Kathleen Doherty

Purpose: Informal carers (‘proxies’) are often asked to report on the health of individuals who cannot self-report, either from their own (‘proxy-proxy’) or the patient’s (‘proxy-person’) perspectives. It remains unclear which perspective proxies find most useful. Understanding this is important for designing measures that proxies can complete. We conducted an exploratory study on which perspective proxies find most useful and why, when reporting pain and physical function in dementia and symptoms in multiple sclerosis (MS). Methods: This study used data from two cross-sectional online surveys: one for proxies of people with MS and another for people with dementia. Proxies were asked to indicate which perspective they found most useful and why for communicating symptoms in MS, and pain or physical function in dementia, to healthcare professionals (HCPs). Quantitative responses were summarised using percentages; qualitative responses were analysed using content analysis. Results: 55 proxies reported on MS symptoms, 29 on pain in dementia, and 33 on physical function in dementia. The most selected perspectives were: 35% (19/55) proxy-proxy for MS symptoms, 38% (11/29) proxy-person for pain and 39% (13/33) either of the perspectives for physical function. Proxy-person was valued for empathy and person-centredness, especially in reporting pain and MS symptoms. Proxy-proxy was appreciated for objectivity and reducing conflict, particularly in physical function. Using either perspective was considered most useful for balancing views and reducing misinterpretation in both conditions. Conclusion: Proxies’ most useful perspectives vary slightly by domain and condition. Incorporating an understanding of how proxies approach the challenge of reporting may improve measure design.

Objective: This study examined the associations between hearing loss (HL) and other modifiable dementia risk factors in adults aged 50 years or older living in Tasmania and explored the effects of corrected versus uncorrected HL on these factors. Methods: A cross‐sectional study design using an online survey categorised participants as No‐HL, HL‐corrected or HL‐uncorrected. Logistic regression estimated the odds of being in higher dementia risk categories. Results: The HL‐corrected group was more likely to be in the low‐risk alcohol group (OR = 0.567, 95% CI: 0.468–0.687), 28% less likely for high cholesterol (OR = 0.722, 95% CI: 0.571–0.913) and 26% less likely for diabetes (OR = 0.743, 95% CI: 0.582–0.948). They also had lower odds than the HL‐uncorrected group for alcohol risk (OR = 0.652, 95% CI: 0.508–0.837). Conclusions: Corrected HL is associated with reduced odds of higher‐risk categories for diabetes, alcohol use and high cholesterol.

Dementia is a progressive condition that can affect memory, thinking and communication in different ways. As a person’s communication patterns and needs change over time, care partners may need to adapt their approaches to continue supporting meaningful interactions and connection. Education to enhance the confidence and competence of care partners is therefore essential. This study evaluated an online first-year university unit designed to improve communication knowledge and skills in the context of dementia care. Using a pre-post survey design, the study integrated quantitative and qualitative data to assess changes in participants’ self-rated communication knowledge and confidence, as well as perceived impacts on practice. Quantitative measures revealed significant improvements in all assessed domains, with p -values <.001 and effect sizes ranging from moderate to very large (Glass’s Δ = 0.57–1.51). Qualitative findings supported these outcomes, with participants reporting enhanced communication practices, more person-centred care approaches, and greater knowledge sharing. These results highlight the value of targeted, dementia-specific education in fostering meaningful changes in communication and care delivery. The study also outlines practical implications for research and practice.

Purpose: Patient-reported outcome measures are often administered with specific recall periods to standardise reporting. However, research on recall periods in proxy reporting is limited. This study sought to explore (1) how informal carers interpret the “last 7 days” recall period of the EQ health and well-being instrument (EQ-HWB)-9 and (2) the perspective they adopt when completing the measure to report on the health and well-being of persons with dementia. Methods: A qualitative, descriptive study was conducted. Convenience sampling was used for recruitment. We interviewed informal carers of persons with dementia in Australia using semi-structured cognitive interviews. Participants were asked to think aloud when completing the EQ-HWB-9, and three additional positively-framed questions from the EQ-HWB. Thematic analysis was used, where transcripts were inductively coded to capture new insights and deductively coded as guided by the EQ-HWB-9 questions. Results: Nineteen carers completed interviews. Carers used two main retrieval strategies: supplementing recent observations with key events or self-report occurring slightly outside the recall period, and drawing on the past to contextualise recent behaviours. All participants used their own observations and opinions of the person with dementia (“proxy–proxy perspective”). When questions about the person’s feelings were difficult to answer, carers relied on various observable behaviours as indirect indicators. Nearly half also imagined how the person might answer (“proxy–patient perspective”), even if they sometimes disagreed with the person’s self-assessment. Conclusion: The 7-day recall period for the EQ-HWB-9 was more consistently adhered to for observable aspects of health. Wording changes may be needed to support consistent use, particularly for less observable items. Challenges in perspective-taking and adherence were also identified, suggesting areas to address in instructions.

