Participant Newsletter
Healthy ageing
From the directors
Welcome! This edition is all about ‘healthy ageing’ as we celebrate the wonderful women of the 1921-26 cohort.
Since their first survey at age 70-75, they have challenged negative stereotypes of frailty and poor health in old age. In 2021, the first women from this cohort turned 100! So far, we have sent around 20 birthday cards to our centenarians. It’s timely that 2021 was also the first year of the United Nations Decade of Healthy Ageing (2021-2030). The movement aims to shift how we think about age and ageing to improve the lives of older people, their families and communities.
Thank you to everyone who has completed a Women’s Health Australia survey, COVID-19 survey, or participated in a substudy. Your data is making a difference. The Guidelines for Physical Activity During Pregnancy and the National Preventative Health Strategy both drew on research based on your data. In December 2021, we shared research findings with over 300 policymakers from the Department of Health at the annual Australian Longitudinal Study on Women’s Health Symposium. We have also been in the media with stories on endometriosis, heart health, screen time, nutrition, pregnancy, and cannabis use – you can read more on our website.
As the pandemic rolls on, we hope the year ahead will present opportunities to build healthy habits, enjoy the things that bring life meaning, and treasure the community, connections and kindness created by all being in the same storm.
Yours in health,
Professor Julie Byles – Director, University of Newcastle
Professor Gita Mishra – Director, The University of Queensland
Study news
Help us spread the word!
As many women have migrated to Australia since the study began in 1996, we want to make sure their voices are heard. We are now recruiting more women to the 1973-78 cohort, particularly women who were born in South, Southeast or Northeast Asian countries.
Do you know any women born between 1973 and 1978, now aged 44-49, who might like to join the study too? We would love to hear from them!
New participants will have a chance to win a $1000 Prezzee Smart eGift Card.
Share this link so they can take part: www.alswh.org.au/recruit7378
Share this page with your friends
Upcoming surveys
1989-95 cohort
The 7th 1989-95 cohort main survey will start in the second half of 2022.
1973-78 cohort
The 9th 1973-78 cohort main survey is still open. Contact us for your link to the online survey or to be sent a paper survey.
1946-51 cohort
The 10th 1946-51 cohort main survey is planned to start from late May 2022.
1921-26 cohort
Six monthly follow-up surveys for women in the 1921-26 cohort continue.
Congratulations,
Professor Julie Byles AO
We’re pleased to share that Professor Julie Byles, ALSWH Director at the University of Newcastle, was named an Officer of the Order of Australia (AO) in the 2022 Australia Day Honours List.
The Order of Australia recognises Australians who have demonstrated outstanding service or exceptional achievement. An Officer of the Order of Australia (AO) is recognised for distinguished service of a high degree to Australia or to humanity at large.
Julie was honoured for her distinguished service to medical research, gerontology, and professional scientific organisations.
Happy retirement Anna!
We have the great privilege of tracking your transitions through life’s many stages, first jobs, relationships, family formation, careers, retirement, and beyond. We also reflect on our own life stages. In early 2022 we farewelled Operations Manager Anna Graves.
For 18 years, Anna has led the team that deploys surveys, answers the phone and responds to your emails, as well as managing the data collection process. Many of you will have spoken with Anna on the phone or by email. We will miss Anna greatly- including those lovely muffins she makes for morning tea! Please join us in wishing Anna all the best for her retirement.
Healthy ageing
We are fortunate to be one of the world’s largest and longest studies of centenarians; in 2021, we had 492 participants aged 95-100. Our research into ageing challenges stereotypes, guides government policy, and sheds light on how to age well.
What is healthy ageing?
The goal of healthy ageing is not to age without disease. The reality is that women don’t just get one disease as they get older; they get many. At age 70-75, 36% of the 1921-26 cohort had no major disease or disability. By age 76-81, the majority of women already had conditions in at least one disease group (e.g. mental health, coronary heart disease, respiratory disease, cancers, diabetes, or dementia). By age 88-93, most had conditions in at least three groups.
With this in mind, healthy ageing is defined as maintaining our ability to do the things we value for as long as possible. This ability is affected by personal factors such as our physical and mental health and external factors like our homes, community, services and supports, and our broader society.
Do we all age in the same way?
The concept of Healthy Ageing recognises that people enter older age already on different paths. They have different levels of ability, different threats to their health, and different levels of reserve. Social position and personal resources across their life also affect how people can adapt to change and be supported in their older age.
To map the different ‘healthy ageing’ paths in the 1921-26 cohort we tracked factors that describe women’s quality of life – their physical function, social function, mental health, bodily pain, general health, and vitality – from 1996 to 2016.
Low health
11% of the women had consistently low health scores and needed help with tasks even at age 70-75. Importantly, while their mental health scores were lower than other groups they did not decline further as the women aged.
