Consumer Engagement in the Aged Care Reform Process

Responses to online survey

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What are people living with dementia looking for in aged care reform?

• Firstly - some recognition. There is no mention of dementia in the Aged Care Reform. There needs to be more awareness of symptoms, early diagnosis, respect for people with dementia, less stigma, more funding to improve the care of the person and more funding of research into the disease. We need to halt the increasing numbers of people being diagnosed with dementia. This will not happen until the government treats the matter seriously!
• With both my mother and father having dementia and myself caring for them we need a simpler form of diagnosis and care plan so they can remain in their home retaining their life skills. Once they are put into full time care they lose their identity and many other daily chores they would have happily continued in their own home.
• Age appropriate motel style accommodations at hostel level, single large bed/sitting room at nursing home level. Care workers trained in all aspects of handling people with dementia. Time out of nursing home with a subsidised carer for the under 70's.Hostels should be in their own grounds and have areas to have meetings with families both inside and out in the grounds. Theatrette and age appropriate movies for younger onset residents. Normal activities like cooking with assistance, gardening, outside activities like hiking for those who are physically able.
• * A more federally consistent approach * a less ad hoc and multifaceted system * better support for spouse carers of dementia patients * easier access to good respite care * easier support for transition from home/ hospital care to permanent aged care * more support for organisations that support seniors with day care and home help/making the home safer for the patient * less paperwork for entering the permanent aged care system.
• More in home support for them and carers.
• Compassionate, flexible, responsive, supportive care for both patients and carers. Affordable access to neuropsychology for early diagnosis of dementia. Destigmatisation of dementia, improved community recognition. Evidence-based and innovative care. Research on how to better care for people with dementia, so that we can look after the ones who have it, as well as research on how to prevent and treat it.
• Skilled staff and whole of facility responsiveness. Requires more resources in staff ratio. Have currently been to facilities where there is one staff to 16 in high care. How can person centred care be activated with that ration.
• A safe place to live with caring and compassionate staff.
• Flexible, appropriate services and support. Less complexity (and/or more assistance to navigate the aged care system). Greater understanding about the impact of dementia on the person with a diagnosis AND their families and carers.
• Continuity of service. Easy access to service in a timely manner. Better standards in residential care setting.
• Respect and safety and recognition that not all people with dementia have Alzheimer's and are old.
• Quality of Care and Dignity - Correct staffing to meet their needs.
• Better trained nurses.
• Trained staff with a clear understanding of the disease and how it affects people. Family members want consistent, responsive care for their loved ones and to be able to support their loved ones when they are in care. Family members want to be part of the caring decision process and want their concerns and suggestions listened by those working in aged care. Better choices for their loved ones and a more responsive system which takes into account an individual's needs, interests and background.
• access to appropriate services including community services and residential care
• Affordable options especially for respite in caring for someone with dementia at home. Accessible day respite programs. GP and medical people who diagnose early signs of dementia
• People with dementia prefer to live at home, however depending on their health and going into middle or advanced dementia, this is not possible and they need residential care. As dementia is affecting younger people, residential care should be separate from the aged care cottages.
• Development of prevention methods/drugs to reduce symptoms. Early diagnosis and education, support and elimination of social stigma.
• The ability to stay in their own home for as long as possible and have support services to enable them to do this comfortably.
• Improved pathways to services, improved services, money to be spent on the person, not swallowed by providers, and improvement in Residential facility.
• Respect and a safe environment - to be treated as a person with a disease not a nuisance.
• The easy access to 'best practice' care in a timely manner.
• My husband is in the early stages of dementia and does not accept the fact that there is anything wrong with him so that he resents almost anything that intrudes on his daily routine. This makes it difficult to involve him in some of the programmes available.
• More funding from the federal government to increase the ratio of trained nursing staff to residents in residential aged care.
• The best care possible that is as close to living at home as possible.
• Consultation, consultation, consultation. Absence of private interests such as BUPA and devolution of government services and Medicare, etc.
• Respect, understanding, flexibility in policies, so that they can live close to how they have most of their life, i.e. married couples regardless of their classifications i.e. high or low care, together.

