Thank you for your interest in contributing to the development of the MPGENIE online dementia resource.

About the project

The Global dEmeNtIa rEsources (GENIE) project aims to develop a freely available online gateway comprising multilingual evidence-based, dementia resources developed in languages other than English; or for culturally and linguistically diverse communities such as ethnic minority groups, migrants and refugees around the world.

This could include digital dementia resources developed to support family carers, raise dementia literacy, or support health providers in their work with people living with dementia.

This study is conducted by the National Ageing Research Institute (NARI) (Melbourne, Australia) and Curtin University (Perth, Australia), and is a collaboration between researchers from NARI, Neuroscience Research Australia (NeuRa), Samvedna Senior Care (India), University of Strathclyde (UK), Monash University & Erasmus University Medical Center (NL). The project is funded by the Australian Association of Gerontology.

Who can participate?

We are seeking participants who:

  • Identify as an family carer (current or past) for a person living with dementia, or have a close relative/friend living with dementia
  • Identify as a person from a Culturally and Linguistically Diverse background, or reside in a no-English speaking country.
  • Speak a language other than English at home regularly
  • Is able to complete the online questionnaire in English.
Please note that participation is completely voluntary.

What is involved?

We ask you to complete a brief online questionnaire which will help us develop the online gateway-the Moving Pictures Genie (MPGenie) as well as understand what online resources should be developed in the future to support culturally and linguistically diverse families and individuals living with dementia around the world.

PART 1: Priorities & gaps. In this part of the questionnaire, we ask you to select which topics you feel should prioritized in future digital resources to better support people be from culturally and linguistically diverse backgrounds living with dementia, their families, carers, communities and providers.

PART 2: Your recommendations. In this part of the questionnaire we ask you to provide links to evidence-based dementia resources that are developed:

  • In languages other than English; or/and
  • for culturally and linguistically diverse communities (e.g., ethnic minority groups, migrants and refugees).

Resources have to be digital, freely available via the internet to anyone in the community.

Information provided in PART 1 of the questionnaire will help identify areas of need and may guide the development of future dementia resources.

Information provided in PART 2 of the questionnaire will help develop a central digital gateway to freely available dementia resources-the MPGENIE-where persons seeking evidence-based, culturally relevant dementia information can easily locate relevant, digital dementia resources in different languages.

What do I have to do to take part?

Before you can access the questionnaire, you will have confirm that you have understood the procedures of the project and consent to participate. To consent you will have to select the I AGREE TO PARTICIPATE checkbox at the end of this document. Once you have confirmed your participation the questionnaire will open.

How long will it take?

The completion of this questionnaire may require 5-10 minutes of your time.

Will I get paid?

No reimbursement is provided.

What are the possible benefits of taking part?

There may be no direct benefits to you from participation in this research.

What are the possible risks and disadvantages of taking part

Apart from giving up your time, we do not expect that there will be any other risks or inconveniences associated with taking part in this research.

What happens to my data?

You will not be identified in any publications (e.g. academic papers, conference presentations) arising from this project. Data will be retained will be held at the National Ageing Research Institute and Curtin University respectively in password protected electronic files, and will be destroyed 7 year after the last publication of the project. Confidentiality and privacy in line with Victorian and Commonwealth Law will be respected. Information will only be used for the purpose of this research project, and potential projects directly arising from the current study conducted by the research team.

Can I withdraw my data?

We will not be able to identify your data as this is an anonymous questionnaire, and therefore you will not be able to withdraw your data once you have completed the questionnaire.

Where can I learn about the progress and outcomes of the project?

The Moving Pictures Genie will be made publicly available via www.movingpictures.org.au once the resource is completed. Publications related to the project will also be available via the same website.

If you would like to be kept informed about project progress and outcomes, you will be able to register your email to receive updates once you have submitted your questionnaire responses. Please note that your questionnaire data and your email information will be collected via separate forms and we will not be able to link your email to your questionnaire responses.

Alternatively, you may contact the research team to enquire about the project at any time: Dr. Josefine Antoniades (National Ageing Research Institute): j.antoniades@nari.edu.au or Chief Investigator Prof Bianca Brijnath (Curtin University & National Ageing Research Institute) : bianca.brijnath@curtin.edu.au | b.brijnath@nari.edu.au

Further information

If you would like further information or have any problems or concerns relating to the project, please do not hesitate to contact the project manager, Dr Josefine Antoniades (National Ageing Research Institute) via j.antoniades@nari.edu.au, or Chief Investigator Prof Bianca Brijnath (Curtin University & National Ageing Research Institute) : bianca.brijnath@curtin.edu.au | b.brijnath@nari.edu.au

Ethical approval

Curtin University Human Research Ethics Committee (HREC) has approved this study (HRE2022-0089). Should you wish to discuss the study with someone not directly involved, in particular, any matters concerning the conduct of the study or your rights as a participant, or you wish to make a confidential complaint, you may contact the Ethics Officer on (08) 9266 9223 or the Manager, Research Integrity on (08) 9266 7093 or email hrec@curtin.edu.au.

ELECTRONIC CONSENT

Please Remember! Completion of the online questionnaire means that you consent to your answers being used in further analysis and may be included in reports and other publications relating to the project.

This questionnaire is anonymous and we will not be able to identify your data after submission and you will not be able to withdraw your responses.

Please select your choice below.
By selecting Agree you consent to participate in this study.

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