Breast and bowel cancers diagnosed in people 'too young to have cancer': A blueprint for research using family and twin studies.

Young breast and bowel cancers (e.g., those diagnosed before age 40 or 50 years) have far greater morbidity and mortality in terms of years of life lost, and are increasing in incidence, but have been less studied. For breast and bowel cancers, the familial relative risks, and therefore the familial variances in age-specific log(incidence), are much greater at younger ages, but little of these familial variances has been explained. Studies of families and twins can address questions not easily answered by studies of unrelated individuals alone. We describe existing and emerging family and twin data that can provide special opportunities for discovery. We present designs and statistical analyses, including novel ideas such as the VALID (Variance in Age-specific Log Incidence Decomposition) model for causes of variation in risk, the DEPTH (DEPendency of association on the number of Top Hits) and other approaches to analyse genome-wide association study data, and the within-pair, ICE FALCON (Inference about Causation from Examining FAmiliaL CONfounding) and ICE CRISTAL (Inference about Causation from Examining Changes in Regression coefficients and Innovative STatistical AnaLysis) approaches to causation and familial confounding. Example applications to breast and colorectal cancer are presented. Motivated by the availability of the resources of the Breast and Colon Cancer Family Registries, we also present some ideas for future studies that could be applied to, and compared with, cancers diagnosed at older ages and address the challenges posed by young breast and bowel cancers.

Effects of physical activity on depressive symptoms in older caregivers: The IMPACCT randomized controlled trial.

OBJECTIVES: Physical activity (PA) can reduce depressive symptoms but has not been tested amongst depressed older caregivers and their care-recipients. The aim of this single-blind randomized controlled trial was to investigate the effect of a 6-month tailored PA program on depressive symptoms in older caregivers. METHOD: Caregivers were included if they had scores of ≥5 on the 15-item geriatric depression scale (GDS-15). Care-recipients could have any type of physical, mental or cognitive condition requiring support. The PA intervention group completed an individualized program based on the Otago-Plus Exercise Program. The primary outcome was improvement in depressive symptoms in caregivers measured at six and 12 months. RESULTS: Two hundred and twelve participants (91 dyads and 30 caregivers only) were randomized using a 3:3:1 ratio to PA intervention, social-control, and usual-care control groups. There were no significant differences in depressive symptoms of the caregivers between the three groups at 6 months or 12 months. However, more than 50% of caregivers in all three groups no longer had a GDS-15 score ≥5 at 6 months. Further analysis revealed that caregivers in the PA group caring for someone with a standardised mini-mental state examination (SMMSE) score ≥24 had significantly less depressive symptoms than those caring for someone with a SMMSE score <24 compared with social-control (p < 0.02) and usual-care groups (p < 0.02). CONCLUSIONS: A PA intervention may be beneficial for some caregivers in reducing symptoms of depression but may not be as beneficial to caregivers of people living with cognitive impairment.

Engaging older Australians in sexual health research: SHAPE2 survey recruitment and sample.

BACKGROUND: Sexual health research rarely includes older age groups and the sexual health needs of older Australians are not well understood. Older adults are online in increasing numbers; however, internet surveys involving samples of older adults and sensitive topics remain uncommon. In 2021, we developed an online survey to explore the sexual health needs of Australians aged 60+years. We describe here survey recruitment and sample obtained, comparing it with national population data (Australian Bureau of Statistics) and the sample of the similar 'Sex, Age and Me' study from 2015. METHODS: We recruited 1470 people with a staggered three-phase strategy: (1) emails to organisations and community groups; (2) paid Facebook advertising; and (3) passive recruitment. Half (50.6%) found out about the study via an organisation or group and just over a third (35.7%) from Facebook. RESULTS: The sample was equally balanced between men (49.9%) and women (49.7%) (0.4% other gender identities). Participants were aged 60-92years (median 69years) with all Australian States/Territories represented. Facebook recruits were younger, more likely to be working rather than retired, and more likely to live outside a major city, than those recruited by other means. CONCLUSIONS: Using the recruitment methods described, we successfully obtained a diverse and fairly representative sample of older Australians within the constraints of a convenience sample and on a modest budget. This research sheds light on ways to engage an under-served demographic in sexual health research. Our experience shows that many older adults are amenable to recruitment for online sexual health surveys using the approaches outlined.

