Summary

This study aims to improve healthcare for two important groups of people who have dementia:

1. People from different ethnic backgrounds (different cultures and races).

2. People in the LGBTQIA+ community (lesbian, gay, bisexual, transgender, queer, intersex, asexual, and more).

The goal is to make sure that everyone gets the best possible care, no matter who they are or where they come from.

What is the study about?

Not everyone has the same experience when they are diagnosed with dementia.  Some people find it easier than others to get the care and support they need.  We want to understand why these differences happen and how care can be made fairer for everyone.

The research project called DETERMIND found that people from some communities can face more difficulties getting the right care and support.  These are sometimes called 'underserved communities'.  This means communities that may have less access to healthcare, services, information or other support than other people.

What is the study trying to find out?

Not everyone has the same experience of care after being diagnosed with dementia.  Some people find it harder than others to get the care and support they need.  This study wants to understand why these differences happen.  

Our aim is to understand what could make care fairer and more accessible for everyone, whatever their background or circumstances.

To do this, we want to hear directly from people whose experiences are not always included in research.  By listening to their experiences, we can better understand what needs to change and how care and support could be improved.

What does taking part involve?

During our research, we will ask you to answer about 12 short surveys (questionnaires).  We will bring a tablet computer to write down your answers.  These questions are about:

— Your health and how you feel.

— Your emotions (feelings).

— The support you get from others.

Where will we meet?

We usually come to your home because it is a comfortable place for you to talk.  If you prefer, we can also meet over the phone or on a videa call (like Zoom).  Just let us know what works best for you.

Who is is for?

We are looking for people who have recently been told they have dementia.  We especially want to hear from:

* People from Black, Caribbean, Eastern European or South Asian backgrounds and people who identify as part of the LGBTQIA+ community.

What is dementia?

Dementia is a condition where a person's memory and thinking skills start to get worse.  It is important that we include everyone in our research so we can learn how to help all communities better.

Why is it important?

Not everyone has the same experience of care after being diagnosed with dementia.  Some people find it harder to get the care and support they need and may also face greater costs.  Our main research project, DETERMIND, found that people from some communities face more barriers to getting the right care and support.  These communities are sometimes described as 'underserved'. 

In this new part of the study, we want to understand these differences and what could make care fairer and accessible for everyone, whatever their background or circumstances.  

To do this, we need to hear directly from people with dementia from underserved communities.  By listening to their experiences and learning about their everyday lives, we can better understand what needs to change and how care and support could be improved.

How can I find out more?

You can find out more information about taking part in this study by downloading the key documents at the top of this page.

If you are interested in taking part in this study, or have questions for the research team, please email us using the link below:

nem-tr.randd@nhs.net