The Involved Patient

The World Health Organization (WHO) can be thought of as a large elephant: slow to get moving but, once it starts to move, capable of clearing everything in its path. Historically, the WHO has focused on communicable diseases – tuberculosis, malaria, smallpox, etc. – but over the past decade it has become increasingly aware of noncommunicable diseases, recognising them as the largest threat to human health for the future. In April 2007, the WHO published a book entitled Neurological Disorders, which covered five major illnesses that in total account for 35% of Europe’s entire disease burden: Alzheimer’s disease, Parkinson’s disease (PD), headache, multiple sclerosis and epilepsy.¹

The WHO calculated the economic burden of each of these illnesses on society. The trajectory of brain disease means that within a few decades it will overtake cancer and cardiovascular disease to become the major global challenge. The estimated cost of these illnesses comprises inpatient treatments, outpatient treatments and medication, which are relatively easy to calculate; what has often been missing until now is the cost of social services and the cost to families. For PD, the greatest cost is in lost productivity (see Figure 1); even while people are still in their workplaces, they may be less productive because they are slower and are affecting those around them.

Societal Changes
Over the last 100 years, humankind has managed to almost double the average human lifespan. In 1907 in London, life expectancy was 45 years; it is now over 80 years. Moreover, a little girl born in Tokyo today has a 50:50 chance of living to be 100 years old. As life expectancy increases we will see more people living with PD for a very long time, bringing clinical presentations that neurologists have not seen before. The role of women has also changed immensely over the last 100 years. At the beginning of the 20th century, all of Europe was affected by two major wars, resulting in the deaths of millions of men, with many women left unable to find a husband. Therefore, maiden aunts and unmarried female cousins were part of the extended family: a structure of caring. This does not exist today. Birth rates across Europe are falling and there is a good career structure for women. This is not to say that women care less for their families, but rather that the family structure of today is very different from the family structure of the past. In the 1920s, a couple in their 80s had 44 female relatives, 14 of whom were not working outside the family. In 2007, a couple in their mid-70s had 13 female relatives, with only three not working outside the home environment. This trend is increasing.

These figures point towards a new cost to the healthcare system. A small UK study completed at the end of the 1990s aimed to examine the economic impact of PD by calculating the time and resources taken to care for someone with PD. The cost of a general practitioner overseeing care for someone with PD living in his or her own home was about £5,000 per year. However, the moment that person goes into institutional care, the cost increases to around £18,000 per year.2 There are many reasons why people have to leave their own homes and go into care, including falls, incontinence and loss of cognitive function. If these can be avoided or better managed, this can help keep costs down.

Nevertheless, these facts form the backdrop for the situation with PD: there is a rising number of elderly people throughout Europe and an increasing incidence of brain disease. This situation needs to be optimally managed in order to avoid the terrible distress and huge costs that none of us can afford.