Responses to Online Survey

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Table of contents

Appendix B – CALD consultations

Appendix C – GLBTI consultations

Appendix D – Aboriginal and Torres Strait Islander consultation

Appendix E – Regional consultations

Appendix F - Alternative models of hospital based care

General

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

Bring back the caring in how we fund our elderly; they are being preyed upon by business and the Government we elected.
To remain a respected member of the community. To remain involved for as long as possible, to have others treat them with dignity & respect & patience. To have activities & opportunities available to match their ability.
Being cared for by qualified and caring professionals, who help them maintain their independence and dignity.
To be treated with dignity and an understanding of their individual needs. To have access to appropriate medical care. To have access to appropriately trained staff who are aware of the need to provide a variety of therapies, whether in a one-one situation or a in a more formal situation. There is much training available and apart from the staff, the family carers need to have access to short training sessions so they understand the various problems presented by those with dementia.
Autonomy, respect, individuality, and enablement. To be able to afford this. Support from streamlined, consistent and available services.
Pleasant surroundings/friendly, well trained approachable, patient, compassionate, CONSISTENT and caring staff. Activities to give them meaning and pleasure, end of life managed well and compassionately. Light, well designed rooms and surrounds to help minimise confusion, accessible garden with perfumed plants, my mother was a resident at the Pines Lodge Southern Cross Care North Plympton SA and it was excellent.
Quality of life and assurance. Constant contact with loved-ones and in particular with carer if he or she is a spouse or child. That their condition is given more recognition and professional staff, both medical and nursing, be adequately trained to deal with patient with dementia. This has to be treated as a condition different to any other form of illness or disability. Those carers themselves are made properly aware and receive the necessary guidance, instruction and support in their role if they were to perform efficiently. In doing so it could ease the burden placed on others.
Confidence that help sought in home will actually assist.
Personal care with dignity.
Good quality care close to home at an affordable cost.
The community to be informed, people are so ignorant to the words "dementia" and "Alzheimer’s” this is a difficult question for me, my mother passed away one year ago from Alzheimer’s, but she never acknowledged there was anything wrong with her "my memory is as good as when I was a teenager" were my mother’s words, therefore there is nothing as far as she was concerned that she wanted or needed.
Improved care.
Flexible, caring support.
Specific training for the aged care industry to support staff caring for patients with dementia and to support the families visiting their loved ones having dementia. Action to combat.
To be treated as a person.
A stimulating personalised environment.
More services relating particularly to dementia. More beds in respite for those living with dementia and their families.
Quality care and trusting staff. Ongoing professional support.
Easy access to information about services. There appears to be a "maze" which is hard to navigate without help. Clarify! Flexible and increasing support to enable one to care at home for a longer period. The amount of "time" allocated is insufficient compared with programs offered in early stages of the disease. An hour a day is not nearly enough to allow the carer to cope with 24 hour care.
Residential care suited to needs - e.g. younger onset have a place where patients are not all elderly and are able to use a computer and have rooms with internet connection.
More accessibility to help earlier diagnosis. Remove "demented" stigma. Need young onset information.
People who support family members with dementia need to have more facilities available for in home care. Dementia patients need to have a consistent carer in order to develop trust from both the patient and the family carer. They also need access to overnight care in home.
Care. More dementia specific low care places to be available. Earlier diagnosis especially of Non-Alzheimer’s dementias. Doctors to be better educated about Non-Alzheimer’s dementias. Nurses in general hospitals to have more awareness of needs of dementia sufferers, leading to less confrontations and trauma for the patient with dementia. Better and simpler access to information. It was very difficult to access government health and Ageing information. The web site was incredibly difficult to wade through to find how to access information about low and high care places, rules for finances, etc. Some common sense to be applied to ACAT dealing with a dementia sufferer living alone and waiting for assessment. To only deal with the dementia sufferer because of privacy issues meant ACAT just closed their file because each time they tried to make an appointment the person said "No, thanks". ACAT didn't consult with the referring Dr or with the family member whose details they were given. VERY FRUSTRATING.
More overnight care in small community establishments day respite out of the home.
Increase in sensitivity and support from General Practitioners, both for the person with dementia and the carers. Awareness/early diagnosis. Improvement of Aged Care facilities.
Confidence that there will be quality care available, either residential or community based, when it is needed.
Aged care staff that are better trained to look after those with dementia. Better funding to enable training of aged care staff. A better understanding of aged care dementia issues by those responsible for aged care accreditation, to enable better assessment of aged care facilities.
Support both in home and in residential care that allows the patient to have quality of life. Support for the carer to allow them to remain their own person while attending 24/7 to their loved one. Security --financial and physical-for the family as they have been looked after by the aged person and they need guidance to help them cope with now doing all the things their partner did in addition to what they normally are now doing. Easy access to any information they need - the one stop shop is essential and needs to have ALL the answers including such simple things as where the nearest Caring group meets. It is essential that all questions can be answered.
Genuine Care. Resident focused care not a staff focused environment.
Warmth in residential care; more focus on comfort food and dining; more entertainment and company.
That the dementias are NOT included as part of Aged Care. It is a DISABILITY and all services along the continuum-of-care should be reflective of this. It is NOT a 'nursing' problem, - and for a lot of the time, it is not even a medical problem, in terms of managing day-to-day living. The challenges of everyday living for most of the 'journey' are related to the various manifestations of the condition as DISABILITIES, needing an astute and well-informed understanding of cognitive / perceptual impairment and how that directly changes the person's capacities to manage the myriad of tasks/activities of every-day life! It is NOT a problem of the ageing process!!!
De-mystifying the process of getting information and practical help for the person we care for. If the proposed Australian Aged Care Commission serves the needs of older people and their carers it will be a good thing. If it reduces the running around for different information and assistance then it will be an asset. I commend Alzheimer's Australia for their tireless efforts in advocating for people living with dementia, but there are other aspects to aged care, such as developing a capable workforce and training for that workforce. People with dementia want to know that the professionals looking after them are proud of their work and find it rewarding. They do not want to feel they are getting the leftovers of healthcare.
Good quality care for basic everyday living e.g. making sure they eat well, are clean, have clean clothing. That their toilet needs and personal hygiene is attended to most importantly they are treated with respect and not patronized are made to feel afraid.
A feeling of being safe and cared for.
Access to quality care. This means having sufficient facilities and staff available to meet the needs now and in particular to meet the rapidly expanding need. It also means access to appropriate facilities for people under 65.
Access to quality services when and where they are needed.
Individualised care which meets that person's needs. Reflects more home based care rather than institutionalised care. Community care which is 24/7 similar to the model for some people with disabilities. Quality of life, quality of care and quality of death!
Dementia research funding advocacy. Recognition of the shortage of nursing home facilities and the costs. Maybe a new model for home based care.
Ease of early access to services.
Easier pathway through services equitable system.
Respectful, caring and informed staff and safe pleasant facilities. Staffs need to be well trained in managing the frustrating behaviours of dementia patents and not become rude and rough. It is bad enough to worry about the deterioration of a loved family member without being concerned they may be being treated disrespectfully. One nurse I overheard referring to patients as the "Vegies".
Access to immediate help when they need it
Funding for research and aged care facilities. Support with preventative measures such as nutritional advice and exercise. Support networks when they, or one of their loved ones, is faced with dementia. Access to expert advice and care.
Flexible respite care. Both in home and also for residential aged care facilities.
People and carers want diagnosis as soon as possible to develop management strategies and plans for the future while the person with dementia is capable of making independent and rational decisions. Carers need help to negotiate the system. Informal carers who do not live with the sufferer feel powerless and especially need assistance.
Access to dementia-appropriate services with a guarantee of lifelong care, regardless of progression of illness. Top of page