Moderate to low health
24% of the group started with moderate health, which declined to low health as they reached their 90s. Despite having difficulties with most tasks, their mental health remained high.
High to low health
30% of the cohort started with high health, which declined to low health over the years. They maintained high mental health scores as they aged.
High to moderate health
23% of the group started with high health, which declined to moderate levels. However, they maintained high mental health scores as they aged.
High health
11% of the women maintained consistently high health through to their 90s. They could do most tasks around the house and had high mental health scores.
The fact that most women maintained high levels of mental health is a testament to their resilience, even in the face of declining health in other areas.
Low health
11% of the women had consistently low health scores and needed help with tasks even at age 70-75. Importantly, while their mental health scores were lower than other groups they did not decline further as the women aged.
Moderate to low health
24% of the group started with moderate health, which declined to low health as they reached their 90s. Despite having difficulties with most tasks, their mental health remained high.
High to low health
30% of the cohort started with high health, which declined to low health over the years. They maintained high mental health scores as they aged.
High to moderate health
23% of the group started with high health, which declined to moderate levels. However, they maintained high mental health scores as they aged.
High health
11% of the women maintained consistently high health through to their 90s. They could do most tasks around the house and had high mental health scores.
The fact that most women maintained high levels of mental health is a testament to their resilience, even in the face of declining health in other areas.
Watermelon, by Julie Byles, 2021. Part of a series of portraits as the Maroba artist in residence. Due to lockdowns, this portrait was based on photos from the Maroba Facebook page.
Watermelon, by Julie Byles, 2021. Part of a series of portraits as the Maroba artist in residence. Due to lockdowns, this portrait was based on photos from the Maroba Facebook page.
How does it feel to be in your 90s?
We interviewed 50 women in their 90s as part of a substudy called Beyond Successful Ageing. The first question of the interview simply asked how the participants were going now they were in their 90s.
Many women expressed amazement at their own age and said they felt no different to their younger selves, even if the “.. external parts don’t work as well”. There was an overwhelming sense of good fortune and gratitude, with every woman using words like “lucky”, “fortunate”, and “grateful” in their interviews.
“I think when you hit the eighties, you are going to find yourself slowing down which everybody does. To a certain degree. But I think you have got to have something there to step in to take that place. Because once you step away. You stop doing something. And you’ve got that lack of time. You have got to have something to take over into that place; otherwise, your mind is not going to keep occupied. And I say if you don’t keep your mind occupied, it’s not good for you….I think you have got to work on how you are going to survive.”
Most women talked about the effects of ageing on their bodies and that they were “slowing down a bit”. However, there was a sense of acceptance that physical limitations and health problems were a part of life and expected for their age, so they just got on with things. After all, there was no point complaining.
There was also a strong theme of resilience and resourcefulness in the women’s ability to make adjustments and use support systems to continue living a fulfilled life.
Most women had no explanation for their long life. They thought it may be due to “good genes” or family history of longevity, healthy diet and lifestyle, and “luck of the draw.” Others put it down to having purpose and being engaged in the community.
“I have a very favourite song that when I get up in the morning it’s usually the first thing I’d say, is Monty Python’s ‘always look on the bright side of life, da dah da dah da dah da dah da dah’. So I do a little dance with the ‘da dah da dah da dah’ bit. And that’s my best advice to anybody. Just always look on the bright side of life because it’s not that long... It goes so fast you can’t believe how fast it does go. I don’t know how I ever got to be this age.”
What do we value doing in older age?
If healthy ageing is about maintaining people’s ability to do the things they value, then understanding what women choose to do at this life stage is vital. As part of the Beyond Successful Ageing study, we asked the women of our 1921-26 cohort about their activities.
Many women took joy in remembering and in “just being”. Mental activities like puzzles, sudoku and crosswords were popular hobbies, either for fun or to keep women’s minds sharp. Some women found satisfaction in completing housework, gardening, crafts, or crocheting for charities. Continuing to be productive, cooking, cleaning, keeping busy and engaged gave their life meaning and made them feel connected and useful.
Family was a strong theme throughout women’s interviews and brought much happiness. Most women had a high priority for social activities and community participation. They frequently talked about outings with friends, playing cards, bingo, scrabble, and other games; being involved in the church, bible groups, Probus and University of the Third Age.
Many continued to drive themselves. For these women, driving was essential not only for transport but also for independence and identity. They drove every day to maintain their skills.
Many women had embraced smartphones, iPads and computers for emails, Skype, Facebook, googling, personal banking, games and entertainment. Some women were surprised by their ability to learn new technology.
Watermelon, by Julie Byles, 2021. Part of a series of portraits as the Maroba artist in residence. Due to lockdowns, this portrait was based on photos from the Maroba Facebook page.
What are our prospects for healthy ageing?
