The Frustration of Uncertainty
Alzheimer’s is a horrible and frightening disease in a multitude ways. Perhaps the most terrible aspect of AD is that there is no medication to alter the course of it and there is no cure. While there are trials and field studies being run throughout the country and the world, there is no firm answer for this disease in sight. As the 6th leading cause of death in the United States and with over 5 million confirmed diagnoses of the disease, it is critical that we all educate ourselves and dedicate our wallets to research for a happier Alzheimer’s prognosis.
One problem with many of the potential “cures” for Alzheimer’s disease has been the potential side effects. These are serious including heart attack and death, however, living with the disease for 2, 6, 10, or even 20 years, to me, is far worse. Current medication mask many of the behaviors associated with Alzheimer’s disease such as agitation and negative behaviors like anger and violent actions. Some researchers state that certain of these medicines slow the disease, but this is tough to evaluate since the length of time from diagnosis to death varies so widely. Also, other causes of death intervene so a coroner’s report may state “pneumonia” or “cancer” when it was Alzheimer’s disease that led a patient to be bedridden over time so pneumonia stepped in or cancer treatment with poor prognosis and lots of discomfort and added confusion forced because of less aggressive treatment.
A family physician or nurse practitioner is most likely trained to make an initial diagnosis based on feedback from the person with Alzheimer’s and the caregiver/spouse/family member who has seen signs of cognitive decline. An uplifting aspect of this is that we often feel safe with a known medical professional while a specialist may seem aloof and/or scary. However, a neurologist, especially one trained in Alzheimer’s and other dementias is necessary for a more complete diagnosis. Fear of the disease’s presence, fear of doctors, or fear of knowledge may each generate hesitation in making an appointment with a trained specialist. Overriding these fears is not easy but it is important to realize that the forgetfulness and decline may be due to myriad other problems and not the dreadful label of Alzheimer’s disease and this is best learned through a thorough evaluation.
Causes of mental failure may be stress and worry, an infection, an adverse reaction to an old prescription that no longer operates effectively or a new prescription whose side effects include confusion, or many other complications, many of which can be remedied quickly. If it is AD, early detection may help with keeping someone in a job or out of the driver’s seat or heading someone into the right service and service agencies available for care and assistance. Early onset individuals may receive local, state, and government benefits regardless of age based on a correct diagnosis. Caregivers can better educate themselves and prepare for long-term, home care, and services available. Knowledge is a powerful tool.
Early diagnosis also helps many families face the difficult discussion of life wishes and end of life wishes. Although this talk will be full of challenges, it also means that the person living with the disease can speak while able to think clearly and inform family of what should happen in the future when s/he can no longer speak for him/herself.