Consumer Engagement in the Aged Care Reform Process

Responses to Q&A sheets

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Responses by city

Canberra
Sydney
Brisbane
Adelaide
Melbourne
Hobart
Darwin
Perth

Canberra

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

• Recognition that their mix of life-threatening diseases need to be treated holistically, as one illness reinforces the malaise of another (e.g. diabetes and dementia). Referral to specialists will not suffice.
• A stronger voice
• A skilled workforce
• More consistent care options in CAPS packages, need continuity of carers
• More flexible respite to help partner keep people at home is needed
• Simple assessment
• Ongoing support
• Funding to maintain a better standard of furniture and cleaning in nursing homes
• Loss of control of peoples’ property
• Needs a better system to ensure privacy and dignity
• Consumer directed care
• Option to stay at home with EACH D package
• Opportunity to use services across the board (more than one service provider)
• Consistency
• Responsive to need
• Quality care
• Easier access to services. Better transparency of the system. Staff who are better able to deliver the services in the home and consistency of that service.
• Being able to stay at home longer or until they die

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

• Lack of training for staff and access to professionals
• Little coordination of services – government and NGO.
• Once in care all the outside activities offered by CAPS and EACH (D) drop off. Need a crossover of services, and more activities in residential care.
• Assessment is too complicated
• Lack of information before the event
• Little option to try alternate services
• Lack of high care – dementia specific beds
• People need to be able to access services when they need them. Current wait list, service availability prevents this. Services for aged and those with disability are too complex for most charts and carers. The idea of a main ‘gateway’ is good but it needs to be provided/staffed by very skilled clinical people. My concern is that this ‘gateway’ will just be another service which refers and provides info but no service, and will not be staffed by the right people.
• The length of time it takes from diagnosis to implementation of a service or help and the frustration and tangle of red tape to get the help.

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

• Need for plain English explanations on forms.
• Diagnosis is problematic – sent off on side issues, and when diagnosis is made you’re just sent home without knowing what to do next.
• ACAT is too crude: there is intermediate level between high and low and the assessment does not go into enough of the more subtle behavioural issues.
• Assessment by relatives needs to be considered as part of initial signs of dementia
• Lack of information to potential clients in regards to what services are available
• People currently receive different information from different services, i.e. some GPs provide info, some provide nil. People are given inaccurate information. Time needs to be taken by people providing advice and information to ensure that their information is accurate.

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

• Home and respite care
• Need more places for short term respite (including overnight, such as The Cottage (Carers ACT)
• Designers of some residential care facilities should consult experts in dementia. E.g. Space to pace, shady outside areas, small groupings.
• Services for those with behavioural issues
• Services should be flexible and many current services are flexible, but there are always gaps. Needs to be capacity within system to fill in these gaps.
• Respite or day care services for EACH/EACH-D packages. Service providers aren’t able to supply the trained staff to be able to do this so these clients need a place to go for a few hours or overnight.
• Better trained staff within acute care settings around behaviours.

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

• Access to health professionals
• Access to up-to-date information on all aspects of dementia care
• A case manager would be good – someone who keeps tabs on all services available/accessed, and who knows the client and carer
• Better training for staff in acute care setting
• Day care/Day respite service for community clients. There needs to be more available especially for high care clients as they miss out. Indigenous support is very rare and no places available for indigenous clients that suit their particular needs.

Are there health issues that need to be addressed in the reforms?

• More employed in age related conditions that need early diagnosis – complex chronic conditions, co-morbidities and population level approach
• There is no ‘in between’ health advice about dementia and what to expect – i.e. between the GP and the geriatrician – I need someone else to advise me on what I observe, and give ongoing comments on how my partner is going.
• Health of carer – particularly depression
• Clearer diagnostic/assessment of dementia pathway
• Specific training around dementia and services available to people – for GPs
• Better communication between services about medical conditions and behaviours
• Better understanding of services available for clients for the GPs
• At senior education levels, public health should be part of the curriculum.

Are there any other concerns you have about dementia care or the aged care system?

