It is instinctive for humans to want a roadmap or some sort of guide to help get us through a journey or a difficult situation. Where is the next turn? What is the next step? It is a basic human thought pattern. We strive to know what lies ahead to help ensure that we are adequately prepared.
After we find out that a loved one has Alzheimer's disease (AD) or any other disease, it is only natural to explore the subject with some research. What can we expect and when can we expect it?
The national Alzheimer's Association (AA) has developed a very useful tool, or "staging system," to use as a frame of reference when coping with AD. The organization, however, will be the first to tell you that people are not programmed to follow these stages in a direct line. No matter how much we would like to "know" what stage someone is in, we cannot. One day, our loved one may seem like they are in stage five, and the next day they may seem more like a stage four or six. With that in mind, let's look at the stages as presented by the Association to better understand the progression of this disease.
Stage 1: No Impairment
Research now reveals that AD begins years, if not decades, before we have a clue that anything is wrong with ourselves or our loved ones. Genetic research and much more sophisticated technology will no doubt make this an important and focused area of study as we march into the future. But, for now, most of us will never know if we are in the beginning stages of the disease. Unfortunately, doctors can only diagnose probable AD due to the fact that a definitive diagnosis is only made through the post-mortem examination of brain tissue.
Stage 2: Very Mild Cognitive Decline
This stage may be indicate normal age-related decline or the very earliest signs of Alzheimer's disease. At this time, you or your loved one may have a sneaking suspicion that something questionable is on the horizon. A little more forgetfulness could be due to natural aging. But what about increased irritability when that forgetfulness occurs? Maybe we should chat with a doctor. Still, we are not likely to get the satisfaction of a definite yes or no either way. We will most likely hear something to the effect that it is just normal aging and perhaps we should do more crossword puzzles or take a class to learn a new skill. Oh yeah, and eat more chocolate. Chocolate has antioxidants in it that are good for the brain. That I can do!
Stage 3: Mild Cognitive Decline
This is a tricky point in the disease. The Association says that early-stage AD can be diagnosed in "some, but not all," individuals with the symptoms recognizable to family and others close to the person having problems. These symptoms include difficulty with words and names and a decreased ability to remember names of newly introduced people. Unusual performance issues at work or in social settings, reduced retention of recently read material, losing or misplacing items, and a decline in the ability to plan and organize are strong indicators of a deeper issue. This is especially true if all or a few of these symptoms are occurring simultaneously.
We can chat with a doctor and even request the cognitive tests at this point, but will they be conclusive? This is still a point where a diagnosis could be a tough call. If someone is very concerned, he or she should see a team of physicians uniquely qualified to diagnose dementia (and the often subtle differences between dementias) because this a point where some medications can help maintain better brain function longer into the disease. If we brush off worries too long and then decide to go for help, we may have lost valuable time. Still, this is not the time to panic. Schedule a general physical and perhaps see a qualified neuropsychologist that has experience with diagnosing dementia. Schedule any and all of the tests suggested by this expert and follow through with all appointments. Even then there is likely still room for doubt.
Stage 4: Moderate Cognitive Decline
This point in the progression is considered to be mild or early-stage AD and by now there are clear-cut indications of the condition that a careful medical examination can detect. This includes an obvious decrease in knowledge of recent events, both personal and concerning the local community or world. There would be a decrease in the performance of the standard test where they ask someone to count backward from 75 by sevens. Less scary, perhaps, is testing the person's capacity to perform tasks such as planning dinner for several people or balancing a checkbook.
Again, remember that it is important to know how well the person performed similar tasks at an earlier time. Some people do not do well with numbers or do not exhibit high levels of reading comprehension, but that doesn't mean dementia is present. They are looking for changes in these abilities. They conduct many different kinds of tests to account for the fact that some people struggle with certain things like math or organizational skills. These are consistent characteristics that have been with us all of our lives and do not indicate an illness or neurodegenerative condition.