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

Government Policy and Funding.
Currently accessing Elsie Salter House - Day care - in Ashburton concerns: Ideally there would be some opportunity for one-on-one interaction. The clients' abilities - physical & mental varies a lot - ideally there would be a little more time to be able to interact with each client on a one-to-one basis - even if only for an hour or two per week.
The waiting lists are a problem, particularly with the 'diagnosed' elderly who have surviving spouses. Often the spouse is initially happy and convinced about the need for supported care, but as time goes by their resolve is undermined by the delays.
The increasing co-contribution that people are required to provide.
Rigidity and inflexibility in the top management and board members of many age care homes. And the ability for them to become blinked by 1001 new health safety.
My parents are both living together now and have been for 62 years. I hope if one goes into residential care that the other one does too. The oldies hide an awful lot of issues because they are scared the sickly one will be put in a home. More education for aging population would be great. I think Centrelink could be much more compassionate, they cause a great deal of stress.
The complexity for baby boomer children of today's elders in finding suitable services to support them.
Lack of available beds WHEN NEEDED, I managed to get beds for both parents in the same facility, but we were very lucky!! INFORMATION. Not enough HOURS OF CARE in the community to meet the needs of people with dementia, and their carers especially as the conditions worsens. My father had total breakdown and needed hospitalisation and I had to give up work to care for them both (he is legally blind and 93yrs), this was over a period of 10 years and I'm lucky my marriage didn't suffer as well. It is ridiculous to expect people to manage with 3-4 hours/week if they are lucky. Respite both home and residential is hard to get. I didn't claim any Centrelink benefits as Dad was getting the Carers allowance.
Lack of adequate funding is often the excuse in shortcomings in services provided. Common excuse that there is a lack of trained staff or otherwise, and shortage of equipment and facilities.
It's a maze - especially for elderly people to negotiate - they are not confident searching online for example.
Reluctance of Residential Care providers to allow full inspection of premises, food preparation and staff qualifications.
The unfairness in costs of care. I don't see why I should be penalised for working hard during my working life, being careful with my money. Not wasting my money gambling, drinking and smoking only now to find I have to subsidise people who have. Robin Hood is alive and well in the age care industry.
When people are diagnosed a parcel with all information of places and people to help and services available should be given to families and this should also be an adult child when there are two parents and one parent is the patient, as I found it impossible trying to access information as privacy laws said I couldn't.
Ensuring that my mother gets the stimulation she needs to arrest the progress of her dementia.
Limited choice.
We were very lucky that our father was well supported by the system through in-house care, respite care and ultimately, a good nursing home with caring staff. An earlier nursing home that he lived in for some months was of all lower quality with staff who were over worked.
I fear that having my Mum put into high care will have her deteriorating more rapidly without as much stimulation.
Not enough accessibility. Residential respite is not offered enough.
Red tape slow processing.
Information is hard to get about resources available. As dementia increases there is a lack of programs available and carers to provide some "time out" for the carer. It is hard to get regular carers and thus a familiar person for ongoing care.
A case worker should be provided to families attempting to manage patients at home at diagnosis - because resources are scattered, info fragmented, there are many bum steers that waste already depleted energy. OH&S has gone mad. Paper quails are overvalued - the average 50s style woman is what is so often needed, she no longer exists. Teach everyone they’ll have to do some caring one day because there just are not enough carers to go round, equip them with the necessary common sense, strengthen community bonds - it takes a village to look after a frail person. Re-evaluate how much life lengthening drug therapy is offered.
The quagmire of information in many places not easily deciphered.
There is no consistency with the carers provided which causes more confusion to the dementia patient.
Lack of easily available information in an area where one suddenly finds oneself needing to be an 'expert'.
I have been very impressed with the residential care for my mother at Bay Side Cottage and Hadden Place Day Therapy and Respite Centre.
The lack of available, appropriate residential care facilities and the complex issues involved in securing a desirable placement. Misrepresentation in marketing to Seniors who may not present as having dementia but do not necessarily have the legal capacity to enter into contracts for aged care housing. Affordability.
