Last reviewed 16 April 2013

How high on the Government’s agenda for action is dementia? Jef Smith reports.

A cure for this most terrible and feared of diseases would make a massive contribution to the national economy, bringing significant savings through a cut in the intensity of the care required for many people living in their own homes as well as those in residential care, a decrease in the numbers requiring domiciliary support, and the freeing up of the time spent by partners, children and other family members in looking after their loved ones. Expenditure on care is currently £20 billion a year and can be expected to rise steeply over the coming generations.

In short, dementia, before one even begins to count the human cost, is a heavy drain on public resources.

The scale of dementia’s impact on society generally, and on health and social care services in particular, is enormous. One in three over-65s will develop some form of the disease, and the majority of these will probably need some form of social care support. Such help becomes almost essential in the latter stages when the capacity to cope alone has almost disappeared and disturbed behaviour can challenge even the most devoted of carers.

According to some sources — though the statistics vary alarmingly — there are currently 800,000 sufferers, but this figure will more than double over the next 40 years as the population ages. Increased longevity is almost universally welcomed in theory, but it comes at a heavy price.

Resources for research are still paltry compared with those allocated to other life-threatening conditions. Hay fever attracts more attention than dementia from researchers specialising on the effects of medication, while there are currently 60 times as many clinical trials for cancer as for Alzheimer’s disease.

The Government’s announcement last December that the funds for dementia research will be boosted by two-thirds with an extra £22 million only begins to correct a massive historical imbalance. Priority areas for investigation in the immediate future include early diagnosis, the role of brain scanning in explaining why some people develop dementia while others escape it, pain management in later life, the use of new communication technologies, and of course the holy grail of a breakthrough on the drug front.

Interviews with home care workers

More specific to social care practice, a report from the Alzheimer’s Society published in 2010 on the basis of nearly 1000 interviews with domiciliary care staff made a range of points about home care. Front-line workers predictably reported that they found working with people with dementia seriously challenging, not least because they can be alone with service users for substantial periods of time. Nor are relations with family members always easy; sharing care can be as difficult as delivering it in isolation.

There were two elements specifically identified by many of the workers interviewed for the study. The first was the problem of recognising the pain clients were experiencing when the ability to use conventional communications systems is severely damaged. The second was dealing with challenging behaviours in people who are not altogether aware of what they are doing.

These are clearly both areas in which more training would be appropriate. Courses should include advanced medication management, humane methods of distraction, communication skills, and a clearer appreciation of when and where restraint may be permissible.

Another familiar problem is presented when a person with dementia goes to hospital. More and more general hospital beds are occupied by elderly people but hospitals are often poorly prepared for their special needs. The unsuitability of most hospital wards as environments for them is by now well known. It was addressed by Jeremy Hunt, the Secretary of State for Health, in a speech to Age UK shortly after he took office last year, when he singled out hospitals in demanding “a step change in the way we deal with dementia”. In January 2013, Sir David Nicholson, incoming Chief Executive of the NHS Commissioning Board, went even further, describing hospitals as “bad places” for all frail older people, but particularly for those with dementia.

His call for a stronger emphasis to be placed on ensuring that more dementia care is delivered in community settings makes obvious sense. It was immediately supported by Andrew Chidgey, Director of External Affairs at the Alzheimer’s Society, who said, “People with dementia are going into hospital unnecessarily, staying too long and coming out worse. Supporting people with dementia in the community will prevent them reaching crisis point.” The implications for expanding the role of domiciliary social care are obvious.

Better community support is, however, only a part of the solution. Like everyone else, people with dementia have a range of health needs, but during a stay of as little as a week, many patients are moved several times, each shift involving their adapting to a new environment, a fresh staff team and a different regime. Could there be any more effective recipe for undermining dignity and provoking disorientation?

Unfortunately, neither doctors nor nurses, or at least not their official representatives, show much inclination to change their patterns of work, so that, for example, specialist services would come to the patient rather than the other way around. The NHS Institute, allied with the Dementia Challenge, has appealed for hospitals to become “dementia-friendly care environments”, but such gestures, without the backing of real resources or commitment by the key professions, rarely achieve much.

The fact is that general hospitals have become seriously dysfunctional places for the task of healing the confused elderly people who make up an ever-growing proportion of their clients.

Wider initiatives

The announcement of additional research funds in December came as part of a wider set of initiatives led by the Prime Minister, packaged for public relations purposes as the latest stage of the Challenge on Dementia, initially launched in March 2012.

Care agencies and others are being invited to sign up to the “dementia care compact”, a statement that in truth amounts to not much more than a promise to try to do better. Standard health checks for patients aged between 65 and 74 (why the upper limit?) should now always include questions about memory. Schools and youth projects are encouraged to become dementia-aware, although at this stage this part of the programme remains no more than a — relatively cheap — pilot project. In November 2012, the forget-me-not-flower was launched as a symbol to be displayed by committed organisations and worn by individuals who have signed up as “Dementia Friends”.

Much of the initiative consists of steps to developing more positive responses to dementia in the community at large, generating attitudes, it is hoped, that will not only lower stigma but, crucially, aid early diagnosis.

The Government, like its predecessor that produced the 2009 National Dementia Strategy, stresses the desirability of people knowing that they have dementia at as early a stage in its development as possible. But is early diagnosis really as valuable as policy makers claim, and, an even more significant question, do potential sufferers really want it?

Unlike cancer or other physical conditions, there is a not a great deal that can be done to stop dementia running its course. In reality, diagnosis is usually tentative, depending in the early stages of the disease on no more than ambiguous behavioural evidence, such as failing powers of memory or mild eccentricity. Far from being a key to services, being told that you or a loved one might have dementia often generates anxiety, which might eventually prove baseless.

Services and support

It would be different if a range of services immediately came into play following a diagnosis. The recent announcement promised “detailed information on services and support”, but in honesty not much help is available.

Three years ago, the Alzheimer’s Society published the results of a large-scale study showing that there had been virtually no expansion of services in the period following the appearance of the National Strategy. Since then, most local authorities have tightened service criteria even further so that only those in severe or critical need — a categorisation that rules out someone suffering only slight disorientation, minor memory problems or a gradual loss in quality of life — will be eligible for help.

Far from being a passport to assistance, early diagnosis often does no more than add to the burden. From the point of view of health and social care, it looks suspiciously like an excuse for the absence of really meaningful investment.

It is easy to be cynical about political initiatives, which often seem to be based more on words than on action. Extended research, more sympathetic environments, better diagnosis and increased public awareness all certainly have a role to play in tackling the misery dementia causes, but the biggest single development to improve the quality of life of both individuals and their families surely lies with better-skilled front-line care staff.

On this, the Dementia Challenge, like the National Dementia Strategy before it, is largely silent. The November statement included a passing reference to extra support for GPs and other primary care staff in diagnosing and helping patients to manage the condition, but there was no mention of the still-appalling skills deficit among social care practitioners.

Statistics published by Skills for Care last autumn show that less than half of workers in social care have NVQ 2, that 37% have no qualification at all, and that 30% have not even had a basic induction. Short ad hoc courses in dementia are no substitute for a proper professional programme to prepare the care staff that are in day-to-day contact with people suffering serious communication and cognitive disabilities for the immensely stressful task they take on. Until we tackle this issue seriously, no amount of warm words from politicians will lessen the suffering dementia causes.