• Need to engage with producers of medical equipment e.g. people living with dementia need support for using their insulin injection device. Patients cannot remember whether they delivered their injection dose.
• Dementia needs to be a permanent national level priority for the nation
• Need earlier diagnosis than present. This will need better screening tools for use by GPs
• Need for better referral
• Need more research, not only about cases of dementia but also development of diagnostic tools
• Funding models often do not really accept that the spouse is often still in the home. Taking on complex loans and/or prescriptions moving house to smaller place is hugely stressful when dealing with a partner with dementia.
• Lack of funding, lack of staff
• Currently both community and residential care is poorly staffed. Needs to be concentration on ensuring skilled, well paid staffs are looking after needs of older people
• Lack of appropriate education for staff
• Registered training organisation provide inadequate training for staff
• Wages need to be reflective of the job that carers do
• Training concerning behaviours/activities to counteract behaviours Top of page

Sydney

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

• Real ‘person centred care’ – not just rhetoric
• Early diagnosis and support for cognitive impairment
• Intervention. A ‘buddy’ to see them through the life stages
• More funding
• More information
• Streamlined service provision

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

• Inappropriate staffing – underpaid and underqualified
• Lack of understanding of dementia and mismanagement of behaviours. Too quick to use drug intervention, not other therapies
• Education to carers, support for client and carer
• Lack of information available in the community. In particular reluctance or ignorance on behalf of service providers to give information to families.
• Not enough beds or help
• Guardianship needs to be looked in to
• Physical layout/security suitable for very physically active people with YOD with challenging behaviours/wandering issues

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

• Difficult to navigate your way through the system – need central resource point
• Receive conflicting advice from different sources
• Awareness
• Choice
• Support for isolated clients and depressed clients
• Access point – GPs to direct/white pages/Google
• Centrelink – re-train/awareness with YOD
• Information is sparse, people need to have someone who can physically do the referral for them rather than expecting the family to do the ‘leg-work’. Also encouragement to people to access services early rather than waiting for a crisis.
• Awareness of community services – currently in centre based day care centres are not at full capacity, but carers are unaware of services. By the time they access the service, they are on a waiting list for a nursing home.
• Awareness/promotion needed in the community
• “Gateway” proposal – will it be face to face assessment or phone assessment? Assessing persons with dementia over the phone is an absurd idea

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

• DBMAS
• Non-pharma alternatives
• Debriefing and counselling
• People with YOD need age appropriate services that meet their need for physical activity and community engagement

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

• Case management/support – navigating my way through on my own
• Support for working carers and younger carers
• Informal support
• Someone to advocate, to assist in the navigation of the service system.
• Consistent service – e.g. bathing – ensures that the same person attends each time
• Services that can be opened for longer hours.

Are there health issues that need to be addressed in the reforms?

• Depression
• Grief
• Generational gap
• Diagnoses acceptance
• Enabling client to accept diagnosis and receive help/support
• Education of workers in residential/respite services. Minimum standard of cert III is not enough. Also, information and education for workers on YOD and their needs in the care system.
• Attitude of neurologists when diagnosing dementia in younger people – they offer little support, no referrals to care services etc.

Are there any other concerns you have about dementia care or the aged care system?

• Accommodation bonds and interest: difficulty selling the house, and losing money
• Services to be flexible –especially in facilities
• Education and debriefing for care staff
• YOD-specific services
• Continued thought that ‘aged care’ providers are the best suited to provide care to younger people – people with YOD do not want to be part of the aged care system
• Many carers hurt themselves, especially their backs, in their role and usually not offered manual handling training specific to their needs
• Many residents with dementia in RACFs are given questionable ‘pain management’ to get the ACFI ‘points’ – system needs cleaning up
• Ensuring that people with YOD are accommodated within the care system. These people can’t sell the house, can’t access superannuation, and can’t leave work. They need to be respected, provided for and not made to justify their needs for service. Recognition of the impact of dementia on children and young people who have a parent with YOD.Top of page

Brisbane

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

• Further funding for research
• Dementia friendly services throughout society e.g. banks, shops
• Increase HACC services to slow any move to nursing homes
• Hospitals need to be dementia friendly. Delirium is common post surgery yet medical specialists and nurses do not know how to manage the situation, therefore there is a need for bench top and clinical research and training.
• Need for dedicated ward and appropriately trained registered nurses.
• Improved training of GPs, nurses and other health/aged care workers.

