Consumer Engagement in the Aged Care Reform Process

Responses to Online Survey

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

• More support in the home financially, extra access to professional carers and resources, less paperwork.
• Security, empathy and socialisation.
• Person centred care; more funding so that staff can be educated and have time not just for tasks but for social engagement, activity etc. People with dementia, in my view, would prefer to stay at home for longer but this causes significant burden for carers. Aged Care services must provide more in home support and respite. This is particularly important for the younger-onset group.
• Ongoing care and support in a safe environment and by people who understand what dementia care is about and what is necessary for the best outcomes for the person with dementia.
• Safety, dignity and dependability. To have around them whom they have chosen.
• Culturally appropriate care for GLBTI older people
• More training in the area of diversity whether that be GLBTI or for persons with younger onset dementia, cultural sensitivity training. Overall client need specificity training.

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

• Not enough support packages available for each community. Not enough home support available unless you are financially able to personally pay for extra services. Overworked care staff due to shortage of trained aged care workers whose wages are a pittance for the work and responsibility they undertake. MORE TRAINED AGED CARE WORKERS ARE DESPERATELY NEEDED as most of the staff I have encountered are women of an age close to retirement age and they don't see too many younger people coming up behind them to fill positions they will leave in the not too distant future. Residential services seem to have the same problem of staff shortages and lower wages than other nurses not doing aged care. Not enough funding for activities especially in high care. Not enough if any support for relatives who are transitioning putting their loved ones into permanent care. Not enough consultation with family of care recipients as to how a facility is or could be designed or working from their perspective. The cost of residential care for someone who has financially provided for themselves and their partner/family is so high that someone who has younger onset dementia requires a large financial commitment leaving the surviving partner/family to struggle financially.
• Skill of the staff, range of activities available and stimuli, access to family and friends.
• ACAT is very difficult to access before the time of crisis. There must be a better way to streamline that service so that support is available when needed.
• Lack of training of people involved in care who have no understanding of the needs of gay, lesbian, transgender, HIV people, who are possibly homophobic, who will behave in ways inappropriate to the care of people with somewhat different needs from people who are considered heterosexual as the norm.
• That those services will recognise me for who I am and allow me to express myself openly. That they will support me in loving myself and those whom I choose to love. That they will support all my friends who care for me, making their life easier as is needed. Services need to be responsive to local conditions but the idea that "local" follows State boundaries is ludicrous. Local may be geographically or culturally defined. As a gay man I need services that understand me being gay and with whom I can feel safe and with whom I can have some chance of understanding their reactions to me. If we cannot express our deepest feelings openly, honestly, without shame or fear, in our old age, then we are a failed society and there is no care, just service.
• That the industry will be homophobic and not understanding of my needs as an older gay man.
• The scarcity of appropriate services in rural and non city areas. In particular non institutional care and staff training to particular well being issues to clients.

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

• I have found that some carers in my support group have not been aware of some services that are available. I have found that due to the privacy act, concerns for my partner’s health were not being acknowledged or were unable to be discussed by health professionals, thus making a diagnosis a very delayed process. This is a very common situation for family carers. Once my partner entered the system I would have thought that medical professionals and care facilities would be consulting with each other but this is not so. I would support a central computer file which could be accessed with appropriate permission for medical reasons. The amount of paperwork that carers have to deal with is complicated, stressful and emotionally draining.
• Yes - is it a formalised referral process?
• There are a number of excellent services, but so many different numbers! Services such as Dementia Link Workers are very helpful for pulling all of this information together. Perhaps a 'one number' system might be useful.
• My concerns are about the lack of training of people doing care in environments which are difficult enough without having dementia as an added component, and with having no idea of how to handle groups of people in categories about which they know nothing and in many cases, haven't even heard of.
• The aged care system is complex and in some ways mysterious. None of us take easily to talking about and planning for things that may be required as we age. The issue is bigger than aged care and services; it is about on-going conversations, public conversations and private conversations. There need to be positive role models and champions making ageing and caring more about people and normality than it is about health and care. Accessing information needs to be in a culturally safe environment where the risks of self-exposure are less than the immediate benefits. For gay people, dealing with others who are gay may not always be the answer but it is a great start.
• No.

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

• All of the above are essential.
• Behavioural.
• Respite is very important, and support for behavioural issues are needed for family and professional carers.
• At the moment I don't need any services, but my partner is 89 and I am 85 and we live in our own home without as yet needing care of any sort. This may change suddenly and dramatically if one of us becomes ill and we need home care or other types of care.
• I don't know the answer to that, but people should not be left alone to deal with it, whether they are the person with the behaviour, their carer or their service provider.
• Home Care.

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

• More home care. Financial advice and awareness of future cost for residential care. More information on what to expect as the illness progresses and how that progression will impact on the carer/family/friends. Suitable respite facilities and more of them made available for people with dementia.
• Strategies and skills of managing difficult and challenging behaviours.
• Education! We need time to learn about the needs of people with dementia.
• As we care for each other without external assistance at this stage, we do not know what support and services we will need, but we would like to feel that our local council had a register system of ageing people in the community who may require home care and who should actually be monitored on a regular basis. As far as we know, no Victorian council has such a data base, and this is a disgrace in a country which has an ageing population.
• Recognition that I am not the only carer and that carers like me also need support. I don't want to be a burden to them.
• Sensitive 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)

• Timely diagnoses essential. GP education about dementia, our GPs have been fantastic but admit to not knowing a lot about dementia. DEMENTIA RESEARCH ABSOLUTELY, the government needs to know this is not going away. Facilities to be designed for residents living with dementia not dying with dementia and not solely for economic reasons. Care in hospitals needs to be specialized for people with dementia to make their stay less traumatic for them, their family, hospital staff and other patients.
• Risk reduction.
• Dementia risk reduction, I believe, is a hugely important area.
• Health issues that need to be addressed in the reforms are those based on education, training and support from doctors, hospitals and local government, including mental health monitoring for dementia risk and dementia research. So far all this enquiry is doing is putting dollar values on health care for the ageing community without regard to the personal issues of each individual and/or family.
• I guess all of these but there must seriously be more research into the affects of positive experiences on people with dementia and on the ways in which this can be used to the benefit of those with dementia and for their carers, whether they are non-professionals or professionals.
• Timely diagnosis definitely but probably equally as important is the need for a higher profile in regards to aged care in general, as well as, in particular the diversity with respect to needs of the aged population and those people who may be afflicted with issues generally associated with the aged but who may not be physically or mentally aged. Top of page

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