The fragmented approach to assessment, the limited supply of quality operators which means that good services have long waiting lists which often means that families have to go to extra services operators just to get a bed in a half decent home. The extra services only offer flasher accommodation when what is really needed is quality care, not upmarket buildings. Currently there are limited places for people needing high care with few new beds being commissioned other than extra services beds. Government needs to establish and provide baseline high care accommodation as many families do not want to use extra services due to this high care. Also the current system whereby bonds are 'negotiated' seems unfair with some people who have organised their affairs or never having saved, paying little and others being required to pay significant sums. It would be better for homes to set bonds, to let the public know their price, and to allow families to choose the accommodation level that the home is to provide. From what I can gather the care and other services will be the same in whatever home the person ends up going to. Competition can only be a good thing for families seeking better access to services to meet their needs.
That I would not be happy going into any of the aged care facilities that I know of. Will there be any better alternatives?
How do you find out about them? It has taken me 8 years to get my head around how the system works. The worries about financing our old age. We have saved money but how do we know how much we need? How can I be sure that the care we receive in a nursing home is appropriate? It makes me feel insecure to know that the family home is to be included in assessment of our finances. There are so many implications involved here. How can you sell the home if the Government owns half of it? How can you trust nursing homes to charge a reasonable entry fee? That will not work.
That the words spoken by senior management and nursing staff just do not relate to the attitudes and behaviour of the resident's primary carers, the PCAs. That the PCA's run their own systems in the corridors of a facility. They are unsupervised and unsupported by Div1s because the Div1s are consumed by completing regulatory paper work and huge amounts of general administration. The Div1s are glued to a computer screen.
That my concerns about food have been denied by the Manager of the Aged Care facility.
There is a chronic shortage of relevant, appropriate, timely dementia-specific services in the community. As they are mostly delivered through the Aged-Care system at present, they are often inappropriate and insufficient. Same points apply to Residential Care services!
We want assurance that if mum ever has to go into residential care, we won't have to "sell the farm" to find her a place. She has an adult daughter as her fulltime carer, and expressly wants her daughter to be able to live in the family home for as long as she wants. We are fortunate in that mum is a veteran and Veterans Affairs actively advocate for their clients. But not everyone has the benefit of their advocacy.
That there is enough staff in residential care facilities. That the staff are well trained to be able to manage and understand the needs of those that do not have their own voice.
The lack of residential facilities. This means long waiting times (the carer often tries to keep going until they "hit the wall”) or having to take a place at a facility you think won't give proper care. Good places are few and have closed waiting lists or waiting lists of at least 6 months. If there are places they tend to only be available at inferior places. Residential Respite places are limited and require booking several months in advance. Even worse the current funding limits how often you can get residential respite (even if you are prepared to pay). This is likely to drive carers to put a person into care earlier than would otherwise be the case.
That 'dementia friendly' too often means 'lockable facility' and doesn't mean person-centred care that is designed to minimise the impact of dementia and maximise quality of life.
That it meets my needs rather than a one size fits all. My biggest fear is low quality of life or neglect.
The sheer cost to a family The standard of care and staffing ratios in nursing homes The question of the current wage structure in residential care (low wages -poor quality staff (in many cases).
Paid carers have a lack of understanding of what people are paying for and how this affects their family carers. Lack of respect by paid carers for peoples remaining abilities. Lack of knowledge of ageing in residential care and moving of residents because management won't support the additional staff required to provide higher levels of care.
Inadequacy in client to carer ratio in aged care facilities appear to be penalised for having private health care-once ACAS do assessment, ready to start charging for bed per day as assessed as not rehab.
That there will be enough good quality respectful humane services. Also that staff are resourced to do the job without too much strain.
Timeliness and the service you need aren’t always available and the services make you have what they want you to have.
I am worried that services will not be well funded and that staff will not have an expert understanding on how to deal with dementia cases. I am concerned that those living with dementia will not be able to do so with dignity due to underfunding of care facilities.
Poor training of the staff in meeting the needs of frail aged people.
Alzheimer's patients seem to be having few options apart from a "secure facility". This is very frightening. There should be facilities for patients who are one of a couple to go into together.
That people with dementia who are entering care services are not assessed adequately or provided with appropriate care for their condition. That there is little capacity to plan for the inevitable deterioration of the person's condition. That challenging behaviours associated with progressive dementia are then seen as too difficult to cope with in the aged care setting or even in dementia-specific settings.Top of page

