”I have dementia, but I still have a life to live”
”I have dementia, but I still have a life to live”
15 November 2012
How to respond to the growing challenge of dementia with patchy levels of diagnosis, care and support were among the issues discussed at Public Service Events’ Dementia, a National Crisis conference in Manchester. Caroline Pennington reports
October saw the new Health Secretary, Jeremy Hunt, promise that NHS dementia care in England would be the best in the world by 2015. A week prior to this bold affirmation the mood on the challenge of dementia at the Manchester conference centre was one of hesitant optimism gritted with realism.
Andrew Chidgey, director of external affairs at the Alzheimer’s Society, reminded delegates of the pervasive nature of the illness. “It is the personal experience of people living with dementia, their carers and families, which people are finding very difficult,” he said. “People are being diagnosed late, or not at all. People often are not getting the care and support – at the right time – that they need.”
Yet a strong public awareness that dementia was now an issue was encouraging, said Chidgey: “People are talking publicly about dementia in their workplaces, families and local communities and are trying to work out what we can do to tackle it. The Prime Minister’s Challenge on Dementia shows the government is worried about dementia in terms of access to care, quality of care, cost or services. We’ll be working with the government and holding them to account for their plans.”
Dr Julia Botsford, research lead at the Admiral Nurse Academy, Dementia UK, warned of the financial and personal implications of increased dementia numbers on society. “Research tells us that caring for somebody with dementia is more stressful and has more impact on carers than caring for other types of disabilities and medical conditions,” she said.
“Equally, quality of life for people with dementia could be improved. What do people with dementia see as important? A recent study led by the Alzheimer’s Society and conducted by the Mental Health Foundation found that people with dementia valued relationships, the ability to be involved, having people to talk to and not feeling isolated as important.
“Improvements in care and support could be found by looking at the evidence and finding out what care works well, by involving people with dementia and their families.”
Making communities across England more dementia-friendly was a theme throughout the day. On hospital care, Professor Alistair Burns, national clinical director for dementia at the Department of Health, said: “Our aspiration is that every hospital in England will be committed to becoming a friend to people with dementia by March 2013. That means the environment will be appropriate, the workforce will have the opportunity for information and training, people are identified with dementia through CQUIN (Commissioning for Quality and Innovation plan), there is support for people with dementia, and that everyone has a care plan.”
On building on the work of the National Dementia Strategy, Burns highlighted five areas of importance including early diagnosis in primary care, dementia in the general hospital, dementia in care homes, reduction in the use of anti-psychotics, and support for carers.
The challenge to the care sector was how to deliver services differently to people with dementia, said Martin Green, chief executive of the English Community Care Association. “We have to recognise the diversity of our sector,” he said. “We have to start developing approaches which enable people to engage with this and challenge everybody to start to improve their practice.”
The Gold Standards Framework on end-of-life care was an important area of work, he added. “People with dementia might have cognitive problems and issues around communication but they have the same rights as everybody else to a good quality of life, and a good quality death. Presently, if you look at the criteria for entry into a care home, it is very much an end-of-life placement.”
Integrating services around dementia was vital, Green said. “People are falling between services because of funding and structure disparity. We’ve got to turn integration from rhetoric into a reality. I’m sick of politicians talking the talk of integration, but not getting the structures right that enable and support it.
“So part of our challenge to the Prime Minister is ‘how do you deliver integration in a system which is fragmented because of its funding structures?’ It’s bizarre that we have a system where £124bn is in health, and only £8bn is in social care.
“That cannot be the right apportionment of resources when we’re living in a situation now where the health service is predicated on its old model of ‘diagnose, intervene, cure’ and the reality of citizens today is that they’re living with long-term conditions.”
Raising awareness about dementia to reduce fear and stigma was invaluable, Dr Ann Johnson, a nurse and nursing lecturer who was diagnosed with Alzheimer’s disease at the age of 52, told delegates.
“Be patient with us,” she said. “It takes us a bit longer to take things in and deal with them. Use memory joggers. They help us.
“It’s important to emphasise that a diagnosis of Alzheimer’s is a sledgehammer. But it is not the end of life. You still have a life to live. So while I have dementia, I still have a life to live, and I will live that life. Please be patient and try and understand the sheer distress and terror I live in every day with my Alzheimer’s.”