Sexual behaviour during COVID-19: a repeated cross-sectional survey in Victoria, Australia.

BACKGROUND: During 2020, the State of Victoria (Australia) experienced two COVID-19 waves. Both resulted in community lockdowns followed by eased restrictions. We examined variation of sexual behaviour in Victorians over time during COVID-19. METHODS: We conducted a repeated online survey at four timepoints corresponding with two lockdown (LD1, LD2) and two reduced restriction (RR1, RR2) periods in Victoria. A convenience sample of participants aged ≥18years was recruited via social media and asked about their recent (past 4weeks) sexual behaviour. Using multivariable logistic regression, we investigated variation in sexual behaviour between surveys. RESULTS: A total of 1828 surveys were completed; 72% identified as female, 69% were aged 18-29years, 90% were metropolitan residents. The proportion reporting recent partnered sex ranged from 54.9% (LD2) to 70.2% (RR1). Across all timepoints, the most common sexual partners were regular (81.5%, n =842) and 10.8% (n =111) reported casual partners (e.g. hook-ups). Compared with LD1, respondents were >2-fold more likely to report casual partner(s) during reduced restrictions (RR1: aOR 2.0; 95% CI 1.1-3.7; RR2: aOR 2.8; 95% CI 1.3-5.9). Across all timepoints, 26.6% (n =486) reported using dating apps. Compared with LD1, dating app use for face-to-face activities (e.g. dates, hook-ups) was >4-fold higher during reduced restrictions (RR1: aOR 4.3; 95% CI 2.3-8.0; RR2: aOR 4.1; 95% CI 1.9-8.8). App use for distanced activities (e.g. sexting, virtual dates) was highest during LD1 (48.8%) than other periods. CONCLUSIONS: In this convenience sample, self-reported sexual behaviours fluctuated between lockdowns and reduced restrictions. While dating apps may provide a mechanism for virtual connections, this may be temporary until physical connections are possible.

Co-designing a dementia-specific education and training program for home care workers: The 'Promoting Independence Through Quality Dementia Care at Home' project.

Undertaking co-design with the end users of services has rapidly evolved as the best-practice approach to program design, development and implementation. Increased interest in using participatory co-design in dementia care has drawn attention to the need for evidence-informed methods for facilitating the meaningful involvement of people with dementia and their family carers in co-design activities. The aim of this paper is to describe the co-design framework used in the co-design of a dementia specialist training program for home care workers. The Promoting Independence Through quality dementia Care at Home program is a successful example of co-design methodology used across multiple project stages and with various stakeholder groups, including people living with dementia, family carers, home care workers, managers and researchers. Co-design methods were tailored to each stage, purpose, and stakeholder group, and to facilitate the involvement of people living with dementia. Findings provide unique insights into optimising input from co-design partners, including people living with dementia; the methodology, conditions and requirements for participants to co-design and implement ideas; and perspectives on the enablers and challenges of using co-design in this population. In this paper, we present a comprehensive approach for involving people living with dementia as active and equal contributors in inclusive and meaningful participatory co-design.

What constitutes 'good' home care for people with dementia? An investigation of the views of home care service recipients and providers.

BACKGROUND: Our objective was to explore what people receiving and providing care consider to be 'good' in-home care for people living with dementia. METHODS: We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke's six-step approach. RESULTS: Consensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers' understanding of dementia and its impact; 2) Home care workers' demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers' knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers. CONCLUSIONS: It is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services. TRIAL REGISTRATION: ACTRN 12619000251123 .

Promoting Independence Through quality dementia Care at Home (PITCH): a research protocol for a stepped-wedge cluster-randomised controlled trial.

