Stephanie A. Ward’s research while affiliated with State Library of New South Wales and other places

Background The Australian Dementia Network (ADNeT) is a collaboration of dementia researchers and clinicians established in 2018. It includes a clinical quality registry that reports on diagnosis and early management of people with dementia or Mild Cognitive Impairment (MCI) across public, private, metropolitan and rural settings. Australia is multicultural and the registry collects information regarding cultural and linguistic diversity (CALD). The aim of this study was to determine if CALD status was associated with time to dementia diagnosis. Methods ADNeT registry data from March 2020 – Sept 2023 were analysed. Primary endpoint was time to diagnosis for three groups based on CALD status and preferred spoken language: non‐CALD; English‐speaking CALD; and non‐English‐speaking CALD. Descriptive statistics, univariate and multivariate regression analysis were undertaken for five outcome measures: (1) time from referral to diagnosis (2) time from referral to first appointment, (3) time from first appointment to diagnosis (4) age at referral, and (5) diagnostic outcome (dementia vs MCI). Results Of 3,634 participants, 2,817 (78%) were non‐CALD; 451 (12%) were English‐speaking CALD and 366 (10%) were non‐English speaking CALD. Overall median times were 131 days from referral to diagnosis, 75 days from referral to first appointment, and 28 days from first appointment to diagnosis. Both English and non‐English‐speaking CALD background were associated with longer time from referral to diagnosis (154/158 days vs 123 days for non‐CALD), and longer time from first appointment to diagnosis (46/70 days vs 18 days) (p<0.001), remaining significant after adjusting for demographic/health factors. There was no association between CALD and time from referral to first appointment. Non‐English‐speaking CALD background was also associated with older age at referral (80 years vs 78/77 years) and a higher likelihood of dementia diagnosis (75% vs 63/65%), although these differences disappeared after adjustment. Conclusion This large national study shows that cultural and linguistic diversity is associated with delayed diagnosis of dementia, with further research required regarding underlying causes. This has important implications for equity of care as it may preclude people from CALD backgrounds accessing novel disease modifying treatments. People from CALD backgrounds may specifically benefit from dementia diagnostic biomarkers to facilitate earlier diagnosis.

Real‐world data on the uptake, effectiveness and safety of new diagnostics and disease‐modifying (DMT) treatments for Alzheimer’s Disease (AD) are imperative. This can be achieved through patient registries. A major challenge is how to embed registry data capture into routine clinical practice. To optimize coverage and maintain data contribution over time, registry participation needs to create maximal benefits, yet impose minimal burdens, on clinical sites. In the experience of the Australian Dementia Network (ADNeT) Registry, it has been the unique insights that clinicians obtain into their own diagnostic practices that has incentivised ongoing participation. The ADNeT Registry collects data primarily to measure the quality of diagnosis and clinical care provided to people with either mild cognitive impairment or dementia and was pragmatically designed to be utilized in multiple diagnostic settings and by different clinical craft groups. Clinicians enter a brief minimum dataset, based upon routine clinical data, at the time of diagnosis. These data are augmented by the ADNeT Registry’s collection of patients and/or carer‐reported experience and outcome measures and will be further augmented by planned linkage with administrative datasets. By January 2024, the ADNeT Registry had collected data on over 4000 participants, from 66 sites, had issued 4 benchmarked site reports, and published 2 annual reports. Of this cohort, 75% of people with dementia had an AD subtype. At the national level, considerable variation exists in diagnostic time intervals, and in the use of functional neuroimaging and biomarkers. At the individual site level, clinicians report regularly comparing their individual data against Registry benchmarked data to review, and if some cases, improve, their diagnostic approaches. The Registry’s explicit focus on supporting clinicians is further enhanced by broader achievements of ADNeT, including the publication of memory clinic guidelines, streamlined processes for accessing clinical trials, and appropriate use recommendations for DMTs. Collectively, ADNeT and the ADNeT Registry provides a strong foundation for additional data capture on DMT prescription, safety, and outcome measures, with a design that helps ensure that collected data are truly reflective of the “real‐world”.

