Consumer Engagement in the Aged Care Reform Process

Responses to Online Survey

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CALD responses from Survey Monkey:

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

• Person-centred care - staff who are TRAINED in dementia care, better staff ratios in High Care, in facilities with a concentration of people from a specific cultural background, some staff who also speak that language.
• More of a group home setting than a larger institution, so that there will be more one - one care. More places for people with dementia. More Readily available support for families, esp. those whose cultures are used to having their dementia affected family member at home.
• Truth in advertising. Glossy brochures with information on services available often fail to state that there can be long waiting lists - consequently this means that these services are NOT available when needed.
• Reforms that will enable them to live as long as possible in their own homes or with family carer if possible. Increased respite care for the Carer.
• Being treated with dignity
• People want to stay in their own homes or to live in home like environments. Investment needs to be made in these areas. Also early diagnosis and link to services
• Community education for people from non-English speaking backgrounds. Culturally responsive support services.

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

• Lack of commitment of some staff + those who are simply "skimming the surface" in their work instead of being committed to the residents. The control & power play of those in senior management/administration roles, who at times feel threatened when “challenged" with any queries and who will also make it difficult for dedicated and committed staff to stay in a particular workplace.
• There is not enough government funding and placements for people with dementia. No proper training and encouragement for those that work with dementia persons. No or little after service care, and too much red tape in getting dementia people into places. More priority should be given to those who suffer more rather than the onset of dementia.
• Long waiting lists.
• Depending on where one lives, I find living in a city one has better access to care services than in a regional or rural area, where there is a lack of services.
• Knowing what services are available and actually using them without feeling you are not living up to your responsibilities.
• Services that are people focused. People need choice, but not to be overwhelmed with having to administer their care
• Lack of culturally relevant activities and services. Lack of use of interpreters. Social isolation caused by lack of contact with people who speak the same language. Ethnic aged care volunteer services such as ethno-specific Friendly Visiting Programs not received well in residential care facilities

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

• I continually need to resource the information myself & become informed in order to feel sufficiently equipped for any new transitions.
• Yes - there seems to be too many chiefs syndromes, and too many different/ conflicting answers from far too many people who are supposed to be in charge.
• We need ONE information station via which we can access all other available services. First good point of reference is the Carers Association; this needs to be regularly advertised (local papers e.g.). Try to avoid 'overlapping' of services occurs - this is confusing.
• People now are shoved from one service provider to another to access care services. Service users who are not happy with service are reluctant to complain as they fear that they will lose the service which they currently have.
• No the info is there. Knowing where to look is probably the big problem.
• I have high concerns about ACAT assessment waiting periods. They are basically the gate keepers to packaged care and residential care. The fact that in hospital assessments have stopped takes away the option for someone to be cared for in their home while still being supported by appropriate services, the option then narrows down to residential admission or no support in the home. Also, there seems to be great deals in assessments by ACAT.
• Misdiagnosis at assessment due to insufficient use of culturally competent dementia assessment tools such as RUDAs especially by GPs creating lack of trust in the aged care and dementia support system by CALD background people living with dementia

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

• Previously Respite Care Residential Care Services
• Respite Care, especially from those people with dementia who are still at home. Also, after hours and more overnight/week-end care.
• Services needed are many and vary according to health of person with dementia, what stage of dementia has been reached, health of the carer (most often that is steadily decreasing).
• In the beginning home care is useful for the carer, but when dementia is well advanced it would be getting be residential care and respite care so the carer is not so stressed out.
• Home care is good at early stages. Respite care is absolutely essential, but I didn't take it enough because my mother (the dementia patient) didn't like it.
• There is a great need for flexible respite. Services that suit clients and carers, not just providers.
• same-language, same-culture social support and respite, culturally relevant activities in residential care great understanding by staff of traumatic pre-migration experiences leading to behaviours of concern when dementia sets in.
• What types of support and services do you need to assist you in your role as a carer?
• More communication and for this to be undertaken with honesty. Activities for residents (as per compliance) to suit their stage of dementia.
• A better balance of those dementia people with other forms of disability and ageing. More support from all the government bodies - not just each fobbing off excuses and blaming the others.
• In-home help - to give carer some 'time-out'. Carer needs time to attend seminars, or information sessions to assist with giving care 24/7. Sometimes carer needs transport to be able to attend educational sessions. Carer needs to attend to their own medical appointments. Assistance is needed with home cleaning and gardening. Overnight assistance may be needed when person with dementia reaches end-of-life stage; help with home-nursing can become a necessity.
• House cleaning and maintenance, minor modifications to the family home to make it more wheelchair friendly, social support, transport, counselling services.
• Same-language, same-culture social support and respite. Translated information about aged care and dementia support.

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)

• Education of GP's and Division 1 staff that are usually "not on the floor" and involved in direct care of residents. Dementia Research.
• Yes, all of the aforementioned.
• Yes. All of those mentioned.
• Early diagnosis, dementia awareness and education, preventative education with community groups and families.
• I think, just from watching Mum deteriorate, that I do not want to go through that. So I am all for dementia risk reduction and education on what to do to minimise the risk as far as possible. To do this more research is definitely needed.
• Training and education for hospital staff. The treatment of the elderly by both medical and nursing staff can at times be appalling.
• Better and more widespread use of RUDAS and culturally competent assessment tools e.g. RUDAS. Better use of interpreters in hospitals. Culturally relevant community education for CALD communities for dementia risk reduction. More CALD inclusive dementia research. Top of page

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