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The UK’s largest research trial of support for carers of people with dementia, supported by CSM statisticians, has now launched nationally.

Offering carers of people with dementia easily accessible support

The global number of dementia cases is rising and so too are the number of relatives and friends that take on the role of primary carer. These carers carry a heavy emotional load and often experience feelings of stress and anxiety. Alzheimer’s Society and Oxford Health NHS Foundation Trust have launched a new research trial, supported by CSM statisticians, to evaluate the effectiveness of new online support packages specifically developed for people who care for someone with dementia. Caring for Me and You will test tailored online cognitive behavioural therapy (CBT) and support designed to help carers to cope with the pressures of their role in an easily accessible format. The results of this study could open up new avenues of support for carers, in their own homes, when they need it.

Being able to log on at home to immediately access tried and tested support and coping strategies has the potential to transform the lives of tens of thousands of carers. - Dr Doug Brown

Dementia, which describes brain disorders that trigger a loss in brain function, already affects 850,000 people in the UK. They are cared for by an army of 700,000, most of whom are unpaid family members who collectively save the UK economy £11.6 billion per year. Caring for a person with dementia is uniquely challenging, due to the complex, unpredictable and progressive nature of the disease. An Alzheimer’s Society survey found that many carers experience feelings of stress or anxiety and negative effects on their own health.

Help and support is available for carers, through GP services and initiatives like the National Dementia Helpline, but it can be difficult to access. Many carers provide round-the-clock care and cannot take time out from their caring commitments. Alzheimer’s Society has also found that carers often struggle to open up about how their caring responsibilities make them feel. Almost 60% of carers surveyed feel guilty about seeking support and say they feel like they are putting their needs before the person they are caring for. Carers need new models of support that better reflect their situations.

Dr Doug Brown, Director of Research and Development at Alzheimer’s Society, elaborates: “Carers tell us that even when they have taken that difficult first step and gone to see their GP, accessing any sort of face-to-face therapy presents a whole new challenge – from finding the time to attend and getting care cover to the extremely long waiting times facing many for these treatments. Being able to log on at home to immediately access tried and tested support and coping strategies has the potential to transform the lives of tens of thousands of carers.”

 It is clear that an easily accessible form of online support could offer carers the help they need. Caring for Me and You is testing whether online delivery CBT or tailored information and support can help carers to manage their feelings of stress and anxiety. 750 carers will be recruited and will test one of three online packages in 20 online sessions of 20-30 minutes each over 26 weeks.

The results from this trial could open up a whole host of new ways for carers to access help and advice. - Dr Jane Fossey

CBT is a well-established treatment for anxiety and depression that helps people to develop coping strategies by working through their thoughts, feelings, and approaches to particular situations. Although CBT has recently been made available online through some NHS services, online CBT has not yet been tailored to the unique needs of carers. Support and education groups for carers have also been shown to be helpful. Caring for Me and You is bringing the benefits of both support groups and CBT into the comfort of carers’ homes. The study will test whether these packages are beneficial.

Dr Jane Fossey of the Oxford Health NHS Trust, and lead researcher on the study, said: “This study could have important implications for how carers of people with dementia are supported to manage stress and depression. The results from this trial could open up a whole host of new ways for them to access help and advice. If shown to be effective, Caring for Me and You could pave the way for a national roll-out of this tailored and accessible support.” 

Carers of people with dementia who have felt the emotional pressures of caring and have access to a computer are invited to join the study to help test the effectiveness of these new online therapy packages. You can check whether you are eligible to take part by signing up at www.caringformeandyou.org.uk.

Caring for Me and You is supported with help from Nominet Trust and Stavros Niarchos Foundation.