Objective To identify quality and safety indicators routinely used to monitor, evaluate, and improve care transitions for older adults globally. Design A scoping literature review. Setting and Participants This review identified indicators used internationally to monitor and evaluate the quality and safety of care transitions by older adults. Care transitions were defined as the transfer of health care at least once between care settings. Methods A search of academic and gray literature identified indicators that were publicly available, used routinely at the population level, and reported on since 2012. Indicators were summarized by care domain (ie, hospitalization, consumer experience, access/waiting times, communication, follow-up, and medication-related), type (structure, process, outcome), quality dimension (patient centeredness, timeliness, effectiveness, efficiency, safety, and equity), data collection approach, reporting strategies, and care settings involved. Results The review identified 361 quality indicators from 89 programs across 12 countries. Care domains included hospitalization (N = 112; 31.0%), consumer experience (N = 82; 22.7%), access/waiting times (N = 63; 17.5%), communication (N = 40; 11.1%), follow-up (N = 40; 11.1%), and medication-related (N = 24; 6.6%). Indicators measured outcomes (N = 227; 62.9%) or processes (N = 134; 37.1%) and represented the dimensions of patient centeredness (N = 155, 42.9%), timeliness (N = 91; 25.2%), and effectiveness (N = 87; 24.1%), efficiency (N = 18; 5.0%) and safety (N = 10; 2.8%). Most indicators were constructed from survey (N = 160; 44.3%) or administrative data (N = 138; 38.2%); 69% (N = 249) were publicly reported and 80% (N = 287) measured transitions related to acute settings. Conclusions and Implications Eighty-nine international programs routinely monitor the quality and safety of care transitions, and focus on the domains of hospitalization, access and waiting times, and communication. Considering the vulnerability of older adults as they transition across settings and providers, it is important to ensure holistic measurement of the quality of these care transitions to identify sub-optimal transitions, inform quality improvement, and ultimately improve outcomes for older adults.

Background The risk–benefit balance of statin use in healthy older people is uncertain. We describe the baseline characteristics of the STAREE (Statins in Reducing Events in the Elderly) trial, which is a randomized, double‐blind, placebo‐controlled trial among community‐dwelling older people; the trial evaluated the effect of atorvastatin 40 mg for the prevention of major cardiovascular events (cardiovascular death, nonfatal myocardial infarction or stroke), and on disability‐free survival (survival free of both dementia and persistent physical disability). Methods and Results STAREE enrolled people aged ≥70 years from 1583 general practices across Australia with no history of clinical cardiovascular disease, diabetes, or dementia. Baseline data collected included demographic, clinical, cognitive (Modified Mini‐Mental State Examination), psychological (Center for Epidemiologic Studies Short Depression Scale), lifestyle, medical, physical, blood and urine measures, and quality of life. Demographic and clinical characteristics of study participants were then compared with publicly available landmark statin trials. A total of 9971 participants were recruited (mean±SD age 74.7±4.5 years, 4023 (40%) ≥75 years, 52% women) between July 2015 and March 2023. The mean low‐density lipoprotein cholesterol was 3.27 mmol/L (SD=0.72; 126 mg/dL). Hypertension was reported by 43% of participants and the mean blood pressure was 136/80 mm Hg. Compared with previous landmark statin trials that included primary prevention cohorts, STAREE is unique in including such a large number of older (≥75 years) independent‐living people. Conclusions STAREE is the largest primary prevention trial of statins powered to address the important clinical outcomes of major cardiovascular events, disability‐free survival, and cognition in older people. Registration https://www.clinicaltrials.gov ; Unique identifier: NCT02099123.

Study Objectives Obstructive sleep apnea (OSA) may increase risk of dementia. A potential pathway for this risk is through cerebral small vessel disease (CSVD). In the context of an existing randomized trial of aspirin for primary prevention, we aimed to investigate OSA’s impact on CSVD imaging measures and explore whether aspirin effects these measures over 3 years that differ in the presence or absence of OSA. Methods A sub-study of the ASPirin in Reducing Events in the Elderly randomized placebo-controlled trial of low-dose aspirin. Community-dwelling participants aged 70 years and above, without cognitive impairment, cardiovascular disease or known OSA completed an unattended limited-channel sleep study that calculated the oxygen desaturation index and apnea-hypopnea index. At baseline and 3 years later, volumes of white matter hyperintensities (WMH) and silent brain infarctions (SBI) were measured on 1.5 Tesla brain magnetic resonance imaging, and retinal vessel calibers were calculated from retinal vascular imaging. Results Mild and moderate/severe OSA was detected in 48.9% and 29.9%, respectively, of the 311 participants, who had a mean age of 73.7 years (SD 3.4 years), 38.6% female. OSA of any severity did not associate with WMH volumes, SBI, nor with retinal vessel calibers at baseline, nor with change in these measures in the 277 participants with repeated measures acquired after 3 years. OSA of any severity did not interact with aspirin on change in these measures over 3 years. Conclusion In healthy older adults undiagnosed OSA was not associated with retinal vascular calibers and neuroimaging measures of CSVD.

