This Participant Information and Consent Form contains detailed information about the research project. Its purpose is to explain to you as openly and clearly as possible all the procedures involved in this project before you decide whether or not to take part in it. Please read this Participant Information carefully.

Once you understand what the project is about and if you agree to take part in it, we ask you to proceed filling the survey. By proceeding to fill the survey, you indicate that you understand the information and that you give your consent to participate in the research project.

What is the purpose of the study?

We have developed online resource, which will provide carers of people living with dementia with ideas about how best to ensure health and wellbeing when living with dementia.

This research aims to assess if the resources are user-friendly and help improve knowledge of health and care.

Why am I being invited?

You are invited to take part in this research project because you care for a person living with dementia. We are looking for carers >18 years of age, have proficiency in English and/or Hindi/Kannada, care for a family member with dementia, and own a smartphone.

Do I have to take part?

Participation in this study is completely voluntary and you are not under any obligation to participate in this study. The decision whether to participate in this study will not in any way influence your relationship with the research team or any organizations involved.

What will happen to me if I take part in this study?

If you take part in this study, you will be asked to use the newly developed Moving Pictures resources online. You will also be asked to complete some surveys at 3-time points, i.e., before accessing the materials, at the end of 3 and 6 months. It is anticipated that your total participation will require between 6-8 hrs of your time. Procedures are described in detail below.

What investigations or treatments will be conducted in this study?

Your participation in this project involves the following:
1. Accessing the online resource on your Smartphone, Tablet device, or home computer at least once in 3 months.
Note: You can access these resource as many times as you like in the 3-month period.

2. Completing a 30-40 mins survey via phone, online, or in-person every three months.
Note: You will receive INR 1000 for every survey you complete.

Are there any alternatives to the procedures described?

You are free to choose to participate, enroll and then withdraw, or not participate at all, however we do not offer alternatives to the procedures described in this document.

Will I benefit from the study?

Participation in this study may improve your knowledge about health, ageing, and care. If the resources are appropriate, then they may also help carers looking after a family member with dementia.

Assuming that the resources are appropriate, once finalised, they will be freely available on the Moving Pictures website. You, your family, and friends will have unlimited access to these resources.

Risk – What are the risks that I am likely to face if I participate in this study? What if something goes wrong?

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

If you do experience any distress discussing your experience of caring, we will advise, provide, or refer you to an appropriate service (depending on your choice). If required, the NIMHANS lead investigator, Professor Santosh Loganathan, can refer you to appropriate counselling services.

Payment

You will receive INR 1000 for each survey you complete (total INR 3000). The surveys will be 3 months apart and each survey will take approximately 30 mins to complete (total 1.5 hours). The first survey will be before you access the resources, the second survey will be 3-months later, and the third survey will be 3 months after that.

How will my data confidentiality be protected?

All data collected as part of this study will be de-identified. This means that no identifiable information about you or your family will be publicly available. Only the research team will have access to your private, identifiable data.

What if I don’t want to participate in this study, or I want to withdraw later?

Participating in this study is voluntary and you are under no obligation to participate. If you do consent to participate, you can withdraw at any stage.

This will not affect your relationship with the research team or any of the organizations involved in the research.

PLEASE NOTE that you will only be able to withdraw your responses prior to analysis of data.

What happens to the data collected?

How information will be stored?

Hard copy data will be stored in a locked filing cabinet in the office of Professor Santosh Loganathan at NIMHANS. Electronic files will be password protected and stored in the researcher’s computer. All data will be stored securely stored and destroyed 7 years after publication. Electronic copies of all data will be securely shared with Australian research team located at the National Ageing Research Institute and will be stored under secure conditions at the National Ageing Research Institute for 7 years after the research is published and then it will be securely destroyed.

Sharing of information arising from the study

Results of the project will be presented at conferences, community forums, and published in journal articles, book chapters, reports, and media releases. You will not be identified in any results that are published or presented.
If you would like information about study outcomes, the final study results should be available after the study completion and you are welcome to contact us at that time.

Who is organising the study?

This study is jointly led by National Institute of Mental Health and Neurosciences (India) and the National Ageing Research Institute (Melbourne, Australia) in collaboration with Curtin University (Perth, Australia), and Queen Mary University London (London, UK).
This project is funded by an Alzheimer's Association (US) grant.

Who has reviewed the study?

NIMHANS Ethics Committee, the ethics Committee at Curtin University, Australia and the Health Ministry's Screening Committee (Indian Council of Medical Research) ICMR.

Further Information or problems

If you would like further information or have any problems or concerns relating to the project, please do not hesitate to contact the research team: the principal researchers; Professor Santosh Loganathan via [Mobile: 9480829663]