Consumer Engagement in the Aged Care Reform Process

Responses from the Q&A sheet

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Responses by city

Merimbula
Geelong
Mandurah

Merimbula

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

• More professional carer’s
• Improved residential services – trained staff, environments that support people with dementia, buildings environment, staff interactions
• Flexible packages for support in the home
• Case management model
• Problem solving helpline
• Quality care – staff training at a certificate IV requirement
• The ability to be independent for as long as possible
• An atmosphere where they can make their own decisions as they are able The resources to keep people in their home – i.e. community care
• The availability of occupational and divisional therapy
• Contact with children, gardens and pets – simple things which give life meaning
• Services that enable people to stay at home longer
• Early assessment and diagnosis

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

• Too early to need help, but would like to think that current service may be extended
• People don’t know how to access the services
• It’s confusing, as each facility has a different way of assessing and funding requirements
• Poor levels of staffing and knowledge
• Indifference in residential care – management needs to be passionate
• Need access to ACAT assessment as early as possible. This area needs an acute care facility instead of having to transfer clients to Goulburn with acute mental problems.
• Staffing levels and pay levels in nursing homes
• Full disclosure of facts, costs and help
• More community infrastructure at the local level – foot paths, seats, covered areas, meeting places and transport
• GPs are generally not helpful and some do not recognise carers concerns, such as changes in behaviour
• Different types of care packages can be confusing

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

• The waiting time involved for assessment
• Case management model would be useful
• All GPs need more information and the ability to empathise when dementia is diagnosed. GPs are ignorant about early signs and testing.
• Concerns about use of privacy of an individual as an excuse for lack of transparency
• Glossing over crucial places of information e.g. power of attorney does not give the right to see your parent’s care plan
• Need to state facts as they are, not pretend all is rosy in the wood pile
• Nobody needs so much choice they can’t cope with the fine print, at the moment a lot of advice and explanation is provided with smoke and mirrors
• Information about facilities which provide respite care
• There are too few financial advisors and professionals that can provide information about residential care costs and income and asset assessments

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 respite that makes the person in care happy
• Home care for mid-range dementia needs
• Early stage: cooking meals, socialisation, and gardening
• Next stage: personal care, shopping support and respite with appropriate programs.
• Acute mental health facility (residential)
• Residential respite

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

• Dementia specific ongoing training
• Respite – needs to be quality
• In home support
• Better recognition of the carer role through Centrelink
• Should abolish means testing for carers
• Support for fulltime workers who are carers
• Information, education and advice
• Knowledge about community services available
• Information available from Alzheimer’s Australia is comprehensive

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

• GP education – it’s a struggle to get referral and support that is ongoing
• Early diagnosis
• I am concerned about how many urinary tract infections in women are caused by them sitting in set, soiled incontinence pads
• Vascular problems caused by no mobilisation
• The cocktail of drugs given that affect the system of 90+ year old people.
• No privacy when the doctor visits
• The volunteer program at Bega hospital is very successful, preventing infection, falls, maintaining hydration. Perhaps a similar program could be trialled in surrounding areas.

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

• Staff ratios are too low
• Availability of information for families and carers
• The unknown is an ongoing worry
• All people should have an assessment every 5 years, similarly to other health checks (cancer etc)
• Support for residential care to make that changes that will benefit people with dementia
• Need more special carers in nursing home, not just more staff in general. More funding would help keep staff
• Concerned about the extreme to which OH&S appear to be taken, at the expense of care
• The use of antipsychotics to ‘control’ anxiety. Anxiety occurs because people feel threatened or fearful. Reassurance may serve them better.
• Restricting people’s freedom by not allowing them to mobilise
• Refusal to let families comment on care plans
• Litigation should not be a basis on which decisions are made
• Meals on wheels delivered frozen are not suitable as people with dementia cannot prepare and reheat them
• Consideration of residential care that is suitable for people with challenging behaviours Top of page

Geelong

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

• A system that helps the person with dementia to stay independent and is their home for as long as possible if not indefinitely
• More support
• Services, especially to support carers and families when difficult situations arise
• Lots of love and care
• Secure in the knowledge that a place will be available when the need arises.
• More nurses and carers
• A sustainable system that doesn’t penalize other family members
• The individual with dementia has their needs met appropriately and with dignity
• Need a book with a listing of all available services – maintenance, cleaning etc.
• Early diagnosis
• Case management
• Quality carers
• Training for aged care workers
• Aid when troubled
• Help to live at home comfortably

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

• There are services available but no-one to co-ordinate what is required and by whom
• The cost of care
• The time it takes to get a package after being assessed
• It’s hard to figure out the care packages. There should be a central waiting list
• No facilities for couples in nursing homes
• Inequity between rural access to specialist services and city
• Aged Psych services don’t specialise in dementia care and won’t give a dementia diagnosis

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

• Information needs to be readily available – especially to young people and the general public
• Mother was assessed by ACAT in early 2011 but no follow-up since.
• Earlier diagnosis
• Not enough publicity
• Time to get a package after being assessed
• Cost of assessment for driver’s licence Occupational therapist should be claimable on Medicare

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 care, aged care services, gardening services, home maintenance
• Respite care for emergencies
• Carer holidays
• Day-care is really helpful
• Trained people to give home assistance and mental assistance for the patient and assistance to the carer managing difficult behaviour
• Residential care services – alarm system for people at home (to detect gas etc)

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

• Better access to carer allowance/pay to allow dementia person to stay in their own home, living by themselves with the aid of a carer
• More respite and social activities for patients
• 2 Days of day care – currently only has 1 day
• Knowledge
• An emergency back-up in case the carer becomes ill
• Advanced care planning and palliative care
• Socialisation for the elderly living alone with dementia
• Carers allowance is difficult to access
• Quicker access to EACH-D packages
• Home help – OHS rules impede usefulness of this
• Counselling
• Interesting day centre activities – music, exercise, social, ‘men’s shed’ etc.
• Support to encourage patients to accept and utilize respite services Top of page

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

• Transport and support for when licences are taken away
• More opportunities to keep physically fit
• Cash support
• The health of personal carers
• Timely diagnosis – earlier assistance
• Keep people in their homes longer
• Physio to keep elderly agile
• More knowledge in the community, other diseases have visible signs, dementia clients are not easily recognisable
• Education of health care workers
• End of life guidelines should be uniform across Australia
• General health care education on dementia or general TV
• Regular reviews every 6 to 12 months, e.g. from a geriatrician

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

• Geriatricians to provide medical services in rural areas
• Reduce overlap of assessment – aged health service, ACAT, CDAMS.
• Dementia care in high level care nursing homes seems to take away independence and lock dementia patients in
• More training for doctors who treat dementia patients
• The cost of accommodation
• The system is too complicated
• More nurses trained to care for dementia patients
• Need more residential homes designed for dementia, with day staff to keep the patients busy
• Driving assessment is too expensive
• Need more empathy/less regimented care

Mandurah

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

• A drop in centre to carer’s free time during the day.

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

• There are no specialist consultants in geriatric medicine to provide all round care in a clinic situation and when liaising with the hospital.

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

• Too fragmented

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

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

• Caring for me as well

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

• We need more care workers in the nursing homes Top of page

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