Carers for people with dementia struggling in silence

Care home complaints

Published 4 February 2016

The UK's largest research trial of support for carers of people with dementia launches today.

Nine in 10 carers for people with dementia experience feelings of stress or anxiety several times a week – and a further 80 per cent find it difficult to talk about the emotional impact of caring, finds an Alzheimer's Society survey*. To help address this, Alzheimer's Society and Oxford Health NHS Foundation Trust are launching Caring For Me and You – a research trial that will test tailored online cognitive behavioural therapy (CBT) and support specifically designed to help carers find ways of coping with the pressures of their role.

Many carers find it very difficult to access any help and support – nearly 40 per cent of carers surveyed provide round-the-clock care, and many struggle to take time out from their caring commitments. When they do, they may face waiting times of more than a year** – therefore immediately available online therapy may provide a desperately-needed solution. Caring For Me and You will test whether online access to CBT or tailored information and support can help support carers' mental health.

The research team needs any carers of people with dementia who have felt the emotional pressures of caring, and have access to a computer, to come forward and help test the effectiveness of these new online therapy packages. 

Sleepless nights 

Caring for a person with dementia is unlike caring for someone with any other condition or disability, due to the complex, unpredictable and progressive nature of dementia. Alzheimer's Society research finds that carers often struggle to open up about how this can make them feel – almost 60 per cent of carers surveyed experience feelings of guilt when seeking support and say they feel like they are putting their needs before the person they are caring for. Carers of people with dementia have told Alzheimer's Society of how they have struggled with exhaustion due to countless sleepless nights, stopped socialising, and neglected their own health.

CBT is a well-established treatment for anxiety and depression that enables people to develop coping strategies by working through their thoughts, feelings, and approaches to particular situations. More recently, CBT has been made available online through some NHS services. Until now, online CBT has not been tailored to the needs of people who might experience stress and anxiety as a result of their caring role. Likewise, support and education groups for carers have been shown to be helpful – the online package that has been developed is based on these group sessions, and will also be tested to see whether it can be beneficial.

A 'silent army' 

There are 700,000 people in the UK who care for someone with dementia, who are mostly unpaid and collectively save the UK economy £11.6 billion per year. With an ageing population and more people finding themselves in caring roles, an easily accessible form of online support could have a widespread impact.

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 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.

'Research into care provision for both people with dementia and carers has been neglected for too long. Alzheimer's Society has committed £100 million towards research into innovations in dementia care, treatment, and prevention over the next decade.'
Dr Jane Fossey, of the Oxford Health NHS Trust and 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.'

Physically and emotionally exhausted

Michelle Pierce (33) lives in Leeds and provided round-the-clock support for her father, Dennis, who was diagnosed with young onset dementia (2012). Michelle said:

'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.'
Heléna Herklots, Chief Executive of Carers UK, said:
'From our research with carers, we know that looking after a disabled, seriously-ill or older loved one can have a huge impact on a carer's physical and mental wellbeing. Indeed, almost 9 in 10 carers looking after someone with dementia told us that they have felt more stressed as a result of their caring role, with half saying they have experienced depression.

'The pressure of caring for a loved one can be very isolating. Caring can take up so much time and energy that there's little left over for yourself; this can make it hard to look after your own health and wellbeing, maintain friendships, and get a break from caring. What's more, these pressures can be exacerbated when a carer doesn't know where to turn for help.

'Despite being part and parcel of everyday life, caring can also be intensely personal and difficult to talk about. We welcome any initiative that could help carers better cope with and overcome the challenges that caring for someone with dementia can bring and we look forward to the outcome of this trial.'

*The research team are asking for carers of people with dementia to check their suitability to take part in the study by signing up

**Caring for Me and You has been generously supported with help from Nominet Trust and Stavros Niarchos Foundation.

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