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

Family members who have relatives in aged care need to be empowered and educated to ask and receive regular info on pain relief used for their family.
It is essential to have access to the internet - I think those who don't would find it much more difficult to access information. Overall - the availability of information & the support services are phenomenal. I am certainly very appreciative for what is available & what I have been able to access.
I know that the Alzheimer's Association provides superb support services - but the public generally is in ignorance. I am especially concerned that carers should be much assisted in terms of communication. The old 'I told you yesterday' is still around - as a retired 'helpline volunteer' one call that sticks with me was that of a daughter who, with her sister, visited their mother in a hostel, and each day the mother would ask 'When are Mum and Dad coming to see me' - to which the other daughter always replied 'Oh Mum, I keep telling you that they're dead' and of course the mother grieved every day, only to ask the question the next day when she would get the same answer!
Yes. Especially regarding home care packages. the government hands out a sum of money for each "case" but the actual care delivered rarely correlates with that sum, recipients and their carers are not given details of what is available to them and often requests for extra services are treated evasively.
My concern is that there is no information in GP surgeries or health clinics about dementia. Many other topics are displayed but there nothing on dementia found in any surgery. This glaring omission. GP's are busy and if a carer/potential carer or friend armed with the areas into which to look, much time will be cut in doctor’s surgeries. A carer suspecting that their partner/relative/neighbour should surely be able to have access to a nurse educator with qualifications in aged care and dementia care to make useful observations and give advice to the potential carer/family member before the final diagnosis. In this way financial, enduring powers of attorney and can be put in place when the prospect person with dementia understands what it going to happen in the future.
Well that was a nightmare. My mum has dementia and I had to pursue this with her Dr He was not helpful at all. He should have picked it up first especially with all her medical history. She had a very serious staph infection which caused the dementia and he never followed it up. Having medical staff supporting you makes a huge difference. The person who finally helped was a social worker who pointed me to the right organisation but you still have to do it all yourself and I have a family of my own and no other family to help me .
I have lived the nightmare with my father until his death in April. He had a formal diagnosis of vascular/mixed Alzheimer’s from a geriatrician but the rural Palliative care nurse was completely ignorant of this a few weeks before his death. What a blessing that was. I will have to do this all over again with my mother. Please address communication between the services and provide a continuum of care based on consumer choices.
Information WHEN you need it!! Which is often on the weekend when a crisis occurs! Over assessed and not enough services at the end of it! How many times do we have to say this??????
Access to information is not such a problem. But again it is the cost-cutting that affects the satisfactory services being provided or sought. To be put point blank, it often results in "third grade" service.
As hinted above - most information seems to be online.
Too much glossy handouts that are not easily readable.
Yes I found it hard to access information.
Getting access to information is difficult, particularly when you are in the middle of looking after someone with dementia.
Hard to find the right information and to work out what it means for us
No.
Gaining access, not enough places.
I have no idea of the process that awaits my mother.
Information is hard to get without contacting either Alzheimer’s or Carers. Assessment can take too long.
Unite resources, including voluntary, into a one stop shop, design care systems from patient and primary carer point of view e.g. you shouldn’t find your disease and location dictate what you get.
Yes. We need better and simpler access to information. It was very difficult to access government health and ageing information. The web site was incredibly difficult to wade through (and I am highly computer literate) to find how to access information about low and high care places, rules for finances, etc. We need some common sense to be applied to ACAT dealing with a dementia sufferer living alone and waiting for assessment. To only deal with the dementia sufferer because of privacy issues meant ACAT just closed their file because each time they tried to make an appointment the person said "No, thanks". ACAT didn't consult with the referring Dr or with the family member whose details they were given. VERY FRUSTRATING.
The wait time for assessment.
Lack of information from General Practitioners. Lack of willingness of GPs to be involved and recommend assessment, or denying requests for assessment/services.
There are long waits for ACAT assessments, from both initial assessment and from low to high care. This is due to the limited human resources that states and territories provide for the ACAT program. This delay impacts on families and people with dementia with often long waits especially if they are waiting in their own home. The only way to short circuit this long wait is to get the person admitted to the local hospital and refuse to take them home until an assessment is done. The hospital then leans on the ACAT team to undertake the assessment as they want to free up the acute bed for other admissions.
It is virtually impossible to get any idea of care offered by a home from outside. When high level care is required, there is little choice available - it is usually a take it or leave situation. Aged care accreditation is a tick the box exercise - it should be done more frequently on a surprise basis, with more emphasis on what is actually happening, rather than worrying about whether all the paperwork has been completed.
Definitely. There is a real problem at present finding out information. It took me 8 years to find out. It becomes just too hard for people and they just cope without getting services they really need. The Gateway idea is good but it must have the answer to every question any one can ask. Family doctors must also have that information as it is the first place people go to when something is amiss. There are so many agencies that can help and they include church ones, local government, State government and Federal Government and private organizations. Many of these double up and it takes a long time to find out what is available. It is essential the Gateway is very well thought through, very well advertised and easy to access.
Not in particular
Well, in a way. It is nigh on impossible to get an accurate feel for a place when they are using a rotating shift between 4 sections, when the staff are changing 7am-3pm, 3pm-11pm, 11pm-7am. Actually a good measure is to note how many staff are using different "voices" when speaking with residents. If they are not confident that their everyday "voice" is effective for communication then perhaps you need to look more closely.
Yes, information in a timely manner as you go through the stages - we were flooded with brochures on a few occasions but it's too much at once, carers need to be given the information again in a timely manner
There is information out there, -but it is more of an issue about where is it? - How do you find it? - What information are you going to need at different stages as the disability continues to change? - Who are the best-informed people out there to help with specific problems? - How do you access them / find out where they are.
Yes, in Brisbane, the Queensland Health ACAT services from the north side did not share information with the Southside ACAT last year when we had occasion to access emergency respite care for mum. So the district who completed an emergency ACAT while she was in respite, did not make it available to the district whose catchment area she normally resides in. But in the end it was a good thing, because when they did the emergency ACAT report in a north side nursing home, they put her down as someone who wanders, when in fact all she was doing was looking for a toilet in an unfamiliar environment. Fortunately we were able to have another assessment some time later when mum returned home and a more accurate picture of her behaviour was gathered. I believe that all older people who have several health conditions (it's impossible to define an age without sounding ageist) should think about their future needs, discuss those with their family and appoint an enduring power of attorney. Decision making is easier when you have a clear idea of the person's wishes.
No.
Yes - no one seems to want to help – overloaded.
Information of services and facilities suitable for younger people is almost non-existent. For residential care there is an extra problem in that because of long or closed waiting lists, facilities are very reluctant to provide information and especially allow visits.
It is a maze, a frightening, unfathomable maze. Everyone who starts on the journey seems to have to find their own way - depending on the care their PWD needs, depending on what services are available in my area compared to services in the next suburb or municipality, depending on whether they know where to look.
Needs to be coordinated in a one stop shop delivery model.
Not really. I have been interviewed by assessment teams when reviewing a home’s accreditation. Outcome then posted on a web site.
No.
Very frustrating, waiting list for assessments. A lot of information on internet, but how versed are older persons on seeking information.
Not enough is really known about dementia and it would be good to see it prioritised in research.
You have to wait for assessment and then wait to get the care. And then the care is the care they want to give you, not what would really help you.
Yes; there is no long term view to assist me to face the issues that arise with my mother's care i.e. I need to know what services I can access along the dementia journey.
My concern is for a relative who is a widower and lives alone. Organising an assessment by an Aged Care Assessment Team seems to be a step, yet I think some form of assessment and care service is required to keep him living independently and to help him plan for the future.
Yes - there seems to be little support for families when a person with a diagnosis of dementia is entering care about the best options for lifelong care. It seems to be more about the "vibe" of a place or how nice the furnishings are.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)?

