CompletedObservational

InvolveD: Involving South Asian, Black African and African Caribbean people in designing better dementia support

This study, called InvolveD, wants to make dementia support better for people from South Asian, Black African, and African Caribbean communities. In the UK, many people from these backgrounds get dementia, but current services often don't meet their needs due to cultural or language differences. This study will bring together community members, carers, and dementia service providers in Wolverhampton and Sandwell. Through workshops, everyone will work together to create new ideas for dementia care that truly fit the experiences and needs of these communities. The aim is to build trust and improve how services are offered, making sure they are helpful and supportive for everyone living with dementia.

At a glance

Status

Completed

Sponsor

University of Wolverhampton

Enrolment target

210

Start

30 Jan 2025

Estimated completion

30 Nov 2025

Involving South Asian, Black African and African Caribbean People in designing better dementia support

What is this study about?

Dementia affects many people in the UK, and the number of people from South Asian, Black African, and African Caribbean communities living with dementia is growing quickly. Unfortunately, current dementia services often don't work as well as they could for these groups. This can be because of differences in culture, language, or simply not understanding what is important to these communities.

The InvolveD study aims to change this. It's about talking directly to people from these communities in Wolverhampton and Sandwell – whether they have dementia themselves, care for someone with dementia, or just know a lot about it. The study wants to find out what really helps them to live well with dementia in their local areas. By understanding their experiences and what matters to them, services can be improved to be much more helpful and supportive.

This study isn't just about listening; it's about working together. Researchers will hold workshops where community members and those who provide dementia care can meet and share ideas. The goal is to design new ways of supporting people with dementia that are truly based on the needs and wishes of those who use them. This collaborative approach helps build trust and makes sure that services are a better fit for everyone.

Key takeaways

Aims to improve dementia care for specific ethnic minority groups.
Focuses on Wolverhampton and Sandwell communities.
Involves community members and carers in designing solutions.
Uses workshops to gather ideas and build trust.
Funded by the NIHR, indicating its importance.

Who may be eligible?

This study is looking for people who are aged 18 years or older.

You might be able to take part if you live in Wolverhampton or Sandwell and are from a South Asian, Black African, or African Caribbean background. This includes people who have been diagnosed with dementia, or people who have cared for or supported someone with dementia (either as a family member or professionally). You can also join if you are familiar with dementia and come from one of these communities.

Unfortunately, if you are under 18, or if you are unable to give consent to join the study, you won't be able to participate.

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?
Do you currently live in Wolverhampton or Sandwell?
Are you from a South Asian, Black African, or African Caribbean background?
Do you have dementia, care for someone with dementia, or know a lot about dementia?

Answer every question to see your result.

What does participation involve?

If you join this study, you will take part in a series of community workshops. These workshops will bring together people from South Asian, Black African, and African Caribbean communities with those who provide dementia support. The idea is to have open discussions and create new ideas together for better dementia services in Sandwell and Wolverhampton.

After the workshops, some participants will be invited to a follow-up session. This is to make sure the ideas developed truly reflect everyone's needs and experiences. The research team will also talk with people who took part in advisory groups or workshops to understand how this way of working together helped to develop the new ideas.

Potential risks and benefits

While specific benefits and risks were not detailed at registration, participating in a study like this offers the chance to directly influence and improve dementia support for your community, which could be very rewarding. It's possible that discussing sensitive topics might bring up challenging emotions for some participants. However, it's important to remember that you are free to withdraw from the study at any time, for any reason, without it affecting your care.

Locations (1)

University of Wolverhampton
Approximate
Wolverhampton, England

Common questions

What is the main goal of this study?

The main goal is to improve dementia support for people from South Asian, Black African, and African Caribbean communities in Wolverhampton and Sandwell by involving them in designing better services.

Who can take part in this study?

Adults (18+) from South Asian, Black African, or African Caribbean backgrounds living in Wolverhampton or Sandwell, who have dementia, care for someone with dementia, or know a lot about it.

What will I actually do if I join?

You will participate in community workshops where you'll share your experiences and ideas to help design new models for dementia support.

When does the study start and finish?

The study runs from May 2024 to May 2026.

Who is funding this research?

The National Institute for Health and Care Research (NIHR) in the UK is funding this study.

How to find out more

Karan Jutlla

K.Jutlla@wlv.ac.uk +44 (0)7725111574 Official trial record

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