Older people speak out: What do they want from aged care?

One of the main themes to come through strongly was that older people wish to be involved in the system’s evolution, and there are strong benefits in having older people help design the systems intended for their care. 

Older Australians want providers to take their rights and values into account, and there was also strong support for a properly-trained and well-remunerated workforce.

Members of the panel took the view that aged care services meeting the needs of older people will be good for providers, too. Providers that best cater to older people’s desires will be preferred services, and that will benefit their bottom line.

Another factor to emerge clearly was that ageing shouldn’t be something to shy away from. 

Lynda Henderson is a semi-retired workforce development consultant. She cares for and advocates on behalf of her partner who lives with a rare form of younger onset dementia. 

Lynda lives with disability herself and is the recipient of Commonwealth Home Support Program services. Lynda remains actively involved in research around disability and aged care.

Lynda hopes for a “unified, non-ageist system”, where older people receive the same benefits as those receiving NDIS support.

“I would love to be able to manage our care, our support, ourselves and not be dictated to by providers,” she said.

“I would also like to see, most importantly, more action at the local and regional level and a combination of health services with community, home care and residential services.”

Importantly, Lynda would like to see more support for carers. 

To have the option of in-home respite while the carer takes a break would be hugely beneficial, but is not possible at present.

“If we don’t get that type of support, we won’t be able to continue,” she added.

Craig Gear, convenor of the panel and Chief Executive Officer of the Older Persons Advocacy Network (OPAN), said unpaid carers are “pivotal” to the whole aged care system and are “undervalued”.

Val Fell, who is 92, is a dementia advocate and volunteer facilitator for Corrimal Dementia in the NSW Shoalhaven region. 

She has been facilitating a support group for carers of people with dementia ever since her husband, who lived with dementia, passed away in 2013. 

In the future, “I would like to see that I am able to be treated at home by a service provider that has the right people who have the right attitudes towards care, who want to work in aged care, with the right training … and somebody, because they are able to update their skills, is paid the right amount of remuneration.”

If she has diminished capacity, Val would like to have supported decision making in line with the requests she has already laid out with her family.

“I want to be left feeling as if I’m worthwhile,” Val said. “I don’t want people to think ‘we’ll put her aside, she’s past her use by date. She’s just a dementia and a very old one at that.’”

Val believes the ageism we already “suffer” in Australia will be even greater in the future unless we begin to educate children now about what it is like to grow older. She believes we should educate children about dementia.

“Children are very empathetic. If we can build that empathy towards people with dementia, right throughout their lives, we’ll get rid of the stigma,” Val predicted.

Val said continued access to peer support was also vital for older people at home. 

Val also believes in remaining active, and for her carers to focus on what she can continue to do, rather than what she is no longer capable of.

Mona Orszulak is the recipient of home care package services, and has been self-managing her services for the last three years. She speaks six languages.

Mona is concerned about the amount of home care packages that go to the provider in fees, limiting the amount of services that care recipients can then receive.

She hopes that future aged care systems will allow her to choose which carers will support her, and that the provider will send her the same carer consistently, instead of “any person available”.

These discrepancies were the “biggest motivator” for her to move to self managing her care, but the process has caused her “frustration”, “stress” and “anxiety”.

The aged care system also needs to be “clear and understandable”, and she sympathises with providers having to grapple with guidelines full of “public service jargon”.

Lesley Forster, who had a career in community development and advocacy and is now a home care package recipient, said, “Most providers don’t listen to consumers.”

Too many providers are involved in the “scramble” for profit, and don’t focus enough on what their clients want.

“In these cases client satisfaction is very low,” she said. Care recipients often feel “disrespected” and “demoralised”.

Danijela Hlis, a member of OPAN’s Older Persons Reference Group, said aged care providers in general have a poor understanding of the needs of people with diverse backgrounds.

The issue could be “easily fixed” if those who receive the care are more involved in discussions with providers and with research, she said.

With so many older Australians coming from diverse backgrounds, there also needs to be better understanding of how trauma can affect ageing.

Ageing and dementia are often thought of as “horrible” and “terrible”, Danijela observed. 

But growing older, and even dementia, can be seen as part of life, and with cooperation between the generations, with empathy and respect, growing older and living with dementia can be part of a “beautiful life”.

What would you like to see in aged care? Share your thoughts below.