Currently we have access to & utilise 3 different services: - 2 hours through Ashburton Support Services - Wed - 4 to 5 hours thru Elsie Salter Day Care - Thur - 3 hours in-house respite Fri. The service I would appreciate would be a much more compassionate & understanding & caring Alzheimer’s specialist. To date we've had 5 appointments with two different specialists. Their 'bedside' manner certainly has much scope for improvement. Someone to talk to at various times - to ask questions - what do I do now? How do I resolve this? Is this the right decision? Are there other medications? i.e. SME (subject matter expert) availability for Q&A
Residential care in my aunt's case.
Home care and support.
My husband died in June 2011. I would have appreciated more day care visits when he was still living at home, not just short 2-3 hour sessions one of twice a fortnight. This did not give carers enough time to wind down to feel 'normal' again. I believe that those with difficult behaviours can live in secure dementia units, but staff must be specifically trained to help with these often upsetting behaviours to themselves and to other residents. Art and music therapy can do wonders to help those in the advanced stages of dementia and an understanding of the behaviour so they may be defused. It is essential that residents to be able to walk through the grounds of the establishment without hindrance, to enjoy the sunshine which gives them a sense of purpose and freedom.
To be honest I had to struggle very hard to get care for my parents they both should be in residential care but I want them in their home as long as possible but there are lots more aged people and no help we need lots more services all of them.
Individualized consumer directed services. Care can create dependency instead of providing enablement
RESPITE/showering/dressing/cleaning/incontinence pads/laundry/assistance with medical appointments/recreation for the sufferer/counselling for family carer/advice and support available WHEN you need it NOT 2 weeks away! /It is not rocket science so please do not over complicate the care or the assessment.
ALL of these!
Home care.
To understand the When and How to use the available services.
At the moment I am managing to care for my wife using two days respite at the Brisbane Mater Hospital where she gets excellent care. We also get good quality support from Alzheimer's Australia at the Gabba.
More home care would have been a better option, and respite care more accessible.
Residential care.
Home care.
Understanding of carers needs and accessibility to services without waiting lists. More staffing in residential care for those with dementia.
Home care, residential care.
Flexible respite care for hours/days at a time instead of a rigid block of a week or two. More centres that offer respite that are/become familiar to the client. A place that is secure and offers a variety of stimulation/activities as well as occasional (or more) overnight care.
Home care and suitable respite care i.e. younger onset, catering for FTD not just Alzheimer type dementia.
Can’t say enough!!!!!!!!!!!!! More young onset dementia places and services in all of above.
Home care.
Have a progression through services as symptoms become more severe and as families become unable to care for the ill person at home. HACC package was excellent once we had access to it. Then more was needed and a low care dementia specific bed was hard to find. There seems to be a lot of pressure on Nurses and Nurse Assistants who are poorly renumerated for difficult, important work.
Short term residential care and outside day care.
Access to home care services would have made a huge difference to minimising the progress of dementia, dignity and independence.
After the early stages of dementia the persons level of confusion becomes so much that others find it difficult to lead manage their care while leading their own lives. At this stage families begin looking for some form of residential care service. Often these services are limited, especially if the person has a severe behavioural issue, including wandering or absconding from the home. Many homes don't want a person that has such issues so finding an appropriate place is often difficult. With the growth of community based care it would appear that people with dementia are entering residential care later so it would seem that this is the only area that government should focus on as at least 4 out of 5 residents in care these days are people with dementia. So new services should be encouraged to provide care for residents with those types of needs and let those that don't have these needs continue to be cared for at home through community care programs.
Residential care services.
All of the above. We are lucky to now have home care, respite care and a package with assistance. The Daily care is wonderful. We are involved with Carinya which is a Villa Maria establishment where people can have day care with wonderful people in charge, a bus pick up service, and very appropriate activities. We can access respite stays of up to 2 weeks. This takes the pressure off for a few hours on a regular basis and it is wonderful. There should be more of these types of support. We also really appreciate respite care in our own home. This is a wonderful service and should be available to all who need it. If the Carer goes under then there are two people for the health system to cater for, so this type of service allows the carer to be a normal person and it recharges their batteries.
To be able to support family members in their or our home.
Better residential services and advocacy for residents with dementia and Alzheimer’s.
Home-based Respite care for my husband, to enable me to go to work. Needs to be able to take him out and provide varied, community-based, stimulating, 'normal' activities. There is also a need for full-day 'Day Centre' type care, i.e. working hours which is dementia specific, but providing something other than a programme for 'geriatrics'. All services need to be provided by highly trained well-educated professionals in the condition of dementia. NOT NURSES!!!
In home care is a necessity for us; it would be great if all carers had a sensitive, reassuring manner, but some are quite gruff, which can be off-putting to an elderly lady who is very shy. So more training in handling the complexities of aged care for paid community workers would be great. Training for workers in recognising unmet needs rather than seeing only challenging behaviours is a must. That is not to deny that some people have psychiatric illness that needs attention, but not all behaviours are mental health problems, some are caused by undiagnosed physical conditions, loneliness or too much stimulation (too much noise, too much visual stimuli).
I believe that a multi-faceted approach is ideal - encompassing all listed options. A one size fits all does not support the fact that people have different needs and also the people's needs change as the Alzheimer’s journey progresses.
Respite care - residential care.
Currently residential care. On my caring journey of nearly 8 years, the needs varied. Initially it was help taking my wife out, keeping her occupied and giving me time. Later it was that plus periods of residential respite. Occasionally it was access to advice on challenging behaviours.
In-home respite care with a carer suited to my husband's needs and personality.
Residential care-secure dementia unit.
Service for severe behavioural issues.
Respite care and residential care.
At different stages all of these have been needed.
Care and support. Home help for the household to relieve some of the burden. This is not always available if a person is not the usual person who does the chores, but if the carer does them they are hard to fit in amongst the caring and the exhaustion.
Respite care, residential care services for behavioural issues.
I believe my brother needs assistance with activities of day to day living. An example is that he is losing, or has lost, the ability to use ATMs for banking. I believe he also needs help with attending appointments and other activities that require planning, problem solving and organisational skills.
I am particularly concerned about the provision of lifelong care, regardless of evolving behavioural issues - with an emphasis on continuity of caregivers and care environment.Top of page

