Dementia and the Weaponization of hope

It is presumed there are over 100 types of dementia, in addition to Mild Cognitive Impairment (MCI) and most are understood to be overlapping in pathology, especially the common dementias of late-life. Hypertension and diabetes in particular influence blood vessels in the brain just as they do in the heart, making them susceptible to poor performance in supporting optimal cognition. Previous stroke, head trauma (large and small), past substance abuse and chronic diseases of all stripes, are risks for dementia. A laundry list of medications contributes to cognitive impairment – some reversible, some not. However, the best understood, and central focus of dementia research remains Alzheimer’s disease in its purest form. The term is so common in our lexicon that most Americans, and certainly most of my patients, use the term synonymously with any type of dementia. They fear it worse than cancer.

When scientists, well meaning, and arguably, grossly under-funded, declare “great progress” in Alzheimer’s disease we all take notice. The first wave of hope came with the cholinesterase inhibitors, such as Donepezil (Aricept), and later with Memantine (Namenda). Neither, despite extraordinary marketing and hype, have done much to slow the disease. Now, we have a few new waves of hope emerging. Important progress has been made in neuroimaging and cerebrospinal fluid biomarkers to identify who will progress from MCI to Alzheimer’s disease.  This precision medicine product will soon be marketed. There is also very exciting work looking at the inflammatory angle of Alzheimer’s disease, with human trials underway to test Leukine (a drug already approved to boost immune function) for its ability to reduce amyloid plaque build-up in those already living with Alzheimer’s dementia. By all accounts, we should follow this closely. But how do these advances really apply to us? Can they really improve our lives now?

Here’s the reason we shouldn’t get our hopes up just yet. Most dementias are not unadulterated Alzheimer’s disease. And even if we identify “pre-clinical” Alzheimer’s from biomarker studies (necessitating a brain scan and spinal tap) the results are only modestly better than clinical exam alone. There is also the ethical dilemma of knowing you have a higher chance than normal, but not guaranteed, of developing a disease for which there is no approved disease-modifying treatment or cure. Several investigational treatments, despite significant side effects, have been shown to reduce amyloid and tau proteins (the toxins implicated in Alzheimer’s pathology) on imaging studies. They have not yet been shown to reverse cognitive impairment or improve quality of life in the human beings with the improved brain scans.

When an industry declares “war” on a disease and promises “hope” of a cure, it splits us into winners (bravely fighting the enemy at all costs) and losers (giving up). This may be a helpful paradigm in soliciting funding, but it does not help those of us navigating the tsunami of dementia. It is a distraction from working on the things that can help now, like accessing caregiver resources, reducing unnecessary medications and avoiding hospitalizations. Living with, not fighting, the disease.

While there is exciting work going on and no doubt, personalized approaches being developed that may mitigate risk for select populations, nothing on the immediate horizon is going to un-do the current epidemic of dementia. But it is very hard to “un-see” headlines that read “Alzheimer’s breakthrough!” We would do better to avoid false hope and frame the dementia conversation in terms of the research going on to prevent and treat future cases of dementia, which is quite distinct from the concurrent urgency of caring for those living with dementia.