information and Access

Many participants indicated difficulty in understanding the aged care system. There was a strong preference for verbal information instead of piles of pamphlets. In some cases individuals indicated that they did not want the responsibility of having to choose a service and would prefer a recommendation. Others discussed difficulty in accessing information in their language.

“(to assist me as a carer I need) translated information about aged care and dementia support.”

There was overall a positive response to the idea of a central place to access information as long as it was appropriate and available in the language of the individual. One person questioned whether money should be spent in setting up a new front end and suggested that it would be preferable to provide better funding for existing services.

“When mum was diagnosed I got a pile of advice in papers, but I want someone to talk to me. I want them to tell me what we need to do. I will never read that.”

“Centrelink gave me pamphlets, told me to choose, but I can’t choose, they know better and what is best.”

Access to services

Participants at the meeting expressed concern about access to culturally appropriate services, education, activities and bilingual staff. Culturally specific service providers indicated that they were unsuccessful in their application to the Aged Care Approvals Rounds (ACARs) which meant that they were unable to provide the specialised services that they felt were needed in the community. While there may be a number of reasons why applicants were unsuccessful in the ACARs, concerns were raised that not enough funding is being provided to culturally specific services. There are also concerns around the lack of services for people with YOD, waiting times for assessment, and the artificial boundaries between what services can provide. One provider indicated that there had been a change in Government regulation regarding whether provides were required to develop cultural plans for clients and that this had a negative impact on residents from multicultural backgrounds.

“We need culturally specific facilities but the government does not favour this. I believe that every nursing home should be multicultural – we are a multicultural society.”

“If you go into a nursing home or hospital getting someone to speak your language can be very difficult. Unless you have someone to make this work the person with dementia is going to be suffering.”

Community Care

Participants indicated that access to community care was very important to people from CALD backgrounds. Many families feel a responsibility to care for the person at home and go to lengths to avoid placement in residential aged care. There was concern about a lack of services and long wait times for assessment. There were also questions as to whether the hours provided in community care packages were sufficient.

“The Vietnamese community prefers community care. When we assess people for aged care packages we see that the level of care needed is quite high. Before getting assessed, the children look after a mother who has dementia. They take turns. So their mother moves from one place to another so they can cope.”

One respondent also raised particular concerns about the services that refugees may require.

“Afghan community aged people stay at home and they don’t go out at all. These people need to stay together and they have a lot of problems like depression because they lost everything in the war time. There is no place for them or any funding for a program to help these people.”

Residential Aged Care

Concerns were raised about the quality of care provided in residential aged care facilities. There was also distress caused due to the lack of culturally relevant activities and services and the lack of interpreters.

“In nursing homes the accreditation requirements are good but as soon as the accreditation team leaves it changes... It is really important to have quality for all older Australians regardless of where they are coming from.”

“Social isolation caused by lack of contact with people who speak the same language. Ethnic aged care volunteer services such as ethno-specific Friendly Visiting Programs not received well in residential care facilities.”

Respite

There were a number of concerns raised about access to flexible respite that was culturally and linguistically appropriate. Individuals suggested that there was a need for longer hours of respite particularly for carers who were continuing to work. Despite the desire for more flexible services, individuals raised concerns about cashing out and how people from non-English speaking backgrounds would manage funds. Some suggested that such a system could lead to additional disadvantage if appropriate safeguards were not put in place to protect this vulnerable group. Providers indicated that many CALD individuals are already reluctant to take up formal services and that the cash-out option may make people more likely to avoid using formal services.

“I have been asked ‘Why are you crying? Why do you have so much difficulty putting your mum in respite?’ My mum doesn’t speak English. There were no services available that met her needs. She didn’t fit into your equation or policies. I am sure I am not the last.”

“There is a great need for flexible respite. Services that suit clients and carers, not just providers.”
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Workforce

There were concerns about staffing levels, pay and training as well as the availability of bilingual workers.

“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.”

One service provider shared an example of how they have addressed the shortage of bilingual workers:
“There is an agreement between Holland and Finland; we can use the students in their final year of university. We have about 12 students. They bring their language skills and culture and the clients love them.”

Support for Carers

Some respondents felt that the focus of the PC had been on the physical care of people but not enough consideration had been given to how to support carers, particularly as people stay in the community longer.

“We are all used to physical care issues, but the emotional aspect around dementia has not been addressed by the PC. Where do you go for services at the point of a personal crisis?”

There was also concern that there are a number of innovative services that are well received by the community but which only receive funding for a single year. When that funding ends, the community is left with a gap in services which they had started to rely on.

“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.”

Gay, Lesbian, Bisexual, Transgender and Intersex (GLBTI)

A GLBTI consultation was held in Alice Springs, NT and with representatives of Gay, Lesbian, Bisexual, Trans and Intersex Retirement Association Incorporated (GRAI) in Western Australia. We also had a number of responses to our online survey from individuals who identified as GLBTI. More detailed notes from the Alice Springs consultation, the survey and a letter from GRAI are included in Appendix C – GLBTI consultations.

