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.

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 .

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.

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.

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.

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.

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.

Experiences of ageism and the mental health of older adults.

OBJECTIVES: This article examines relationships between experiences of ageism and four specific mental health outcomes among older Australian adults, including whether these relationships vary depending on age, gender, and sexual orientation. METHODS: A survey was conducted nationwide involving 2137 participants aged 60 years and older. Mental health variables included depressive symptoms, anxious symptoms, general stress, and positive mental health or flourishing. RESULTS: Recent experiences of ageism were found to be strongly related to poorer mental health on all four mental health variables. However, experiences of ageism appeared to have a greater effect on the mental health of those who were younger in age (specifically depression), of men more so than women (specifically depression), and of those who identified as heterosexual as opposed to other sexual orientations (specifically general stress). CONCLUSION: These findings suggest that experiences of ageism may be an important factor in the health and well-being of older adults, especially for those who are younger, male, and heterosexual, and may need to be taken into account when devising strategies for supporting healthier and happier ageing.

The Importance of Sex and the Meaning of Sex and Sexual Pleasure for Men Aged 60 and Older Who Engage in Heterosexual Relationships: Findings from a Qualitative Interview Study.

That many older individuals continue to engage in various forms of sexual expression well into later life is now well established in the literature. To date, however, only a small body of qualitative research has examined older men's experiences and understandings of sex in later life. Likewise, the ways in which older men's discussions on sex may be used as an avenue for "doing" masculinity remain underexplored. Older men are particularly interesting in this regard, as they inhabit an increasingly subordinated position in relation to hegemonic masculine ideals because of their age. To what extent might this limit or, alternatively, open up the possibilities for sexual expression and subjectivity in later life? Drawing on a subset of findings from Sex, Age, and Me: A National Study with Australian Women and Men Aged 60 and Older, data from qualitative interviews with 27 Australian men were explored in this article. The first Australian study of its kind, we argue that older men who engage in heterosexual relationships draw on a diverse and complex array of discursive positions regarding sex, relationships, and masculinity in making sense of their experiences of sex in later life. Older men are a heterogeneous group, and their experiences and understandings of sex do not simplistically follow "decline" or "success" narratives of aging. The findings of this research build upon and extend emerging research illustrating the centrality of intimacy to older men's sexual lives, while simultaneously highlighting the ways in which the body and discursive constructions of sex intersect to shape older men's sexual subjectivities.

People with Alzheimer's disease and their spouse-caregivers: differences in perceptions of sexual satisfaction?

Older informal caregivers aged 65+ years account for 34% of all carers in the USA (Family Caregivers Alliance, 2016), 22% in England and Wales (Carers UK, 2015), and 24% in Australia (Deloitte Access Economics, 2015). For many older carers, this means looking after their spouse or intimate partner who in many cases has dementia (Donnellan et al., 2015). As the incidence of dementia increases, the need to understand the impact of caring on these intimate relationships becomes more vital, so the experiences of spousal caregivers can be anticipated, validated, and supported. It is also important to understand the gender differences in these care relationships, so that education and services can be tailored to meet the different needs of men and women caregivers. Sexual activity in later life is associated with both mental and physical health (Ganong and Larson, 2011; Anderson, 2013), and is therefore, important to maintain, perhaps even in the context of caring for someone with dementia.

The Sex, Age, and Me study: recruitment and sampling for a large mixed-methods study of sexual health and relationships in an older Australian population.

Older people are often excluded from large studies of sexual health, as it is assumed that they are not having sex or are reluctant to talk about sensitive topics and are therefore difficult to recruit. We outline the sampling and recruitment strategies from a recent study on sexual health and relationships among older people. Sex, Age and Me was a nationwide Australian study that examined sexual health, relationship patterns, safer-sex practices and STI knowledge of Australians aged 60 years and over. The study used a mixed-methods approach to establish baseline levels of knowledge and to develop deeper insights into older adult's understandings and practices relating to sexual health. Data collection took place in 2015, with 2137 participants completing a quantitative survey and 53 participating in one-on-one semi-structured interviews. As the feasibility of this type of study has been largely untested until now, we provide detailed information on the study's recruitment strategies and methods. We also compare key characteristics of our sample with national estimates to assess its degree of representativeness. This study provides evidence to challenge the assumptions that older people will not take part in sexual health-related research and details a novel and successful way to recruit participants in this area.

