Guest on Episode 9, Professor Julie Byles, a Director of the Centre for Women’s Health Research,  studies women aged 70 years and up – and says we have a lot to learn from women of a certain age.

To some, older people, and older women in particular, are invisible. To gerontologist, Professor Julie Byles, they’re the people we should be learning from.

Julie’s research focus is on how people can age well, with an eye to understanding the factors that influence and promote healthy ageing. Unlike geriatrics, which focuses on treating diseases in older adults, gerontology explores social, psychological, cognitive and biological aspects of ageing.

A series of fortunate events led Julie into her current field of research. “After completing my PhD I took on a new job in clinical epidemiology and when I joined the team there was an opportunity to work with the Department of Veterans Affairs. The role involved looking at the effectiveness of preventative health assessments for older people, so I just picked it up,” Julie explains.

At the same time, Julie was also involved in the establishment of the ground-breaking Australian Longitudinal Study on Women’s Health (ALSWH). This study explores three cohorts of women: those aged 18 – 25, 46 – 51 and 70 – 75 and at first, Julie was drawn to the middle cohort. “These women were dealing with a range of interesting health issues such as managing menopause and problems with periods along with issues in the workforce and I thought it would be interesting to look at balancing the necessities of healthcare and women’s health more generally,” Julie says.

However, while this middle-aged cohort seemed compelling, Julie was drawn to the lesser-explored 70 – 75 year age bracket and so she decided to delve into their responses. “I was interested to see what was happening in their health data. I started off by looking at the simple tick-a-box cross-sectional data, but then I started to look at what the women had written on the backs of their surveys,” Julie says.

Participants in the study have the opportunity to add any additional information they feel is important on the back of the survey. There were 12,432 women in this cohort, and around 7000 of them wrote on the backs of their surveys: “And they wrote a lot!” Julie exclaims. “I read all those comments and it was totally captivating.”

This rich vein of information from the participants drew Julie in and has maintained her focus over the past 20 years. “A lot of people think that with life expectancy being around 84.5 years there’s no need to study older people – but that’s when it gets interesting – these people are the true survivors. When you think about the life they’ve lived, you realise that we can learn a lot from these people. Most of us want to live a long time, but we also want to live well.”

“The women would say things in the survey like, ‘I’m not the average 70-year-old’ but they are! In fact, we’ve got the average wrong,” Julie exclaims. “These women talk about how busy they keep, how they have friends – and one of them said ‘I think this is the secret of ageing well’.”

Accentuate the positive
“It’s always a tightrope when you’re talking about ageing,” Julie says. “Some people are fit and productive and still capable of working and looking after the grandkids. You want to say ‘it’s not all downhill,’ that older people are a resource and a tremendous wealth in our society. But a lot of people do develop increasing needs and reduced capacity as they grow older, so it’s a matter of trying to balance those two out and come to a happy medium which is something like the truth.”

When it comes to healthcare requirements, Julie says that many older people have less than we’d expect. “Their needs were small, by and large, and they were things that you could deal with quite easily,” Julie said. “However, there were some whose needs were higher and they need to go into residential care. When you lift the covers you do find that some people are doing really well, whereas others need help because they’re struggling.”

Exploring people’s well-being outside of a healthcare model is what gives Julie and her team greater insight into how to live well. “When it comes to healthcare we tend to only look at the disease, not the whole of life that’s alongside that. Healthcare providers are often really shocked when they visit people in their home and see the person rather than the illness,” Julie adds. “The aim of our work is to discover what we could do to jump in early and fix little things before they became high needs.”

“Health is not about whether you have a disease or not, it’s about how good your life is outside that.”

Language matters
Julie says that as soon as she steps outside her sphere of research she realises how much attitude change needs to happen in general society about older people. Back in 2006, the Human Rights Commission of the United Nations outlined why the word ‘elderly’ should not be used as a descriptor – preferring older as a term. Julie concurs that the word ‘elderly’ has many pejorative assumptions: “The word ‘elderly’ is so value-laded,” Julie says. “People who are of a certain age are seen as frail and at-risk. For a while, the word dropped out of usage but now we’re seeing it applied broadly to anyone aged over 60 who are called ‘the elderly’. It’s a dangerous label to put on people.”

Living with illness
With a background in health, and having worked as a clinical epidemiologist with a background in health, Julie is keen to explore how women live with long-term conditions such as diabetes. Many of the women in the 70 – 75 cohort have been living with chronic conditions for up to 20 years and Julie is interested in discovering not only how some women not only live with diabetes but manage it really well, “Some women manage it really well whereas others ‘have diabetes’ or describe themselves as ‘diabetic’. What is it about some women’s lives, their attitudes and their environment that helps them manage their life and their well-being?”

“When we took these women on at 70 – 75, it wasn’t because they were at the end of their lives, but because they were at the beginning of a new stage of life. Twenty years later, around half of the women are still alive and filling in their questionnaires. I think one of the reasons is that it’s so important for them.”

“We need to get beyond the thinking of older people needing healthcare. We think of it as an expenditure, not an investment. We often forget about the resource that we get back with participation in society when we invest in healthcare and social care.”

Studying people over the age of 80 excites Julie. “They are the true survivors and a lot of them will live to 100. We have so much to learn about the life they’ve lived, and the lessons we’ll want to learn if we also want to live long lives.”

“Most of us want to live long, but we want to live well. The beauty of this study is that by the time people get to 100 we’ll have been studying them since they were 70 so we have all the information about their lives up until then.”

“We also have a lot of cross-data to know about their support they’ve been receiving: so we’ll be comparing those people who continue living at home compared to those living in residential aged care. So our study will help with urban planning and housing markets – are people staying in their own home because they have no options or because that’s what they want?”

“Once you start to study people it’s boundless” Julie enthuses.

The ALSWH has also informed so many other projects and studies. Julie was also involved in the establishment of the Sax Institute 45 up study. And also a men’s study. “When you see the richness that you can gather from our study it does beg the question, ‘what about men?’ Julie says. “Reproductive health is a dominant theme with women, but there’s so many other parts to women’s lifestyle such as workforce participation and education.”

Baby boomers; a whole new challenge
For 20 years Julie’s been studying these women and looking at physical function, physical health and mental health and now their use at aged care services. She now has a chance to do it all again. “I’m taking a look back at the women who were the mid-aged women when we started, and are now the same age as the cohort I first started studying. I’ll get to the study the same age over again but with 20 years more data and information. They’re the baby boomers and we keep hearing that they’ll be different and we’ll have the opportunity to compare them to a different cohort and see if there really is any difference.”

“Our latest project is to look at healthcare services and equity – to see how well they’re used by people. Who is using the services and who isn’t? Understanding what services people use, and whether they have equal benefit for people in society is what will drive equity.’

Julie’s enthusiasm for her work and the people she studies is infectious – let’s hope it spreads to a more positive vision for a society made up of diverse generations, each enriching society in a unique manner.

Article courtesy Newcastle University