What concerns you most in access to community and residential care services that meet your needs?

• Lack of funding -particularly to regional areas.
• Trained staff with adequate safeguards for patients, better accreditation
• The paper work is too complex and the differences between ACAT, service providers and residential aged care means one system would not work. The packages available never fit the needs of the person who needs them the most.
• The time it takes to get help. I was "qualified" for an EACH package but never got it as by the time my husband really needed the extra help (he could no longer stand and walk) he was past the stage where he could live at home. If we had got the extra help when we needed it he would still be at home now.
• * Transport * good quality care *
• Residential care standards and support from family.
• Unresponsive, inflexible, ignorant of different varieties of dementia, and the importance of a correct early diagnosis.
• Inflexibility.
• The lack of spaces in residential care for both high and low care.
• Timeliness and appropriateness of services. This is especially true in relation to people with younger onset dementia, who have such different needs. It is also important that people are supported better to access services that are near their homes and families - not shoved off to facilities hundreds of miles away just because that is where there is a space.
• Lack of individuality, risk prevention gone mad- why can we not continue activities we have always done that make us feel worthwhile- cooking, gardening cleaning etc.
• That the whole system is geared to aged frail people and not those younger than 60 who may well be active and physically well.
• No balance between needs and wants.
• Just not enough places.
• There are never enough places available to support families and carers in maintaining their loved ones at home. Also when the time comes for their loved one to move into residential care, choices are limited and often not available when needed. Dementia sufferers need consistency and stability in their surroundings and also the people who tend to their needs. Often care providers change regularly which can unsettle someone suffering with dementia and this means that the care giver cannot enjoy the respite which in home care should be able to give to them.
• Safety at home, training of staff, carer stress, equity of services to rural areas.
• Availability, not enough appropriate facilities. Concern that carers don't have a good enough knowledge base about dementia to care for appropriately. This is often evident especially with community workers. Direct carers do not get an adequate income considering their work.
• In residential care we need a balance of carers and nurses. We are aware that dementia patients and in my case, Alzheimer’s, the disease is driven by the personality of the patient, therefore dementia trained carers are better suited as nurses are more medical driven and appear indifferent especially in hospitals.
• Too many people with dementia have late intervention and assessment, making it difficult for community service providers to be accepted and provide early guidance and education. Television advertising campaigns may publicise the help that can be accessed.
• Provision of continuity of care from people who know and understand all types and stages of dementia care.
• Emergency respite, short term respite, staff lack skills, not suitable or not trained, not knowing where to access information.
• Assessing community and residential care services can be a complex and confusing process. This process can become horrific when conflicting advice is given by medical and other professionals. In our rural area access to sympathetic doctors is severely limited.
• Services and service providers do not provide for people with YOD, challenging behaviours or BPSD. This includes when living in the community and residential care.
• As pensioners, the cost of services is a worry.
• Encouraging the person with dementia that the services are worthwhile and non-threatening.
• Lack of equity in pay for registered nurses in aged care facilities. Lack of recognition and value of the specialty area of aged care in the health system.
• Residential care is restricted in what it can offer because of staff ratios. There is a greater need for occupational / diversional therapy. The best kind of respite or residential care is where there are small numbers in accommodation and staff have a better opportunity to meet individual needs.
• Lack of consultation and presence of huge non-profits.
• No flexibility & lack of housing resources. Lack of information easily found. Government departments trying to get every cent they can from the elderly. Top of page

Do you have particular concerns around access to information and assessment for access to care services?