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

I am confused at how the government has made available funds for pain management in dementia and elderly patients in care, when it drives managements into a frenzy, we are now ignoring skills of staff and driving ever increasing use of medication, now each behaviour must be pain related and you must provide proof medication was accessed, don’t care if there was a trigger, don’t care if you managed to remove cause of behaviour. Morphine patches are now in vogue as is Endone up to twice a day with a patch and let’s throw in Panadol 4 times a day, this accesses good revenue. And threaten staff with their job if they do not agree, that removes their advocate? Is this a backdoor attempt at euthanasia reform with no debate, and no policy changes? Check your death rate recently.
My uncle in his role as carer is not sleeping, and is finding the drive from Rosanna to 'Peter James' in East Burwood increasingly adding to that tiredness. As in most or all cases of serious illness it is what Elizabeth Kubler Ross the 'next person' who needs equal care & support.
Respite, assistance with personal care.
I am no longer a carer as my husband died in June 2011. But I spent much time in my husband’s dementia unit talking, dancing, laughing and playing music with (not to) residents. Some, but not all, carers seemed to have no imagination or were not capable of empathise with the residents and were happy to just sit and read a newspaper. Carers need more training in diversional therapy and only those with a natural bent towards working with aged care residents must be selected in the first place.
Understanding from the general community and especially the medical profession and most of all Centrelink they are the worst you feel like you’re a criminal trying to rip them off for the few dollars they provide as an allowance. Heavens sake I gave up a part time job to take care of my parents. The forms they have you fill in are ridiculous they certainly weren’t compiled by a carer because the questions they ask are so unfair. For example you can’t count the hours that you take to help shop, there are no questions about how much work you do arranging every appointment, organising meals on wheels etc etc no my biggest beef is Centrelink. Now that we are in the system the different agencies are great.
Communication between the services.
Respite, both residential and home based.
Most importantly meeting with other carers in support groups that are provided by some organisations as with Alzheimer's Australia. These are handled by professionally trained staff. Often meeting in a social atmosphere and involving or participating in group activities is of very valuable and positive assistance.
I am not a carer - but my mother is, and she is hearing that getting help is not worth the bother even though she is not coping. She does not have the confidence and wherewithal to research and reach out for support. She has to initiate everything (we are not allowed to) and she hasn't really the capacity to do so. GP doesn't seem to have time- even though we have alerted her to the problems.
Access to gerontologist, podiatry, physical /Body care. Home safety advice
Nothing more at this time. I would like to see the government spend more on Alzheimer's research rather than the pittance currently spent. The government should realise a cure for Alzheimer's would be the best way to overcome future care problems. I sometimes wonder if the staff of governments, support and care organisations are more interested in a cure not being found.
Home visits from aged care support on a more regular basis than we ever had would be a start.
Extra people to visit my mother.
None.
A plan of the processes involved with going from one facility & when this will happen. By typing this I will now ask the Aged Care provider to give me a typed plan. It needs to be on paper so that I can properly process things when they happen. I want more consultation.
Quality trained staff.
Respite and programs for the client to participate in while they are able. These seem to close down when there are issues.
A case manager from day of diagnosis - who protects the carer from breakdown? Should the diagnosis be a double sentence?
I think every carer needs a "case worker" experienced in the local area and who knows every place /service available and referrals to them. Someone to help say "this thing might occur and you may need e.g. a wheelchair soon". Especially useful for rarer forms of dementia.
Guidance with dealing with dementia patients. How to provide them with the respect that they deserve and manage any outbursts that they may have.
I have found Alzheimer’s Australia an incredibly helpful source of help by way of information, support group, library, counselling and more. This has been in an absence of any other help for family carers.
The type of support currently offered by AASA is invaluable.
My family member has been in residential care nearly three years and I am the only person who regularly visits, usually 3 times a week or more. As her informal carer I would appreciate having the opportunity for some counselling from time to time as the dementia takes more and more of my family members 'person' away and I need to come to terms with this. Also other family members, while related, leave the care, decision making and management usually to just one person and it would be good have a service that can listen and help carers put this responsibility into perspective.
Psychological support. Alzheimer’s Australia has been very helpful here. A local carer's group where likeminded people can give support to each other and have a bit of fun. Respite care in the home and out of the home. ‘Time out' for the carer makes it work Information about everything freely available when I need it. Financial certainty so we can plan our futures. We should feel secure in our own home knowing it is always here for us. Financial and psychological security. Somewhere to ring when immediate assistance is needed. Information about the disease. Knowledge is power. The Alzheimer’s Association is great at providing this. We need to know what is normal within the disease and how to cope with it.
Education!!!!!!!!!!!!!!!!!!!!!! A real person to contact for information and suggestions of where to gather more advice. Feel that this is a collaborative journey.
Paid leave to go and feed my mum.
Home / Community based, suitable Respite Services, provided by people who are highly trained in the condition of dementia. Of sufficient quality and quantity to enable the carer to participate in the paid workforce, if necessary.
I believe all adults should complete an advance health directive and power of attorney, and should update those every five years or sooner if necessary. It makes the job easier for the person who must make decisions when a person has lost their decisional capacity. So a staged campaign in each of the states with say, the Public Trustee sending a postcard or flyer to persons aged 60+ inviting them to discuss the matter or to contact a justice of the peace might be an idea. I would really love to see a public education campaign aimed at eliminating discrimination against people with dementia and ageism in general. Similar campaigns for disability and mental illness have been successful in the past so it's time to let people know that just because someone has dementia or even early dementia, they retain many of their abilities and still want to be part of society.
Someone to talk to about coping with the day to day issues. The confidence that when I cannot get to the facility that my mother is being well cared for in all respects.
Information on availability of respite care, residential care - tried many times but to no avail.
Assistance such as cleaning services, while appreciated, are so minimal that they are really of minimal assistance. Overnight in-home respite care so that I can go away for a break. My husband is not suited to external respite care - the staff have phoned me on previous attempts and asked me to take him home because he is so distressed and therefore this lovely, gentle man is also too disruptive day and night to the staff and to other residents.
Education about the disease and other health care issues, information about where and how to access care/services, connected services, case manager who walks with you on the journey, time for me and my relationship with the person rather than always being in a caring role.
When my wife was at home I accessed through local government and church groups their respective day care facilities. Found this most helpful.
Ones that fit around my work and family needs.
Home care, activity groups, home nursing, respite, local doctor.
Breaks from the role where care of the relative is good quality so you don't worry while you are gone.
Support at home with the chores (cleaning, gardening etc.) Someone of my choice to come in and do some respite while I go out occasionally. Training for the whole family and friends about behaviour and what to do about it.
Funding and training. How to fit in looking after myself as well.
A guide to working out how to assess the level of difficulty the sufferer is having and what type of assistance would be helpful and appropriate. It is difficult to work out when it is appropriate to intervene and how much to leave responsibility with the sufferer when they are living alone and are concerned about their independence.
My father passed away with an Alzheimer’s -related illness in April 2011.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)