BACKGROUND: Home care service providers are increasingly supporting clients living with dementia. Targeted and comprehensive dementia-specific training for home care staff is necessary to meet this need. This study evaluates a training programme delivered to care staff (paid personal carers) of clients living with dementia at home. METHODS: This study is a pragmatic stepped-wedge cluster-randomised controlled trial (SW-CRT). Home care workers (HCWs) from seven home care service providers are grouped into 18 geographical clusters. Clusters are randomly assigned to intervention or control groups. The intervention group receives 7 h of a dementia education and upskilling programme (Promoting Independence Through quality dementia Care at Home [PITCH]) after baseline measures. The control group receives PITCH training 6 months after baseline measures. This approach will ensure that all participants are offered the program. Home care clients living with dementia are also invited to participate, as well as their family carers. The primary outcome measure is HCWs' sense of competence in dementia care provision. DISCUSSION: Upskilling home care staff is needed to support the increasing numbers of people living with dementia who choose to remain at home. This study uses a stepped-wedge cluster-randomised trial to evaluate a training programme (PITCH) for dementia care that is delivered to front-line HCWs. TRIAL REGISTRATION: anzctr.org.au ; ACTRN12619000251123. Registered on 20 February 2019.

Contraceptive use and pregnancy plans among women of reproductive age during the first Australian COVID-19 lockdown: findings from an online survey.

PURPOSE: Australia introduced 'lockdown' measures to control COVID-19 on 22 March 2020 which continued for a period of two months. We aimed to investigate the impact this had on sexual and reproductive health (SRH). MATERIALS AND METHODS: Australians aged 18+ were eligible to participate in an online survey from 23 April to 11 May 2020. We report on the experiences of 518 female participants aged <50 years. Pregnancy intentions and contraceptive use were analysed using descriptive statistics. Odds ratios and 95% confidence intervals were calculated to investigate difficulty accessing SRH products and services. Qualitative data were analysed using conventional content analysis. RESULTS: Most participants were aged 18-24 years, and indicated they were trying to avoid pregnancy. The oral contraceptive pill was the most common single method used however nearly 20% reported they were not using contraception. Women who were employed had less trouble accessing contraception during lockdown. Participants reported delaying childbearing or deciding to remain childfree due to COVID-19. CONCLUSION: COVID-19 lockdown impacted the SRH of Australian women. Findings highlight the importance of continued access to SRH services and products during global emergencies.

Love during lockdown: findings from an online survey examining the impact of COVID-19 on the sexual health of people living in Australia.

INTRODUCTION: Australia recorded its first case of COVID-19 in late January 2020. On 22P March 2020, amid increasing daily case numbers, the Australian Government implemented lockdown restrictions to help 'flatten the curve'. Our study aimed to understand the impact of lockdown restrictions on sexual and reproductive health. Here we focus on sexual practices. METHODS: An online survey was open from the 23PP April 2020 to 11P May 2020. Participants were recruited online via social media and other networks and were asked to report on their sexual practices in 2019 and during lockdown. Logistic regression was used to calculate the difference (diff) (including 95% CIs) in the proportion of sex practices between time periods. RESULTS: Of the 1187 who commenced the survey, 965 (81.3%) completed it. Overall, 70% were female and 66.3% were aged 18-29 years. Most (53.5%) reported less sex during lockdown than in 2019. Compared with 2019, participants were more likely to report sex with a spouse (35.3% vs 41.7%; diff=6.4%; 95% CI 3.6 to 9.2) and less likely to report sex with a girl/boyfriend (45.1% vs 41.8%; diff=-3.3%; 95% CI -7.0 to -0.4) or with casual hook-up (31.4% vs 7.8%; 95% CI -26.9 to -19.8). Solo sex activities increased; 14.6% (123/840) reported using sex toys more often and 26.0% (218/838) reported masturbating more often. Dating app use decreased during lockdown compared with 2019 (42.1% vs 27.3%; diff= -14.8%; 95% CI -17.6 to -11.9). Using dating apps for chatting/texting (89.8% vs 94.5%; diff=4.7%; 95% CI 1.0 to 8.5) and for setting up virtual dates (2.6% vs 17.2%; diff=14.6%; 95% CI 10.1 to 19.2) increased during lockdown. CONCLUSION: Although significant declines in sexual activity during lockdown were reported, people did not completely stop engaging in sexual activities, highlighting the importance of ensuring availability of normal sexual and reproductive health services during global emergencies.