• Yes - more information is needed especially for people from regional, rural and remote areas.
• My partner and I had difficulties and wonder how those without younger, IT savvy people can manage the system until they are faced with a crisis, nobody notices.
• Communications at all levels should be upgraded. My husband was in hospital and I was not told he was having seizures or had had a mild heart attack until just before discharge, the communications need to be "as it happens" not "at discharge" for the carer to know what services are needed.
• There is plenty of information out there but it comes from too many different sources.
• Absolutely. Neuropsychologists are currently the best assessors of the changes in early dementia, but there are less than400 in Australia, there aren't enough training places, and their services aren't covered by Medicare. Too many doctors make diagnoses of dementia without arranging appropriate education and other services for patients if they diagnose at all. People with dementia are often not diagnosed, missing out on the opportunity to plan for their futures and access suitable carer and patient advice and support
• Still too complex. Difficulties for younger onset who are still square pegs in round holes between disability and aged care services.
• There is plenty of information around, but it takes too long for an assessment to happen in country areas.
• Navigating the system is very complex. We need a one-stop-shop, staffed by people who understand the impact of dementia and how/what services are available. Don't push us from place to place! The trauma and stigma of diagnosis is bad enough without crushing families further with bureaucratic processes .Help us to break through!
• It isn’t clear; so many adverts break up the information in the DPS guide it makes it difficult to follow.
• Care services? Near none existent in rural areas outside of the large towns.
• It seems shrouded in darkness - no transparency in actual care needs - always an overview until you actually get in there.
• Family members and carers often do not know where to start to get the information and support they need when they first notice that something is 'not quite right' with their loved one. Many doctors are not able to give a diagnosis and are not aware of what resources are available in the community.
• Yes. We need more education.
• Very difficult to get a review by a psycho geriatrician or neurologist especially in rural Australia to determine competency when making decisions about the future. Or to determine dementia if undiagnosed. ACASS will often have the symptom i.e. memory loss, without the diagnosis. This isn't helpful for early diagnosis and management. Memory clinics are also difficult to get into.
• The health system is lacking in directing and offering information on dementia. After being referred to a specialist, I received a prescription and an explanation of the CT scan at my request and my husband given a counting and reading test, a telephone number for the Alzheimer's "Living with Memory Loss" and a request by the specialist to see my husband in twelve months. This may not be the answer to the above question but Alzheimer’s Australia is a private company picking up the slack from the health system.
• A/A - Need broader publicity about services available. Costs of residential aged care - too few professional advisors know about the complicated method of assessing assets/income fees which are encountered by self-funded retirees going into care. At university level accountants, solicitors and other professionals should be educated for their future need to advise in practice. A requirement for updating this education should be mandatory. Carers spend too much time (and money on insufficient advice from professionals) sorting out financial costs. This becomes an extra emotional and financial burden at an already difficult time of separation.
• Yes, once a diagnosis is made the 'labels' that are associated with it.
• No - it should be freely available and particularly to the person and their carer or next of kin.
• The assessment process and occupational services systems worked very well for us. The main concern regarding access to information is that information can be inconsistent or not "tell the whole story". It is possible, for example, to gain an overview but not situation specific information.
• Yes, it is a very complicated web you need to get through before you are eligible.
• No. The local Alzheimer's Australia NSW group is always very helpful with any information we require.
• Just that it is very difficult to get the person on-side for the formalities.
• Access to hospital records and information is lacking in residential aged care.
• I live in Launceston Tasmania and I am very happy with the availability of information and support from the access services. Some time ago I was part of a survey for the gold book that provided information of services for people with dementia. I think that information booklets like this should be available in all Drs Surgeries and hospitals and staff and diagnosticians should be encouraged to give them to clients and carers.
• Yes
• Assessments are too rigid. Facilities are too rigid. Lack of funding provides elderly (in my case) with unsatisfactory living arrangements. Parents married for 62 years separated due to high & low classifications, causing further health problems, resulting in unnecessary medications & healthy issues costing even more to live day to day. Top of page

What kinds of services do you need most (e.g. home care, respite care, residential care services, services for those with severe behavioural issues)?