Fund the elderly and we will not have to stone them till they fall off the perch.
Absolutely - all of the above.
All of the above - all my working life I worked with cancer patients, and when I started my training in 1958 the word 'cancer' was whispered, and I'm finding the same thing is still occurring with the word 'dementia' - in many ways this is the barrier to improving the first three of the above - and incidentally money would be caused to flow more readily for the research section.
G.P.'s need more training. If a patient has some cognitive impairment, the G.P. may say "are you cooking for yourself?" the patient may reply yes and the G.P. accepts it, instead of asking what the person cooked the previous evening. Answer would probably be baked beans on toast.
Health issues. Many illnesses could have been caused by poor dental treatment. Attention to teeth a the early stage of dementia is essential as very poor dental hygiene can lead to future infections and many discomfits to a resident who can no longer explain the nature of his/her pains. Early Diagnosis is essential. This gives the PWD and their carers to put family matters in place before the PWD becomes too confused to understand what is happening. I believe it is important that potential sufferers should be part of the diagnosis process. GP's need to be trained to recognise dementia and with the help of an appropriate trained practice nurse or a specially designed clinic with appropriately trained staff to help both the carer and the PWD. Guidelines to dementia diagnosis are difficult.
It was my own persistence that saw my Mum get the diagnosis and help she needed. There’s too much hysteria around dementia maybe it’s the name but my Parents are still in denial. The biggest problem for my Mum was when she was very sick in hospital when she withered away and needed rehab it took so long to move her to Hampstead and this caused her to get very very depressed because she wasn’t getting any services that she needed. The truth is if you don’t have family to come in and help you eat she physically couldn’t do it then she didn’t eat. Great nursing why can’t they get volunteers at least.
Good medical services for the elderly with dementia. It is a disease not a death sentence. We all die and so should all receive the best medical advice until death. This means advice that a treatment is no longer a viable option. Let the people with the money and knowledge provide the services and allow individuals to take responsibility for diagnosis, research and risk reduction.
Yes timely diagnosis with directions about what to do in the future, well educated GPs and other staff. Hospitals do not cope well with people with dementia, e.g. after surgery following fractured NOF my mother was left with her lunch untouched in front of her, still untouched at 2.30pm, staff just standing around talking and laughing!!!!!!!!! I am opposed to FOR PROFIT agencies being allocated funding for this care, and see the whole funding process as overly complicated-too many providers! Care workers are poorly paid, for the work they do.
Again, ALL of these with emphasis on timely diagnosis, followed by the rest.
GP education.
Timely advice realised by education provided by radio, television, and newspaper articles.
More DEMENTIA RESEARCH NOW.
Absolutely, timely diagnosis, referrals immediately from GP, and totally dementia research.
Letting the right hand know what the left hand is doing.
Timely diagnosis - my mother could not get my father's GP to realise that there was a problem and by the time it was diagnosed, he was a long way gone.
More dementia risk reduction. Knowing what I can do to help my mother.
Acute hospitals and emergency departments have NO understanding of dementia and patients are often treated badly in these situations.
Timely diagnosis is vital. Any hospital admission is fraught as the environment is totally unfamiliar and staff often do not have an awareness of the needs/behaviour of a person with dementia. General awareness of the benefits of exercise, diet, social interaction is fine but should not be portrayed as the way to prevent dementia but simply to enhance well-being for all in the community. Continued research involving consumer input is needed to enable the needs of dementia sufferers and carers to be addressed.
quality of life over quantity when designing research - prolonging life isn't necessarily 'progress', more emphasis on care system design rather than brain function until we get it right i.e. very practical and applied.
Let’s get all of the above happening and certainly research into it, let’s get this cure!
The current research being conducted in America where arthritic drugs are being used should be fast tracked to Australia by the government.
Yes. Lack of help during the incredibly draining and confusing time when trying to find a diagnosis. Drs who say some memory issues are normal and dismiss family concerns was very disappointing in an otherwise excellent GP. Three years with annual visits to a neurologist with a final report saying, "There is something wrong but I don't know what" without thought of referral to other help was very disappointing. Doctor’s comments of "She just didn't concentrate hard enough during the test" were very dismissive (and incorrect) and unhelpful. After numerous calls to hospitals at night for me, the next of kin, to come to calm the patient down there is an obvious need for nurses to be more aware of ways to deal with confused, disorientated patients who are frightened. Getting a bigger, 'bossier' nurse to deal with them is NOT a solution. Education about challenging behaviours (and this is not extreme behaviour) would hopefully help.
Care in hospital needs to be addressed. Mum's stays are stressful for all concerned.