In the Western Pacific Region, the prevalence of dementia is expected to increase, however, the diversity of the region is expected to present unique challenges. The region has varying levels of preparedness, with a limited number of countries having a specific national dementia plan and awareness campaigns. Diversity of risk and healthcare services within the region is exerting impact on diagnosis, treatment, care, and support, with most countries being under resourced. Similarly, the ability to monitor dementia-related indicators and progress research, particularly relating to treatment and clinical trial access needs to be addressed. Countries require comprehensive national plans that lay out how resources will be allocated to improve dementia literacy, train, and support carers, mobilise resources to reduce risk factors and improve research capabilities. These plans need to be informed by consumers and tailored to the region to develop an inclusive society for people living with dementia and their families.

Importance Obstructive sleep apnoea (OSA) may increase the risk of dementia, however, studies have reported variable findings. We investigated if undiagnosed OSA in healthy older adults is associated with cognitive decline, and whether low-dose aspirin could attenuate this. Methods This was conducted as a sub-study of the ASPirin in Reducing Events in the Elderly study. Participants were aged 70 years and above, free of dementia, cardiovascular disease, and known OSA. A limited-channel home sleep study calculated the oxygen desaturation index. Participants were randomised to daily aspirin 100 mg or placebo . Outcomes were the association of OSA, and the interaction of aspirin with OSA, on change in the Modified Mini-Mental State examination (3MS), a test of global cognition, over 3 years. Secondary outcomes were changes in domain specific cognitive tests. Analyses were adjusted for relevant demographic, lifestyle and cardiometabolic factors. Results Mild OSA, detected in 630 (49.0%) of participants, and moderate/severe OSA, detected in 405 (31.5%) of participants, were associated with lower 3MS scores over 3 years (mild OSA: β − 0.58, 95% CI −1.15 to −0.00, p=0.049; moderate/severe OSA: β −0.69, 95% CI-1.32 to −0.05, p=0.035), compared to the 250 (19.5%) participants without OSA. No associations of OSA with decline in domain-specific cognitive tests were observed. Interaction terms were not significant for the effects of aspirin with OSA on change in any cognitive test score. Conclusions OSA was associated with a small decline in global cognition over 3 years in this healthy older cohort. This decline was not attenuated by aspirin.

Objective The objective of this review is to identify quality indicators used to monitor the quality and safety of care provided to older people (≥ 65 years old) in 8 care settings: primary care; hospital/acute care; aged care (including residential aged care and home or community care); palliative care; rehabilitation care; care transitions; dementia care; and care in rural areas. Introduction There is a need for high-quality, holistic, person-centered aged and health care for older people. Older people receive care across multiple care settings, and population-level monitoring of quality and safety of care across settings represents a significant challenge. Inclusion criteria National and international quality indicators used to monitor and evaluate quality and safety of care at the population level for older individuals in the 8 key care settings will be considered for inclusion. English-language quantitative and mixed method studies published from 2012 will be considered. Methods Academic (MEDLINE, Embase) and gray (government websites, clinical guidelines, Google) literature searches will be conducted. A standardized data extraction tool will be used to describe the identified quality indicators and associated tools. Quality indicators will be categorized by key domains (ie, pain, function, consumer experience, service delivery), quality indicator type (structure, process, outcome) and the Institute of Medicine’s 6 dimensions of care quality (eg, efficiency, effectiveness, appropriateness, accessibility, acceptability/person-centered, safety). The scoping review will be conducted in accordance with the JBI methodology for scoping reviews and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Review Registration Open Science Framework osf.io/8czun