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

• Staff to patient ratios
• Lack of information available. The information is there but it is hard to find.
• Community care is inappropriate for people who live alone. Packages only work where a partner supports the person.
• Access to exercise/mobile programs for clients

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

• (No comments)

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

• Respite care in aged care facilities. It is impossible to access these at present
• Timely aged care assessments

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

• More training for support and in home care

Are there health issues that need to be addressed in the reforms?

• Need for more geriatricians who visit aged care facilities – to train/advise the GPs who don’t seem to understand people with dementia. This could be done via telemedicine if necessary.
• Nurse practitioners are urgently needed in aged care facilities
• More information from GPs after initial diagnosis

Are there any other concerns you have about dementia care or the aged care system?

• Dementia initiative scrapped by government
• Staff in aged care sector have poor understanding of dementia
• GPs need training on assessment and management
• What about implementing a work for the dole in aged care scheme? Top of page

Adelaide

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

• Meaningful care with affection
• Flexibility, consumer directed care packages
• Cottage style respite (short term overnight stays)
• Facilities to encourage mobility
• Acknowledgement of status as a person of value.
• Knowledge that carers are being taken care of
• A clearer, simpler system
• Correct information from Centrelink.
• Training for carers in handling residents, especially in personal care.
• Aboriginal and Torres Strait Islander: to be on homelands, to have an aged care home in the community, to train the community as workers

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

• The need for flexible, individualised support and services
• Availability and entitlement
• Support for family carers – carer payment should be equal to minimum wage
• Access to services is too complex
• Case workers
• The huge difference between day care and residential care in terms of activity and intellectual stimulation
• Dementia residents are ‘locked in’ unless relatives take them out
• No aged care home available for Aboriginal and Torres Strait Islander community member to stay in away from land/family and community

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

• Better information
• Concern about ‘gateway’ idea – people may still end up on wait lists they know nothing about
• Everything including assessments done over the phone – not face to face
• Need to ensure assessors explore all areas of concern and are able to refer to any organisation/service for support, not just ACAT, CACPs, EACH but all lower level programs too – including carer respite programs
• Difficulty of finding services – high care respite almost impossible to find, booked out or unable to book in advance
• ACAT assessment understaffed
• Difficult to receive an assessment
• Should respite be moved out of residential care?
• Aboriginal and Torres Strait Islander: have the age limit changed for communities and packages
• Cottage respite works on a wellness model

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

• Emergency residential respite services – often people with dementia end up in hospital setting if there’s no room in respite services
• Short-term respite, especially weekends
• Cottage style respite
• Day centres with meaningful activities
• Dementia units in residential care that are not prisons
• Regular staff – you rarely see the same carer’s faces twice.
• Doctors who do not prescribe antipsychotics to stop residents from ‘wandering around’
• Family members should be welcomed and involved in residential care – some centres think they own residents
• To keep client at home with a decent care package and care available

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

• Transport
• Carers want appropriate respite options that mean their loved ones are involved in meaningful occupation/activity
• Home maintenance
• Available respite
• Health services, First aid training
• Consistent day care – often day centres can only offer 2 days, and people with dementia get confused going to multiple centres.

Are there health issues that need to be addressed in the reforms?

• An annual health assessment
• Carers’ health
• Respite is vital
• Residents are being drugged unnecessarily, leading to falls, dizziness, and a broken hip leading to hospitalization
• Lack of EN/RN
• Lack of training for staff, especially migrants coming into aged care homes and hospitals

Are there any other concerns you have about dementia care or the aged care system?