The Understanding Traumatic Brain Injury Massive Open Online Course (TBI MOOC) was developed to increase TBI knowledge and reduce misconceptions of TBI in the community. This study assessed participant knowledge of TBI across three domains: 1. Perceptions of concussion, 2. Emotional and Behavioral changes, and 3. Recovery after TBI prior to and after completing the March 2023 iteration of the Understanding TBI MOOC using a modified version of the Common Misconceptions about TBI survey. Participants (n = 903) who completed both pre- and post-course surveys had lower baseline knowledge scores about Recovery after TBI, than scores for Perceptions of concussion and Emotional and behavioral changes. Completion of the Understanding TBI MOOC led to an increase in overall survey scores and when broken down into sub-scales regardless of participant demographics or experiences. The Understanding TBI MOOC improved survey scores across all demographics and experiences indicating that the MOOC is an effective tool to improve knowledge about TBI in the community.

Issue Addressed: This study explores how community health and social service providers in Tasmania perceive local health challenges, navigate system barriers, and support socioeconomically disadvantaged populations. In the context of Tasmania's ongoing public health reform, these perspectives are critical for shaping equitable strategies grounded in lived experience. Method: Semi‐structured interviews were conducted with leaders from diverse health and social service organisations in southern Tasmania. Analysis combined inductive thematic coding with a critical realist framework to map relationships between the local context, mechanisms of change, and outcomes. Results: Health risks and chronic conditions are closely entwined with socioeconomic disadvantage, unmet basic needs, and systemic challenges. Providers responded with adaptive, community‐based strategies emphasising trust, accessibility, and contextual sensitivity. Yet, these mechanisms were constrained by limited resources, low health literacy, and broader contextual barriers, producing mixed outcomes ranging from engagement and empowerment to persistent disengagement and cycles of poor health. Conclusion: Community health and social service providers are essential intermediaries, bridging gaps through integrated, localised programs. Findings support Tasmania's vision for an integrated wellbeing approach and highlight the need for greater investments in prevention, stronger local governance and coordination, and strategies that address the structural determinants of health and enhanced community participation. So What?: This study extends Tasmanian health promotion scholarship by foregrounding provider perspectives and provides a unique system‐level account of how providers adapt to entrenched disadvantage. It also demonstrates the value of a critical realist lens for understanding cycles of disadvantage. Together, these insights offer practical guidance for equity‐oriented public health reform.

South Asian migrants in Australia are a diverse group, with significant differences in history, culture, language, income, education, and other sociodemographic factors. However, these migrants are often studied as one group in health research. The aim of this study was to describe modifiable dementia risk factors in South Asian migrants, ≥ 50 years, from Bhutan, Nepal, Afghanistan, and India. A cross-sectional study was conducted with South Asian migrants from four countries, now residing in Tasmania. Data were collected through survey interviews from October 2023 to August 2024. Differences in modifiable dementia risk factors between groups, based on country of birth, were estimated. 146 South Asian participants completed the survey (mean age 60.7 (SD = 10.1); 57.5% female); 54 were from Bhutan, 52 from Nepal, 22 from Afghanistan, and 18 from India. Afghan respondents had higher risks than Indian and Nepali respondents for hypertension (73.5% vs. 2.5%, 1.1%), hypercholesterolemia (74.5% vs. 14.2%, 5.4%), and diabetes (71.3% vs. 14.7%, 6.7%). Bhutanese respondents had higher risks than Indian and Nepali respondents for hypertension (34.1% vs. 2.5%, 1.1%), hypercholesteremia (61.0% vs. 14.2%, 5.4%), and diabetes (63.6% vs. 14.7%, 6.7%). A greater proportion of respondents from Afghanistan and Bhutan reported a higher risk of hypertension, hypercholesterolemia, and diabetes than those from India and Nepal. These findings highlight the importance of data stratification within these migrant groups to ensure more precise risk assessment and targeted interventions.