Stage 5: Moderately Severe Cognitive Decline
Also known as moderate or mid-stage AD, this is where things become pretty obvious and serious. This is when the going gets rough for the caregiver and frustrations mount for most patients. A great deal of agitation occurs. People are aware that they are not functioning normally, and it understandably makes them angry and possibly even more confused. They often take it out on the person or people they feel safest with, such as their spouse or their adult children; those that are their caregivers.
The afflicted person will have major memory gaps, and people at this stage often need some help with activities of daily living (ADLs). Friends, this is the point where I would have to stop blaming right-brained thinking and concede that dementia is present.
People in this stage are often unable to recall their current address or telephone number. They may not remember where they graduated from school and can become confused about the date and even the current season. They have trouble with easier arithmetic such as counting backward from 20 by twos. They often need help choosing appropriate clothing for activities, occasions, and the season.
Although memory and daily function may be somewhat impaired in stage 5, people usually retain "substantial knowledge about themselves," such as their own names and those of their children. They also, generally, do not need help eating or using the toilet.
Stage 6: Severe Cognitive Decline
This moderately severe mid-stage is where really significant personality changes can emerge. That sweet person you used to know is suddenly combative, volatile and possibly violent at times. The Association says that at this stage, people lose "most awareness of recent experiences… as well as their surroundings."
Individuals in this stage can be very inventive when trying to outwit their caregiver. They are also prone to wandering, so keeping them safe can be a constant challenge. Patients may find ways to undo several locks on doors and enable a supposedly disabled car. Caregivers have been known to remove and hide car batteries to prevent this. Family members sometimes install an alarm system that is meant to alert homeowners if someone is breaking in, but use it to keep track of whether their loved one is trying to break out.
During this wandering-prone stage, the patient must be watched carefully. An unfortunate number of dementia sufferers have, literally, been stranded out in the cold. There are alarms, ID bracelets, GPS pendants and other forms of protection on the market that can help keep track of, or find, someone who is wandering.
Stage 6 is also a phase where, "(People) lose most awareness of recent experiences and events as well as of their surroundings."
They often do not remember their own histories and can forget the names of people they love (although they usually recognize faces). They need help dressing and toileting. This, too, is the stage where the sleep cycle is greatly disturbed for this person. Unfortunately, this means that the caregiver's sleep habits suffer as well.
Late day or early evening confusion called "sundowning" can trigger additionsl agitation and confusion. This phenomenon is thought to have to do with changes in lighting and/or activity changes that trigger the patient's need to do something important, but they don't know what. For example, they may have the impulse to go home from work or begin cooking dinner. Whatever the cause, this is a difficult time of day for many caregivers and dementia patients.
This is also the phase where the caregiver will witness increased paranoid or suspicious behavior. Hallucinations are not at all uncommon, and compulsive behaviors such as picking at skin or nails, tissue shredding, scratching and hand-wringing can occur.
At this point the patient may need to be moved to a secure environment where they are both stimulated and safe. This minimizes or completely eliminates the dangers associate with wandering and provides the caregiver with some needed relief from their 24/7 responsibilities.
Stage 7: Very Severe Cognitive Decline
This severe late stage of AD is the sad time when the patient's speech is often unrecognizable, there is general incontinence, eating is difficult or refused, and swallowing can be impaired. They usually need assistance and support with walking and even sitting. Falls can be a dangerous complication at this stage.
Families often become frantic when their loved ones refuse to eat. We, as healthy humans, get hungry. We think they must be starving and are compelled to try to provide comfort and sustenance through food. However, as the body prepares to die, it often does not want food. The organs are shutting down.
Patients also become increasingly weak and susceptible to bacterial infections such as pneumonia or urinary tract infections (UTIs). The adjustment to the final stage, which will bring death, is one where hospice can support the caregiver and family members, as well.
From stage 3 on, this disease is a mind-bender to deal with. Each stage puts new demands and strains on both family and professional caregivers. Education can help immensely throughout this process, so it is important for family members to conduct research in order to be as prepared as possible. Going through this alone should not be an option. Caring for someone with AD takes a super-human effort. This is a disease where community support can make all the difference. Be sure to get help for your loved one and get help for yourself.