Knowing that we all enter older age on different paths and with different health risks, what are the healthy ageing prospects for women in our younger cohorts?
At age 70-75, two-thirds of the 1921-26 cohort already had at least one chronic disease. However, most women didn’t have a disability or need help. Professor Julie Byles, ALSWH Director – Newcastle, identifies this as the “wide window of opportunity” where we can intervene to limit the consequences of disease, even if we can’t prevent the diseases from accumulating.
Overall, the women of the 1946-51 cohort have entered their 70s in better (self-rated) health, with a higher percentage rating themselves as excellent or very good. Women currently in their 70s also have higher physical function scores than women in the previous generation when they were in their 70s. This is good news for their healthy ageing prospects.
Women in the 1973-78 and 1989-95 cohorts show even further improvements in health by smoking less and exercising more. However, each successive cohort is heavier, with a higher prevalence of obesity. Research from the 1921-26 cohort suggests that obesity results in lower life expectancy and fewer healthy years. Women in the 1989-95 cohort are also reporting worse self-rated health and more signs of psychological distress. The window of opportunity to improve the health of young women in their mid and later years starts now.
Percentage of women rating their health as good or very good in each cohort
Location, Location, Location
Did you know that where you live can affect your health and wellbeing?
For instance, your data shows us that young women in regional centres experience less psychological distress than women in metropolitan areas1.
We also know that older women living in regional and remote areas are more likely to drive than their city-dwelling peers2.
Research from the Mothers and their Children’s Health substudy suggests that exposure to small particles of air pollution known as PM2.5 might adversely affect children’s emotional, behavioural and gross motor skills development3.
How do we know all that? Your address information is geocoded confidentially by the Hugo Centre for Population Studies at the University of Adelaide. We use de-identified geocodes or postcodes to look up additional information that we can’t get from your survey. We call these derived measures, and they provide information on things like:
- environmental measurements like air quality or green space
- location categories, e.g. city, rural, or remote
- socio-economic levels without using detailed personal information like income.
In this way, potentially identifying information remains separate from your research data. While these derived measures are less precise at an individual level, they are perfectly alright for health and social research and allow us to easily compare our findings with other studies.
- Baxter et al., Journal of Affective Disorders, 2021, https://doi.org/10.1016/j.jad.2021.08.037
- Ahmed et al. Environment International, 2022, https://doi.org/10.1016/j.envint.2021.107003
- Hambisa et al. Journal of Transport and Health, 2021, https://doi.org/10.1016/j.jth.2021.101116
Substudy updates
GELLES - Open
Roughly one in nine ALSWH participants have endometriosis. Women with endo often experience severe pain, heavy periods, and infertility. Diagnosis can take 7-12 years.
You can make a difference by taking part in the Genetic variants, Early Life exposures, and Longitudinal Endometriosis symptoms Study (GELLES).
GELLES is for all women – whether you have endometriosis or not.
Throughout 2022, we will invite women from the 1989-95 and 1973-78 cohorts to take part in GELLES.
Learn more at www.alswh.org.au/gelles
MatCHES - Coming soon
We will be launching a new substudy for the 1989-95 cohort later this year – The Mothers and their Children’s Healthcare Experience Study (MatCHES)!
If you gave birth from 2015 onwards, we want to hear about your health and healthcare experiences before, during, and after pregnancy and learn about your child’s health and development. We will use this information to improve healthcare for mothers and their children.
MatCHES will launch with the 1989-95 cohort’s next main survey, so keep an eye on your inbox.
M-PreM - Closed
The Menarche to Pre-Menopause (M-PreM) substudy is now closed. A HUGE thank you to the 1310 participants from the 1973-78 cohort who visited us in the clinic or completed an M-PreM@home kit. We really appreciate your effort to participate in the substudy, especially throughout the many disruptions caused by the coronavirus outbreaks.
We are busy analysing the data, so keep an eye out for our research findings in future newsletters and on our website - www.alswh.org.au/m-prem.
Contraceptive choice for women with chronic disease - Closed
We have investigated how women with chronic health conditions (and their partners) make contraceptive decisions. Thank you to the 23 women from the 1989-95 cohort who shared their stories. We are currently in the process of analysing the data.
The information you provided will be used to develop tools to help women with chronic disease (and their partners) navigate contraceptive decision making and reproductive planning.
MatCH - Closed
2021 marked five years since the Mothers and their Children's Health (MatCH) survey went out to mothers in our 1973-78 cohort. Mums reported on the health and wellbeing of their children, then aged 0-12 years. The MatCH Research Team has published 29 research papers so far.
In 2022 MatCH data will be added to ALSWH, making it available to a broader community of researchers. We anticipate many more exciting new findings.
Read more at: www.alswh.org.au/match/match-news/
GELLES - Open
Roughly one in nine ALSWH participants have endometriosis. Women with endo often experience severe pain, heavy periods, and infertility. Diagnosis can take 7-12 years.
