30 Mar 2017

NIMHANS study to support family members and other caregivers of people with dementia


At the National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore we are conducting an online training program to support caregivers of people with dementia. The overall goal of the project is to develop an effective online support program for caregivers of people with dementia. To evaluate whether the program is effective, we are currently conducting a study sponsored by WHO (Geneva).


As it is nation-wide study, we require at least 400 caregivers to participate in the program in a period of 3 months. We would therefore like to request you to kindly forward the link to participate in the study to as many caregivers of persons with dementia as possible.

The detailed information about the study including the time required to complete the questionnaires, step-wise instructions, contact information etc. is available once people click on the link given below. By clicking on the link the individual will be able to ascertain their eligibility for the study as well as register for the same if found eligible. The link is:

https://tinyurl.com/dementiacare4india


Purpose of the study: The population is aging rapidly and a clearly negative effect is the increasing number of people with dementia. People with dementia require help with personal care and daily activities and most of the care is provided by family members. The impact of caregiving can be overwhelming and many caregivers feel unprepared for this task. Therefore, we have developed an online training program to support caregivers of people with dementia and we would like to evaluate its effectiveness through this research.

In an earlier part of this study, we had asked caregivers their thoughts on what would be helpful in an online training program. Based on this we have designed this program. We would now like to ask people like you, who are caring for their relatives with dementia to take part in this program. We would like to ask you to tell us what you think of the program. We will also ask you to fill out forms that will help us learn whether the program was helpful.

Procedures: You are eligible to take part in this study if you are (1) a family caregiver of a person with dementia, (2) aged 18 years or older, (3) experience some distress related to caregiving.
To be able to take part you must have regular access to the Internet. You also need to be able to comprehend written English and reside in India.

Before you can take part, you will need to respond to some questionnaires about yourself and your caregiving situation. Completing these questions will take approximately 10-15 minutes. If these questions confirm your eligibility, you will be asked to register for the study. After registration you will be asked to complete a couple of questionnaires relevant for this study. Completion of the questionnaires will take approximately 40-60 minutes. You will then be randomly assigned to either of two groups. Both groups will receive education, but in different ways. One group will receive access to a web-based information and skill-building programme, while the other group will receive an e-book that is also downloadable. Both are meant to help caregivers of people with dementia. Group assignment will be completely random and done by a computer program. The user account for the support program, for both groups, will be deactivated 3 months after you receive a link to one of the online educational programs.

You will be asked to fill out the same questionnaires that you have completed after the registration phase, in 3 months and again in 6 months. If, for some reason, you are not able to complete the training program, we will still be interested in your answers and will ask you to complete these questionnaires.