Talking about sex with friends: perspectives of older adults from the Sex, Age & Me study in Australia.

This qualitative study explored the barriers and facilitators to sexual communication between older adults and friends. Fifty-three women and men aged 58 and older were interviewed about their intimate relationships and sexual behaviours and attitudes. Findings indicated that talking about sex with friends played an important role in providing support and sharing information. The privacy of the topic meant that trust and confidentiality had to be in place before sexual conversations occurred, and that discretion was required for those married or in a relationship due to potential breaches of privacy. Stereotypes associated with older age made talking about sex 'risky' as participants were vulnerable to scrutiny. Growing-up during a time when sex was taboo influenced willingness and comfort in talking about sex today. Among those who did talk with friends, women tended to talk to women and men to men. These findings are significant in the context of an increasing global population of older adults and silence around sex and ageing. By exploring sexual communication outside of the healthcare context, where previous research has focused, the findings indicate novel ways to support the sexual health and well-being of older adults.

Do we need to worry about sexually transmissible infections (STIs) in older women in Australia? An investigation of STI trends between 2000 and 2018.

Background This study examined trends in chlamydia, gonorrhoea and syphilis diagnosis, and chlamydia testing and positivity, among older women in Australia between 2000 and 2018. METHODS: Using national notifiable disease data and Medicare data, diagnosis rates were calculated for each sexually transmissible infection (STI), as well as testing and positivity rates for chlamydia. Data were compared between two older groups (55-64 and 65-74 years) and two younger groups (15-24 and 25-34 years). Poisson regression examined trends for 2000-18 and 2014-18 separately. RESULTS: Rates for all STIs increased across all age groups and were highest in the two youngest age groups. From 2014 to 2018, chlamydia rates increased the most among those aged 55-64 years [incidence rate ratio (IRR) = 1.06; 95%CI: 1.02-1.10] and declined in those aged 15-24 years (IRR = 0.99; 95%CI: 0.99-0.99). Gonorrhoea rates increased the most among those aged 65-74 years (IRR = 1.47; 95%CI: 1.23-1.77) and least in those aged 15-24 years (IRR = 1.12; 95%CI: 1.10-1.13). Syphilis rates increased the most among those aged 55-64 years (IRR = 1.58; 95%CI: 1.25-1.99) and least in those aged 15-24 years (IRR = 1.29; 95%CI: 1.23-1.35). Chlamydia test positivity declined among younger women but remained stable in older women. CONCLUSIONS: In general, STIs are increasing among older women in Australia at a faster rate than among younger women. Although the greatest burden is among younger women, STIs need to be considered and monitored among older women.

'That might be a bit sexy for somebody your age': Older adult sexual health conversations in primary care.

BACKGROUND: Many older adults are sexually active, and STIs are rising amongst this cohort. In primary care, sexual health discussions are limited as health-care practitioners commonly assume older patients aged 60+ are not sexually active or are unwilling to discuss sex. Studies have either examined patient or clinician views, but not both. OBJECTIVE: This study investigates sexual health discussions in general practice. It is unique in that it sought perspectives of different groups: older patients, health-care professionals and key informants. RESULTS: Qualitative interviews revealed that older patients expect clinicians to bring up sexual concerns, whereas clinicians prefer older patients to do so. A simple electronic solution to circumvent this impasse was suggested and discussed. CONCLUSIONS: Older adults would like to discuss sexual concerns with their health-care providers. Given the rising rates of STIs in later life, sexual health discussions with older patients must become part of routine care.

An overview of sexual behaviour research in later life-Quantitative and qualitative findings.

AIM: This article provides an overview of current sexual behaviour research in later life by describing associated factors, including the physical and psychological benefits. METHODS: Recent systematic reviews were interrogated for findings on sexual behaviour research in adults aged 60+. RESULTS: Regardless of research methods employed, all studies showed that there were a range of physical and psychological benefits to remaining sexually active in later life. While quantitative studies placed an emphasis on measuring penile-vaginal intercourse, they provided no definitive conclusion about the benefits due to 'inconsistent results' across studies. Qualitative studies described the myriad ways in which older adults redefine what constitutes sexual activity despite the onset of dysfunction and disability. CONCLUSION: While the different research methods show that engaging in sexual behaviour has physical and psychological benefits at all adult ages, there is limited conclusive evidence about what the overall benefits might be in later life.

