Dementia carers struggling with stress and anxiety due to lack of support

The UK's largest research trial designed to support carers of people living with dementia has been launched.

The trial will test Cognitive Behavioural Therapy (CBT) and offer carers support when they feel under pressure caring for a loved one with dementia.

More than 700,000 people in the UK are providing care for someone living with dementia, most are unpaid and collectively save the UK economy £11.6bn per year. As the population has aged and increased, more people have found themselves performing a caring role, and access to online support could have a significant impact on their well-being.

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 1.3bn hours a year providing care. This can take an enormous toll on their emotional health and well-being.

A silent army providing care

“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 £100m towards research into innovations in dementia care, treatment, and prevention over the next decade.”

A study conducted by Alzheimer’s Society has revealed that 90 per cent of people who care for someone with dementia experience feelings of stress and anxiety multiple times a week, while 80 per cent of people find it difficult to talk about the emotional impact their role as a carer has on their own well-being.

To help address this, Alzheimer’s Society and Oxford Health NHS Foundation Trust have launched 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.

Feelings of guilt and exhaustion

Michelle Pierce is 33 and lives in Leeds. She provides round-the-clock care for her father Dennis who was diagnosed with young onset dementia in 2012. She 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.” Often carers can find it difficult to access the help and support they need, with nearly 40 per cent of carers surveyed providing round-the-clock care and struggling to find time to take a break from their caring commitments.

Providing care for someone with dementia is unlike providing care for someone with any other condition or disability due to the unpredictable, complex and progressive nature of the condition.

Alzheimer’s Society research has revealed that carers struggle to express how their role as a carer makes them feel, with almost 60 per cent admitted feelings of guilt when looking for support as they felt they were putting their own needs ahead of the person they were caring for. Other survey participants said they felt exhausted due to sleepless nights and had been neglecting their own health and stopped socialising with friends.

The survey further revealed that when they do find time to access help and support, they face waiting times of more than a year to access talking therapies, making online therapies a more instant solution.

Chief executive of Carers UK, Heléna Herklots, commented: “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 well-being. Indeed, almost nine out of ten 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 well-being, 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.”

Paving the way for national, accessible support

Caring For Me and You has been designed to test whether online access to Cognitive Behavioural Therapies or access to tailored information can help the mental health of carers.

CBT is an established treatment used for anxiety and depression and helps people to develop coping strategies by working through their feelings, thoughts and approaches to specific situations and is available online through some NHS services.

Lead researcher on the study, Dr Jane Fossey, of the Oxford Health NHS Trust and 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."

The research team behind the test are looking for carers of people with dementia who have experienced emotional pressure from caring and have access to a computer.

Carers who are recruited to take part will test one of three online packages as part of the trial, consisting of 20 sessions of 20-30 minutes each over a 26 week period.

The trial is available to people aged 18 and over experiencing feelings of anxiety and stress as a result of providing care for someone living with dementia.

For more information and to check your eligibility, visit: www.caringformeandyou.org.uk.