• At aged 87 years – relinquished role as carer. A one-two week respite stay would be great for those living in their own homes
• Have meals prepared and company
• Education for communities to support a person to stay at home
• The baby boomers will soon retire with minimum superannuation, and will need aged care
• Perhaps the National Disability Scheme should include a levy for aged care
• Really concerned about the impact of changing governments, impact of inconsistent, often short-term approach. Investment in DTSC – training for health professionals should not be limited to several years, as service needs to build identity and reputation with health professionals and workers
• The cost e.g. Demands for $300,000-$400,000 deposit making a massive hole in carer’s superfunds. Self funded retirees or partners still working can pay up to $52,000 per year from their super fund while those who haven’t saved pay less than a pension i.e. there is no incentive to work and save.
• Drugs can be very expensive and not on PBS
• Not enough workers in Aboriginal and Torres Strait Islander communities
• Respite is a big issue in all communitiesTop of page

Melbourne

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

• Reform not just aged care – needs to include younger people under 65
• More reliable criteria for ‘dementia specific units’ – not just a locked door, but dementia trained staff, activities, interaction etc.
• Better understanding by health services – e.g. hospitals (especially private)
• Need better care to support those with dementia in their homes for as long as possible
• House maintenance
• Whatever it takes to enable them to have the best life possible in their older years
• Dementia specific nursing homes
• Funding for nursing homes – treat as an insurance problem with a levy on super contributions. Will need to be supported by taxpayer funds until the Aged Care Insurance fund increases its capacity.
• A voice
• Dignity and respect
• To stay in their own home (safe and familiar) for as long as possible.
• Acknowledgement by healthcare system of people suffering from Alzheimer’s disease and dementia
• Choice rather than being dictated to by the government/health care system
• Removing the stigma associated with dementia
• Steps to ensure that “care” really is what it means
• Acknowledgement of the varying needs of people of different multicultural backgrounds

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

• Limited access to respite in remote/rural areas
• Community care staff not dementia care trained
• Unless you are on Centrelink you are not covered
• Self-funded retirees need help
• Takes too long to get ACAS team and then EACH-D package
• Packages should be more flexible and person centred
• A lot of staff in residences come from overseas and have limited training in English. No matter how well intentioned they do not understand the care needed especially with associated behaviour concerns.
• Sedation is not an appropriate solution to behaviour problems
• The withdrawal of outreach workers from CADM clinics.
• Need for an enquiry into the non-transparent and farcical sums of money demanded by some nursing homes
• Getting access to information when needed e.g. how do people with language and literacy issues access the information they need?
• Quality of care
• Limited availability of government support – particularly daily respite centres
• The unpredictability of who is entitled to what. Everyone should have the same rights and access to services.
• Lack of quality care
• Insensitivity to different cultural attitudes/ beliefs

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

• Limited in rural/remote areas – too far from education services
• Many rural GPs are foreign trained so problems in communication, understanding of dementia
• Long waiting times to get diagnosis
• Will re-assessments include ongoing assessments of carer’s needs and capacity to manage?
• Takes too long
• Need more support to keep patients home longer
• Respite for dementia sufferer and career needs more time allocation, accessibility and support
• Don’t want an intrusive assessment process or one that keeps people from getting access to the help they need
• A means test could be counterproductive
• Don’t need a comprehensive assessment – a doctor’s certificate and healthcare card should be sufficient
• Facilities for younger people with dementia
• Adequate staff ratios
• Training of staff
• Special needs
• Local councils are not equipped to handle enquiries
• Assessment for access to care services can be time consuming and exhausting due to its complexity
• Information can be difficult to access
• Information needs to be interpreted & in some cases, simplified

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

• Option of 9 weeks/year respite to be provided in the person’s home or in a small home style setting
• Aged care facilities for respite are not appropriate for a person with dementia who wants to live and die at home
• Training of staff dealing with patients needs
• Dignity and respect when dealing with people
• Behavioural issues not to be treated just by sedating
• Adequate education of staff
• Respite, especially in the home
• Would like an overnight service from 7pm-7.30am to clean, feed, occupy the person with dementia
• Home care help - Gardening, handyman
• Residential care (24 hrs)
• Home care is preferred when the alternative is to send someone into residential care
• Behaviour management ( without medication)
• Community services e.g. social groups (locally)

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

• Recognition of the carers’ specific medical etc needs
• Respite when needed at reasonable cost
• Quality residential care at reasonable cost
• Palliative care in the home
• Greater access to daily respite centres
• Annual training updates
• Career needs to have their needs assessed as well as the sufferer.
• Training in what is available/entitlements
• Education on management, dementia, services and how to access them
• Education
• Support and respect from all professionals in the health care system
• Doctors to use interpreters where possible

Are there health issues that need to be addressed in the reforms?

