How can we respond to the widespread inadequate understanding of dementia?
By Dr Victor Pace
Dementia is always in the news nowadays. Every day brings a new story: of poor care, of concerns about future numbers, of some new approach to treatment. From something that was never spoken about, it has moved centre stage, stemming from the combined realisation that many of us or our loved ones will develop it as we all live longer, and that the care people with dementia receive is grossly inadequate. This is difficult to remedy as care will become even more expensive as the number of dementia patients grows. Dementia has replaced cancer as the dreaded disease of the twenty-first century.
With increasing awareness of the condition has come a slow realisation that people die of and with dementia – and that the last few years of dementia are accompanied by severe physical frailty, which brings with it malnutrition, an increased risk of injury and infection, immobility and incontinence.
How can we respond to the widespread inadequate understanding of dementia? Firstly, we need to admit that many people die of dementia; it contributes to one in seven deaths in England. We need to move away from the tendency to give an optimistic gloss to this condition; with such a common illness, optimism soon wears thin, as most of us have direct experience of what dementia really means. Many years ago, no one spoke of cancer so as not to frighten sufferers with details of inadequate care and gloomy prognoses, but with openness came a focus on care as well as cure. Here, dementia still lags behind: the search for cures is certainly of top importance, but with such a multi-faceted disease, whose roots we now realise start many years before it first manifests itself, it is not likely we will have a general cure soon. It took a hundred years to improve cancer cure rates by half.
Therefore, we also need to concentrate on optimising dementia care. While most people with early or moderate dementia live at home, two thirds die in institutions. And of those living in care homes, four out of five have some degree of dementia. So our care home model must be brought up to date. We need to put right the disastrous changes made in the 1980s, when homes were moved out of the health service and lost the input of geriatricians and other health service staff. Specialists need to go regularly into care homes to educate staff. Currently we only respond after problems occur, and these are often identified late. And we need to reward staff for responding to their instinct to care. This means rethinking the way in which care homes are remunerated. In health the cheapest option is often far more costly, as it stores huge problems for other health services. Nothing is more expensive than something that does not work. So the current pressure for people to die in their own homes and care homes is right, but it needs to be matched with a transfer of funds to develop home care to meet the needs of people with dementia in the twenty first century. We need to respond to the fact that, because we all live longer, nursing home residents nowadays have more complex medical conditions on top of their dementia than before; and because society is more atomised, they are often more isolated or have families which need skilled support. The medical, nursing, and social care infrastructure needs to develop hugely without the homes losing the feel of being someone’s home.
A second obstacle in effective dementia care is that nursing, and to a lesser extent medical training, is divided into separate physical health and mental health strands. With a condition that so deeply affects both in interdependent ways, this will never work. Those of us who have worked with people with end stage dementia have seen many psychiatric disturbances go unrecognised by general nurses, or disturbed behaviour from pain and other physical problems being put down to psychiatric causes by mental health staff. Our model of training and care provision is not fit for purpose, and until we make it far more holistic, people with dementia will fall between the cracks. Meanwhile, close collaboration between primary care, old age medicine, old age psychiatry, and palliative care is needed. At the moment single specialty silos deliver care slanted to only one aspect of the condition. At the same time, not spotting complexity and responding inadequately could be hugely expensive for the economy, and the human cost would be incalculable.
So what can we all do in the meantime? We can think what we would want our care to be if we could no longer choose, set it down formally as an Advance Directive, and talk to family about our wishes. It is important to discuss the qualities of the care we would most want, so that relatives could find the best fit for us if we should ever be faced with dementia. And if we have relatives with dementia living in care homes, we should try to build personal relationships with the staff, believing that this will also translate into them having more human relationships with our loved one and others in their care. Because only by the human in each of us recognising the human in the other is there any hope that dementia care will become what it ought to be, based on skill and respect for the enduring dignity of the individual.
Dr Victor Pace is a consultant at St Christopher’s Hospice in Sydenham, London. He led a four year project looking after people with end stage dementia and edited Dementia: from advanced disease to bereavement, a medical text in the Oxford Specialist Handbook series.