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. Person with dementia was tied into a chair with 'apron' and left alone with a plate of food resulting in the person attempting to eat the plastic cover over food. This is distressing for the carer to witness and takes away the dignity of the person with dementia. Patient 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 - dementia prevention and risk reduction public awareness programs would be useful. Dementia research into familial links would be a good area for government funds to be targeted to.
Hospital staff are not dementia trained. Carers need to be able to advise hospital staff of dementia of patient as soon as possible and have it noted on the records. So that other staff are aware of this. In addition, carers need to be with the patient at all times, similar to a young child being accompanied by a parent. Dementia research needs to be accelerated. Diagnosis needs to be much better and earlier. GP's need to recognise those with dementia and make appropriate referrals.
Timely diagnosis definitely. Especially with Alzheimer’s. Doctors MUST be better educated about the early signs so they don't say "It’s only the ageing process happening’’, when you go there with a concern. Thus research must be supported. Professor Woodward is doing a fantastic job in this area. He needs more financial support so his work can continue. Care and respect of patients is so important in hospitals. Nurses need education on how Alzheimer’s and other diseases work so they can understand and assist the patients. Wages of nurses in nursing homes needs to be GREATLY improved. They are doing the work families can no longer do so they need to be encouraged to stay in nursing homes where there is a great need for them. There should be a set minimum ratio of nurses and patients set by the Government – not just decided by nursing home owners as private owners will set the minimum they can because of the profit line of their establishment.
Timely diagnosis absolutely! Being able to have an advocate if hospitalized
anything to reduce the incidence and improve the care available would be welcome
All of the above points. Urgent attention is especially needed to change the way people with dementia are cared for in Acute Hospital care. It is horrifying!
Timely diagnosis would be good, as long as it is accompanied by sensitive and supportive counselling that life is not over for the person with dementia. Support for people with dementia in acute care is also important, and it seems that education of hospital staff is the answer. We need to value the family carers, and Alzheimer's Australia really honours that concept, but more public awareness is needed. I would venture to say that at each stage of life, we care for each other. Whether it is parents raising children, spouses sharing the workload during middle age, or someone caring for an older relative or friend. Likewise with professional carers, they need to be both fiscally rewarded for their genuine service to people living with dementia and respected for their ability to provide care for people with complex needs. Thank you for the opportunity to provide input.
Yes a better process for early diagnosis. Better training for GPs and the way in which the ACAS process works.
All of the above.
Dementia research is grossly underfunded compared to other diseases even through the burden is very high and expected to become the most significant.
More information in hospitals to carers on why my husband is being taken off some medications and onto others instead of treating me as though the only one that needs to know that is the specialist. Why do GPs treat dementia as a taboo subject? Surely it is a disease that needs to be fully diagnosed, fully addressed and discussed with carer and/or patient, and a pathway laid out on possible treatments - not to mention the need for things like Power of Attorney, Advanced Care Directives etc. which I had to find out for myself.
All of the above....timely and supported diagnosis, better care in hospitals for people with dementia, dementia friendly environments in both acute and primary care.
Yes 1-Training of hospital emergency staff when a person with dementia is presented 2-Education/awareness of the general public about dementia 3-Where there is an evidence base push preventative programs.
All of the above.
Delirium, depression, dementia.
All of these as again they are all interlinked and part of the continuum of experience with many dementia patients.
Care in the home.
Yes proper diagnosis and medication trial if possible. Dementia risk reductions. Fall preventions.
Timely diagnosis would be helped if all people over a certain age (65 years?) were given Alzheimer's pre-screening through a short memory assessment tool organised, or administered, by their GP. Over 65's are given free flu and pneumonia injections, so why not memory assessments? Almost all of us over 65 are aware of some word-finding or memory difficulties, so why not take advantage of this to encourage awareness and preventative health care? If time is an issue for GP's why not get psychologists to do the tests under the Enhance Primary Care program (or something similar)?
Plans for care for people with advancing dementia which specifically limits their placement in mainstream acute care health facilities. Adequate palliative services for people with advancing dementia. A better system of assessing people with advancing dementia within their own environment, rather than moving them to another facility. Provision of appropriately-trained nursing staff (not patient care attendants) in dementia facilities - a professional recognition of the importance of this work and efforts in the community to publicise the great work these nursing staff do in maintaining quality of life for people with dementia and their families. It would be great to see more qualitative research examining the experience of people suffering dementia and their carers and families.....with a view to improving care for these people and support for their carers.Top of page
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