I should preface this with an acknowledgement that I generally do not enjoy factual writing, however I do enjoy supporting and participating in Quests. Since what I'm experiencing is much like an unplanned trip to a place where the language and behaviours are foreign, readers who might not care about the subject matter are free to read something else. I'm wearing a heavy backpack and thinking on the fly, trying desperately to keep afloat as the waters inevitably rise, again and again, on a daily basis. I am in survival mode and trying to make the best of it. I am very careful regarding what I share, in hopes of maintaining as much of my husband's dignity as I can. He knows that I write about our trip and I have his permission, to the extent he understands the internet.
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According to a 2012 brochure called Basics of Alzheimer's Disease, an estimated 5.4 million Americans currently have the disease, with 13 per cent of those being over the age of 65 and almost 50 per cent being 85 and older. By the year 2050, it is expected that between 14-16 million Americans will have Alzheimer's. Because 70 per cent of those with Alzheimer's continue to live at home, millions more friends, relatives, and family members are impacted as well. (I am assuming these numbers come from reported cases, and that the actual number may actually be quite higher, as some people either don't seek aid, are in denial, cannot afford health care, or think of the disease as a social stigma, instead of a biological degenerative brain disease.)
Alzheimer's research is currently at an impasse with many once promising experimental therapies failing in late stage clinical trials. These setbacks have led all but a few major pharmaceutical companies to cut back on research and development, leaving both a void for an effective treatment and dwindling options for future drug development. What this means is that the nation, as well as the world, will be seriously unprepared for what has been coined "The Silver Tsunami", since the greatest known risk factor is age.
At this time, drugs developed specifically for Alzheimer's are few and all of them say in the written material that the drug does not cure Alzheimer's but may delay the progression of the disease. (From my limited personal experience, as well as what I hear from others in the Caregiver Support Groups, and two online blogs written by caregivers or interested family members "may delay the progression" amounts to delayed heartache and anguish for the person with Alzheimer's, as well as family members.) Off-label prescription drugs can ease some of the behavioural issues, such as anxiety or paranoia. However, once there is evidence of brain shrinkage that is not normal aging-appropriate, in addition to plaque deposits of beta-amyloid and tangles of another protein called tau, nerve cells in the brain will be destroyed, typically starting in the brain areas which involve memory. Once this starts, there is no reversing the neurological damage.
For a disease that was discovered over one hundred years ago, there has been little to no effective progress to eradicate the disease, much less prevent its occurrence. Some neuroscience researchers believe that being able to detect a person's risk of getting Alzheimer's through genetic testing, family history, or biomarkers "before the clinical manifestation of cognitive impairment has long been a Holy Grail...Biomarkers that can allow us to intervene early...could be a game-changer." In an Aging Study launched in 2007, 525 seniors were studied using a comprehensive cognitive assessment and bloodwork for five years, finding 10 specific phospholipid levels , that "if present in lower than normal levels, could predict with more than 90 per cent accuracy whether a person would develop Alzheimer's or the precursor called amnestic mild cognitive impairment." If and could being rather vague words. (Not too encouraging to know you're at risk, while there's still no cure in the foreseeable future, especially if you develop early onset Alzheimer's, even more difficult to document the number of cases.)
Doctors and researchers rely heavily on anecdotal behavioural symptoms supplied either by the patient, close family members, the primary caregiver, or a combination of all. Unlike cancer, it is a frustrating experience determining staging, as there are varied systems. According to the Alzheimer's Association brochure, there are seven stages, based on a system developed by Barry Reisberg, M.D., clinical director of the New York University School of Medicine's Silberstein Aging and Dementia Research Center. Other sources use a three stage model, however the wording tends to be similar and confusing. Stage 1: No impairment. Stage 2: Very mild decline, may be normal age-related changes or early signs of Alzheimer's. Stage 3: Mild cognitive decline, early-stage Alzheimer's may be diagnosed. Stage 4: Moderate cognitive decline, Mild or early-stage Alzheimer's. Stage 5: Moderately severe cognitive decline, Moderate or mid-stage Alzheimer's. Stage 6: Severe cognitive decline, Moderately severe or mid-stage Alzheimer's. Stage 7: Very severe cognitive decline, Severe or late-stage Alzheimer's.
Accompanying each stage is a list of possible behaviours, which often overlap or some are applicable listed under Stage 2, as well as some under Stage 3, then a few in Stage 6 on some days or several but not all in Stage 5 and Stage 6. Stage 7 symptoms are considered the final stage, in which the person loses the ability to respond to the environment, control movement, "swallowing is impaired", language stops or is limited to occasional words or phrases. Muscles beome rigid; reflexes become abnormal, and the person may lose the ability to smile. Small battles, small victories, moments of respite, random kindness, and the help of others who are also traveling in this NowhereLand make the journey bearable. No passport necessary, just make sure your carry-on includes a lot of patience, willingness to change and a sense of humor.
sources: Alzheimer's Association brochure 2012
Journal of the American Medical Association February 2014
Nature Medicine, Biomarker Points to Alzheimer's Risk March 2014
personal experience