CompletedObservational

Co-creating a virtual community to support family carers for people with dementia

Living with dementia can be challenging, often placing a big responsibility on family carers. This project aims to build a new online community specifically for these carers. We know finding reliable information and support can be tough, so this website will be a safe place for carers to connect with others who understand, share their experiences, and find helpful resources. To make sure this online community is truly useful, we'll be holding workshops. Family carers and healthcare professionals will work together to design the website, ensuring it meets everyone's needs. A trained health expert will also keep an eye on the community to make sure all the information shared is correct and supportive. We hope this will become a valuable resource for carers, offering support and a sense of belonging.

At a glance

Status

Completed

Sponsor

King's College London

Enrolment target

Start

20 Feb 2025

Estimated completion

11 Jul 2025

Family carers for people with dementia

What is this study about?

When someone has dementia, it affects their memory, thinking, and daily life, often meaning they need a lot of support. This care is frequently provided by family members, which can be a big commitment. This project is all about making things a bit easier for these family carers by creating a special online place just for them. Think of it like a virtual coffee morning or support group, but available whenever you need it.

We know that many people look for health information and support online, often finding comfort in connecting with others who are going through similar things. This study wants to use that idea to build a safe and supportive online community. The goal is for family carers of people with dementia to be able to connect with each other, share advice, and find trustworthy information. A special part of this community will be that a trained healthcare professional will help oversee it, making sure everything is helpful and accurate.

To make sure this online community is exactly what carers need, we're not just guessing. We're inviting family carers and healthcare experts to work together in workshops. This means that the people who will actually use the platform will have a big say in how it's designed. It's like building a house with the future residents involved in every step to make sure it's perfect for them. We hope this online space will help carers feel less alone and give them a valuable resource for support and information.

Key takeaways

A new online community is being designed for family carers of people with dementia.
Carers and healthcare experts will work together to create this online support hub.
The aim is to offer a safe place for connection, information, and shared experiences.
A trained health professional will oversee the online community to ensure safety and accuracy.
The study runs from October 2024 to December 2025 and is funded by NIHR.

Who may be eligible?

This study is looking for two main groups of people to take part. Firstly, we need adult family carers for people with dementia. This includes those who are currently caring for someone, or who have cared for someone with dementia in the past (even if that person has since passed away). You must be over 18 years old.

Secondly, we are inviting registered healthcare professionals who have experience working with family carers of people with dementia. This could include nurses (like adult or mental health nurses) or doctors who specialise in care for older people, such as geriatrics or old age psychiatry.

To be clear, you wouldn't be able to participate if you are under 18, or if you are a family carer for someone with a different health condition that isn't dementia. Similarly, if you are a professional carer (not a family member), this particular study isn't for you. For healthcare professionals, you need to have a proper registration and experience with dementia carers to be involved.

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 18 years old or over?
Are you a family member or close friend caring for someone with dementia, or have you done so in the past?
Are you a registered healthcare professional with experience supporting dementia carers?
Do you want to help design an online platform for carers?

Answer every question to see your result.

What does participation involve?

If you take part in this study, you would be involved in co-design workshops. These workshops are meetings where family carers and healthcare professionals work together to design the online community. There will be four of these workshops in total.

The aim of these workshops is to understand what family carers need and how an online platform can best provide that support. Your ideas and experiences will be really important in shaping the new website. After the main design, a group of family carers will test out the platform to see how well it works and if it meets their needs. The total duration of the study, from when it starts to when it finishes, is expected to be from October 2024 to December 2025.

Potential risks and benefits

Taking part in this study, by helping to design the online platform, has some potential benefits. It could help create a valuable space for carers to find support, information, and feel less alone. This online community might also offer support beyond what is available in short doctor's appointments. For participants, being involved means you'll be directly shaping a resource that could help many others. We don't expect any direct risks from taking part. However, some discussions might touch on sensitive topics related to caring for someone with dementia. If you ever feel affected by these discussions, the research team will be available to talk with you privately, both before and after the workshops. Remember, you can always discuss any concerns directly with the research team and you are free to withdraw from the study at any time.

Locations (1)

King's College London
Approximate
London, United Kingdom

Common questions

What is the main goal of this study?

The goal is to create an online community where family carers of people with dementia can connect, share, and find reliable information and support.

Who can join the workshops?

Adult family carers (current or past) of people with dementia, and registered healthcare professionals experienced with dementia carers, can join.

What does 'co-design' mean?

It means carers and experts will work together, combining their ideas, to design the online platform so it's as helpful as possible.

Will the online community be safe?

Yes, a trained healthcare professional will monitor the community to ensure shared information is accurate and the environment is supportive.

Is there any cost to take part?

No, there is no cost to participate in this study.

How to find out more

Annabel Farnood

annabel.farnood@kcl.ac.uk +44 20 7848 2922 Official trial record

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