Dementia Action Alliance Conference

Over half a million people across the UK are struggling to care for family and friends with dementia with too little support from health and social services, according to the Dementia Action Alliance (DAA), a coalition of charities and other organisations working in the dementia field.

These carers save the UK £7billion a year, but many are close to breaking point from the stress of taking on a very difficult and often distressing job with too little practical or emotional support. The Alliance is calling for a radically improved package of support for carers to help them cope and to recognize the enormous challenges they take on daily.

On 20th November 2013, the DAA launched its Carers’ Call To Action at its annual conference in London. TV presenter and journalist Jennie Bond, who chaired the conference, has first-hand experience of caring for a close family member with dementia. She said: “’Dementia is a cruel disease which can have a devastating effect on carers, and it’s about to reach epidemic proportions in the UK. We need to tackle this issue now and provide carers with the support they deserve.”

There are approximately 670,000 people living with dementia in England today - and researchers say that number will double in the next 30 years. At present over half a million people act as primary carers for people with dementia. The DAA say that leaving carers to cope by themselves, with the enormous pressures they face as a result, is a false economy resulting in far greater long-term costs.

“Providing timely information and ongoing support for carers will mean the state can continue to save money in the short term and reduce the need for much more expensive care for people with dementia from the NHS and social services,” said Rachel Niblock of the DAA. “But it also saves money in another way because carers who are left to fend for themselves without support often become unwell as a result of the exceptional strain experienced in caring for somebody with dementia.

“The Prime Ministers’ Challenge on Dementia highlighted that carers of people with dementia save the UK £7 billion a year, and that’s going to increase dramatically as the number of people with dementia rises. The health service simply couldn’t cope with the consequences if carers reach breaking point - so putting in the right support for them is essential.”

The decision-makers who run England’s health and social services will be asked to sign up to the principles of the Call to Action, which include recognising the importance of the work that carers do and providing them with expert advice and support. The campaign will start by asking every one of the 152 new Health and Wellbeing Boards in England (set up as part of the NHS reorganization) to sign up to the Call to Action in principle by March 2014. It will then be working with leading Boards to develop common standards for excellence in carer support.

Simon Kitchen, Executive Lead at the Dementia Action Alliance, said: “All too often people with dementia end up in hospital if their carers don’t get the support they need, and research has shown conclusively that hospitals are the worst place for people with dementia.”

Professor Graham Stokes, director of dementia care at Bupa and a co-chair of Dementia Action Alliance, said: “As the world population ages, improving dementia care and support will be one of our greatest healthcare challenges. The traditional system of informal care by family and friends will require much greater support.

“We need to ensure that people living with dementia, both now and in the future, have a good quality of life, and that those caring for them receive the support and advice they need to carry out what can be a difficult and demanding role.”

The Carers’ Call to Action sets out the following rights for carers of people with dementia:
- the right of carers to have their needs recognised
- the right of carers to be recognised as partners in care
- the right of carers to have access to expert advice
- the right of carers to have their changing needs monitored
- the right of carers to access good quality care

The Dementia Action Alliance is a coalition of over 700 organisations which aim to improve the lives of people living with dementia through the National Dementia Declaration, which sets out seven outcomes that would improve the lives of people with dementia and those who care for them. The Declaration provides an ambitious and achievable vision of how people with dementia and their families can be supported by society to live well with the condition.

Alliance members work towards delivering this vision through committing to actions within their organisation and undertaking joint programmes of work, for instance in care, housing and schools.
For more information about the Dementia Action Alliance go to www.dementiaaction.org.uk/

This article was provided by the Solicitors for the Elderly December 2013 newsletter.