Why Many People Abandon Friends and Family With Dementia and Shouldn't

Several years ago, a close family member was diagnosed with breast cancer. The diagnosis was shocking, but the response was heartening. The oncologist analyzed the tissue sample down to its very receptors and provided a crystal-clear roadmap for treatment. An experienced and compassionate lay “navigator” was assigned to help guide my loved one through treatment. Friends and family rallied, making regular visits, cooking meals, holding hands, wiping tears, and, with time, becoming fierce advocates for disease awareness and research.

This response to breast cancer is part of an entire movement of support that has been embraced on all levels of society and has even engaged NFL players to bling themselves out in pink for one weekend of football every fall. It’s a model of how we should respond to any disease: wide-eyed with interest and support and dedicated to caring and curing.

Sadly, the picture couldn’t be more different for individuals suffering from Alzheimer’s disease and other forms of dementia.

Symptoms are insidious and easy to miss or ignore in early stages, and the diagnosis is never as certain as with many cancers since we do not routinely collect a sample of brain tissue to analyze. There is a dire shortage of specialists trained to manage dementia and even fewer in the pipeline. There are almost never volunteer “navigators” to support people through the many years of this disease. Precious few people, sports figures and celebrities have become advocates for promoting Alzheimer’s awareness and research.

All these deficits exist despite the fact that most people have a loved one or close friend with Alzheimer’s disease.

This disease affects and estimated 5.5 million Americans and its numbers are growing rapidly according to the 2017 Alzheimer’s Facts and Figures put out by the Alzheimer’s Association. It is the fifth leading cause of death after the age of 65, and reported deaths have increased by nearly 90% in the past five years. Currently, it is the most expensive disease to our economy, and yet the U.S. spends only a tenth of the research dollars for Alzheimer’s disease that are spent for heart disease and cancer combined.

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Why Many People Abandon Friends and Family With Dementia and Shouldn't