The themes which emerged from the consultation, discussion and survey responses are outlined below, but are also captured in this quote:
“As a gay man I need services that have staff that understand me being gay and with whom I can feel safe and with whom I can have some chance of understanding their reactions to me. If we cannot express our deepest feelings openly, honestly, without shame or fear, in our old age, then we are a failed society and there is no care, just service.”

Information and access

GLBTI advocates indicated that aged care service providers should state on their website or in their brochures if their staff are trained in GLBTI sensitivity. There is also a concern about the heterosexual subtext to information and being able to access information in a culturally safe environment.

“Need to remove heterosexual subtext to information, access, entry (e.g. wife/husband unless the law changes)”

“Accessing information needs to be in a culturally safe environment where the risks of self-exposure are less than the immediate benefits. For gay people, dealing with others who are gay may not always be the answer but it is a great start.”

Discrimination/Stigma

Participants indicated that GLBTI individuals often experience discrimination in aged care facilities. An example was given of staff refusing to provide care upon learning about the person’s sexuality.

“A carer bathed a woman, and when she found out she was a lesbian she left, it was discrimination. She was suddenly left without a carer.”

Many older GLBTI individuals choose not to be open about their sexuality with care providers because they are fearful of discrimination. This can raise particular difficulties in community care where GLBTI people may not want outsiders coming in to their home. This can also complicate the partner’s role in care provision and decision making.

There was also an example given where the person with dementia shared his sexual identity which had been kept quiet for many years. This raised difficult issues for family and staff.
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Sexuality

There is a lack of recognition of sexuality of residents in aged care regardless of sexual identity. This can mean that individuals are not given privacy and that any expression of sexuality is considered a behaviour which needs to be managed.

“There are huge challenges around gender and sexuality issues, in the home or in a residential setting.”

Workforce

There is concern that aged care staff need training and education to increase awareness of GLBTI issues. There needs to be more GLBTI staff too, who are able to connect GLBTI people to their communities.

“It’s all about education and saying lets have the whole spectrum of people being carers.”

“Education and training to increase sensitivity and awareness of staff and residents of facilities to the entitlements of GLBTI people (both home and residential care).”

The representatives of GRAI also discussed a recent research report they had released about GLBTI issues in aged care. They found that 86% of aged care providers surveyed were not aware of any GLBTI individuals in their facility. The survey also indicated that facilities did not provide staff training on GLBTI issues and only two facilities provide training for staff on sexuality.

The detailed report on this research can be accessed at the GRAI website at http://grai.org.au/wordpress/wp-content/uploads/2010/07/We-dont-have-any-of-those-people-here.pdf

Advance Care Planning

Concerns were raised about the Northern Territory having unique legal issues surrounding end of life planning and guardianship. One person said that it is impossible to nominate guardianship before a person is declared incompetent. As a result it can be hard for a GLBTI individual to nominate their partner to make end of life decisions for them. In some cases this means that their wishes are not carried out as families, who the person with dementia has been estranged from for many years, step in to make the decisions.

Residential care

There is concern about staff and residents responding negatively to people who cross dress and the need for more privacy from staff.

“Sitting at a table at a residential facility and someone is in drag, and then the wig gets knocked off, everyone screams, how demeaning.”

Community Care

People feel the need to hide their sexual identity from carers who come into their home due to a history of discrimination and ridicule.

“When some people receive home care they sanitise their homes, hide magazines and take pictures down so they are not found out. They are frightened.”

HIV

People who have HIV are at risk of HIV-related dementia. Stigma and discrimination around caring for someone with HIV still exist. There was suggestion that staff need to be trained in best practice for HIV.

“People on antivirals are more likely to get dementia. That will be their next wave as people with HIV are living longer.”

Aboriginal and Torres Strait Islander

An Aboriginal and Torres Strait Islander consultation was held in Alice Springs. The themes which emerged from the consultation are outlined below. Detailed information of the consultation is in Appendix D – Aboriginal and Torres Strait Islander consultation.

Education/Awareness

Many Aboriginal and Torres Strait Islander people have a different understanding of dementia than the mainstream community. Dementia is at times equated with “being mad”. There is a need for culturally appropriate dementia education and awareness raising activities.

“Living in our Aboriginal community, it is all under one thing, if you assigned a mental problem, you are just seen as ‘mad’. Now there are differences and that needs to be explained to people.”

“My sister is in the first stage of Alzheimer’s, she is in so much denial it is not funny.”

Access to Services

There is a lack of services in remote areas and a need for mobile medical services. This is particularly important for the Aboriginal and Torres Strait Islander community as they have a special connection with ‘country’. Leaving their community to access services can have a detrimental impact on their health.

It was also discussed that services in the NT are currently provided by shires, and people feel that this results in less community control.

“For indigenous people in remote communities, if they need particular levels of care, they have to come to Alice Springs.”

“When aboriginal people leave their community there is a huge void. Country heals people, it is their medicine. When they are back there their whole being, and essence of what makes them Aboriginal, is healed. People desire to get back as soon as possible.”