Factors associated with depression in older carers.

OBJECTIVE: Depression is an adverse outcome frequently seen in carers. With the increasing ageing population and reliance on informal carers, this study aims to identify factors associated with depression in carers in the older age group, using factors that have not been previously investigated. METHODS: We conducted a cross-sectional analysis of 202 older carers using the Geriatric Depression scale, demographics, personality traits, attitudes to ageing and other carer characteristics. RESULTS: Increased hours spent caring and higher levels of neuroticism were all factors associated with depression. The care-recipient diagnosis, other personality traits, attitudes to ageing, leisure-physical activity (PA) and domestic-PA were not significantly associated with depression. CONCLUSIONS: These findings have important implications for interventions to target at-risk carers.

Videoconferencing and telementoring about dementia care: evaluation of a pilot model for sharing scarce old age psychiatry resources.

BACKGROUND: While videoconferencing, telementoring, and peer support have been shown to enhance services in some instances, there has been no research investigating the use of these technologies in supporting professionals managing clients with dementia. The objective of this research was to evaluate expansion of an old age psychiatry consultation service and pilot test a model to improve medical supervision and clinical governance for staff within regional and remote areas using remote information technology. METHODS: The design was a mixed methods (qualitative and quantitative) evaluation using before, mid-point and post-implementation semi-structured interviews and questionnaires to examine orientation, acceptance, and impact underpinned by theoretical approaches to evaluation. Education evaluations used a Likert style response template. Participants were 18 dementia service staff, including staff from linked services and old age psychiatrists. Qualitative interviews addressed the pilot implementation including: expectations, experiences, strategies for improving the pilot, and perceived impact on work practice and professional development opportunities. RESULTS: There was high satisfaction with the program. The case conference process contributed to perceived improved outcomes for clients, family, and staff. Clinicians perceived improvement in family carer and staff carer stress and their confidence in managing clients with behavioral and psychological symptoms of dementia (BPSD). Thematic analysis indicated that the pilot enhanced professional development, decreased travel time, and improved team cohesion. CONCLUSIONS: Given the increasing aging population in regional, rural, and remote areas, initiatives using videoconferencing and telementoring will help to develop a confident and skilled workforce. This pilot program was found to be acceptable and feasible. Potential benefits for clients and family carers should be examined in future resesarch.

Attitudes to aging in older carers - do they have a role in their well-being?

BACKGROUND: Attitudes to aging have been investigated in non-carer populations and found to have important relationships with physical and mental health. However, these have not been explored in an older carer sample, although it is becoming increasingly important to clarify variables which are linked with positive carer outcomes. This is one of the first studies to report on older carers, their attitudes to aging, and the relationship with carer-related factors. METHODS: A cross-sectional study of 202 carers with a mean age of 70.8 years was conducted in Victoria, Australia, using carer demographic data, carer factors such as depression (using the Geriatric Depression Scale), burden (using the Zarit Burden Inventory, ZBI), physical health, personality, and attitudes to aging (using the Attitudes to Aging Questionnaire, AAQ). Spearman rank correlation and hierarchical regression analyses were used. RESULTS: This study showed that carers had overall positive attitudes to aging inspite of their caring role. It also identified that carer factors including depression and burden contributed a significant amount of the variance to attitudes to aging in terms of physical change and psychosocial loss. Personality traits, specifically neuroticism, and extraversion, were also important contributors to attitudes to aging. CONCLUSIONS: Results from this study demonstrated that inspite of moderate levels of depression and spending significant time caring, carers reported positive attitudes to aging. Treating depression, decreasing burden, and investigating the benefits of caring may assist older carers maintain their well-being.

Caring for people with dementia in residential aged care: successes with a composite person-centered care model featuring Montessori-based activities.

Person-centered models of dementia care commonly merge aspects of existing models with additional influences from published and unpublished evidence and existing government policy. This study reports on the development and evaluation of one such composite model of person-centered dementia care, the ABLE model. The model was based on building the capacity and ability of residents living with dementia, using environmental changes, staff education and organizational and community engagement. Montessori principles were also used. The evaluation of the model employed mixed methods. Significant behavior changes were evident among residents of the dementia care Unit after the model was introduced, as were reductions in anti-psychotic and sedative medication. Staff reported increased knowledge about meeting the needs of people with dementia, and experienced organizational culture change that supported the ABLE model of care. Families were very satisfied with the changes.

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.

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.