You can make a difference by taking part in the Genetic variants, Early Life exposures, and Longitudinal Endometriosis symptoms Study (GELLES).
GELLES is for all women – whether you have endometriosis or not.
Throughout 2022, we will invite women from the 1989-95 and 1973-78 cohorts to take part in GELLES.
Learn more at www.alswh.org.au/gelles
MatCHES - Coming soon
We will be launching a new substudy for the 1989-95 cohort later this year – The Mothers and their Children’s Healthcare Experience Study (MatCHES)!
If you gave birth from 2015 onwards, we want to hear about your health and healthcare experiences before, during, and after pregnancy and learn about your child’s health and development. We will use this information to improve healthcare for mothers and their children.
MatCHES will launch with the 1989-95 cohort’s next main survey, so keep an eye on your inbox.
M-PreM - Closed
The Menarche to Pre-Menopause (M-PreM) substudy is now closed. A HUGE thank you to the 1310 participants from the 1973-78 cohort who visited us in the clinic or completed an M-PreM@home kit. We really appreciate your effort to participate in the substudy, especially throughout the many disruptions caused by the coronavirus outbreaks.
We are busy analysing the data, so keep an eye out for our research findings in future newsletters and on our website - www.alswh.org.au/mprem.
Contraceptive choice for women with chronic disease - Closed
We have investigated how women with chronic health conditions (and their partners) make contraceptive decisions. Thank you to the 23 women from the 1989-95 cohort who shared their stories. We are currently in the process of analysing the data.
The information you provided will be used to develop tools to help women with chronic disease (and their partners) navigate contraceptive decision making and reproductive planning.
MatCH - Closed
2021 marked five years since the Mothers and their Children's Health (MatCH) survey went out to mothers in our 1973-78 cohort. Mums reported on the health and wellbeing of their children, then aged 0-12 years. The MatCH Research Team has published 29 research papers so far.
In 2022 MatCH data will be added to ALSWH, making it available to a broader community of researchers. We anticipate many more exciting new findings.
Read more at: www.alswh.org.au/match/match-news/
How and why is my data
linked with other data?
1. Improving health and healthcare services
Records such as Medicare, hospital, death and disease registers, and aged care datasets are linked to Study data. These records provide administrative and classification information on health events, medical conditions, treatments and medications, and services used. This wider perspective allows us to examine the entire patient journey through the health system, finding answers which we could not get from survey data alone. For example, by putting Medicare data together with survey data, we can investigate how women’s access to health services is affected by where they live.
How are records linked?
Your privacy is a priority. Records provided to the Study are subject to strict privacy and confidentiality regulations. Dedicated Data Linkage Units match and de-identify records. They do not have access to your survey answers. Your name and contact details are not included with the information we receive. The researchers and project staff who analyse your data also sign confidentiality statements. This process is approved by the responsible Human Research Ethics Committees.
Consent
We have previously asked for your consent to health record linkage. These records are now regularly provided without your needing to consent every time. If you wish to opt-out of this method of data collection, please contact the Study (see below). You can keep doing our surveys, and receive these newsletters, even if you opt-out of data linkage.
2. ‘Til death do us part…
Because date and cause of death are essential in the analysis of health outcomes, we have approval from our Human Research Ethics Committees to check the National Death Index for everyone who has participated in the Study. This also avoids distress for relatives who may receive survey reminders for people who have passed away.
3. Survey follow-up
If you don’t complete your latest survey, we will send reminders. These may include targeted reminders made by matching your email address or mobile phone number with social media records in a secure and confidential manner. The Study may also access the Electoral Roll to locate participants. If you do not wish to be contacted in this way, please let us know.
For more details, read our privacy policy: www.alswh.org.au/privacy-policy
See a list of the organisations involved and the information currently used in our research at: https://www.alswh.org.au/for-participants/participant-information/data-linking-explained/
Contact Us
If you have concerns about our methods of data collection, need more information, or wish to opt out of record linkage, please contact the Study.
- Freecall: 1800 068 081
- Email: info@alswh.org.au
- Website: www.alswh.org.au
If you would prefer to discuss this with an independent person, you can contact:
- The Human Research Ethics Officer, Research Branch, The University of Newcastle, University Drive, Callaghan, NSW 2308, Ph: 02 4921 6333
- The Human Research Ethics Officer, The University of Queensland, St Lucia, QLD 4072, Ph: 07 3365 3924
- Office of the Australian Information Commissioner https://www.oaic.gov.au/
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The research on which this newsletter is based was conducted as part of the Australian Longitudinal Study on Women’s Health by the University of Queensland and the University of Newcastle. We are grateful to the Australian Government Department of Health for funding and to the women who provided the survey data.
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