This research looks at why some people with dementia get better care than others, and the barriers to them getting good care.
We commissioned RSM UK Consulting LLP to carry out this research, write the summary below, and the full report.
Purpose of this research
We did this research to learn about why some people with dementia get better care than others, and the barriers to them getting good care. This report explains what we currently know about what works. CQC want to use this report to make sure they can help more people with dementia.
Background and introduction
RSM UK Consulting LLP (RSM), with Professor Claudia Cooper at Queen Mary University of London and the University of Birmingham Library Services, were asked by Care Quality Commission (CQC) in March 2023 to look at information about inequalities in dementia care. RSM looked at this issue in care homes, and we paid special attention to groups of people who might need extra help because of the law (the Equality Act 2010); which makes sure people aren’t disadvantaged because they are different equality groups or living in poorer areas can make things even harder.
Findings from the review
When someone has dementia and is from a different equality group, like having a different skin colour or being attracted to someone of the same sex, the people taking care of them need to be aware. Sometimes, people with dementia might have had bad experiences with doctors and nurses, which can make them scared and not want to talk to care staff. They might have had hard times in their life, and those hard times can come back because of their memory problems. As they forget things, they might get confused about who they are or who they love, or they might forget the language they know best. They might also act differently because of their culture or how they learned to deal with problems. So, it’s important for the people taking care of them to understand why they act the way they do and what they need.
The research found that taking care of people with dementia for those from different equality groups isn’t the same for each person. Staff should talk to them and their families, as this helps staff understand what the person really needs. Making a plan that’s just for that person is important because it helps protect their rights and who they are.
Taking care of people with dementia depends on seven features from the research. We also looked at how CQC could help make this kind of care better for more people. You can see this in figure 1.
Figure 1: Important features of good care, what the research said about that feature and what CQC could do to help with that feature
Confidence and capability of staff
What the research said
The research found that when the people who take care of others learn more about different cultures, beliefs, and where they come from, it can help them do a better job.
It's also important for staff to know about the person’s own life story. Sometimes, when people have memory problems, things from their past can come back and make them upset.
Learnings and considerations for CQC
CQC can help care staff who take care of others get better at their job. They could do this by making guidance notes, working with other groups, and sharing stories about how to do a great job.
Inclusive living environments
What the research said
In the past, care homes were mostly designed for people who are White and British. Staff who learned that care homes should be made for everyone, so people feel comfortable and don’t get scared, were better for people who are in different equality groups to others.
Learnings and considerations for CQC
Taking care of people isn’t the same for everyone. Each person needs to be treated as an individual and make sure they get the care they need, so that care homes are right for them. To do this, we can learn from places that do a great job and share these stories with others, so everyone can learn to take care of people in the best way possible.
Effective leadership
What the research said
Good leaders make sure everyone knows that being fair and treating everyone the same important. They do this from the top of the organisation all the way down. They also make sure that nobody is treated unfairly because of their dementia or protected equality characteristic.
Good leaders help staff to come up with new ideas to help people. They also make sure that everyone feels safe talking about their problems and needs.
Learnings and considerations for CQC
hen CQC find that someone isn’t doing a good job, they can help them do a better job by giving examples of good services and helping them to learn more about doing things the right way.
Representative workforces
What the research said
When people who take care of others come from different backgrounds and have different experiences, this makes them better at helping people with dementia from different equality groups. They can talk in the same language or use body language to speak, which makes people feel safe and comfortable. When a team is made up of staff from different equality groups, they can learn from each other and do a better job.
Learnings and considerations for CQC
CQC can help by making sure their staff have the right skills for the job. This way, they can make sure everyone gets the best care possible and that people are treated fairly.
Well-resourced services
What the research said
Care homes that did a good job had enough money and made sure their staff had what they needed to do their jobs. When there’s enough money, the staff who work there feel good, they’re not too busy, and they know exactly what they’re supposed to do.
Learnings and considerations for CQC
CQC can work together with other groups, they can help care homes learn from each other and do better at taking care of everyone.
Accessibility and reach into the community
What the research said
Working with groups in the community can help make sure that everyone with memory problems gets really good and fair care.
Learnings and considerations for CQC
Some people don’t access care because of their culture, or they just didn’t like the idea of being in a care home or they couldn’t afford it. CQC could support finding ways to make sure these care homes are more open and welcoming to everyone.
Funding for data collection and research
What the research said
There isn’t enough research in this area. This makes it harder to understand what different equality groups of people with dementia need.
Learnings and considerations for CQC
Some groups of people with dementia were not talked about much in the studies. These groups included younger people and those who had trouble learning, so CQC could do research to find out more.
Talking to people who have gone through similar things in their life
We couldn’t find much information about how people with dementia from different backgrounds are involved in care. It has been shown care homes that talk to the people from different backgrounds in their care homes, tend to do a better job. Staff who help them can learn what’s most important to each person and make choices that help them.
This research tells us that having good leaders and training for the people who take care of others is really important. It helps create a care home where the people who live there, their families, and the staff can talk openly and feel safe. It takes time and money to build trust and make sure everyone is treated with respect.
Things we could still learn about
This research tells us that we don’t know everything yet about people with dementia from different equality groups in care homes and we have more things to learn. CQC can lead the way in doing more research, or encouraging others to do research, and telling others what they find.
Here are three areas that more can be learnt about:
- CQC can help make research happen in the care homes where adults get care. They can do this in different ways, by doing the research themselves, asking others to do it, or telling everyone why research is important. They can also collect stories about places that do a good job and share those stories with others.
- CQC can do their own research to learn even more about how to make things better for people with dementia who live in care homes.
- CQC can help with more research to learn about the things we don't know yet in this area. For example, we could do more research about how to take risks in a safe way, or about how people from different equality groups make decisions about whether or not they choose to live in a care home.
Conclusions
We couldn't find a lot of information about what good care for people with dementia looks like, especially for those who are from different equality groups or live in poorer places. But from what we did find, we know that taking care of each person in the way they want to be cared for is important. Making sure the people who help them are confident and well-trained, care homes being made suitable for everyone, good leaders, a diverse team, enough money for care homes, and being part of the community are all really important to creating good care.