Importance Age-related macular degeneration (AMD) is the leading cause of irreversible vision loss in old age. There is no proven intervention to prevent AMD and, apart from lifestyle, nutritional, and supplement advice, there is no intervention to delay its progression. Objective To determine the impact of long-term low-dose aspirin on the incidence and progression of AMD. Design, Setting and Participants The Aspirin in Reducing Events in the Elderly–AMD (ASPREE-AMD) study was an Australian-based substudy of the ASPREE trial, a multicenter, international, randomized, double-masked, placebo-clinical trial investigating the efficacy of low-dose aspirin in prolonging disability-free survival among older individuals. Retinal photography was conducted at baseline from March 2010 to January 2015, then 3 and 5 years after randomization. AMD status was determined using color retinal images and treatment records. Australian participants in ASPREE aged 70 years and older without dementia, independence-limiting physical disability, cardiovascular disease, or chronic illness limiting 5-year survival and with gradable retinal images at baseline were included. Data were analyzed from December 2022 to December 2023. Interventions Aspirin (100 mg daily, enteric coated) or placebo. Main Outcomes and Measures Incidence of AMD and progression from early/intermediate to late AMD. Outcomes were analyzed by modified intention-to-treat analysis. Results A total of 4993 participants were enrolled in this substudy. Baseline characteristics were similar between groups. At the time of sponsor-determined trial termination, retinal follow-up data were available for 3208 participants, 3171 of whom were analyzed for AMD incidence and progression, with a median (IQR) age of 73.5 (71.5-76.4) years and even sex distribution (1619 [51%] female). Median (IQR) follow-up time was 3.1 (3.0-3.5) years. Cumulative AMD incidence was 195 of 1004 (19.4%) in the aspirin group and 187 of 979 (19.1%) in the placebo group (relative risk [RR], 1.02; 95% CI, 0.85-1.22; P = .86). Cumulative progression from early/intermediate AMD to late AMD was observed in 14 of 615 (2.3%) participants in the aspirin group and 18 of 573 (3.1%) in the placebo group (RR, 0.72; 95% CI, 0.36-1.44; P = .36). Conclusions and Relevance In this trial, low-dose aspirin administered for 3 years did not affect the incidence of AMD. The evidence was weaker for progression of AMD due to low number of progressed cases. Overall, these results do not support suggestion that low-dose daily aspirin prevents the development or progression of AMD. Trial Registration anzctr.org Identifier: ACTRN12613000755730

Objectives Dementia guidelines recommend antipsychotics are only used for behavioral and psychological symptoms when non-drug interventions fail, and to regularly review use. Population-level clinical quality indicators (CQIs) for dementia care in permanent residential aged care (PRAC) typically monitor prevalence of antipsychotic use but not prolonged use. This study aimed to develop a CQI for antipsychotic use >90 days and examine trends, associated factors, and variation in CQI incidence; and examine duration of the first episode of use among individuals with dementia accessing home care packages (HCPs) or PRAC. Methods Retrospective cohort study, including older individuals with dementia who accessed HCPs (n = 50,257) or PRAC (n = 250,196). Trends in annual CQI incidence (2011–12 to 2015–16) and associated factors were determined using Poisson regression. Funnel plots examined geographical and facility variation. Time to antipsychotic discontinuation was estimated among new antipsychotic users accessing HCP (n = 2367) and PRAC (n = 15,597) using the cumulative incidence function. Results Between 2011–12 and 2015–16, antipsychotic use for >90 days decreased in HCP recipients from 10.7% (95% CI 10.2–11.1) to 10.1% (95% CI 9.6–10.5, adjusted incidence rate ratio (aIRR) 0.97 (95% CI 0.95–0.98)), and in PRAC residents from 24.5% (95% CI 24.2–24.7) to 21.8% (95% CI 21.5–22.0, aIRR 0.97 (95% CI 0.96–0.98)). Prior antipsychotic use (both cohorts) and being male and greater socioeconomic disadvantage (PRAC cohort) were associated with higher CQI incidence. Little geographical/facility variation was observed. Median treatment duration in HCP and PRAC was 334 (interquartile range [IQR] 108–958) and 555 (IQR 197–1239) days, respectively. Conclusions While small decreases in antipsychotic use >90 days were observed between 2011–12 and 2015–16, findings suggest antipsychotic use among aged care recipients with dementia can be further minimized.