• Palliative care for dementia sufferers – ‘end of life care’ and support with dignity is essential. Following directives of patients’ own wishes.
• The bond (?) system in low care residences is horrendous
• Users need to know what is available (e.g. there is a mobile dental service but it isn’t widely known)
• Listen to carers about medical treatment
• Need information on ways carers can acquire and improve their caring skills
• Adequate funding for medical research on dementia to stop the disease from progressing and help prevent it occurring.
• Everyday health issues – teeth, hearing and incontinence.
• Greater availability of daily respite centres would be of significant benefit to the health of carers
• Over prescribing medication
• Illnesses/health issues due to poor care
• Review of current diagnostic tools

Are there any other concerns you have about dementia care or the aged care system?

• Greediness of service providers in their use of the EACH packages to empire build.
• Younger onset dementia requires more respite specific for younger people
• Will there be sufficient capacity?
• Consumer choice should motivate service providers to do better.
• The salaries of staff who work in nursing homes require a review; for the work they perform their salaries should align more closely to registered nurses
• Mark Butler stated that the average stay in residential care is about 1.3 years? This would be because: the family has removed their loved one due to compromised care or the resident has passed away. Both reasons are a real reflection of what is wrong with the system.
• Inequity- people of CALD backgrounds have a harder time accessing all the appropriate information & servicesTop of page

Hobart

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

• More access for people living in rural areas, e.g. at present people cannot access packages like EACH unless they travel
• More secure and purpose-built dementia facilities
• Better informed medical practitioners
• Support services to remain effective, active and informative
• Flexibility of choosing their own carers and allied services, similar to the consumer directed package
• To be heard, every carer’s forum I have been to is swamped by approved providers, union reps and employees in aged care, they all have their own agendas
• A stronger emphasis on psycho- social activities that keep them connected to the community
• For all aged care staff from cleaners to Directors of Nursing and CEO’s to be properly trained on how to deal with people with dementia
• For all dementia education providers to be properly qualified i.e. to have the experience and capability to deliver the course content
• For all nursing homes to have more staff qualified to be willing respond to calls for assistance. Due to staff pressures, the waiting times are far too long.
• For aged care accreditation to be more than the current "tick the box" exercise. There should be the option for residents and their representatives to be able to directly contact the ACAT team to arrange off-site appointments.
• For the accommodation rules to be changed to allow couples to both enter aged care when one needs to enter aged care

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

• Appropriate residential care for YOD
• After giving your loved one 24 hour care you realise that depth of care is not available in a residential care facility
• ACAT assessments more accurate and realistic
• Duplication and complex means of access to services
• Service providers making decisions to place clients in aged care facilities and withdrawing packages without consultation with the client or carer
• Service providers being very judgemental, each person is unique with different circumstances
• Safety issues in community care- adequate training required
• Access to a reasonable amount of the package (70%-80%) currently on CDC and access it is about 48%
• Getting information about the overall system
• The unmet need of overnight respite care

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

• People in the community who have advanced stages of dementia, do not have access to community services which results in carers coping with reduced respite
• More information on services that are currently available
• A telephone number in times of crisis
• General public are not aware of support systems for carers
• GPs not always aware of who or how to access services
• Expectations placed on aged care facilities are unrealistic
• Duplication-One focal point of access is needed both in print and on internet
• Provide policies, guidelines and what to expect from the care services
• Focus more around the individual care plan
• One assessment please, for packages, respite, day centres etc.
• Providers need to track our records
• More involvement for the person with dementia in ACAT services
• ACAT teams need to involve relatives when undertaking assessments, particularly when the person being assessed has dementia
• The refusal of GPs to do anything about the early diagnosis of dementia of their clients

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

• Medical services accessible 24 hours a day
• Allocated aged care services in the acute care setting
• Funding must reflect 24 hour care provision and not the current 2-3 hour care through community packages
• Hope care – assistance with gardening
• Respite care – day and holidays
• Medical advice when needed
• More in home respite. This will reduce anxiety for clients.
• Involve them in discussions with what they would like to enable them to remain at home
• Provide family with sensitive information like palliative care
• In home respite for my two care recipients
• Residential respite which is suitable for people with psychosis, delusions and complex physical needs
• Afternoon day centre support as this is the most difficult part of the day, at the moment services are only available between 10am and 1pm