Background: Informal carers (‘proxies’), who typically provide unpaid care and have a personal relationship with the care recipient, are often asked to report on the health of individuals who are unable to self-report. However, this task is not without its challenges. Little is known about how proxies approach this task, which poses challenges for optimal questionnaire design. Purpose: The review had three aims: (1) to identify the questionnaire perspective instructions provided to proxies i.e., whether the proxy was asked to answer from their own (proxy–proxy) or the person’s (proxy–patient) perspective when reporting, (2) identify which perspective instruction the proxies followed, if reported, and (3) what information, if any, was captured about the proxy’s experience of reporting about someone else. In the proxy–proxy perspective, proxies report from their own perspective, but in the proxy–patient perspective they report from the perspective of the person living with the condition. Methods: A systematic search was conducted across Medline, Psych Info, CINAHL, and Embase. Only published articles meeting the criteria of informal carers providing proxy reports for adults were considered. Results: Of 5816 publications, 60 articles were eligible for full-text review, and 12 were included for data extraction. Instructions varied, with proxies asked to adopt both proxy–proxy and proxy–patient perspectives in eight studies and only the proxy–patient in four of them. Whether proxies followed the provided instructions consistently is not known. Proxies’ reporting experiences were not reported in the included studies. Conclusion: Proxies are provided with different perspective instructions, but proxy adherence to instructions is not known. Additionally, proxy reporting experience was not described. Providing clear instructions, evaulating proxy adherence to instructions and collecting proxies’ reporting experiences can inform optimal questionnaire design to help proxies better report about the health of others. Review registration: Registered at open science framework: https://osf.io/j4t87.

Dementia is one of the fastest emerging global public health concerns today, as the World Health Organisation has predicted that the number of cases will triple from 55 million in 2023 to 152 million by 2050. Current evidence indicates that approximately 45% of dementia cases can be prevented or delayed by acting on potentially modifiable risk factors. However, public knowledge regarding this remains unknown in numerous poorly resourced countries, including Nepal, where the prevalence of dementia continues to increase. The lack of availability of dementia knowledge or risk-measuring tools in the native language may be accountable for this identified gap. Thus, our study aimed to translate and culturally adopt two significant measuring tools, KoDeRR, which measures the Knowledge of Dementia Risk Reduction and the DRP, which generates a Dementia Risk Profile focusing on 9 modifiable risk factors identified by WHO. KoDeRR and DRP have been translated and adapted into Nepali following the TRAPD protocol. Cognitive interviews were then conducted with five bilingual individuals to pre-test KoDeRR and DRP for cultural appropriateness, face validity, and appropriateness of language usage. Certain terms, including dementia, do not exist in Nepali, and some English words do not have direct translation. Similarly, some English words must be translated into multiple Nepali words to suit audiences from different literacy levels and various regions of Nepal. It is essential to be mindful of the choice of words used in the tools since intergenerational language disparities exist in Nepali-speaking communities, and the cultural appropriateness of the language used can vary from one language to another. Translating and adapting dementia survey tools into non-English languages is challenging and time-consuming. Despite these challenges, translating and adapting measuring tools such as KoDeRR and DRP in non-English languages will facilitate researchers’ understanding of risk reduction knowledge and the risk profile of diverse communities.

Designing effective public health messages is challenging, particularly when communicating complex and relatively new health messages such as dementia risk prevention which are still largely unfamiliar to the public. The accessibility of these messages, especially for individuals who speak English as an additional language, remains uncertain in large scale educational interventions. A key strategy to enhance the communication of evidence-based information is to co-design infographics that optimize the accessibility and impact of visual health messages. This paper reports on the co-design process of infographing dementia prevention messages. Qualitative data were analyzed using reflective thematic analysis to generate three themes reflecting the message design preferences of participants: "all hands on deck," "charting the course," and "get on board." This work supports the crucial need to engage the target audience via co-design when creating visual messages as meaningful and accessible educational tools that will resonate with the intended audience. Doing so may help health communicators navigate the creation of visual messages across diverse health domains and populations.