Caring for carers

From the spring 2016 issue of our Care and Cure magazine, read about a project looking at online support for carers looking after people with dementia.

Alzheimer's Society is funding a project to find ways to help carers access much-needed therapy and support so that they may cope better with feelings of stress, anxiety and depression. 

It is no secret that those who care for people affected by dementia are vital contributors to our health and social care system. Unpaid carers account for £11.6 billion of the economic cost of dementia yet many of them are struggling in silence, often dealing with a myriad of emotions including stress and depression.

An Alzheimer's Society survey carried out in January 2016 found that 90 per cent of carers experienced feelings of stress or anxiety several times a week or more. Of them, 60 per cent said that they struggled to talk about the impact of caring because they felt guilty for putting their own needs ahead of the person they are caring for. 

Testing times

To improve support for carers of people with dementia, Alzheimer's Society, supported by donations from Nominet Trust and the Stavros Niarchos Foundation, has funded researchers at Oxford Health NHS Foundation Trust to see if online therapy and support packages can be of benefit. We are asking carers to sign up to the trial, calledCaring For Me and You, to test these online packages. 

Dr Jane Fossey, the lead researcher on the study, said, 'Carers often feel the profound effect the role can have on their own lifestyle – spending long hours providing care, juggling their own needs with those of the person they are caring for and forfeiting their social time. As a result, carers of people with dementia are more likely to experience stress and depression. 

'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.'

Finding the time

Due to the complex, progressive and unpredictable nature of dementia, carers may feel that they cannot spare the time to see their doctor. Others find it difficult to arrange for replacement care, while some feel uncomfortable about a therapist coming to their house. The researchers believe that delivering the support packages online may help to overcome some of these difficulties, as people can access the packages at any point from their own home.

Dr Doug Brown, Director of Research and Development at Alzheimer's Society, said, 'In this country, unpaid dementia carers prop up our health and social care system. This silent army of husbands, wives, sons and daughters spend 1.3 billion hours a year providing care. This can take an enormous toll on their emotional health and wellbeing. 

'Carers tell us that even when they have taken that difficult first step by going 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.'

Support packages

The participants will be randomly assigned one of three packages – online cognitive behavioural therapy (CBT) alone, online CBT with additional telephone support, or a specialised carer information and support package. CBT is a psychological intervention that enables carers to develop coping strategies by working through their thoughts, feelings and difficulties. There is evidence for the effectiveness of CBT and it is now established as a first-line approach for the treatment of mental health conditions including depression and anxiety.

Each package consists of 20 online sessions of 20–30 minutes each, which can be completed at any time over a 26-week period. The researchers will analyse the results to find out whether any of the three packages help carers to manage feelings of depression, anxiety or stress. 

If this approach is shown to be successful, the findings could be used as an evidence base to support a potential national roll-out of the scheme. 

'A huge difference'

Michelle is 33 and one of our Research Network volunteers, who use their personal experience of dementia to review research grant applications.

When her dad, Dennis, was diagnosed with early-onset Alzheimer's, she found herself struggling to cope with her role as his carer. She spoke to us about why she believes that carers need to be able to access support more easily at home.

'Dad used to live by himself and would call me if there was anything wrong, day or night. If ever he couldn't get hold of me he would immediately ring the police. I felt permanently on edge, waiting for the phone to ring, and I would find myself waking up in the night because I thought I had heard the phone.

'I was physically and emotionally exhausted – I stopped seeing my friends and I couldn't sleep. I was desperate for help, but kept putting off going to the doctor because I just didn't have the time. If it had been as easy as logging on at home to get support it would have made a huge difference.'

Anyone aged over 18 who is caring for someone with dementia at the moment and not currently receiving professional mental health support can sign up to see if they are eligible. You will also need access to a desktop or laptop computer that is able to access the internet. 

Sign up by visiting or call 01865 902833.

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