• All of the above.
• Flexible home care. When asking for an additional service under a HACC program, I had to justify why, mum had to be visited and confirm she wanted the service.
• Home Care, Convalescent Care, Respite Care, Residential Care, Home Modifications, A.C.A.T. and O.T.
• My mother, who lives alone, refuses to acknowledge she has a problem, which makes caring for her very difficult. For my family, our greatest need at present is support to cope with her changing behaviours and aggression, and to manage our feeling of guilt or worry that we are not permitted to do more for her. No doubt that as Mum's dementia progresses, we will need in-home care and assistance with managing her aggression and risky behaviour (e.g. she believes she is invincible and climbs trees and tries to scale cliffs, as she used to do when she was a child). The only problem is that now she is 76 and weighs a little over 40kg.
• OT available every day in residential care to help with sundowning.
• Availability of adequate respite services.
• All of the above - with qualified staff - not just AIN's
• Respite care especially for dementia clients who all have special needs.
• Competent and consistent respite care which is available when it is needed.
• More trained care workers. People need to be trained in the skills to care for someone with dementia. This applies not only for paid workers but unpaid ones too.
• All of the above services during the progress of the disease.
• Home care, respite care, residential respite care occasionally.
• In-home respite care - in order to remain in familiar surroundings and access to emergency in-home respite.
• Home - personal, more hours, respite.
• A sympathetic doctor.
• Respite and those with BPSD and YOD.
• Home care, respite care and because my husband is disabled I will soon need some help with showering him. Up until now I have only had to use the services of a carer for a day when I had to go to Canberra for specialist services for myself. I could use some respite but my husband would be unhappy away from his own environment.
• Respite care services.
• Medical practitioners who will take residents in residential aged care.
• In home nursing care from a dementia team - showering, advice, encouragement, information as to other services. In home respite. Day centre respite. Residential respite (as a last resort). Linen service for incontinence consequences. Help with lawns, cleaning etc.
• Psychological services and respite services.
• Residential services with more staffing to carry out better care servicing. Top of page

What types of support and services do you need to assist you in your role as a carer?

• In home help - especially at night when the person will not go to sleep as I, the carer, gets no sleep either. More respite. Assistance with laundry – incontinence
• In my personal experience and with my work, if carers were able to place their "dependant person" into respite overnight or overnight stay, this could be every night or maybe one night a week. Carers need to have a life too, a major reason for putting their "dependant” into a permanent nursing home is because the carers cannot get enough sleep, and also needs this social time for themselves.
• As a full time worker, I found it difficult to have services that covered the time while I was at my employment. In afternoons there were little or no services. We were too far away for most services to collect my mother to take her to day care centres, although she only lived 30 km from CBD. It was easier for me to attend each morning to get her breakfast, supervise tablet taking, suggest appropriate clothing for the day and leave her for a time until a carer arrived for 2hrs in the morning. I would not get home until at least 8pm at night, doing the caring and cleaning that possibly a service provider could help with. I could have left my employment and gone on the dole which is something individuals have to decide on. But I had to support my partner and 1 child so that was not an option for me. Weekends were spent catching up on washing and all other household duties whilst trying to get out for a coffee etc.
• I now need help with transporting my husband from nursing home to doctor’s appointments, but such care is not available.
• Day care facilities, transport, home care, respite care.
• My mother is in denial of how bad my father's condition is. His life would be more comfortable if she were given education and support so that she doesn't do things that agitate him. E.g., taking him out when he's drowsy, overstimulating him when he's confused, dressing him up and sitting him in his chair in a different room each day when staying in his own room would probably be better.
• Flexibility. It is a hard to find commodity for all our talk. Consistency of staff and matching staff to client successfully - consumer directed care would suit us but where do I find that in my area.
• More of what's available and a quicker service.
• Education, information and support.
• Respect and recognition that I am a carer and not be treated as a dole bludger because outwardly my wife does not show that she has disability.
• Correct Education - availability to make education accessible to all communities.
• Support NURSES. People trained in caring for people with this ILLNESS. These people are sick!!!!
• In home respite care and support given by well trained staff. Responsive staff who develop a rapport with the loved one and their carer. Also keeping the same one or two people who provide the in home care.
• More time!! I do case management with community aged care packages. It would be good to be able to spend more time with carers and clients in providing them with skills and tools to care for their loved one.
• Respite care and home care as the carer needs emotional support as dementia is a lonely life. The carer needs a window of time to shop, have their hair cut, go to the dentist etc. There is very limited help one can expect from family or friends as the general public have little knowledge of dementia or patience in the process of ageing.
• Already receiving EACH package, this is an enormous help.
• Care that you can rely on i.e. same carer(s) at same time, so you can plan.
• Celebrate Dementia week, get it out there - has gone by for previous years with no acknowledgement. Packages not sufficient - Providers greedy.
• Our situation changes weekly. Currently, as the primary carer of my father who is still nominally running a business, I have had to employ two part time carers and another person who can both help with the care of my father and assist in the business. We have excellent respite care one week per month. It has taken considerable effort to put all of this into place. The big gap for me and for my Dad is that there is no choice of doctor in our rural area and I do not find our family doctor approachable in discussing my father's multiple illnesses. Certainly we have not discussed the dementia element which comes with the Parkinson's disease. I would also like to see the cancer specialist using Skype to discuss blood test results instead of us having to travel for two hours for a two minute consultation.
• I am very pleased with the level of care I access at present.
• Specialist services such as mobile X-ray and skin specialists who will visit aged care facilities so that residents do not have to undergo the traumatic journey and long waits in public hospitals.
• I have valued the support of the dementia team. Their early intervention after diagnosis offered good advice, familiarity with the client and the ongoing support has been invaluable.
• Behavioural assistance and respite.
• Visiting services. Transport services. Medical diagnosis services. Top of page

