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Background: Over 50% of dementia in NZ may be due to high prevalence of risk factors such as hypertension, diabetes and cardiovascular disease. If so, a better understanding of the relationships may present ways to mitigate the risk of dementia. Community‐based epidemiological studies would provide definitive evidence but are resource‐intensive so we need to explore alternative sources of data such as routinely collected health information. The overarching aim of our research is to use a machine learning model to identify population groups at high risk of cognitive decline and/or dementia. But first we need to gauge the appetite of service users to have their personal data used in this way. This study aimed to explore the attitudes and preferences of people aged 55+ living in Counties Manukau regarding the use of their de‐identified health data and understanding their concerns and degree of comfort in different scenarios. Method: An anonymous online survey was conducted with people aged 55+ from NZ European, Māori, Pacific, Chinese and Indian communities currently engaged with older adult health services in Counties Manukau District in 2022. We offered service users the opportunity to complete the survey by telephone if preferred, and the opportunity to be interviewed in languages other than English to ensure adequate representation of the local population. Result: Over 85% of the participants were aware of how their health information was used for service development and assessing population trends, and about 80% were comfortable or very comfortable with data being used in this way, assuming data were stored securely and confidentiality was assured. Participants generally felt that patients' permission was required if data were being analysed by people other than health professionals or being used by commercial companies, and that there should be transparency about these uses. There were some specific cultural concerns about patients' data being used after their death. Conclusion: This study supports the idea that the local population are generally supportive of researchers using their de‐identified routinely collected data for research purposes that will benefit the population from which the data were taken, but specific cultural concerns need to be addressed. [ABSTRACT FROM AUTHOR]

Background: To support informal dementia carers, the World Health Organization (WHO) developed 'iSupport for Dementia' online skills training program, culturally adaptable to local contexts. Several WHO Member States are adapting the program. This study was conducted to draw lessons about iSupport adaptation in Australia, Brazil, Indonesia, New Zealand, and Qatar. Method: A short questionnaire regarding modifications made to the WHO iSupport adaptation methodology, changes made to the WHO iSupport manual, and the enablers of and barriers to the iSupport adaptation process was sent to the iSupport adaptation research teams in the five countries. Data were analysed thematically. Result: Countries modified the WHO adaptation methodology, undertaking more focus group discussions (FGDs) than recommended. Prior to the FGDs, iSupport manual was divided into smaller, more manageable sections. Individual participants only reviewed a section rather than the entire manual to reduce burden. Common adaptation includes changes to language and terminology used in the manual to be more empathetic and person‐centred. In Australia, and later New Zealand, an additional module was added about person‐centred care principles and access to formal care services. In Brazil, additional topics such as fall prevention were suggested. Four countries identified short video clips as a method to increase usability of and real‐time access to the iSupport manual. In Australia, scenarios from the Australian adapted iSupport manual were translated into scripts then storyboards and 50 animations were produced via an iterative, ongoing stakeholder feedback process. Themes emerged include an emphasis on carers understanding of the disease, validating their experiences and emotions and creating authentic content that genuinely reflects caring for someone with dementia. In New Zealand and Indonesia, Australian animations were used and adjusted to suit the local contexts through modifications to terminology and animation characters. Qatar developed five short videos, each reflecting a module of the iSupport, to encourage carers to seek further information in the adapted iSupport program. Conclusion: Modifications of the current WHO iSupport Adaptation and Implementation Guidelines are needed. There is a need to improve the accessibility and usability of the iSupport online program, with the inclusion of short video clips being one possible solution. [ABSTRACT FROM AUTHOR]

