Caring for Carers

The effects of brain injury can be just as devastating for families as it is for individuals. It can change relationships in an instant, turning partners into carers and transforming the lives of entire families.

At Headway, we know how important it is for carers and families of people with brain injury to have access to support and respite. Sadly, our research shows that brain injury carers are not receiving the help they so desperately need.

'Local authorities failing brain injury carers', says Headway research

Carers of people with brain injury are failing to get adequate support from their local health care providers and social services departments, causing long-term mental and physical health problems, according to the results of research released by Headway - the brain injury association during ABI Week 2012.

The survey of carers of people with brain injury has examined the burden of caring for someone with a brain injury and the quality of life that carers experience. The research revealed that the physical and mental health of brain injury carers is of significant concern, with a lack of support from GPs and local authorities likely to be a contributing factor.

"My whole life has been turned upside down - as have the lives of Jag and our daughters," said Jas. "I now see myself as both a mother and father to our kids. I'm a carer, not a wife; I lost my husband five years ago and I'm still grieving - even though he's still here with us."

- Jas Tara

The study found:

• 60% of brain injury carers feel they do not receive adequate support in their caring duties.
• Just 7% of brain injury carers receive help from social workers in their caring duties.
• Only a quarter (27%) of brain injury carers have received a carers assessment.
• Half (49.5%) of survey respondents were not aware they were entitled to a carer's assessment, despite the legal requirement for local authorities to ensure carers are made aware of their right to an assessment.
• Just 24% of brain injury carers are satisfied with their health. Conversely, a worrying 8% are 'very dissatisfied' with their own health.
• 18% of brain injury carers rate their quality of life as 'poor' or 'very poor'.
• 59% are showing signs of clinical depression with 21% in the severe or extremely severe range.

"This is a shocking failing on the part of local authorities across the UK," said Peter McCabe, Chief Executive of Headway. "Caring for a loved one who has a brain injury can bring significant pressures and strains, and carers need help.

"Health care services, including GPs, have a duty to diagnose and treat people who are experiencing depression and physical health problems as a result of caring for someone with a brain injury. The results of this survey clearly demonstrate that by and large they are failing to do so. In addition, local authorities have a responsibility to assess a carer's needs, and where appropriate, provide support services such as respite care, professional carers, equipment and information.

"A carer's assessment is the first step to obtaining that help. The fact that people aren't even being made aware that they're entitled to an assessment means people are being left to get on with the onerous and draining task with little or no support. This is leading to significant health problems for carers and an adverse affect on the quality of life of both carers and those they are caring for."

The survey also revealed:

• 71% of respondents have experienced a deterioration in their financial situation since commencing their caring duties.
• 73% of brain injury carers do not receive a carer's allowance.
• 78% of those that do receive a carer's allowance are still worse off financially.

Stress and burden

The research also examined the level of burden experienced by brain injury carers. Caregiver burden is an all-encompassing term used to describe the physical, emotional and financial toll of providing care, with the Zarit Burden scale the most widely referenced method of assessment used.

Utilising this scale, respondents to the Headway survey had an average score of 25 out of 48. A score of over 16 indicates a clinically significant burden of caring, which could negatively impact on health.

"This figure is of great concern," said Peter McCabe. "The score of 25 is not only way above the level indicating significant burden, but it is also far higher than scores for carers of people with other conditions, as documented in a recent study¹.

"It demonstrates just how challenging caring for someone with a brain injury can be."

The survey also measured the levels of stress, anxiety and depression experienced by brain injury carers. The DASS-21 is a scientific scale that assesses three negative emotional states: depression, anxiety and stress. Analysis from the Headway survey revealed worryingly high levels of these emotions when compared to the general population, with the combined rating for brain injury carers given as 19 (out of 63), compared to just 9.43 among the general public.

Peter McCabe explained: "To put these ratings into context, depression, anxiety and stress are serious problems among this vulnerable group of people. Of real concern is the fact that 59% of respondents to our survey are in the range of clinical depression, with 21% in the severe or extremely severe range.

"The survey also revealed that the more time people spend providing care, the higher the burden, stress, depression and anxiety. Of those who provide over 40 hours care per week, 26% show severe or extremely severe depression, 24% severe or extremely severe anxiety and 26% severe or extremely severe stress.

"It seems likely, given the reporting of a lack of adequate support, that most of these people are not receiving the help they require.

"If this situation is allowed to continue, more and more carers will suffer from serious medical complaints, adding to the future burden on local health and social care services. It will also reduce the ability of carers to provide support to their loved ones, returning the responsibility of care back to the state.

"Primary health care services, including GPs, must work to proactively identify problems as they arise. One issue reported by our survey respondents is that their GPs just don't understand or appreciate the pressures carers are under. That cannot be right and we call on all health care providers to pay attention to what these carers are saying.

"Local authorities must act now by meeting their legal requirements and protecting and supporting this special, dedicated and all-too-often abandoned group of people."

Support

If you are caring for someone who has a brain injury, Headway can help. Our booklet Caring for someone with a brain injury can be downloaded or purchased from our information library. Alternatively, visit the in your area page to see what local support services are operating in your region.

If you'd prefer more remote support, the Headway HealthUnlocked community is a peer-to-peer support network where carers and individuals living with brain injury can post blogs, ask questions, and give and receive support from others who understand what they're going through.