Sexuality and ageing in palliative care environments? Breaking the (triple) taboo.

BACKGROUND: Ageist perceptions continue to constrain the choices available to older adults in terms of their sexual expression. OBJECTIVE: This paper discusses the last stage of life, when older adults may be progressing through a terminal disease, dying and in palliative care environments. Are they (or is anyone, at any age) interested in remaining intimate when they are dying? If yes, how is this interest accepted/facilitated within such environments?. RESULTS: This article does not claim to be definitive, but provides a broad, preliminary sketch of this neglected research area. It suggests that, for many, sexual expression and intimate connection continue to be important until the very end of the lifespan. CONCLUSIONS: As such, this important topic deserves recognition as part of an overall response to sexuality and ageing by policy makers and health professionals. Its importance will only become more significant due to greater longevity and population ageing.

'I know they are not trained in dementia': Addressing the need for specialist dementia training for home care workers.

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well-being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own homes. While many are supported informally by family carers, formal support provided by home care workers often enables them to remain at home for longer period. However, providing community-based care for people with dementia can be challenging. Workers often lack training in dementia-specific care for clients with increasingly complex needs, and typically work without direct supervision. As the demand for person-centred home care for people with dementia increases, specialist dementia training for home care workers is urgently needed. In this qualitative study, we used in-depth interviews of a purposive sample, comprising 15 family carers and four older people with dementia, to understand the experience of receiving community care. Data analysis was guided by Braun and Clarke's approach to thematic analysis and revealed the following five overlapping themes, relating to home care workers' understanding of dementia, person-centred care, communication and rapport, mutual collaboration, and the influence of organisational constraints on continuity of care. Although participants acknowledged that service providers operated under challenging circumstances, they were frustrated with home care workers' lack of dementia knowledge and inconsistent staff rostering. Conversely, an understanding of the lived experience of dementia, effective communication and rapport, and continuity of care contributed significantly to a positive experience of receiving care. The findings of this study will be used to inform the essential elements of a training program aimed at enabling and empowering a skilled, specialist home care workforce to support older people with dementia to live well at home for as long as possible.

'An ant against an elephant': Retirement village residents' experiences of disputes and dispute resolution.

OBJECTIVE: To record Victorian retirement village residents' experiences of dispute management and satisfaction levels related to dispute resolution processes. METHODS: Survey distributed to 6500 retirement village residents. RESULTS: Surveys returned from 1876 residents (29% return rate). Most residents rated life in retirement villages as positive (mean 7.9/10), with an association between life satisfaction and management's ability to resolve disputes (rs = 0.44, P < 0.01). Almost 70% of respondents reported issues of concern to management were resolved satisfactorily; 38% were not resolved to residents' satisfaction. One-fifth reported contacting regional managers or higher personnel regarding issues affecting them, with two-thirds of these respondents reporting a negative outcome. Over 30% did not know if their village had dispute resolution processes in place. CONCLUSION: Despite finding retirement village life positive, residents of retirement villages found disputes and dispute resolution processes unsatisfactory and desired change to address these concerns.

Sexual Satisfaction Among Older Australian Heterosexual Men and Women: Findings from the Sex, Age & Me Study.

This study explored sexual satisfaction in older heterosexual Australians using data from a national sample of 1,583 men and women aged 60+ who hoped or planned to have sex in the future. Data collection took place in 2015; participants were recruited using a variety of online and offline advertisements. Less than half the sample (46%) reported they were very or extremely satisfied with their sexual lives. Those who had sex more often and were more interested in sex were more likely to be satisfied, while those who wanted sex more often in the future were less likely to be satisfied, as were men who had experienced sexual difficulties. Sexual satisfaction was also associated with life satisfaction in men and positive mental health in women. Factors associated with satisfaction in this study will help guide strategies to support older people in realizing the sexual lives they desire.