Many anonymous online survey studies are seeking volunteers through Join Dementia Research. These studies are quick and easy to take part in. They provide important data to help further our understanding of dementia. Here are 2 studies currently taking place:

MINDER (TIHM Technology Perceptions)

People with dementia may have biases towards health technologies. This may prevent them from using devices to help with their healthcare, such as smart watches.

Previous research suggests barriers to using these devices may include a lack of knowledge about how they work. 

The MINDER study aims to explore understandings of devices used to diagnose, monitor, or treat a health condition, such as dementia. It involves answering a questionnaire on medical devices, with both multiple choice and free text questions.

This is essential to improving the experience of using health technologies. It will also ensure they are used to their full potential to maximise the health and wellbeing benefits for the user.

The study, funded by NHS England and Innovate UK, is seeking participants with and without dementia from across the UK. It is open until August 2025. 

No one left to cope alone: development of a post-diagnostic intervention to support people newly diagnosed with dementia (NOLA)

The NOLA study aims to understand the impact of receiving a diagnosis of dementia on the person being diagnosed and their family. The researchers also want to understand the support offered to people living with dementia, to help them cope with their diagnosis.

The survey takes approximately 60 minutes to complete. It consists of questions about the experience of receiving a diagnosis and what support the participant was offered for this.

The study – funded by the National Institute for Health and Care Research (NIHR) – is seeking UK volunteers with a diagnosis of dementia in the past 12 months. It is open until June 2025. 

The findings of this research will be used to raise awareness of the effects a dementia diagnosis can have. It will also be used to develop new methods to support people after a diagnosis. 

Importance of understanding experiences of living with dementia 

Professor Paresh Malhotra, NIHR Research Delivery Network (RDN) National Speciality Lead for Dementias said: “We have all heard lots of news about emerging drugs, such as lecanemab and donanemab, which might slow the progression of dementia. Studies into these drugs are vital for finding the best treatments for the disease. 

“However, the importance of increasing our understanding of people’s experiences of living with dementia should not be understated. The information collected from survey studies like NOLA and MINDER add to our understanding of dementia, which in turn will help improve the way we care for those affected. 

“I would urge all Join Dementia Research volunteers to consider taking part in these studies if they have been invited to participate so that we build an understanding of how best to manage dementia in the real world.”

Take part

Log in to your Join Dementia Research account to check whether you have been invited to take part in a study. Or, if you are not already registered, sign up today.