In Alzheimer’s research – triple-edged sword, the question was raised:
What is Alzheimer’s, really?
New Alzheimer’s Guidelines
The National Institute on Aging (NIA) of the National Institutes on Health (NIH) and the Alzheimer’s Association published four articles collectively titled: The National Institute on Aging/Alzheimer’s Association Diagnostic Guidelines for Alzheimer’s that attempt to answer this question. These articles expand the scope of Alzheimer’s by including pre-symptomatic, mildly symptomatic but pre-dementia, and dementia caused by Alzheimer’s.
Given the progress of research to date, scientific leaders are able to more confidently look at the disease at an earlier stage–even before symptoms become apparent.
Earlier awareness allows families to make plans.
When one knows the potential outcome of one’s health, life is lived more purposefully. What a gift (if we view this positively) to live life more abundantly and with greater meaning.
Knowing earlier allows for medical treatment that may delay the onset of the disease or its progress.
Those of us who help our loved ones with any of the ADLs (Activities of Daily Living–such as toileting, bathing, dressing) would surely welcome even a one-month delay. Even a 30-day delay in my father’s incontinence, would have saved my husband and me much stress while helping him to use the bathroom and cleaning up after him.
Given the benefits, there are more unanswered questions.
Even if researchers uphold confidentiality and don’t add their findings to your medical record; when you apply for new insurance, what if you’re required to disclose all-known health issues under penalty of perjury?
What happens when your spouse must take early retirement due to symptoms of Alzheimer’s and risks losing health insurance coverage?
Once the diagnosis is added to your medical record, will you be able to qualify for long-term care insurance?
Will auto insurers increase your rates because of your diagnosis, even though you are able to function at a high level?
Our health care system does not adequately support chronic diseases and illnesses-such as Alzheimer’s.
Beyond the insurance-related questions, there are questions about quality of life.
What happens in most situations when a person learns s/he has Alzheimer’s; especially, now that there’s still no cure?
Will such a diagnosis allow you to live a full life or tear you and your family apart, spiraling you into depression?
As noble as furthering research is and gathering preclinical diagnostic measures to advance research in Alzheimer’s, there are also questions about the sources of funding.
What are the sources of funding?
What are the funding sources’ underlying objectives?
I support the advancement of research and the potential cure or delay in onset of the disease through treatments.
It is expensive to get a drug to market–sometimes costing pharmaceuticals $100 million. On top of this, many drugs don’t even make it to the FDA review panel. A lot of money is wasted experimenting and trying to find safe and effective treatments for diseases and illnesses. Profits are essential to fund ongoing research,
Yet, despite supporting my father’s enrollment in a clinical trial, I feel compelled to ask the question–
Is expanding the definition of Alzheimer’s to include preclinical symptoms an effort to get people taking medications earlier, in order to help the bottom line of pharma companies?
Finally, the question I often ask myself:
Given that Alzheimer’s has stricken both sides of my family, what would I do differently if I was able to learn that I have the biomarkers (such as beta-amyloid or the tau protein) for Alzheimer’s disease?
What questions are you asking? Please comment below.