The Alzheimer's Digest: Alzheimer’s Detection and Care

By Virginia F.

My older (by one year) sister, Lucyann, now 60, was diagnosed when she was 58. She was a well-liked (by peers and students) professor, a great daughter and the best sister anyone could have. She cared for my dad during the last 10 years of his life, while she was still teaching and/or working at the university, until his death about four years ago.

During the last three years, we started to notice that she was angry a lot, particularly with my Mom, for whom she had absolutely no patience. She would not go to work and claimed headaches and/or migraines. She took a lot of naps and always went to bed early. She would spend a lot of time watching TV, the same happy-ending movies or tv shows, over and over. She was a great baker, but her cakes were definitely not the same. When she stopped paying her bills, we realized something was very wrong and we convinced her to see a psychologist. To make a long story short, the psychologist ordered a lot of tests and referred her to a neurologist, and there it was -- FTD. She retired from work and applied for Social Security Disability, which was granted about 9 months later. She cannot live with my mother, and my mother cannot live alone, so we had to separate them.

My Mom lives with my brother because she cannot live by herself anymore. Social Security is not enough to cover my Mom’s bills, so we are selling her house to pay for her care. Lucy has reached the stage in which she cannot be alone either, so she spends time in Puerto Rico, Tennessee and Massachusetts where some of my siblings and I care for her. We are still figuring her out. Her diet has changed -- sweets, soda, pizza and hot dogs have become her favorite foods – so she has gained weight and we had to upgrade her wardrobe. We never know when she will agree to exercise (mainly walk), but she will always agree to go shopping or to the movies. She has lost empathy and there are absolutely no filters, especially between brain and mouth. There is no secret she is able to keep.

I miss her phone calls, advice, hugs... I miss talking to her. I can’t figure out what she is thinking when she is staring into space, and I think that she is actually unable to tell me. I hope she is somewhat happy. I hope she feels safe and cared for. I hope she feels how much we love her.

Dementia Signage for the Home

This week's major medical event, the 2013 Alzheimer's Association International Conference (AAIC), highlighted a series of remarkable developments in the fields of dementia detection and care.
Here are a few key takeaways from the presentations:

Don't try to diagnose Alzheimer's online
Even a momentary memory slip can be enough to cause a middle-aged individual to ask themselves a question that they simultaneously want and dread the answer to: "Am I getting Alzheimer's?"
This thought may be distressing enough to compel some individuals to go online for reassurance. In addition to countless articles on the various warning signs of Alzheimer's and other forms of dementia, there are also an array of online evaluations that claim to be able to tell a person if they have the dreaded disease by asking a list of questions, or having users solve a series of problems.
This is a curious phenomenon, especially considering that no method of definitively diagnosing Alzheimer's while a person is still alive currently exists.

"Self-diagnosis behavior in particular is increasingly popular online, and freely accessible quizzes that call themselves ‘tests' for Alzheimer's are available on the Internet," says Julie Robillard, Ph.D., a postdoctoral fellow at the National Core for Neuroethics at the University of British Columbia and lead author of an analysis of 16 different online Alzheimer's tests.

Unfortunately for those seeking solace in the results of these web-based exams, Robillard and her team came to the conclusion that these tests were not only unreliable, but many of them operated on websites with questionable ethics policies. The reliability, validity and ethical practices of each test was ranked on a scale from one (very poor) to ten (excellent).

When it came to accurately identifying Alzheimer's in a particular user, three quarters of the tests failed to surpass a "poor" rating. Ethically, they were even worse off. Every single test evaluated by the researchers had some kind of ethical concern with regards to misleading explanations of test results, questionable privacy policies and failure to disclose conflicts of interest.According to Robillard, "Frankly, what we found online was distressing and potentially harmful. Freely accessible diagnostic tests that lack scientific validity and conform poorly to guidelines around consent, conflict of interest and other ethical considerations have the potential to harm a vulnerable population and negatively impact their health."

The takeaway: The only Alzheimer's diagnosis you should ever give credence to is one given by a trained medical specialist, such as a neurologist. Always exercise caution and good judgment when seeking medical information online. The National Institutes of Health (NIH) says you shouldn't trust information on the web unless you can identify who wrote and reviewed it, how recently the information was posted or updated, and the privacy policies of the site it appears on. You should also use common sense to consider whether the information seems outlandish. If a product or service makes the "miracle cure" claim, that's a pretty good tip off that the material isn't reliable.

An Alzheimer's diagnosis should be given with caution
An estimated 50 percent of dementia cases exist undiagnosed among the elderly population, according the Alzheimer's Association. The debate over the merits of seeking an early diagnosis of Alzheimer's disease is becoming more heated.

Experts have proposed introducing population-wide screening measures for dementia as a way to help remedy the problem. However, an analysis conducted by Carol Brayne and her colleagues at the Cambridge Institute of Public Health concluded that there was no concrete evidence to back up the alleged benefits, or the potential risks, of population screening for dementia among aging adults.
There are risks associated with trying to pinpoint something as tricky as the cause of an elder's dementia symptoms.

A separate review done by pharmaceutical giant Eli Lilly, and economic consultant, Analysis Group Inc., highlighted some of the financial challenges that can occur if an individual is diagnosed with the wrong type of dementia. Overall, 17 percent of individuals with vascular dementia, and eight percent of individuals with Parkinson's were found to have been previously misdiagnosed with Alzheimer's, according to study authors. Being misdiagnosed with Alzheimer's disease ended up costing these men and women, on average, an extra $14,000 per year in medical expenses.
(It should be noted that a company owned by Eli Lilly, Avid Radiopharmaceuticals, is the creator of the PET amyloid plaque imaging agent that is used to help identify Alzheimer's disease in individuals exhibiting signs of dementia.)

The takeaway: If your loved one shows signs of cognitive impairment, a trip to the doctor is probably in order. Particularly in the elderly, there are many different factors that can contribute to a cloudy mind including, medication interactions, urinary tract infections and vascular disease. A physician will be able to pinpoint the probable source of your loved one's dementia symptoms and determine how best to treat them.

A healthy lifestyle can always make a difference
The belief that, once an individual is diagnosed with Alzheimer's disease, there is little or nothing that can be done to slow the gradual decline of cognitive functioning they will experience is common, but may not be entirely accurate, according to a new study from the University of Pennsylvania, Perelman School of Medicine

Researchers discovered a critical link between poor brain blood flow, caused by hardened or blocked blood vessels, and dementia symptoms in people with several different types of neurodegenerative conditions. Individuals with Alzheimer's were found to be the most profoundly affected; close to 80 percent of people with the disease had damaged blood vessels in their brain.

Study authors maintain that people with Alzheimer's who take steps to manage cerebrovascular disease (i.e. eating a "heart healthy" diet, engaging in regular exercise, and treating high cholesterol and high blood pressure) could help stave off some of the cognitive effects of dementia.
The takeaway: Even if your loved one has been diagnosed with Alzheimer's, Parkinson's or another form of neurodegenerative condition, they may still be able to stave off some of the negative cognitive impact of the disease by adopting simple lifestyle habits such as a healthy diet and exercise program. As lead study author, Jon Toledo, M.D., put it, "The diligent use of existing treatments for vascular conditions and the implementation of campaigns promoting healthy lifestyles in young and middle aged people may have a positive impact on preventing or reducing dementia symptoms in Alzheimer's and Parkinson's disease."
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