Background: The Empowering Dementia Carers in an iSupport Virtual Assistant (e‐DIVA) project aims to develop a website based on the World Health Organisation's iSupport to support carers in Aotearoa New Zealand (NZ), Australia, Indonesia, and Vietnam. The website will be supplemented with culturally‐appropriate videos showing different scenarios in caring. As NZ had limited funding for the adaptation process, we decided to utilise the videos already developed by the Australian team and modify them to be locally‐relevant to NZ culture. There are some similarities in the culture and ethnic populations of the two countries, but also considerable differences. Here we aim to understand the need of cultural adaptation and describe the process of developing locally‐relevant videos for self‐paced dementia training to support carers in NZ. Method: We worked with carers and social and health care practitioners to adapt the iSupport manual for use in NZ. We conducted separate focus groups with carers and care practitioners to agree on adapted videos for use in different modules in iSupport website. We reviewed the scripts and visuals and discussed how to ensure the content (scenario, dialogue) and delivery (music, visuals) were acceptable and relatable for NZ carers from different backgrounds. To adapt for Māori carers, we took the manual and videos that had been adapted for non‐Māori, and conducted focus groups with Māori carers and care practitioners to produce content that was culturally‐appropriate and Māori‐friendly. Result: Using co‐design and consultation with carers and care professionals from specific cultures, we made changes to the backgrounds and visual representation of the characters to better reflect NZ culture, and ensuring inclusion and representation of Māori and Pasifika in the videos. We will present the adapted videos in AAIC 2023 next to the poster. Conclusion: Adapting existing videos can be a low‐cost approach to provide supporting media for an online training tool such as iSupport. [ABSTRACT FROM AUTHOR]

Background: The World Health Organisation (WHO) has developed 'iSupport for Dementia', a self‐paced training for family carers of people with dementia. Empowering Dementia Carers in an iSupport Virtual Assistant (e‐DIVA) project aims to develop a website based on iSupport to support carers in Aotearoa New Zealand (NZ), Australia, Indonesia, and Vietnam. We aim to understand carers' perspectives on iSupport to inform the NZ adaptation. Method: We recruited primary unpaid carers through a local non‐government dementia support organisation. We included carers who were aged 18 years old or over, caring for a person living with dementia for at least six months, able to speak English and use internet for video conference. Participants were provided with the original iSupport manual to review for a month. We conducted online focus group discussions with the carers (3‐4 per group) who provided feedback on the original manual. Each group met twice for two hours. The meetings were recorded, transcribed verbatim, and analysed thematically. We then used the results of the thematic analysis to inform the development of the iSupport‐VA NZ website and supporting materials such as videos. Result: Seven carers participated in this study. We identified common feedback which could be grouped into content, delivery, and potential use beyond immediate family carers. Based on the feedback, we split Module 1 into four sections, adding contents on optimising brain health, person‐centred care, and planning for the future. We also rearranged Modules 4 and 5 to start with information that all carers need then moving on to information more relevant to mid‐to‐late stage dementia. We also made changes in the illustration and language used. We amended the school‐like features (right‐or‐wrong approach), but kept the reflective activities. Carers also discussed the possibility of using iSupport as resources for extended family not involved in care and for care professionals. Conclusion: Several changes were required to adapt iSupport for use in NZ. This tool has some potentials for wider use beyond unpaid family carers. A separate research with Māori carers using a similar method started in 2023. [ABSTRACT FROM AUTHOR]

The article offers insight to a case Brooke S.B. v. Elizabeth A. C.C. addressing estranged same-sex parents. The case concerned a woman who raised a boy with her former partner, the child's biological mother, wherein the nonbiological mother wanted joint custody and visitation rights but was turned away by the New York Family Court and her motherhood was denied because she didn't marry her partner or go through a formal adoption process.

