Today sees the start of the annual Carers Week, an important campaign to help raise the profile and needs of carers in the UK and celebrate the vital contribution they make to society. This year’s theme is ‘Carer Friendly Communities’, which dovetails neatly with the long-standing ambition to create ‘Dementia Friendly Communities’.
The idea of ‘friendliness’ it seems is everywhere, and carers are certainly long overdue their dose of understanding, support and recognition. However, the ambition to create ‘Carer Friendly Communities’ isn’t going to be one that is easily achieved.
Carers face a multitude of issues and problems, which (in no particular order), include:
- The low level of Carer’s Allowance, and fears that it could face cuts in the future (rather than being increased). Many carers are already on the breadline or in debt.
- Prejudice in the workplace. Many employees who are also carers can find it impossible to juggle employment and their caring role, and unlike the awareness of issues parents of young children face, the issues carers face when caring for adult loved ones are often poorly understood by employers.
- Lack of training. While training for our health and social care workforce may be patchy, education and training are often completely non-existent for carers of loved ones. It’s a role you often ‘fall into’ and have to learn as you go, despite some of the demanding and complex tasks many carers undertake that, in the professional workforce, it would be unthinkable not to provide training for.
- The complexity of navigating health and social care systems. This complexity can be so great that professionals in health and social care who then become unpaid carers for family members or friends often report huge difficulties with navigating the systems they work in. Against that backdrop, what hope is there for the majority of carers facing these circumstances?
I’m sure even the most ardent supporter of ‘Carer Friendly Communities’ would agree that it will be impossible for communities alone to provide solutions to these issues, but that shouldn’t detract from the laudable aims of ‘Carer Friendly Communities’, not least because I believe that collective local action can improve the lives of many people in our society, including carers.
Potentially living in a community that understands the needs of carers could help with:
- Support for carers. This could be anything from social interaction with likeminded people to help with having a break or a holiday (often carers want a holiday to be facilitated that can include their loved one).
- Greater understanding of the needs of carers and the people they care for. This could be anything from making transport more accessible to providing toilets that a carer and the person they are caring for can go into together in order to change an incontinence pad.
- A more enlightened attitude. As I explained in my G8 Dementia Summit Film, we would take my dad to coffee shops and people would often stare because we had to spoon drinks into his mouth. Educating communities about different conditions, and the ways in which families are supporting people living with those conditions, can help to remove a lot of stigma and discomfort families who are caring for a loved one with conditions like dementia feel when they go out. If we don’t address these issues they can, and do, lead to unbearable levels of social isolation.
- Support for life after caring. This is a vitally important area of carer support that is largely ignored. If a person goes from being a carer for many years to no longer fulfilling that carer role, for whatever reason, that is a life-changing juncture for that individual. If the person they have cared for has died, there is also a need for specialised bereavement counselling that takes into account not just the personal relationship the two people had but the care and support relationship too.
My reservation is always around how the extra support carers need is going to be funded. We know that social care is on its knees, and although there is a huge amount of potential to turn care homes into community hubs (this could help with some of those socialising and training issues), or to utilise and develop some of the fantastic potential within the charitable and community interest sector, initiatives – however well-meaning – cannot survive on fresh air alone.
My personal view is that as a country we don’t value carers enough. Time and time again the huge contribution they make to society and the immeasurable problems that would be created if every carer suddenly decided to stop caring are conveniently forgotten. We must NEVER overlook the fact that without families, friends and neighbours caring for the people they love and are close to, our health and social care systems would completely collapse. Carers prop up so many services, helping to keep loved ones out of hospital and out of care homes, but many do this as isolated, bewildered, exhausted and marginalised individuals who often fell into caring and see no ‘way out’.
In reality, most carers actually don’t want a ‘way out’, but they are driven to despair and hopelessness by the lack of support. It is a lack of support that shames us all. Greater support for carers would be amongst the finest investments we could ever make to our country for today, tomorrow and the future. If ‘Carer Friendly Communities’ proves to be one way to facilitate that then great, but I would also urge our politicians and policy makers to do their bit, because without their input and influence this focus on carers will just be another well-meaning exercise with no tangible inroads being made into the issues that trouble carers the most.
Until next time…