Stay positive

The role of the carer

Caring for a person with dementia has its ups and downs. We want to explore the experiences of carers and offer some ideas for how you can look after yourself.

On this page you will:

hear carers speaking from experience
learn about our research findings which emphasise the importance of carer wellbeing
hear about the positive experiences of caring people have told us about

When the activities stopped, I felt guilty that I should be trying harder.

A carer talking to our researchers about the impact of the COVID-19 pandemic

How do people think about caring?

In the video below, Julia discusses the realities of caring for someone with dementia and how to stay positive.

Click on the image below to watch the video.

In the video below, Suzanne Mumford (Head of Nursing Services and Dementia Care at Care UK) discusses her personal and professional experiences of caring for a loved one. Among the topics she covers are:

the progression of care needs
the emotive aspects of caring
the importance of open and honest conversations

Click on the image below to watch the video.

In the video below, different people offer their suggestions for how to approach the role of carer.

Click on the image below to watch the video.

Looking after yourself helps both of you

Many of the people we spoke to mention feeling guilty for taking time out of caring to look after themselves. Guilt is a natural impulse for carers, but as Jane points out looking after yourself helps not just you but the person you’re caring for.

Some of our research has looked at how the overall wellbeing of the carer can have an influence on the wellbeing of the person with dementia.

We’ve found that:

How the carer experiences caring makes a difference not just to them, but also to the person they are caring for. For instance, if a carer thinks of themselves as stressed, then the person with dementia rates their own wellbeing less positively. Click here to read an accessible summary of this article.
If either the person with dementia or the carer is struggling with depressive symptoms, then this affects the other person. So it is important to look at the combined effect of depression in caring relationships. Click here to read an accessible summary of this article.
If either the person with dementia or the carer views the quality of their relationship as low, they have poorer quality of life. How each individual views their relationship really matters, and we need to support people to maintain positive relationships. Click here to read an accessible summary of this article.

All the evidence tells us that carers need to take care of themselves, and that this has benefits for both of you. Setting in place what you need to stay well as a carer is a form of caring as well as being important self-care.

Positive experiences of caring

We have been speaking to carers about what makes a difference to their lives since 2014. We know that being a carer can be a challenging role and that carers need supporting in this role.

However, we also wanted to understand which aspects of the caring role people found positive. We asked 900 carers ‘What is your greatest satisfaction in caring?’. They identified the following 8 topics: