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The dementia community has a new advocate who is willing to talk about the difficult disease: actor Bruce Willis.  

The word "dementia" is associated with an image of a frail, elderly person living the twilight of their life in a care facility or with their loved ones, unable to provide for themselves. Yet with the recent revelation of Willis’ diagnosis of fronto-temporal dementia (FTD), we are reminded that dementia is not restricted to our elderly, but can afflict many of us for various reasons.  

The iconic actor’s wife is being vocal about the diagnosis and the paucity of treatment options available.  

IOWA WOMAN, 27, HAS 99% CHANCE OF DEVELOPING DEMENTIA: ‘I NEEDED TO KNOW’

Most adults shudder at the thought of being diagnosed with dementia, and even more struggle to cope with caring for someone who suffers from this debilitating, soul-crushing curse.  

Bruce Willis smiles on the red carpet wearing a black suit, white button down and blue patterned tie

Actor Bruce Willis is coping with a diagnosis of fronto-temporal dementia, as we are reminded that the disease doesn't always impact people who are elderly and frail. (Tolga Akmen/AFP )

Dementia is defined by a progressive loss of intellect, memory, and abstract thought and is often associated with behavioral and/or personality changes. Unlike other diseases which strip away the vital functions of organs such as our hearts or kidneys, dementia robs the afflicted of their most valuable and cherished memories, alters the very fabric of their consciousness and steals the loved ones we know away from us.   

Dementia is not just one disease, but rather a spectrum of causes which may ultimately result in this mental thievery. Some etiologies of dementia, such as Alzheimer’s, Parkinson’s, and vascular dementias, are the result of either inherited or naturally occurring degenerative processes.  

Other dementias may be the result of an infectious or malignant process such as meningitis, HIV, or sequelae from certain types of cancer. Dementias may also occur in younger patients who have survived a major brain event, such as significant or repetitive trauma or ruptured brain aneurysms.   

When dementia strikes, the onset is usually gradual. Occasionally a person will suffer a rapid deterioration in their cognitive abilities, though typically the early stages are subtle. Often the individual will chalk their forgetfulness to a busy life, or just part of "getting older." As memory issues progress, the individual may become increasingly unaware of their cognitive limitations and thus create tension within the family.  

Early on in the course of dementia, it may even be difficult for the treating physician to recognize the issue without the assistance of the patient’s loved ones. Certain dementias, such as the subset Willis reportedly suffers from, will manifest as personality changes and severe mood swings, posing an additional challenge for those caring for the patient. 

As a neurosurgeon specializing in the treatment of brain tumors, aneurysms and strokes, I have treated many patients who have developed precipitous neuro-cognitive decline, or dementia, as a consequence of their disease. Almost all my patients will ask if they possibly could develop dementia, and the sobering reality is that they in fact may be at risk.   

Some of my patients represent the pillar of health, they have been diligent with their diet and exercise and are constantly stretching their brains with intellectual activities such as reading and other cognitive exercises. Despite these healthy lifestyle choices, some people, like Willis, may develop the insidious disease that is dementia. The key to helping those with dementia is to recognize its onset and etiology as early as possible and seek treatment. 

The average life expectancy in the United States has increased by over 10 years since the 1950s, the decade in which Willis was born. Our bodies are living longer thanks to better preventative care as well as enhanced medicines and surgeries, and as a result, we have recognized the need to care for our equally aging brains.  

When dementia strikes, the onset is usually gradual. Occasionally a person will suffer a rapid deterioration in their cognitive abilities, though typically the early stages are subtle. Often the individual will chalk their forgetfulness to a busy life, or just part of "getting older." 

While early detection of dementia is essential, preventative care for our brains has become imperative. Avoidance of traumatic brain injuries through education and protective gear as well as concussion centers is now ubiquitous for our young athletes.  

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An abundance of research has been committed to developing pharmaceuticals which aid in decelerating certain dementias’ progression. And there are even neurosurgical procedures which can potentially improve the patients’ condition and delay even further deterioration.   

What was once considered an inevitable and irreversible part of aging is now recognized as a complex disease with various treatment possibilities that offer hope for our patients. But there is still more work to be done. As Americans are living longer, it’s time we talk about it.  

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