Younger Onset Dementia

Participants brought up the higher incidence of YOD in the Aboriginal and Torres Strait Islander community. They questioned whether the government’ should be looking at just aged care, or broader issues that encompass YOD as well.

“Person support – not aged care. It is prevalent in Indigenous people that they get younger onset dementia. If it is an aged care thing then they shouldn’t be getting support.”

Aboriginal and Torres Strait Islander Culture

A number of concerns were raised around health care fitting in with the Aboriginal and Torres Strait Islander culture. Remote area nurses are needed so that Aboriginal and Torres Strait Islander people do not have to leave their community to seek services.

“Country heals people, it is their medicine.”

Issues were also raised around Aboriginal and Torres Strait Islander people reverting back to their original language and forgetting English once they have dementia.
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Workforce

Participants suggested that there needs to be increased levels of care staff, particularly Aboriginal and Torres Strait Islander workers and those that are experienced in working in the bush. More incentive needs to be given to people to join the health workforce, including a career path and increased pay.

“It’s not a career path, and that is a huge issue for Indigenous people. If you were in the police force, you would be a sergeant after 10 years.”

Respite

Cashing out for respite was discussed as a positive option that would need some protection. For example, the option of having a case manager to help with organising the respite was recommended.

“I would love to be able to pay family for the services they do.”

Residential care

Participants indicated a desire for residential aged care which was located in their community, provided high quality care and also enabled them to make choices which were consistent with their culture. Participants indicated that the quality of care “in the bush” was quite variable and in some cases very poor. Several concerns were raised about rules and regulations that result in limited choices for residents. For example, one participant indicated that a Aboriginal resident expressed a desire to eat outdoors but was not allowed to due to safety regulations. Another indicated that the regulations resulted in decreased choice in activities and food.

“We have to treat people as people. Cut out expectation and regulations that prevents us from supporting people.”

Regional

Regional consultations were held in Merimbula NSW, Geelong Vic, and Mandurah WA. Alzheimer’s Australia QLD staff also interviewed consumers in regional areas of QLD and provided a DVD of these responses which are included in the discussion below.

Detailed notes of the consultations, answers to the Q&A sheet, response to the online survey and a transcript of the DVD is included in Appendix E- Regional Consultations.

Primary Care

A number of consumers suggested that the process involved in diagnosis of dementia could be improved. Consumers claimed that the waiting times to see a specialist were too long, as well as the length of time before diagnosis.

It was suggested that there is a need for more GPs to undertake training and be provided more information about the diagnosis of dementia, particularly due to a lack of specialists in rural areas. It was also discussed that GPs should be encouraged to take interest in the patients after diagnosis, by visiting the residential care where patients are residing.

“I took my mother to the GP, and he didn’t seem concerned. There was no suggestion to refer her elsewhere. A big problem in regional areas is we go to GPs for help. Unless they have had personal experience with dementia they take no notice of the carer and their concerns. There is a lack of medical professionals we have access to in regional Queensland”.

Information and Access

The aged care system was seen as complex and difficult to navigate, even for those who have a professional health background. Therefore, there was importance placed on organisations such as Alzheimer’s Australia as a first point of contact; however there is still a need for one central point of information and relevant for people in regional Australia.

“More information is needed especially for people from regional, rural and remote areas.”

Consumers expressed reluctance to call a national telephone number and preferred to talk to local people who know about regional services. They also highlighted how well local networks worked in regional areas.

“If I wasn’t in health industry it could be difficult to know where to go, but once we make contact with one service they then recommend the next services. Good networking.’’

Waiting times for assessments and access to services is difficult, timely and expensive, especially in regional Queensland, where there are only two or three geriatricians in the regional areas. They felt there was a high demand for a permanent geriatrician, and that the fly in fly out arrangement was not suitable. Overall it was felt that there was inequity between rural and metropolitan access to specialist services. One recommendation was the use of Skype to discuss results with specialists, rather than travelling for two hours for a two minute consultation.

“I had to travel 620kms from Rockhampton to the Sunshine coast. It would be beneficial to us to have a geriatrician.’’

“It is very difficult to get a review by a psycho-geriatrician or neurologist, especially in rural Australia.”

Community Care

There is a need for more resources in regional areas so that carers can keep loved ones at home longer. For example, in Townsville there are not enough HACC services. These resources also need to be consistent and appropriate to the individual.

Consumers were also concerned about the waiting time it takes to be assessed for care.

“Consumer directed care would suit us but where do I find that in my area?”

“Care services? Near non existent in rural areas outside of the large towns.”

“It takes too long for an assessment to happen in country areas.”

Respite

Consumers want access to flexible respite that provided quality care and did not have long wait times. Consumers also felt respite should have better environmental design, consistent staffing who are better trained, provide social interaction, and be able to deal with changed behaviours.

“I put my husband in care and had to pick him up again because they couldn’t handle him.’’

Support for Carers

Consumer’s placed a lot of importance on the support of local Alzheimer’s Australia outreach services including programs like Living with Memory Loss and memory lane cafes.

“My husband had Alzheimer’s. I felt so alone. Through Alzheimer’s I get help, I am not so alone anymore.’’
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