Results of inaugural international Down Syndrome Societal Services and Supports survey.

PURPOSE: We previously designed the Down Syndrome Societal Services and Supports Survey (DS-4S) to measure country-specific supports for people with Down syndrome (DS) across multiple life domains (healthcare, education, policy, independence, and community inclusion). We now report and analyze the results. METHODS: We partnered with international DS consortia, who distributed the DS-4S to 154 cumulative members representing over 100 countries. Organizations were included if they had a holistic focus on the lives of people with DS and if at least 50% of their members either have DS or are family members of people with DS. Factor analysis was used to analyze the results. RESULTS: We received survey responses from 55 different organizations in 50 countries who met inclusion criteria. Each country had complete data for at least 4 of the 5 domains. The lowest 5 scores were from countries in Africa and Asia; the highest 5 scores were in Europe and North America. CONCLUSION: The responses to the DS-4S stratified countries within each surveyed domain. The DS-4S can now be used to track countries' progress over time and to determine which countries have best practices that might be replicated. We will publish the results and update them biennially at www.DownSyndromeQualityOfLife.com.

Designing an international survey for organisations serving people with Down syndrome.

BACKGROUND: Down syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance. METHOD: We formed a geographically diverse group of physicians, family members of people with Down syndrome, and members of Down syndrome not-for-profit organisations to create a survey of societal services and supports. We used a modified Delphi method and disseminated the survey to Down syndrome non-profit organisations worldwide. RESULTS: Our survey consists of 61 items categorised within five domains: Education, Community Inclusion, Independence, Healthcare, and Social and Policy Issues. CONCLUSIONS: We developed a survey to measure societal services and supports available to people with Down syndrome as perceived by organisational leaders. Our methods might serve as a blueprint for other populations of people with intellectual and developmental disabilities.

Estimation of the number of people with Down syndrome in Australia and New Zealand.

PURPOSE: Previous research estimated the effect of selective terminations on birth prevalence and population prevalence of people with Down syndrome (DS) in the United States and Europe. This study provides comparative data from Australia and New Zealand. METHOD: The number of live births (LBs) with DS-in the absence of DS-related terminations of pregnancy-was estimated on the maternal age distribution in the general population. Actual LBs were modeled on registry data. We applied constructed survival curves to annual LBs to predict population numbers. RESULTS: For 2016-2020, we estimated 265 annual LBs with DS (1 in 1158) in Australia and 41 annual LBs (1 in 1450) in New Zealand. For this period, the reduction percentage-the net result of DS-related terminations on LB prevalence-was estimated at 66% for Australia, 71% for New Zealand, 62% for Europe (excluding the former East Bloc), and only 32% for the United States. CONCLUSION: The total population of people with DS has been decreasing since 2000 in Europe (West Bloc) and 2011 in New Zealand owing, in large part, to increased selective terminations. By contrast, the population continues to increase, as of 2020, in Australia and the United States.

Dementia attitudes and help-seeking intentions: an investigation of responses to two scenarios of an experience of the early signs of dementia.

OBJECTIVES: To investigate associations between dementia-attitudes and help-seeking intentions. METHOD: An online survey of 611 Australian adults (45-60 years) assessed dementia-related attitudes and help-seeking intentions in response to two scenarios of an experience of early dementia: for themselves (Scenario 1); and for a significant other (proxy help-seeking) (Scenario 2). Logistic regression models examined the relationship between four dementia-related attitudes (labelled Personal Avoidance, Fear of Labelling, Fear of Discrimination and Person Centredness) and help-seeking intentions. RESULTS: Most participants indicated they would seek help from a general practitioner (GP) for themselves (82.2%) or for a proxy (78.7%) in response to the scenarios. Whilst only 7.2% indicated they would seek help from no-one, 21.3% would delay seeking help. In response to Scenario 1, Personal Avoidance and Fear of Labelling were associated with intentions to delay help-seeking. Fear of both Labelling and Discrimination were associated with intentions to seek help from no-one. In response to Scenario 2, Personal Avoidance was associated with intentions to delay proxy help-seeking and a reduced likelihood of seeking help by phone or and with Fear of Discrimination, via a GP. Fear of Labelling was also associated with an intention to delay proxy help-seeking. CONCLUSION: Efforts to improve help-seeking for dementia should address attitudes relating to stigma including negative labelling and a desire for the avoidance of people with dementia. Fears relating to discrimination indicate a need to build public confidence regarding the capacity of the health and workforce sectors to support people with dementia ethically and appropriately.

Correlates of dementia attitudes in a sample of middle-aged Australian adults.

AIMS: To examine sociodemographic factors associated with attitudes regarding dementia. METHOD: A cross-sectional, convenience sample of 616 adults aged 40-65 years completed an online survey examining sociodemographic factors and dementia attitudes. The associations between sociodemographic variables and dementia attitudes were examined using general linear modelling. RESULTS: Four attitudinal factors were identified. Three were associated with negative attitudes (Personal Avoidance, Fear of Labelling and Fear of Discrimination) and one with more positive attitudes (Person Centredness). Demographic factors (e.g. age, sex, education) were significantly associated with some attitudinal factors. For example, men (P = 0.001) and individuals with lower education levels (P = 0.03) had higher scores on the Personal Avoidance factor. CONCLUSIONS: This study is the first to examine correlates of attitudes towards dementia in an Australian sample. Future research could improve understanding of distinct factors associated with dementia and lead to strategies to reduce stigmatised views of people with dementia in the community.

Determinants of retirement timing expectations in the United States and Australia: a cross-national comparison of the effects of health and retirement benefit policies on retirement timing decisions.

Data from the U.S. Health and Retirement Study (N = 2,589) and the Australian Household Income and Labour Dynamics survey (N = 1,760) were used to compare the macro-level policy frameworks on individual retirement timing expectations for pre-baby boomers (61+ years) and early baby boomers (45 to 60 years). Australian workers reported younger expected age of retirement compared to the U.S. sample. Reporting poor health was more strongly associated with younger expected retirement age in the United States than in Australia. Cohort and gender differences in the United States were found for the effect of private health insurance on younger expected age at retirement. Our results draw attention to how cross-national comparisons can inform us on the effects of policies on retirement expectations among older workers.

Age differences in output-monitoring accuracy.

Output monitoring refers to memory for whether an intended action has been completed. Failures in output monitoring can lead to action repetitions or action omissions. Output monitoring is difficult for both younger and older adults, but few studies have examined age differences in output monitoring. Two experiments using a picture-based prospective memory task with an output-monitoring component were conducted to investigate the role of increased contextual detail and pre-exposure on output-monitoring accuracy in younger and older adults. Across the two experimental manipulations older adults demonstrated less accurate output monitoring by primarily committing errors of repetition. Pre-exposure to targets resulted in worse output-monitoring accuracy for both younger and older adults.