Paul Edwards: Dementia Care in the UK - November 2007

In August 2008, Care Services Minister Ivan Lewis announced that the government is to produce a national dementia strategy in response to the ever-increasing numbers of people being affected by dementia. There is a clear recognition in this announcement that the current systems of care are failing too many people with dementia and their families.

The government's recent announcement sets out a twelve-month programme of development that eventually will lead to an overall strategy to respond to some of the core areas of concern around dementia care. The working parties set up will look at developing a strategy across three key areas:

• Improving awareness and understanding of dementia across health and social care professionals and also amongst the wider public
• Early diagnosis and interventions
• Improving the quality of care for people with dementia and their carers

Teams are currently being set up with key stakeholders leading and inputting into the development of the strategy. This is the first time we have seen such a concerted effort to improve dementia care in the UK and, broadly speaking, it is very welcome. There is a clear need to raise our collective awareness about dementia in our society and also develop a range of services that meets the need of a growing population living with the effects of dementia. The questions are, will the strategy lead to improvements in services, and crucially, will the strategy recommendations be accompanied by the necessary resources?

Current indications are that there is no new funding to accompany any recommendations and, at its worst, this whole exercise may leave workers in the field, carers and people with dementia more frustrated and disillusioned. Already doubters and cynics have been quick to dismiss the impact this strategy will have. My view is that the issues are too important to ignore and for too long people with dementia, their carers and those who work in dementia care services had received a lower level of service, a lower status in society and lower resources than other challenges to health and social care.

Dementia explained

Dementia is misunderstood by many in our society, and it can be one of the most feared aspects of ageing. The term dementia is really an umbrella term for many different diseases that affect the way the brain functions. Typically people who experience a type of dementia may have difficulties with memory, perception, judgement and language expression and communication. A person¿s ability to undertake daily tasks may also become increasingly disabled.

Generally, most types of dementia are progressive and at present many forms of dementia have no cure. The most common type of dementia is Alzheimer's disease, and this was first diagnosed by German psychiatrist Dr Alois Alzheimer in 1906. The UK-wide picture of people with dementia is as follows:

• Dementia currently affects over 700,000 people in the UK - this is estimated to rise to over 1 million by the year 2025
• 18,500 people with dementia are aged under 65 years
• Dementia affects one person in 20 aged over 65 years and one person in five over 80 years of age

Information from the Alzheimer's Society (2007) Dementia UK: The Full Report.

It is no surprise then that action is going to be needed if we are to meet the demands of this patient group. These figures are well known, and have been for a number of years. It can be argued that we as a nation have been slow to respond in the face of this growing demographic.

Experiences

Behind all these figures are real people facing real challenges in their everyday lives. Some of their stories reflect our society's collective failure to respond to their needs and make uncomfortable reading. Some of the stories we receive at Bradford Dementia Group from the carers of people with dementia have the power to reduce even the strongest of personalities to tears.

The following comments were sent to the Bradford Dementia Group from a sibling of a person who passed away in a nursing home in the UK. It recounts a story of a woman with dementia whose underlying pain and distress related to lung cancer was never investigated by care professionals and the woman's cries of pain were interpreted as part of her dementia:

"My sister died of untreated Lung cancer, not even an Aspirin was given, when she was screaming around the nursing home. The staff told her family that this behaviour was part of the dementia and obviously her young children and her husband were distraught.

"My reason for emailing you is that maybe somewhere along the line someone will step in and say just because a person has dementia doesn't mean they don't have something else wrong with them when they are screaming, banging and throwing furniture around the home."

It is possible that the team caring for this person may have misunderstood how people with dementia express their feelings and that often, physical pain can manifest itself in unconventional ways when a person's cognitive abilities are failing.

How can we as a society ignore such powerful accounts of the sometimes devastating effects of living with dementia? And why have we for too many years ignored the voices of people with dementia and their carers who have been struggling to access care that meets their needs?

I believe that the central reason for our society's lackluster response to dementia lies within the attitudes embedded in our society. If the 700,000 people currently living with dementia were all aged between the ages of 11 and 35, then our societal response would be very different to the one we have today. There would be an outcry if services were not in place, if individuals ended their lives in dreary residential and nursing homes and if there was no serious medical research money ploughed into finding a cure.

How would the 'demented' be described in the media or by politicians or even by professionals? Would we be describing these people in the same derogatory way as we current describe people with dementia in our society? Can you imagine having to sell your house so you could pay extra top up fees for your children to get into the best nursing or residential home?

In short, the current status quo of care for people with dementia would not exist. Politicians would be forced to respond, or lose their seats. Medical professionals would find it less easy to explain away, and assess and diagnose people much quicker than they do at present.

Nurses, (my own profession) would be less quick to leave people to struggle to eat, drink, wash and dress on their own and would spend far more time engaging in a more human way than I currently observe on my travels through health and social care in the UK. There would be clear, basic levels of knowledge about dementia for all those who work in health and social care. Currently, I meet far too many professionals who do not possess even a rudimentary understanding of dementia and its effects on the brain and yet are asked to care for people with many complex needs.

Changes ahead

We as health professionals need to place more importance than we currently do, in educating ourselves about dementia. Any government strategy has to have this at its heart, and crucially we then have to change how we speak, educate and ultimately provide care for people with dementia. Within the new strategy there needs to be an unequivocal promotion of professional education and training in dementia care and the central funding needs to follow.

It would be fool hardy though, if the strategy focused only on societal attitude change and education and training of professionals. Any strategy must address the quality of services and provide clear structures for improvement. The strategy should dictate the boundaries of what is and what isn't acceptable in care services. It should leave commissioners, inspectors, care providers and the public in no doubt of what people with dementia and their carers are entitled to.

Our media-savvy care organisations need to be encouraged to actually mean what they say in their glossy brochures, newsletters, and focus group-driven mission statements. At its most basic level, the strategy should have an insistence that people can expect good human care, where choices are respected and acted upon, where the experience of dementia is taken seriously and where the relationships are based on respect, dignity and trust.

Much work has been done across the UK and internationally to improve the care for people with dementia and their carers. In the UK minimum standards of care are monitored, national inspection services have raised the bar of what is expected in care homes, and there are many enlightened care professionals, researchers, service managers and policy leaders carrying out fantastic work. There is a struggle though, to meet demand and without a strong political will to address shortfalls in supply, dementia care has often received much less attention and funding than other health issues.

We need to invest more into dementia care at the point of diagnosis and community care so that people with dementia are able to live in their own communities for longer and with support from their local services. Currently not enough is being done to support people with dementia and their carers in their own homes.

We have seen developments in all aspects of dementia care over the last 20 years. Our knowledge is better, our services are becoming more person-centred, and across the UK there are expanding pockets of excellence in dementia care.

Largely this has been done in an uncoordinated way, on shoestring budgets, and with little central support. My view is that it is time now to take these issues more seriously than we have before and to raise our collective consciousness about the needs of people with dementia and their carers.

It will be a monumental societal failure if we cannot make things better for all concerned. Dementia forces us to face up to moral, ethical, clinical and financial challenges. If we can, through this strategy, make things better for some of the most overlooked and marginalized in our society, we make things better for all.