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

• To support people to stay at home support for services in required
• More staff, funding and education
• Supportive case manager
• Family support group
• Offers of medical support
• More respite beds for married couples in southern Tasmania
• More support from services providers and allied health. I.e. education, assist with updating care plans, IT support for carers that are housebound (paying bills on line etc.)
• When injured in home there should be in home respite
• Overnight respite once or twice a month
• Trade residential respite for home respite
• Staff that meet my needs, at the moment they don’t turn up and they are unskilled or affected by substances

Are there health issues that need to be addressed in the reforms?

• A wellbeing issue and an aspect of managing behaviour: providing caring touch (a gentle massage) for people living with dementia, this could also assist carers with respite.
• More GPs who will visit nursing homes and be available on weekends and public holidays
• GP access for residential aged care facilities
• Recognition and education of dementia for everyone start by educating the youth in school
• Put nursing education back into the hospital system, much more prac time needed in acute, aged care, mental health and palliative care
• Community education on the early signs of dementia
• Prejudice issues
• GPs educated to assist in early diagnosis
• Non- bullying from state government departments – i.e. guardianship board
• Access to appropriately skilled GPs
• Access to skilled mental health professionals
• Restorative care
• Skilled palliative care workers
• Therapeutic activities versus care workers sitting and reading magazines

Are there any other concerns you have about dementia care or the aged care system?

• The person diagnosed should be part of designing a long term care plan whilst they are still able
• Real consideration to be made in relation to specialised funding for people with dementia
• Increased research into cause and treatment of dementia, particularly neuronal placidity
• The maintenance of dignity
• The exploitation that can occur financially
• More focus on aged care plans – develop electronic care plan which includes specific like and dislikes. Allow all allied health professionals to access it.
• Cultural diversity to be included in social settings
• As a person’s condition deteriorates their support and access to community care diminishes
• Services are designed to try and force residential care on consumers who wish to remain in the community
• People with dementia admitted to hospital for medical or surgical procedures are not well treated. The use of chemical restraints is widespread.
• Dealing with people who have dementia is made more difficult due to the lack of a comprehensive health record.Top of page

Darwin

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

• Not to be discriminated against
• Feel safe
• Have respect and dignity
• To live a life they know
• Familiar surroundings that are homely
• Welcoming environment
• Entitlement to feel safe
• Appropriate and adequate level of care and understanding
• To be able to remain living at home for as long as possible
• Early diagnosis
• A case manager to guide you through the system and journey
• Access to information and knowledge of where to go to get the information
• Recognition of dementia as a disease with increased needs, not normal aged care
• Provision of around the clock care, available outside of standard work hours.
• Individualised care

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

• Culturally appropriate
• Home like environment
• Language barriers between residents and carers
• Getting someone to give the right medications and to notice the side effects
• Getting appropriately trained staff
• Not enough staff for the number of residents
• Conflicting information
• Lack of resources – insufficient staff to appropriately care for dementia residents
• More specific and diverse care facilities with appropriately trained staff

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

• The general community need to be more educated.
• Information needs to be more accessible and easily accessed.
• The ACAT service in Darwin is good, friendly and full of information.
• Need a case manager to help with accessing the correct information.
• Lack of services in remote areas.
• Need more comprehensive assessment to ensure timely recognition by doctors.
• More current information on the latest breakthrough research available.

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

• More opportunity for support services and counselling
• More couple accommodation
• Renewal of certificate (staff to re-do training over a period of time)
• More funding for dementia specific in-home care – we need at least double the amount that the EACH and EACHD package provide
• Increased places for respite care
• All of these services are required through the various stages of dementia

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

• More culturally appropriate services
• Education more accessible
• Adequate respite
• A day therapy centre, so I can go to work and know my parents are okay during the day
• Better training
• Support from services to assist with care
• Simplified and coordinated services and information

Are there health issues that need to be addressed in the reforms?

