RecruitingObservational

Understanding the support needs of African and African-Caribbean people living with dementia, their care partners and families and the impacts of delayed support: identifying inclusive strategies to facilitate timely and culturally appropriate social care support

This study, called the ACE study, wants to understand how African and African-Caribbean people with dementia, along with their families and carers, get support from health and social care services. Sadly, this group often faces unfairness and delays in getting help, which can make their health worse or lead to them moving into care homes sooner. Researchers hope to learn directly from people's experiences to improve how services support this community. They'll also look at how care decisions are made. The study will take place in areas with large African and African-Caribbean communities in London, Kent, and Northwest England, and will run from January 2025 to December 2027.

At a glance

Status

Recruiting

Sponsor

University of West London

Enrolment target

Start

01 Aug 2025

Estimated completion

31 Jul 2027

Examining experiences of and accessing social care support by African and African Caribbean people living with dementia

What is this study about?

This study, known as the ACE study, is all about improving support for African and African-Caribbean people living with dementia, as well as their families and carers. The researchers want to understand the kinds of support these individuals need and how easily they can access it. Because various studies have shown that people from African and African-Caribbean backgrounds often face difficulties, including discrimination and delays, when trying to get help for dementia. These challenges can lead to worse health outcomes and a higher chance of needing residential care much earlier.

The main goal is to find better ways for health and social services to support this community. By really listening to the experiences of those affected, the study hopes to create new strategies that ensure everyone gets timely and culturally sensitive care. It's about making sure that the support available truly meets the needs of these specific communities.

To do this, the research will explore two main things: what people's experiences are when they try to get support, and how social care and community teams actually make decisions about care. The findings from this study should help improve services, making them fairer and more effective for African and African-Caribbean people living with dementia across the UK.

Key takeaways

This study focuses on improving support for African and African-Caribbean people with dementia.
It aims to understand experiences and challenges with social care services.
Your valuable insights could help shape better, fairer care for the future.
Participation involves sharing your experiences through conversations over six months.
The study is funded by the NIHR and is taking place in specific UK regions.
It does not involve any medical treatments or new medication.

Who may be eligible?

This study is particularly looking for people aged 18 to 100 years old. If you are an African or African-Caribbean older person living with dementia, you could be eligible to take part. The study also welcomes family members and care partners of African and African-Caribbean older people who have dementia.

Additionally, staff who work in adult social care teams are also invited to join. The researchers want to hear from both those who receive care and those who provide it.

However, if you have dementia but are not of African or African-Caribbean background, this specific study might not be the right fit for you. Also, if you don't work in adult social care, you wouldn't be able to participate as a staff member in this particular research.

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 between 18 and 100 years old?
Are you an African or African-Caribbean person living with dementia?
Are you a family member or care partner of an African or African-Caribbean person living with dementia?
Do you work in an adult social care team?
Are you able to comfortably share your experiences and views?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, the main thing you'll be asked to do is share your experiences. This involves having conversations over a period of six months about what it's been like trying to get support from services when living with dementia, or caring for someone with dementia. The research team will listen carefully to your stories.

These conversations are designed to help the researchers understand the challenges and successes people face. The study team will also be observing how social care and community teams make their decisions about care to get a full picture of how services operate. This study doesn't involve any medical treatments, changes to your medication, or lots of hospital visits; it's focused on understanding your experiences.

Potential risks and benefits

There aren’t any direct medical benefits you’ll get from taking part in this study. However, many people find it helpful to share their experiences, and contributing your story could help improve social care services for others in the future, making a real difference. The researchers don't expect any risks from participating; your comfort and well-being are important. You are completely free to decide if you want to take part, and you can change your mind and stop at any time without giving a reason, and it won't affect any care you receive.

Locations (6)

Percival House
Approximate
London, United Kingdom
Westminster Council Public Health Team
City only
London, United Kingdom
London Borough of Hounslow, Hounslow House, 7 Bath Road, Hounslow, TW3 3EB
Verified postcode
Hounslow, United Kingdom
Medway Council
Approximate
Chatham, United Kingdom
Liverpool City Council
Approximate
Liverpool, United Kingdom
Kensington and Chelsea Social Services Directorate
City only
London, United Kingdom

Common questions

What is the main goal of this study?

The main goal is to understand and improve how African and African-Caribbean people with dementia and their families get support from social care services.

Who is funding this research?

The study is funded by a UK organisation called the National Institute for Health and Care Research (NIHR).

How long will the study last?

The study is planned to run from January 2025 to December 2027.

Will I have to take new medication if I join?

No, this study does not involve any medication or medical treatments. It's about discussing experiences with support services.

Where in the UK is this study taking place?

It's taking place in two areas of Greater London, one in Kent, and one in Northwest England.

How to find out more

Shadreck Mwale

shadreck.mwale@uwl.ac.uk +44 20 8209 4278 Official trial record

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