Are there health issues that need to be addressed in the reforms? (E.g. timely diagnosis, care in hospitals, dementia risk reduction and dementia research)

• Yes - all of the above examples. Specific training for current GP's as well as the student doctors. More caring and understanding workers are needed in both low and high care residential homes. Nurses and doctors in hospitals need education on behaviours associated with dementia as they seem to have no idea and cannot handle situations. Significant funding is needed for research into dementia so that the care is improved and finally a cure found. We need to follow the example of France in this area.
• Research.
• I think the main health issue is educating the public on how to understand a person with dementia. Both mum and Dad were different and my belief is only the family can interpret their needs successfully. When they go into a home with many changes of staffing, it is impossible to care for them as you would have cared for them. Behavioural changes are most important but I believe can be dealt with appropriately. I would be happy to give written feedback on every visit of my mum, but where are the staff to assess and update these issues and to take action on them!!!!!! Timely diagnosis is very important so you can understand what is happening to your loved one, in both cases of Mum and Dad it was too late once I realised they had dementia. A person with dementia can cover up what their issues are, I think they know something is wrong, but cannot understand what it is and the community as a whole don’t recognise dementia.
• Timely diagnosis and appropriate referral. Dementia should not be used as an excuse for failing to give PT, OT and other services in hospital. Putting patients all together in a "Dementia Ward" and treating them all as if they have advanced dementia whatever their stage is ridiculous. A person with dementia should still be treated as a patient with heart disease, who has had a stroke, has cancer etc. not as if they are all geriatrics and beyond medical help. Carer as a resource person. Carers are often not used as the resource person they are and if over 60 are often talked down to by hospital staff. We need a new campaign to highlight the knowledge Carers have and a checklist to see that all medical personnel have taken some time with the carer.
• Care in hospitals - nursing staff treat the dementia patient as having normal mental ability. They assume that the dementia patient can convey their wishes and ask for assistance (e.g. Just ring the bell if you need anything) the dementia patient will 1. not remember that there is a bell and 2. cannot indicate what their needs are.
• All of the above.
• Care in hospitals is always a problem. Many times the ladies in my care have been treated badly within the health system.
• Absolutely. Getting a diagnosis can be very difficult, especially if GPs don't have the time to spend on assessment, or if they refuse to actually make a diagnosis - which happened in my mother's case. I am also very worried about the impact on people with dementia who find themselves in hospital, which I know from the experience of other family members was absolutely horrendous and added to their very rapid decline on returning home.
• Dementia research and education for care providers as to how to deliver a person centred approach and make residential homes real homes!
• Mental Health workers being taught that early dementia is not a mental illness that needs the person locked up.
• Timely diagnosis. Gradual re-adjustment from independent living e.g. not being admitted to hospital from independent living unit - to rehabilitation - to directly going into secure dementia based on one staff member's recommendation. Dementia was exacerbated by the confusion of moving from one facility to another, unnecessarily, in a short time span. Care in hospitals was negligent in terms of the lack of understanding of dementia related issues e.g. A person with dementia was tied into a chair with an 'apron' and left alone with a plate of food resulting in the person attempting to eat the plastic cover over the food. This is distressing for the carer to witness and takes away the dignity of the person with dementia. Patients being discharged from hospital too early because staff unable to manage difficult behaviours. Doctors in hospitals talking about the patient as if they weren't there regarding issues of palliative care. Lack of dementia specific wards. Dementia patient left for hours in Emergency with no support person. Ambulance officers lack of respect towards dementia patient. Dementia risk reduction and research are vital.
