To coincide with National Dementia Carers’ day, lead researcher Jane Fossey explains a new study set up by the Oxford NHS Foundation Trust and how you can take part.
There are hundreds of thousands of people in the UK who provide unpaid care or help for a person affected by dementia, be it for a partner, parent, friend, neighbour or family member. The effect that the condition has on both the person with dementia and those close to them is profound and requires a great deal of adaptations and adjustments to the lifestyles of everyone involved. Many of these changes can have a significant impact on the wellbeing of both the person with dementia and those who help to care for them. An Alzheimer’s Society survey from earlier this year found that 90% of carers reported feeling stressed or anxious at least once a week.
We are conducting a study to find out what kind of support is helpful to people who care for someone with dementia to cope with some of the effects of caring. This Dementia Carers’ Day, we’re asking for people who help to care for a person with dementia to take part in this important research.
It is vital that we find the best ways to care for people affected by dementia, but we must make sure that those who provide care are able to access the support that they need for themselves as well. This support should be easily accessible and address the person’s particular circumstances and experiences. As a clinical psychologist, I know the difference that providing tailored support can make for people who are struggling to cope with the changes happening in their lives.
Caring for those who care
We know that providing tailored information for carers can provide much-needed practical and emotional support. Talking therapies such as cognitive behavioural therapy (CBT) can also help people to better understand their emotions and reactions and find ways to improve their own well-being and relationships. However, many people struggle to access this support. This could be for many reasons – they may be unable to find care cover while they visit the doctor or therapist, they could be uncomfortable with having a therapist visit their home or just not have the time to meet in person due to the 24-hour nature of looking after a person with dementia.
Recent research has shown that online delivery of information support and therapies can be effective in helping people to manage certain feelings and emotions. However, there currently isn’t any therapy available online that is specifically developed for people who help someone affected by dementia.
We believe that delivering support and therapy online could benefit people who help to care for a person with dementia as it can be accessed more easily and flexibly, in the comfort of the person’s own home at any time, day or night.
However, currently we don’t know whether this online delivery method is effective and helpful for people who care for someone with dementia. Therefore I and colleagues at Oxford NHS Foundation Trust have set up a study, funded by Alzheimer’s Society and supported by Nominet Trust and the Stavros Niarchos Foundation, to find this out.
Can you join our study?
The study is designed for people who are struggling to cope with some of the emotional aspects of caring, including feeling mild to moderate symptoms of stress, anxiety or depression. We are looking for people to take part who are in this situation, are living in the UK and help to care for someone affected by dementia. People who are eligible include not just a person’s main carer but anyone who provides emotional or practical help or support to someone with dementia. This could be for a grandparent, friend or neighbour and you are eligible whether the person lives close by or far away, including if they are in a care home.
People who take part will be randomly allocated to receive either a tailored online information and education package, online cognitive behavioural therapy (CBT) or the CBT with additional telephone support. There are 20 sessions each of which last about 20 minutes that can be undertaken at any point over a 26 week period. In order to take part, you will need to have access to an internet enabled laptop or PC. You will be asked to answer questions about how you are feeling at the start, after 12 weeks and after 26 weeks to help us evaluate whether the materials you’ve been using have been helpful.
Over 450 people have joined the study so far, but we need as many people to take part as possible. This will allow us to fully understand whether specially tailored online delivery of therapy and support can benefit people who help someone with dementia, and allow them to cope with some of the challenges that can come with the role.
We need to ensure that people who provide care for a person with dementia are able to take care of their own wellbeing as well as that of the person that they help. If we can find out more about what kind of online therapy and support is effective then there is potential for hundreds of thousands of people across the UK to be finally able to access the support that they tell us they desperately need.