• Timely for diagnosis
• More help should be available to assist with dementia and elderly people taking the correct medication at the correct time, this could prevent hospitalisation
• Recognising dementia as a chronic disease
• Health of carer’s
• More support for carers – having a transient population means that family is not always nearby to help
• Increased funding for research and specific care requirements of people with dementia

Are there any other concerns you have about dementia care or the aged care system?

• More research
• We run a high care house, which has five elderly and dementia clients sharing the home. They have carers to provide assistance and home management and they all seem very happy. I would be happy to share this model of home care with other interested parties
• Support to recruit and retain staff
• Funding systems that are realistic
• Not enough training for staff
• Not enough compassion from staff
• Pay needs to increase in aged care to retain the good staff
• Need for centralised, consist and familiar contact (case manager) for a person with dementia and their familyTop of page

Perth

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

• Access to information about quality of care and costs to the family
• Early diagnosis of dementia
• GPs that have interests in and ability to address the needs of people with dementia.
• Security of funding for service providers
• Access to future planning
• The provision of sufficient funds, by the federal government, to allow the continuation of successful programs which are managed by recognised organisation like Alzheimer’s Australia
• The allocation of funds must budget for the increased number of people in Australia who will get dementia
• Accommodation rating system
• More connections so I can make friends with similar problems
• More care in the community
• Be able to access information in an easily accessible, comprehensible format relevant to their level of the disease and relevant to the level of receptiveness/readiness for the information
• Knowledge that services are quality and affordable

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

• Uniformity of level of qualification. Certificate three, for example, having specific level of personal care
• Access is too complicated
• Short term contracts for funding of community care e.g. we received excellent services and had a good relationship with the organisation, but it did not have its services refunded
• By following the advice from Alzheimer’s Australia we have no concerns.
• We use the recommended facility South Care
• I need to know the costs, availability and types of residential care.
• Families need help to find the correct services
• Seeing the right people, and being able to change if you want to see a different person
• The non-streamlined approach – having to tell and re-tell history to everybody who requires information each time a different service is provided
• Poor quality and low knowledge of care staff regarding dementia

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

• While Alzheimer’s Australia provides good information, I feel their services should be broadened into one central website and centre through which all information is accessed. A gateway which leads to all paths that may be required
• Waiting times
• Labyrinth of detail and information
• Lack of knowledge and support from GPs – they are not aware of support services such as Alzheimer’s Australia
• Funding for aged care services in state hospitals must continue
• Social workers are able to provide very good information
• It is very difficult to know what is available when faced with a diagnosis. It would be beneficial to have a “one top shop” for information e.g. Alzheimer’s Australia.
• GPs, neurologists, gerontologists need to be armed with information to hand over when providing a diagnosis

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

• I will need respite to ensure my ability to continue as a carer
• Respite care should not be in a long term care facility, so it is in a more positive and less threatening environment
• Residential care
• Home care

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

• Cay centre
• Support worker once a week
• Continuity of care across service packages
• General sympathy
• Streamlined, continuity of care with staff that have been taught to deal with patients with a high level of empathy and knowledge

Are there health issues that need to be addressed in the reforms?

• A focus is necessary on the different types of dementia i.e. younger onset dementia and semantic dementia
• Dementia and ageing to be de-stigmatised
• Services that adequately meet the needs of people with dementia
• Early onset dementia does not fit into aged care services – eligibility etc.
• Promotion of ‘self’ and protection of independence and autonomy

Are there any other concerns you have about dementia care or the aged care system?

• Gaps between packages to give consumers and their carer’s continuity of care, rather than changes which add to distress
• Meeting the needs of younger onset dementia clients
• Culturally appropriate care
• Accreditation of the carer linked to the tasks – not their experience of giving the service
• Need more than ticking boxes. There needs to be more quality, humanness and relationships.
• Yes – the training of doctors (GPs) to recognise the symptoms of dementia/Alzheimer’s to allow diagnosis and early intervention
• I am concerned that when things get worse I will not have the care needed for my husband
• The knowledge of care staff is low or not present in relation to dementia issues – a certificate three is not consistent in its content or delivery and I feel staff in a dementia specific unit should have mandatory knowledge.Top of page

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