Background: Due to the ageing population in New Zealand (NZ), there will be more people with dementia in need of long‐term care. As a culturally diverse country, the characteristics of different ethnicities need to be understood in order to provide culturally appropriate care. This study aims to compare: 1) the sociodemographic and clinical characteristics, and 2) the level of care home placement in Asian and NZ European people with moderate to severe cognitive impairment living in long‐term care facilities. Method: The sample included individuals aged≥65 and self‐identified as Asian or NZ European who had received the Long‐Term Care Facility version of interRAI, a standardised and comprehensive geriatric assessment, in 2018. All participants had moderate to severe cognitive impairment defined by a score of ≥ 3 in the Cognitive Performance Scale (range 0‐6). The analysis examined the association of ethnic group with sociodemographic and clinical variables and level of care home placement. Result: The sample included 7298 older adults (441 Asians, 6857 NZ Europeans). The average age of the sample was 84.1 SD±8.7 (Asian= 83.7 SD±7.7, European= 84.1 SD±8.8, p=0.29), and 57.5% were female (Asian=62.6%, European=57.2%, p=0.08). Logistic regression showed that, compared with NZ Europeans, Asians were more likely to have untreated diabetes (OR=2.14, 95%CI=1.55–2.96); less likely to be overweight/obese (BMI 25–29: OR=0.54, 95%CI=0.41–0.73; BMI 30–40: OR=0.25, 95%CI=0.13–0.46), have hearing loss (OR=0.55, 95%CI=0.44–0.69) and had fewer medical comorbidities (OR=0.39, 95%CI=0.24–0.65). Despite lower comorbidity, Asians with cognitive impairment were more likely to be placed in hospital level care (OR=1.60, 95%CI=1.23–2.08) and less likely to be placed in dementia level of care (OR=0.53, 95%CI=0.36–0.77). Conclusion: The study results demonstrate differences in clinical characteristics and level of care home required for Asians and NZ Europeans living in NZ. Despite lower comorbidity, Asians with cognitive impairment were more likely to be placed in hospital level of care and less likely to be placed in dementia level of care. Additional studies are needed to understand this relationship, and the results may help to generate more culturally tailored health services aimed for people with cognitive impairment. [ABSTRACT FROM AUTHOR]

Background: Dementia describes a cluster of symptoms that includes memory loss; difficulties with thinking, problem solving, or language; and functional impairment. Dementia can be caused by a number of neurodegenerative diseases, such as Alzheimer disease and cerebrovascular disease. Currently in New Zealand, most of the systematically collected and detailed information on dementia is obtained through a suite of International Residential Assessment Instrument (interRAI) assessments, including the home care, contact assessment, and long-term care facility versions. These versions of interRAI are standardized comprehensive geriatric assessments. Patients are referred to have an interRAI assessment by the Needs Assessment and Service Coordination (NASC) services after a series of screening processes. Previous estimates of the prevalence and costs of dementia in New Zealand have been based on international studies with different populations and health and social care systems. This new local knowledge will have implications for estimating the demographic distribution and socioeconomic impact of dementia in New Zealand. Objective: This study investigates the prevalence of dementia, risk factors for dementia, and drivers of the informal cost of dementia among people registered in the NASC database in New Zealand. Methods: This study aims to analyze secondary data routinely collected by the NASC and interRAI (home care and contact assessment versions) databases between July 1, 2014, and July 1, 2019, in New Zealand. The databases will be linked to produce an integrated data set, which will be used to (1) investigate the sociodemographic and clinical risk factors associated with dementia and other neurological conditions, (2) estimate the prevalence of dementia using weighting methods for complex samples, and (3) identify the cost of informal care per client (in number of hours of care provided by unpaid carers) and the drivers of such costs. We will use design-based survey methods for the estimation of prevalence and generalized estimating equations for regression models and correlated and longitudinal data. Results: The results will provide much needed statistics regarding dementia prevalence and risk factors and the cost of informal care for people living with dementia in New Zealand. Potential health inequities for different ethnic groups will be highlighted, which can then be used by decision makers to inform the development of policy and practice. Conclusions: As of November 2020, there were no dementia prevalence studies or studies on informal care costs of dementia using national data from New Zealand. All existing studies have used data from other populations with substantially different demographic distributions. This study will give insight into the actual prevalence, risk factors, and informal care costs of dementia for the population with support needs in New Zealand. It will provide valuable information to improve health outcomes and better inform policy and planning. International Registered Report Identifier (IRRID): DERR1-10.2196/20225 JMIR Res Protoc 2021;10(1):e20225 doi:10.2196/20225 We help JMIR researchers to raise funds to pursue their research and development aimed at tackling important health and technology challenges. If you would like to show your support for this author, please donate using the button below. The funds raised will directly benefit the corresponding author of this article (minus 8% admin fees). Your donations will help this author to continue publishing open access papers in JMIR journals. Donations of over $100 may also be acknowledged in future publications. Suggested contribution levels: $20/$50/$100 [ABSTRACT FROM AUTHOR]

