RecruitingNAINTERVENTIONAL

BELIDE: Better Living With Non-memory-led Dementia

This study, called BELIDE, is for unpaid carers of people with certain types of dementia where memory problems aren't the main symptom. This includes conditions like primary progressive aphasia (PPA), posterior cortical atrophy (PCA), and behavioral variant frontotemporal dementia (bvFTD). Many carers of people with these less common dementias struggle to find tailored support. This study wants to find out if an online educational program, called "Better Living with Non-memory-led Dementia," can help carers feel less stressed and more supported. It will also look at carers' experiences with the program to understand how it helps and what could make it even better. The goal is to improve care for these specific families.

At a glance

Status

Recruiting

Phase

Sponsor

University College, London

Enrolment target

238

Start

29 Jan 2024

Estimated completion

30 Sep 2027

Dementia

What is this study about?

Dementia affects millions of people worldwide, but not everyone experiences it in the same way. Some types of dementia cause problems with memory first, while others might affect language, vision, or behaviour. These less common types, often starting before age 65, can present unique challenges for individuals and their families. Unfortunately, support programs often focus on memory-led dementias, leaving carers of people with these other forms feeling overlooked and unsupported. This is particularly difficult as many are still working or have children to care for.

This study, called BELIDE (Better Living with Non-memory-led Dementia), aims to fill this gap. It's designed to see if a specially created online educational program, also called "Better Living with Non-memory-led Dementia," can help unpaid carers of people with specific types of dementia. These types include primary progressive aphasia (which mainly affects language), posterior cortical atrophy (which mainly affects vision), and behavioral variant frontotemporal dementia (which mainly affects behaviour).

Researchers want to understand two main things: firstly, if the program genuinely improves how carers feel psychologically, such as reducing stress or improving coping skills. Secondly, they want to hear directly from carers about their experiences – what they found helpful, what challenges they faced, and how the program made a difference in their lives. By doing this, the BELIDE study hopes to find a better way to support these dedicated carers and improve their wellbeing.

Key takeaways

New online support for carers of people with specific non-memory dementias.
Aims to improve carers' psychological wellbeing.
Looks at conditions like PPA, PCA, and bvFTD.
Involves online modules and virtual check-ins.
Compares the program to a waiting list group.
Your experiences will help shape future support for carers.

Who may be eligible?

This study is looking for adults aged 18 or older who are unpaid carers for someone with dementia. This means you could be a partner, child, friend, or other family member who doesn't get paid for their caregiving.

The person you care for must have a confirmed diagnosis of specific types of dementia that don't primarily affect memory. These are primary progressive aphasia (PPA), posterior cortical atrophy (PCA), or behavioral variant frontotemporal dementia (bvFTD). They should also not be living in a full-time care home. You need to be able to fully understand written English and have access to the internet to take part.

There are also some reasons why you couldn't join. For example, if the person you care for is in a full-time care home, or if their dementia has a very severe impact on their daily life. Also, if the person you care for has a type of dementia other than PPA, PCA, or bvFTD, this study would not be the right fit.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you an adult (18+) and an unpaid carer for someone with dementia?
Does the person you care for have PPA, PCA, or bvFTD?
Is the person you care for NOT living in a full-time care home?
Do you have good written English skills and access to the internet?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you would be randomly placed into one of two groups. One group will start the online program right away, while the other group will be put on a waiting list for a short while before getting access. This helps the researchers compare the program's effects.

The online program itself involves a welcome meeting with a helper online, followed by 6 learning sections. Each section includes tasks to help you practice new skills in real life. You'll also have up to two more online check-in meetings with the helper. The entire study will involve you taking part in the program (if you're in that group) and then answering some questions about how you're feeling and how things are going, both initially and again after about six months. You won't need to take any new medications as part of this study.

Potential risks and benefits

Taking part in this study could potentially offer you new ways to cope with the challenges of caring for someone with a less common form of dementia, and connect you with useful information. You might gain new skills and feel more supported, which could improve your overall wellbeing. Like any study involving personal experiences, some people might find talking about their caring role emotionally challenging, though support would be available. You are free to withdraw from the study at any time, for any reason, without it affecting your care or relationship with medical services.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University College London
Verified postcode
London, United Kingdom· Recruiting

Common questions

What kind of dementia does this study focus on?

It focuses on types where memory isn't the main problem, like those affecting language (PPA), vision (PCA), or behaviour (bvFTD).

Do I need special equipment to participate?

You just need access to the internet, as the program and meetings are online.

Will I get immediate access to the program?

You'll be randomly assigned to either start the program right away or be on a waiting list for a short period before joining.

How long will I be involved in the study?

The intervention runs for 8 weeks, and researchers will follow up with you for about 6 months in total.

Will I have to take any new medicines?

No, this study does not involve any changes to medication.

How to find out more

Official trial record

Always speak to your GP or specialist before deciding to take part in a study.