A group of Sydney woman has developed what they describe as “a new script for ageing” that challenges society’s focus on decline and dementia and  “over-medicalisation” –  an approach they believe contributes to stereotypes and discrimination.

By studying their own journeys through ageing, the women say their group has taken control of their later lives in a way which they had not thought possible. 

Their study process, called Memory Work – nothing to do with ‘use it or lose it’ type exercises –  has given them back power, agency and a “voice” in ageing that they hope will ultimately shift policy and practice.

Retired academic Emeritus Professor Jenny Onyx and retired educator Trees McCormack presented the process and findings of their work at the recent Wicking Trust Symposium in a session titled ‘Older women as agents of their own wellbeing’.

“We are a group of older women who have decided to do a project on our own ageing, on how we age, how we handle ageing and what we can learn from our own ageing,” said Ms McCormick, adding that the project was also done to counter and challenge the type of work which shapes aged care research, policy and practice.

“We’ve noticed a lot of people working to make decisions about aged care and ageing are young, and sometimes it doesn’t work as well as it could if people like us had more input,” she said.

The project emerged over coffee among friends who shared a sense that “your voice stops when you retire”, and that older women are at best patronised and sidelined, but also seen, and often verbally abused as, “old biddies”.

At the same time, they described an internalised fear – of being “useless”, “on the scrapheap”, and, most powerfully, fear of cognitive decline. They said these fears were stoked by the medicalisation of ageing in the scientific and medical literature and in professional practice that makes no mention of the possibility or power of cognitive or personal growth in ageing.

“Even positive health ageing (narratives) are still about decline, about what you can do to maintain reasonable health as long as possible to delay the inevitable. There’s never any discussion of growth,” said Dr Onyx, who is Emeritus Professor of Community Management in the Business School at the University of Technology Sydney.

“This really bugged us,” she said.

She felt the need to dig deeper into this deficit model, but she didn’t want to do it alone or get tugged back into an academic straitjacket.

Instead she proposed a project with six women adopting a Memory Work framework she had written about in the 1990s that was developed by German sociologist and philosopher Frigga Hauer, to explore the collective experience of women.

The group met about every six weeks for three years, always over food or coffee, with writing intrinsic to their work. They agreed on topics or ‘triggers’ – like “Who am I now that I am over 65?” or “Old bodies require higher maintenance”, and would then write, using pseudonyms and in the third person, about both a positive and negative memory.

The first group sparked a second whose experiences and responses were so similar that they joined forces.

Each session was transcribed, reported back and discussed. A group member analysed the collection of memories and linked them back to the literature, “looking for congruence but also for differences and gaps in the literature and conventional knowledge of ageing”.

Where they differed from conventional focus groups was that the process was not directed or controlled by someone else. They were their own directors and subjects, “treating our own ageing as a project to study and learn from”.

It has, they said, been transformative, though they are reluctant to make too many details public as they have a paper accepted for publication and an invitation to present at an associated conference in Europe next year.

This follows presentations to two other events: a gerontology conference in New Zealand and one on gender and work in Australia.

The project was presented to the symposium in a panel session led by Amanda Wilson, a former Editor of the Sydney Morning Herald, and a member of both the Wicking Strategic Review Panel and the NSW Board of the Medical Board of Australia.

It sparked significant interest and discussion, including from Dr Susan Palmer, a psychologist and CEO at Gather My Crew, a not for profit that helps people organise free, online help rosters when they are going through tough times.

With a background in trauma and oncology work, Dr Palmer said she found the work reminiscent of shifts over recent decades in those fields, where until consumers were involved “no one ever talked about post-traumatic growth because the focus was on post-traumatic stress and anxiety, or in oncology about treatment and physical late-effects.

“It was very medicalised, now we talk about survivorship and wellness,” she said. “We do that because consumers got involved.”

Others saw parallels or connections in a range of other initiatives, including 2018 Statewide Conversations with Older South Australians that involved more than 1,500 older people from around the state, and the Millionth Circle movement that brings together groups of women in monthly virtual circles and annual in-person circles.

But there were also reservations in the room, which came as no surprise to Dr Onyx and Ms McCormick, who have had academic publishers see the work as too “popular” and popular publishers see it as too “academic”.

Others at the symposium, particularly those at the sharp end of dementia research, struggled to understand what kind of work it was: was it scientific and conclusive, was it suggesting neurological impact, would it work for men and mixed groups, and did it involve “volunteer bias”, with a group of remarkable older women who would have been doing remarkable things anyway?

Dr Onyx is clear the process “is not therapy, though it is therapeutic”. But beyond that she doesn’t want to be drawn into “false dichotomies” that pit scientific research against “touchy feely” community work.

Asked whether the work represented scientific research, community movement, community participation, empowerment, or self-help, her reply was simple: “All of the above.”

“At its rawest most abstract level I think what we’ve done is demonstrate a new script for ageing that is much different from the accepted script of how you’re supposed to behave when you age,” she said.

“What is unique about us is we’re taking the power unto ourselves and we are taking it seriously and systematically,” she said.

“I think that makes a huge difference for old people, to be confident that they have the power for themselves to do the good things that gerontologists are advising, but not obeying someone else”.

“Ageing is overwhelmingly medicalised and focused on decline and dementia,’ says Dr Onyx. “This perpetuates serious age discrimination, especially for women. They are frightened of ageing and often absorb negative social stereotypes of older women as ugly, dependent, useless.”

The women believe they have created a powerful tool for older women to speak in their own voice.

"We discovered that ageing is not just about decline, but about new challenges, developing new cognitive and physical skills, and can be a basis for personal growth,” said Ms McCormick. 

"We have developed simple guidelines for others who wish to set up their own memory work group. We have created a way to proactively re-vision our own ageing.” 

Philanthropy has the ability to make real and measurable differences to causes and people. A collective effort can make real and lasting impact.

A stunning example of this is demonstrated through the legacy of John and Janet Wicking. After a vibrant lifetime of partnership and generosity, they left behind the J.O. & J.R. Wicking Trust. It was established in 2002 and is now one of Australia’s most significant charitable trusts distributing around $4 million annually. Through its major grants program the Trust aims to achieve systemic change in the areas of ageing and Alzheimer's disease, and also enjoys well-established partnerships with Vision Australia and the O'Brien Foundation (formerly the Microsurgery Foundation).

The Wicking Symposium is a part of the Trust’s contribution to actively supporting the collaborative search for answers to the issues and challenges facing ageing Australians and those with Alzheimer’s disease to age well and die well. The Wicking Trust’s approach to achieving this change has evolved over time and continues to evolve.

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