Exploring older peoples' attitudes and preferences around the use of their healthcare information.

AIMS: Routinely collected health data can provide rich information for research and epidemiological monitoring of different diseases, but using the data presents many challenges. This study aims to explore the attitudes and preferences of people aged 55 and over regarding the use of their de-identified health data, and their concerns and comfort in different scenarios. METHODS: An anonymous online survey was conducted with people aged 55 and over currently engaged with health services in a New Zealand health district during June-October 2022. The survey could be completed online or by telephone and was available in eight languages. RESULTS: Seventy-nine percent of respondents knew that their health information was currently being used in the ways described in the scenarios, and between 80-87% felt comfortable or very comfortable with their data being used as described in the scenarios. In contrast, 4% (n=9) felt "uncomfortable" or "very uncomfortable" across all of the scenarios. Participants expressed concerns about data accuracy, privacy and confidentiality, security, transparency of use, consent, feedback and the risk of data being sold to commercial companies. Some participants identified situations where permission should be required to link data, including being used by people other than health professionals, containing sensitive health issues, or being used for commercial purposes. CONCLUSION: This study finds general support from patients for the use of their routinely collected data for secondary purposes as long as its use will benefit the population from which the data are taken. It also highlights the necessity of including the perspectives of different cultures in the collection, storage, use and analysis of health information, particularly concerning Maori cultural considerations.

Lived Experience of Dementia in the New Zealand Indian Community: A Qualitative Study with Family Care Givers and People Living with Dementia.

Currently, there are estimated to be 70,000 people living with dementia in Aotearoa, New Zealand (NZ). This figure is projected to more than double by 2040, but due to the more rapid growth of older age groups in non-European populations, prevalence will at least triple amongst the NZ Indian population. The impact of dementia in the NZ Indian community is currently unknown. The aim of this study was to explore the lived experiences of NZ Indians living with dementia and their caregivers. Ten caregivers (age range: 41-81) and five people living with mild dementia (age range: 65-77) were recruited from a hospital memory service and two not-for-profit community organisations in Auckland, Aotearoa, NZ. Semi-structured interviews were conducted by bilingual/bicultural researchers and transcribed for thematic analysis in the original languages. Dementia was predominantly thought of as being part of normal ageing. Getting a timely diagnosis was reported as difficult, with long waiting times. Cultural practices and religion played a large part in how both the diagnosis and ongoing care were managed. Caregivers expressed concerns about societal stigma and about managing their own health issues, but the majority also expressed a sense of duty in caring for their loved ones. Services were generally well-received, but gaps were identified in the provision of culturally appropriate services. Future health services should prioritise a timely diagnosis, and dementia care services should consider specific cultural needs to maximise uptake and benefit for Indian families living with dementia.

Diagnostic Accuracy of 10/66 Dementia Protocol in Fijian-Indian Elders Living in New Zealand.

The 10/66 dementia protocol was developed as a language and culture-fair instrument to estimate the prevalence of dementia in non-English speaking communities. The aim of this study was to validate the 10/66 dementia protocol in elders of Indian ethnicity born in the Fiji Islands (Fijian-Indian) living in New Zealand. To our knowledge, this is the first time a dementia diagnostic tool has been evaluated in the Fijian-Indian population in New Zealand. We translated and adapted the 10/66 dementia protocol for use in in Fijian-Indian people. Individuals (age ≥ 65) who self-identified as Fijian-Indian and had either been assessed for dementia at a local memory service (13 cases, eight controls) or had participated in a concurrent dementia prevalence feasibility study (eight controls) participated. The sensitivity, specificity, positive predictive value, and Youden's index were obtained by comparing the 10/66 diagnosis and its sub-components against the clinical diagnosis (reference standard). The 10/66 diagnosis had a sensitivity of 92.3% (95% CI 70.3-99.5), specificity of 93.8% (95% CI 75.3-99.6), positive predictive value of 92.3% (95% CI 70.3-99.5), and negative predictive value of 93.8% (95% CI 75.3-99.6). The study results show that the Fijian-Indian 10/66 dementia protocol has adequate discriminatory abilities to diagnose dementia in our sample. This instrument would be suitable for future dementia population-based studies in the Fijian-Indian population living in Aotearoa/New Zealand or the Fiji-Islands.