• Yes all of the above
• Hospitals are dangerous places for people with dementia - especially those who are mobile and/or seriously disorientated in unfamiliar surroundings. Staff need to be well trained in caring for those patients with dementia. Preferably there should be a secure ward for such patients - ideally with staff who want to work in that area and have had sufficient training. Diagnosis is also an issue as some people are waiting up to 3 years or more to get a diagnosis. This obviously has detrimental effects as they may not be able to take advantage of the medications available which may have helped, especially in the earlier stages of the disease.
• All of the above.
• People with dementia are poorly managed in an acute hospital setting. They often come out with new symptoms such as pressure areas, increase in behaviours, and decrease in mobility to name a few. Discharge planning is often very poor.
• More education and research into the health system for timely diagnosis. Care in hospitals to include further education by both doctors and nurses in understanding that patients with Alzheimer’s, for example, are not always off with the fairies but process information more slowly and over a longer period. This time is seen as the silent period when the patients can be sitting quietly or pacing. At this time, and after caring for my husband with Alzheimer’s, I don't see any current dementia risk reduction available which would help my husband.
• Increased research into causes and prevention requires more funding than allocated at present. Extension of volunteer program started in Bega Hospital to all hospitals, to prevent people with dementia at risk of delirium and consequently at risk of injury.
• Care in hospitals, dementia risk reduction, and dementia research.
• Early diagnosis and better understanding within community. Health professionals don't understand Dementia. Many health services don't know what is available in their own area; there should be a clear pathway.
• We need much better care in public hospitals.
• There are a number of issues of concern to me as the carer of my father while he was a patient in the surgical ward at the regional hospital. They are: 1. given my father's underlying health issues, he was not cared for appropriately and this led to further injury. In particular, it did not appear to me that nursing staff were aware of his sight impairment or sensitive to the fact that the unfamiliar surroundings would make him more confused than usual. He did not know how to contact staff during the night. I observed that his buzzer was not always put in the same place during his stay in hospital. 2. There was a long delay before my father was seen by a doctor after his fall. 3. Apparently a doctor had discharged my father from hospital without having examined any injuries arising from the fall. 4. My father was discharged without consultation with me and without any discussion about how he could travel to his home whilst in pain. 5. After my father suffered a fall, there was a general lack of communication about his condition and no appropriate follow up or consultation. Comments from staff about my father’s general condition in his hearing but without acknowledging him were disrespectful.
• Care in the community to prevent transfers to hospitals. Includes when living in your own home and or a nursing homes. There needs to be roving teams, specifically educated on dementia and delirium.
• I don't think we see a specialist often enough to assess his progress on the medication.
• All of those mentioned in the question.
• Staff to resident ratios in residential aged care has not been addressed at all.
• Obviously, as much research as possible into the different causes of dementia should continue to be an important priority of governmental planning because of the increase of dementia in society. Ultimately the cost of prevention or early diagnosis and treatment will cost society less.
• Consultation processes.
• Timely diagnosis. Dementia risk reduction services. Medical authorities to realise that quality of life near the end is of paramount importance and not just the thought that because someone is old they don’t matter anymore. Top of page

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