Background: Research is increasingly looking at how routinely collected health and social care data can be used to influence policy and service design, however the accuracy of such data in New Zealand is not known. Estimates suggest there are 62,000 people living with dementia in NZ, projected to reach 170,000 by 2050, however these figures are extrapolated from overseas prevalence data and do not take into account a variety of factors including NZ's unique demography, specifically Māori and Pacific Islanders who are at higher risk of dementia. Ideally, we would conduct a NZ based dementia prevalence study to obtain accurate data in all the major NZ ethnic groups, however the time and cost required to do this could be prohibitive. The use of routinely collected data may provide a cost‐effective alternative or parallel process to assess and monitor dementia in NZ, as well as examine other characteristics which potentially modify the risk of dementia and adverse outcomes. It is unclear whether routinely collected data is a good proxy‐measure, given approximately a third of people with dementia never receive a specialist diagnosis, dementia coding is poor even for those who are diagnosed, and there are inequities in how non‐European's access services. Method: A small‐scale dementia prevalence study is currently being completed in two geographic areas of South Auckland. Interviews are being completed by bi‐cultural bi‐lingual interviewers in a number of different ethnic groups including Asian, Maori, NZ European, and Pacific Islanders. Routinely collected health and social care data for the same geographic areas are also being collected. Result: Data collection is due to be completed in the first half of 2019, following which the sensitivity and positive predictive value of the routinely collected dataset will be assessed. Conclusion: Routinely collected data can be a rich source of information, particularly in populations which are little researched or where further information is needed. In NZ little is known about the extent of dementia, and whether this differs across the major ethnic groups. It is hoped that this research will provide a starting point for robust collection of dementia healthcare information in NZ. [ABSTRACT FROM AUTHOR]

Background: As the global population ages the burden of dementia is expected to rise across all cultures around the world. Much of the social sector costs of dementia care in high income countries is due to residential care. The aim of this study is to investigate the sociodemographic and clinical characteristics that predict care home placement in people diagnosed with dementia at a New Zealand memory service. Method: This cohort study used routinely collected clinical data gathered on referrals to the Memory Service at Middlemore Hospital in South Auckland between 2013 and 2019. Survival analysis was carried out using Cox regression models to determine significant risk factors and their associations with care home placement. Result: Comparison by ethnic group showed that NZ Europeans were on average older compared to Māori and Pacific Islanders, and were more likely to be living alone. As might be expected, age, more severe cognitive impairment and living alone were independently associated with increased risk of care home placement. After adjustment for these factors, Māori and Pacific Islanders were still less likely to be placed in a care home. People diagnosed with mixed dementia were more likely to be placed in a care home than those diagnosed with other dementia subtypes. Prescription of antipsychotics was highly associated with care home placement however we were unable to establish if antipsychotics were prescribed before or after placement. Conclusion: These data will help us to understand differences in adverse outcomes in people with dementia. The ability of Māori and Pacific Islanders to continue to care for their family member with dementia needs to be examined in more detail, as the findings might empower and enable other families to postpone care home placement. [ABSTRACT FROM AUTHOR]

Background: New Zealand is a multicultural multilingual country which brings challenges if we aim to conduct a dementia prevalence study that is representative of the whole of NZ population. The 10/66 dementia assessment tool was developed for use in non‐English speaking communities in order to accurately measure the prevalence of dementia. It is a language‐fair, culture‐fair questionnaire used in epidemiological studies of dementia. It has been translated and adapted into a culturally fair instrument for use with Māori, Fijian‐Indian, Samoan and Tongan elders living in New Zealand (NZ). Method: The translated and adapted 10/66 instrument versions were administered in the selected ethnicities. The results of the 10/66 dementia assessment it´s been tested in older people with and without dementia who have received a "gold standard" assessment in a local memory service in South Auckland. Each ethnic group included 15 subjects with dementia and 15 subjects without dementia. Result: Data is still being collected and analysed. The results will be presented at the conference, however the preliminary results for both Māori and Fijian‐Indian communities showed that the 10/66 dementia assessment has a sensitivity and specificity above 85%. Conclusion: We will test a culturally appropriate and scientifically rigorous method to calculate the prevalence of dementia in an inter‐ethnic community that includes Māori, Fijian‐Indian, Samoan and Tongan elders living in NZ. The information from this study can be used by the Ministry of Health to direct relevant resources towards raising awareness, reducing stigma, improving treatment and developing culturally appropriate dementia care services. [ABSTRACT FROM AUTHOR]