The World Alzheimer Report of 2011 reported that we do not know the benefits of screening and early diagnosis of dementia. We all assume that people should be checked early for dementia, but we do not know whether there is an advantage to be diagnosed with the disease. There are definitely negative repercussions—losing your driving license, right to conduct professional duties, enter into financial agreements, and sometimes even the right to conduct your own affairs. It seems that once you get diagnosed with dementia then you are left to fend on your own with your loved ones if you have any.
There is a disconnect between diagnoses—the identification of the disease—and prognosis—forecasting the progression of the disease and suggested treatment, therapy or support services. In the field of dementia, as with other diseases especially cancer, there lies an expectation that an early detection brings better outcomes: You live longer with less pain. But the reality is very different. New emerging research shows that our ambition to help dementia patients because of an early diagnosis is failing miserably.
In a French study in 2015, Clément Pimouguet and his colleagues reported that people with dementia who had consulted a specialist at the start of their disease, died earlier than those who only saw their general practitioner (GP) or did nothing. Sadly they found that there was no difference between participants who visited their GP and those who went without any clinical care. Although those that went to see a specialist had much faster functional decline, their thinking ability was not much different from the other group. Why would seeing a specialist increase your likelihood of dying?
The lack of follow-up by the specialist was one of the reasons given for the higher rate of death. In 2017 Paula Rochon and Jeremy Matlow and colleagues in Toronto, Ontario, reported that half of 2,998 nursing home residents with dementia were still getting questionable medication in their last year of life. These medications might have had some benefit at the early stages of the disease but definitely have negative affect on the wellbeing of these confused patients. That a third of the residents did not see a specialist in the last year of life suggests that the medication was prescribed earlier on in the diagnosis and had not been reviewed since. Regular medication reviews will help to curtail unnecessary prescriptions.
It is likely therefore that too much and inappropriate medication is a culprit. In France only the specialist can prescribe drugs and this study found that half were prescribed antidementia drugs (46.2%); while the rest 12% prescribed antipsychotic drugs, 28% anxiolytic drugs, and 9% took psychostimulant. It is only when the diagnosis of dementia was vascular dementia and where some fo these drugs are not to be prescribed that seeing a specialist was found to be beneficial. Amelie Bruandet with the university of Lille, France and her colleagues found that with vascular dementia the shorter the delay between first symptoms and first visit, the longer patients survived. It could be due to medication, specialist do not prescribe medications that are killing dementia patients earlier.
It seems that we do not have any medication for dementia that is both effective and safe. In fact, all evidence points to dementia medication as being ineffective and in most cases dangerous. A conclusion that was arrived at by a 2014 study by two Dartmouth professors Steven Woloshin and Lisa Schwartz reporting for Consumer Reports. In addition to their costs—ranging on average $177-$400 a month—there was not one drug that they could recommend. Not one drug.
The logical assessment would be that since physicians have no medication to provide patients with dementia then following the Hippocratic Oath and “first, do no harm,” no medication should be prescribed. But a 2015 study of elderly patients showed that anticholinergic medications given to patients with dementia—including antimuscarinics, tricyclic antidepressants, and first-generation antihistamines—are associated with an increased risk for dementia. Drugs being prescribed have an established evidence to increase dementia. Sometimes this dangerous medication is given for non-life-threatening disease such as overactive bladder. Christian Meyer from the University Medical Center Hamburg–Eppendorf in Germany, and his colleagues reported that more than one-quarter of older Americans with overactive bladder are given a prescription for oxybutynin, and one-third are given a refill, despite the established link between this drug and cognitive dysfunction in the elderly. In a 2015 survey of Medicare patients with dementia more than one in four were being prescribed "potentially inappropriate" anticholinergics.
The overuse of prescription of medication among older patients is ageist. We need to address this final bastion of stereotyping. We know that younger people with a similar disease are more likely to get therapy. But there is another negative consequence of this lack of knowledge. Physicians become shy at making prognoses. Although diagnosis is relatively easily, they can easily say it is Alzheimer’s disease or Vascular dementia without any liability issue, and most do despite evidence that they are likely to be wrong. The patient is seriously sick, we can all see that. But once physicians start to define a timeline or sequence of how the disease will enfold, then they become exposed not only to the patient, but more importantly to the patient’s family, their medical institutional and legal liability.
In a short paper, Sonali Wilborn, and Navdeep Grewal, with Seasons Hospice and Palliative Care, Madison Heights, Michigan USA found that predicting mortality using current prognostic guidelines, fails in approximately a third of Alzheimer’s patients. Nicholas Christakis, a hospice physician takes it much further. He rightly laments the neglect of prognosis in medicine. Making a prognosis is messy and inaccurate. In 2000, he reports a study where only one in five timelines were accurate in forecasting death, more than half were over-optimistic while one in six were over-pessimistic. Being over-optimistic ensures that patients delay too long in sorting out their affairs.
The symbol of medicine is the rod of Asclepius—which has a snake coiled around a cane. It is carried by the Greek god Asclepius, a deity associated with healing and medicine. It is often confused with the caduceus which has a very different meaning.
The caduceus—depicting two snakes wrapped around a winged rod—is carried by Mercury the mythical messenger of the gods. Mercury is the guide of the dead and protector of merchants, shepherds, gamblers, liars, and thieves. In dementia care we might be confusing both the symbol and the objectives becoming the protectors of big pharma: merchants, gamblers, liars, and thieves. The abuse of older patients with dementia remains an unwritten chapter in the low point of medicine.
© USA Copyrighted 2017 Mario D. Garrett
Bruandet, A., Richard, F., Bombois, S., Maurage, C. A., Deramecourt, V., Lebert, F., ... & Pasquier, F. (2009). Alzheimer disease with cerebrovascular disease and vascular dementia: clinical features and course compared with Alzheimer disease. Journal of Neurology, Neurosurgery & Psychiatry, 80(2), 133-139.
Pimouguet, C., Delva, F., Le Goff, M., Stern, Y., Pasquier, F., Berr, C., ... & Helmer, C. (2015). Survival and early recourse to care for dementia: A population based study. Alzheimer's & Dementia, 11(4), 385-393.
Rait, G., Walters, K., Bottomley, C., Petersen, I., Iliffe, S., & Nazareth, I. (2010). Survival of people with clinical diagnosis of dementia in primary care: cohort study. Bmj, 341, c3584.
© USA Copyrighted 2017 Mario D. Garrett